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JDC-BROOKDALE INSTITUTE
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HUMAN DEVELOPMENT
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WHO Collaborating Center
for Research on
Health of the Elderly
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Aging m Developing Countries:
Sowce Materials an©] Highlights from ths Literature
JDC-Brookdale institute
December 1999
Developing.doc
December 5, 1 999
Visit our web site: www.jdc.org.il/brookdale :nYw intci nj7i
brook@jdc.org.il r'JIIOpYN inn ,(02)561 2391 :0j7D ,(02)6557400 :>0 ,91130 D'YUIT ,1 3087 td .ot'i'jn-nyiJ
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I.
Introduction
In this paper we have brought together some selected materials and
data from materials written about developing countries. We have not
attempted to assimilate or integrate and it should be viewed as a
source document.
According to the classification employed by the U.N., developed
countries comprise all nations in E.urope and North America, plus Japan,
Australia and New Zealand. All other countries are classified as
developing nations (Velkoff and Lawson, 1998). As of 1997, the
number of elderly over age 65 in developing countries stood at 220
million, representing 57% of the world's total elderly population (WHO,
1998).
II.
Commonalities among Developing Countries
A.
Dramatic declines in fertility
Asia and Latin America have experienced rapid declines in fertility since
the early 1970's, in Southeast Asia, many governments have
promoted low-growth population control policies, such as China's
one-child policy. For example, in China rates have fallen from 5.8
children in 1970 to 2.3 in 1990 (BOLD, 1999). Fertility rates remain
high in Africa, as can be seen from the table.
Year
1960-1965
Projected
2000-2005
Asia
6.7
Latin
America
6.0
5.3
2.9
2.7
World
Average
5
Africa
3
5.8
Source: Myers,1992
B.
Increasing life expectancy with concomitant increases in chronic
disease/disability
While life expectancies have increased in developing countries, they
remain particularly low in sub-Saharan Africa:
Life Expectancy at Birth in 1997
49.7
71.6
62.0
69.5
61.9
69.9
Region
Africa
The Americas
Eastern Mediterranean
Europe
Southeast Asia
Western Pacific
Source: World Health Organization, 1998
2
See Table 1 in the Appendix for life expectancies in selected developing
countries.
Country-specific rates of disability
Estimates of disability in various countries have been made using different
definitions:
o A study in Thailand (Thailand's Health and Welfare Survey of 1981)
found rates of self-reported well-being (58%) and disability (7%)
(Kinsella, 1 988).
o Mexico (Bialik, 1999)
Overall distribution of limitations due to disability:
20% over age 80 (10.4% total limitation)
1 1.5% age 70-79 (5% total limitation)
7% age 60-69 (2.5% total limitation)
o Indonesia - Morbidity and disability rate for those over age 60 is 9.2%
Wiadnyana, 1 999)-Source: Household survey of 1995
o Korea - (Chung, 1999) - data from survey conducted by KIHASA in
1998 based on 9,355 households of elderly over 65)
ADL measure included 6 activities: bathing, changing clothes, eating,
sitting, walking, and toilet use
31.9% had difficulty in one activity
3.5% had difficulty in all 6
IADL measure included 4 activities: buying living goods, telephone use,
use of public transportation and cleaning/laundry:
43.4% difficulty in at least one activity
10.2% difficulties in all four
Gender differences were larger in IADL (Twice as many women as men
have difficulties)
o India - rate of physical immobility of 5.5% for those over age 60.
Those having chronic illnesses were evenly distributed in rural and
urban areas. (Kumar) - countrywide data on health status of older
persons from National Sample Survey Organization study of physical
mobility and 7 chronic illnesses.
o Brazil - As cited in the United Nations Demographic Yearbook in 1993,
in 1981, 7% of those over age 60 considered themselves disabled.
Information on specific types and severity of disabilities is not available
in Brazil (Karsch and Karsch, 1999)
o A four-country survey in Korea, Fiji, Philippines and Maylasia (Andrews
et al 1986) included approximately 800 adults in each country age 60
and over. Disability was assessed by means of 10 questions related to
physical ADL and instrumental IADL. The activities included: eating,
dressing and undressing, caring for personal appearance, walking,
getting in and out of bed, taking a bath/shower, getting to the toilet in
time, traveling beyond walking distance, shopping and handling one's
own money. The percentage of those being able to accomplish all of
the activities was particularly high in the Philippines and Maylasia:
3
Malaysia
Philippines
Fiji
Korea
90% were able to accomplish all ADL/IADL
91 % were able to accomplish all ADL/IADL
82% were able to accomplish all ADL/IADL
71 % were able to accomplish all ADL/IADL
Instrumental activities of daily living were problems for a greater
proportion of people, but there was more variation between the
countries.
Andrews has conducted a later study in the Western Pacific, but we
could not relate to it as we do not have a copy of the final report
(Andrews, 1 993).
o Findings from a study conducted by PAHO in Costa Rica vis-a-vis the
Asia and Oceania studies conducted by the WHO suggest that as
developing countries attain relatively higher levels of life expectancy
and spcioeconoic development, gender differences in health and
disability begin to emerge akin to those of developed nations (Kinsella,
1988). While the PAHO studies provide detailed tables on ADL/IADL in
Guyana, Costa Rica, Trinidad/Tobago and Argentina, they do not
provide totals for men and women together or for the over 65
population, therefore it is very difficult to summarize the information,
however the detailed data are available by sex and age groups (PAHO,
1990).
Disability-free Life Expectancy
Disability-free life expectancy is the average number of years an individual
is expected to live free of disability if current patterns of mortality and
disability continue to apply. Calculations of disability-free life expectancy
have been made for 37 countries using the Sullivan method, which is
based on the observed age-specific prevalence of states of health in a
population at a given time to calculate the years of life lived in the various
health states at each age. These countries include 18 developing
countries (Ethiopia, Mali, Myanmar, Bahrain, China, Egypt, Fiji, Indonesia,
Jordan, Kuwait, Malaysia, Pakistan, Philippines, Rep. of Korea, Sri Lanka,
Taiwan, Thailand and Tunisia). Table 2 in the appendix gives rates of
disability-free life expectancies for several of these developing countries
and reference values for three developed countries. Table 3 contrasts
rates of healthy life expectancy in developed and developing countries.
Healthy life expectancy is defined as the average number of years an
individual is expected to live in a healthy state defined as the "favorable
part" of the distribution of perceived health status. However, according
to Robine, "direct geographic comparisons are still impossible. The main
reason for this is the great diversity between countries in the way
handicap or disability are measured. On the basis of available evidence
from many countries, and contrary to widely held beliefs, years with
severe handicap and/or disability do not appear to be increasing" (Robine,
4
et al. 1995).
Qiao (1999) has examined disability-free life expectancy, healthy life and
life expectancy free from disease in China on the basis of four surveys.
C.
Socioeconomic status
- Pension coverage is low in developing countries
Amount spent on public pensions a$ % of GDP (World Bank, 1994):
9.2%
OECD countries
2.8
Mid-East, N. Africa
Latin America/Caribbean
2.0
Asia
1.9
Sub-Saharan Africa
.5
- In contrast to developed countries such as the U.S., the major sources
of income for the elderly in developing countries are other family
members, particularly children, and their own employment.
Percentage of persons over 65 receiving income from various sources
Savings
Country
Work
Family
Pension/
welfare
—
—
U.S.
9
97
6
Argentina
26
8
74
—
Costa Rica
21
23
46
8
Korea
24
64
6
37
Singapore
85
16
18
-China
45
34
13
2
Philippines
63
45
13
—
—
—
Nigeria
95
—
—
—
Kenya
88
Source: World Bank, 1994
Rates of labor force participation among the elderly are higher in
developing countries, particularly among the rural elderly.
D.
Living Arrangements of the Elderly in Developing Countries
We have put together data on living arrangements from various
sources, as shown in Table 4. A table from the World Bank (Table 5) is
also included. A study conducted by PAHO (PAHO, 1990) in four
countries (Cost Rica, Argentina, Guyana and Trinidad/Tobago found
rates for those living alone and those living with a spouse similar to the
data in Table 4 for Latin American countries.
- Over 50% of the elderly in developing countries reside in
rural/agricultural communities
- The majority of elderly co-reside with one of more of their children
(see Tables 4 and 5).
5
- Males and the young-old are more likely to live with their children
than females or the old-old (Kinsella, 1 990)
- Urban elderly are more likely to co-reside with children (probably due
to shortage and high cost of housing) (Kinsella, 1990)
- Hermalin (1998) has cautioned that definitions of households are
constrained by census definitions of a dwelling, which may exclude
taking account of children living in a multi-family compound of in the
same neighborhood, both of which are very common in developing
countries, so the extent of residing with other family members may be
underestimated in some of the studies.
A study conducted by the Population Studies Center at the University
of Michigan examined living arrangements among the elderly in four
Asian countries: the Philippines, Singapore, Taiwan and Thailand
(Olfsted, 1 999). See Tables 6-8 for a summary of the non-formal and
material sources of support of the elderly in these four countries).
E.
Provision of Long-term Care
Rates of institutionalization are less than 1 % in most developing
countries (Kinsella, 1990).
F.
Provision of Health Services
many elderly in developing countries have no health insurance
coverage, e.g. in South Africa, over 90% of Blacks have no insurance
(Kinsella, 1999)
A study by Manton (1 987) confirmed the better health status of
urban versus rural elderly, due to problems in accessing and purchasing
health care services among the rural elderly.
The number of physicians per capita is low in most developing
countries (Kinsella and Gist,1998)
Country
Canada
Brazil
China
Mexico
India
Thailand
Indonesia
Kenya
Ethiopia
G.
Persons per physician (~1990-1995)
450
746
798
935
2,460
5,000
7,030
10,130
32,650
The situation of older women is particularly precarious.
As in developed countries, their husbands are older and women's
life expectancy is longer, so they have more years without a spouse
In some countries, women do not inherit the property on the death
of the husband or they inherit a portion together with the children and
other family (e.g. Uganda, India). Although the practice has recently
6
been outlawed in Uganda, a widow may be chased off her land by her
husband's relatives (Njuki, 1999).
in countries with patrilineal systems in Southeast Asia, elderly
women live with their son and must rely on goodwill of daughter-in-law
(Gore, 1992).
fewer years in the labor force and more employment in the informal
sector means that women have fewer social benefits and are more
likely to be poor.
H.
Fewer resources available.
The developing countries are aging at a much faster rate than occurred
in the developed world, therefore their populations will be older at a
lower per capita income. (World Bank, 1 994)
I.
Claim: The elderly as a priority for resource allocation in the public
sector.
According to the World Bank, "some argue that the drop in the child
dependency rate caused by fertility declines will free resources to meet
the needs of the growing older population. But careful analysis shows
that it won't. The extra private subsistence cost of each old person is
greater than that of each child. And as families and societies have
fewer children, they are likely to invest more in each child (World Bank,
p. 31). With respect to South Africa, Kinsella (1 997) notes that with
the health program's current emphasis strongly on maternal and child
care, there is mounting concern that resources are being shifted away
from needed geriatric care at a time when growth in the older
population is increasing." Also in Uganda the focus of social programs
is on education and health. As Njuki (1999) notes, "When families and
communities assume all caregiving functions, including financial
supports, there is little pressure on the government to develop social
welfare programs as we know them today. The ASEAN Economic
Bulletin notes that "when the elderly population emerges as larger and
more significant than ever, there is likely to be little scope for any
trade-off from the resources previously allocated to the needs of
children. Children will still outnumber the elderly by two or three times
and, in any case, given the established practices for care of the aged in
those societies, diversion of resources to any major forms of
institutionalized care for the aged is still unlikely to be the issue it is
becoming in Japan and in the small populations of the countries further
along that transition."
"In rural areas in low-income countries, informal systems may work
better than formal ones. Given limited taxing and administrative
capabilities, governments in Africa and Asia should be cautious about
ambitious formal programs, which might fail, after crowding out family
arrangements that function reasonably well." (World Bank, 1994)
7
J. Claim: The elderly will continue to play a reciprocal role in the family
which will reinforce continued family support
Hermalin and others claim that contributions which are facilitated by
co-residence such as child care and housekeeping will become more
important as women increase their participation in the labor force.
Hermalin's research in East and Southeast Asia has indicated that the
elderly and their families are adapting to new pressures and roles.
"Older women instead of being deferentially waited upon by their
children and children-in-law in accord with traditional practices, are
often involved in childcare and in cooking. But in return, the older
person or couple is often invited out to restaurants with the family and
may receive more income and gifts and better living quarters than
would otherwise be the case" (Hermalin, 1998). Hermalin also notes
that future cohorts of elderly will be quite different from those of
today's elderly in that they will be better educated and more able to
group together to advocate for improved services and policies. "The
characteristics of today's elderly and their needs and preferences, while
certainly meriting attention from policymakers and program managers,
may be a poor guide to optimum arrangements for the future as
successive cohorts with very different characteristics come along"
(Hermalin, 1 998).
II.
Variation among developing regions
The World Bank (1 994) has reviewed the situation in a number of regions
and we summarize its highlights.
A.
Asia
o Asia will have the most dramatic increases in the elderly population
over the next 30 years. By 2025 the elderly will reach 18% of the
population.
• There is a deeply embedded sense of filial loyalty which promote a high
level of co-residence (70%-80% of elderly co-reside with children) and
financial assistance on the part of children.
° The East Asian countries have the highest rates of growth and
urbanization but these systems are demonstrating resilience due to high
income levels, including more saving by the old and more monetary
transfers which substitute for co-residence.
• In countries in Southeast Asia with a patrilineal family structure (China,
Japan, Korea, Bangladesh, Northern India, Nepal, Pakistan), the
responsibility for aged parents rests with the son.
• Parental control over property and inheritance reinforces willingness to
care for aged parents.
• There is a great deal of outmigration from rural areas and poor
communication between urban and rural areas
8
° In the cities, the older are forced out of the labor force earlier and the
size of the extended family is shrinking.
B.
Africa:
B Families typically reside in large extended household with several
generations; elderly often receive informal support from their siblings
n Some community support systems have developed which stress
self-help and income-generating activities
° 75% of the population lives in rural areas. There is also a great deal of
circular migration - city dwellers often return to their birthplace when
they retire
° Informal support systems are under less stress than in Asia and Latin
America
B A pattern common in Africa is that of the skip-generation, where elderly
live with their grandchildren, due either to the move of the middle
generation to urban areas or to death from AIDS. Over 35% of
households in rural Zimbabwe were skip generation households (Velkoff
and Lawson, 1 998).
C.
Latin America
0 There is broad variation among countries, but Latin American is further
ahead than Southeast Asia in terms of life expectancy, urbanization and
industrialization
0 A somewhat lower rate (50%-60%) of elderly co-reside with their
children.
0 There are large inequalities in those countries with a poor indigenous
population and a wealthy immigrant population.
■ Formal support systems are more developed than in Southeast Asia and
Africa, however some are nearing collapse due to demographic
pressures and design weaknesses. (World Bank, 1994)
D.
Sources of Support
Based on Andrews (1 986) study of four countries in the Western Pacific
(Fiji, Korea, the Philippines and Maylasia), we obtain the following picture:
" 12% reported that they did not have a confidante
■ In most cases support was provided by either the spouse or a family
member and very rarely by someone outside the family
■ Assistance with disabilities is provided primarily by family members
" Among those with a disability, between 5 and 15% had no sources of
support. Help outside the family was very small
■ The major source of income is the family. In all four countries, the
family's contribution is greatest; work plays a role with a significant
minority. Pensions and welfare play a relatively small role.
9
E. Comparison between data from the Western Pacific study and
European countries (Andrews et al, 1986):
comparatively high rate who are married
little difference in employment rates
higher rate of smoking but less consumption of alcohol
percentage with accident, injury or chronic condition affecting daily
living tended to be lower
n much higher percentage live in households with 4 or more people
n the % reporting that they often fe.e! lonely were quite similar
"
n
n
°
III. Examples of approaches which have been developed to caring for the
elderly (World Bank, 1994; Gibson, 1992; Kinsella, 1990)
Housing programs:
" Maylasia - ground-floor public housing allocated to families with aged or
disabled members
° Singapore - families willing to live next door to elderly relatives receive
priority in housing assignments
D Cyprus - those living with older relative get priority in housing and can
apply for financial assistance to add an extra room
■ Hong Kong - priority allocation of public housing to families with elderly
members, units for single elderly; shared housing for unrelated elderly
(Kinsella 1 990)
Supportive services:
D Day care and counseling are provided throughout East Asia and
Southeast Asia
■ Thailand: multipurpose day center provide health care, day care, family
assistance and counseling
" Hong Kong and Singapore provide home help and nursing care at home
as well as day care centers
D In Angola churches, clubs and local collectives are used for day care
and other supportive services.
■ Argentina: c/ubs de ancianos provide social, health and recreational
services
Financial assistance:
“ Malaysia: Adult children who live with parents receive a tax rebate and
tax deductions are available for medical expenses and equipment for
disabled parents (these arrangements are being considered in Korea, the
Philippines and several African countries)
■ Singapore grants tax deductions to people who provide support for their
parents or other old people in the community.
■ Argentina - economic support is given to "substitute" families who
agree to care for a non-related elderly (Kinsella, 1 990)
10
Health care:
- China has developed an efficient system of rural health clinics which
have helped raised life expectancy above that in other countries with a
similar income (World Bank, 1994. But some countries which had
developed social welfare programs for the elderly are undergoing a
period of retrenchment. For example, in China - where 20% of the
world's elderly live - they are transferring responsibility for the elderly
from the social welfare system to t.he individual or the private sector.
■> China and Vietnam - more organization of services for the elderly as a
legacy of Communism, though this is breaking down
Institutionalization:
■> Old age homes have become common in countries where aging has
emerged as a concern, particularly in the more economically developed
countries in Southeast Asia - Taiwan (5%), Singapore (2.5%) and Hong
Kong (1.8%) (Kinsella, 1990)
° In China the State has undertaken the responsibility to provide
institutional care for childless elderly and there are now 700 homes for
the elderly.
■ Many nations have an official policy to avoid institutionalized
responses. The Malaysian government has stopped building welfare
institutions for the elderly and Costa Rica has also advocated this.
In some developing countries (Barbados, Taiwan, Philippines, Mexico)
the private sector is taking the lead in long-term care facilities, and this
raises issue of social equity as most elderly cannot afford private care.
(Kinsella, 1990).
Legislation:
" China has passed legislation which requires the family to care for the
elderly.
IV.
Main Problems Facing the Elderly in Developing Countries
(These problems are not unique to the developing countries, but are
more pervasive in light of rapid population aging and low level of
economic development in most of the developing countries)
A. Move of young adults to urban centers
Many authors have cited the migration of younger persons to urban
areas as a factor reducing the provision of family care and support to
rural elderly who are left behind. (Andrews, 1999; Kinsella, 1990)
B. Decline in number of children available to care of parents. In the
future, there will be fewer children to care for the elderly due to
migration to urban centers, lower fertility, and increasing numbers of
women joining the labor force. Modeling of kin availability has shown
11
that in many developed and some developing countries, kin support
networks for older people will shrink (Velkoff and Lawson, 1998).
Knodel (Knodel, Dhayovan and Siriboon, 1992) examined the potential
impact of declining levels of fertility in Thailand on family support for
the elderly. He found that the chance of living with an adult child is
only modestly jeopardized if family size is limited to two children.
Having only one child presents more serious implications. Substantial
reductions in the average number of children who will contribute money
or provide food and clothing to their parents can be expected as a
result of diminishing family size. However, the elderly with few
children may accumulate more assets during their working life and
provide their children with more educational opportunities
C.
Poor access to basic health services, particularly in rural areas
D.
Limited financial resources
* Inability to afford basic health services and and disability aides such
as walking aids, eyeglasses and hearing aids
* Poor nutrtion, primarily caused by poverty.
"Modernization and rising incomes may threaten family care of the
elderly, but they are less likely to threaten family [financial] support;
indeed, experience in the West suggests that the economic status of
the elderly is likely to rise as per capita income rises. Thus what may
prove to be a more serious problem in the poorest countries., is not
their modernization, but rather their continued poverty." (Mason,1992)
E.
Public services are poorly developed and often not targeted to those
most in need (Lechner, 1999)
F.
Lack of awareness of existing services and entitlements, particularly in
rural areas.
A survey conducted in Korea (Chung, 1999) found low awareness
among the elderly of many benefits and entitlements, including old age
allowances (which were expanded to include lower-middle income
elderly in 1998) and elderly job placement centers. Only 20.6% knew
about geriatric hospitals; only 18.5% knew about home help; and only
2% knew about short-term care (which is a relatively new service).
VI. Strategies to improve the status of the elderly
A.
Strategies to keep the informal system of care for the elderly from
breaking down (World Bank, 1994)
■ Avoid policy biases against agricultural sector, where traditional system
of informal supports works best
■ Improve rural/urban communication links
12
" Consider special programs for widows
B Try to have formal systems complement informal systems provide goods and services that supplement rather than substitute for
family care, e.g., community clinics, outpatient health facilities and day
care and social facilities.
n Target social assistance programs on people without adequate income
or without family transfers in order not to crowd out private transfers.
B. Gibson (1992) has suggested the following steps to improve the
health status of the elderly:
n develop geriatric components within community clinics and acute care
hospitals
n establish special health screening clinics
° improve access to health services for rural elderly, e.g., via mobile
health units
° train family members and other lay providers in care of the elderly, e.g.,
simple nursing skills and self-care
C. Andrews (1999) has formulated strategies to meet the specific unmet
needs of the rural elderly:
0 Improved emphasis on preventive and health promoting activities
■ Improvement of access by older persons to basic health care including
provision of outreach primary health services and some services
focused specifically on the needs of the elderly
B Improved provision of health aids for vision and hearing and basic
rehabilitative devices
■ Provision of continuing education (including health education) and
training opportunities for older persons
■ Recognizing the rural elderly as a resource and exploring ways for the
to contribute and be productive
D.
The Western Pacific Region of the World Health Organization has
outlined a strategy for a comprehensive health care program for older
persons (WHO, 1998), which includes the following elements:
" Health education, health promotion and disease prevention
■ Primary health care
■ Home and community-base care
■ Rehabilitation
■ Specialist meical services
« Mental health services
D Sheltered residential care
* Human resources development
* Roles for NGO's
■ Research, information and development
13
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ASEAN Economic Bulletin 9(1):4-21.
Njuki, C. 1999. "Poverty and Economic Development: Implications for
Work and Elderly Care in Uganda." In V. Lechner and M. Neal (EdsJ Work
and Caring for the Elderly: International Perspectives. Brunner/Mazel:
Philadelphia. Pp. 194-210.
Ofstedal, M.B.; Knodel, J. and Chayovan, N. 1999. "Intergenerational
Support and Gender: A Comparison of Four Asian Countries." Research
Report, Population Studies Center, University of Michigan.
Pan American Health Organization. 1990.
A Profile of the Elderly in Costa Rica. Technical Paper No. 29,
Washington, D.C.
A Profile of the Elderly in Trinidad and Tobago, Technical
Paper No. 22
A Profile of the Elderly in Guyana,Tech. Paper No. 24
A Profile of the Elderly in Argentina, Tech. Paper No. 26
15
Peng, D. "Rural Ageing in China." Institute of Population Research,
People's University of China.
Qiao, X. 1999. "Health Expectancy of the Elderly of China." Bold
(Quarterly Journal of the International Institute on Ageing, U.N. Malta)
9(2):5-12.
Robine, J.M., Romieu, I.; Cambois, E.; van de Water, H.P.A.; Boshuizen,
H.C. and Jagger, C. 1995. Global Assessment in Positive Health,
Contribution of the Network on Health Expectancy and the Disability
Process to The World Health Report 1995: Bridging the Gaps, World
Health Organization.
The Cuong, Bui; Si Anh, Truong; Goodkind, D.; Knodel, J. and Friedman,
J. 1999. "Vietnamese Elderly Amidst Transformations in Social Welfare
Policy." Research Report. Population Studies Center, University of
Michigan..
Velkoff, V.A. and Lawson, V.A. 1998. "Gender and Aging: Caregiving."
International Brief, U.S. Department of Commerce, Bureau of the Census.
World Health Organization. 1998. Guidelines for National Policies and
Programme Development for Health of Older Persons in the Western
Pacific Region.
World Health Organization. 1998. World Atlas on Ageing. Centre for
Health Development, Kobe, Japan.
Wiasnyana, I.G.P. 1999. "Health Service Delivery for the Elderly in
Indonesia." Paper prepared for Expert Group Meeting on Rural Aging, May
22-25, 1999, West Virginia, U.S.
World Bank. 1994. Averting the Old Age Crisis. World Bank Policy
Research Report, Oxford University Press, NY.
Yan, Lin. 1999. "The Main Influence on Population Ageing in China"
BOLD 9(2): 13-1 7.
16
Table 1 Life Expectancy by Region
Asia
Cambodia
China
Fiji
Hong Kong
India
Indonesia
Malaysia
Nepal
Pakistan
Philippines
Singapore
South Korea
Taiwan
Thailand ...
Vietnam
48.24
69.92
66.59
78.91
63.40
62.92
70.67
58.42
69.38
66.58
78.84
74.30
77.49
69.21
68.10
Latin America
Argentina
Bolivia
Brazil
Chile
Colombia
Costa Rica
Ecuador
Honduras
Mexico
Panama
Peru
Uruguay
Venezuela
74.76
61.43
64.06
75.46
70.48
76.04
72.16
64.68
72.00
74.66
70.38
75.83
72.95
Africa
Egypt
Ghana
Kenya
Morocco
Nigeria
Rwanda
Senegal
Somalia
South Africa
Zimbabwe
62.39
57.14
47.02
68.87
53.30
41.31
57.83
46.23
54.76
38.86
Source: U.S. Bureau of the Census, International Data Base, 1999
17
Table 2. Disability-free Life Expectancy
(The Average number of years an individual is expected to live free of
disability if current patterns of morta lity and disability continue to apply.)
AT AGE 65
AT BIRTH
Male
-•
LE
Female
LE
DFLE
LE
DFLE
Female
LE
DFLE
-
-
-
14.9
13.4
14.3
8.1
2.5
13.6
19.2
17.4
18.1
9.4
2.4
16.9
-
-
-
12.0
11.1
13.5
12.8
DFLE
Male
Developed market-economy countries
Canada, 1986 [6]
Finland, 1986 [7]
United Kingdom, 1991 [8]
*
Least developed countries
Myanmar, 1989 [9]
-
Other developing countries
CkivxO-'
Bahrain, 1989 [9]
Egypt, 1989 [9]
Fiji, 1984 [9]
Indonesia, 1989 [9]
Jordan, 1989 [9]
Malaysia, 1984 [9]
Philippines, 1984 [9]
Republic of Korea, 1984 [9]
Sri lanka, 1989 [9]
Taiwan, 1991 [10]
Thailand, 1989 [9]
Tunisia, 1989 [9]
13. o
H.q
K6
13.^
12.9
12.1
13.1
11.5
12.7
13.4
12.3
12.9
13.2
12.3
10.8
10.5
11.4
11.6
11.9
11.4
9.0
12.3
11.7
12.4
11.3
14.2
13.3
14.6
12.8
14.1
15.0
13.8
15.0
14.7
17.5
14.2
13.8
13.6
10.1
10.4
12.4
12.5
12.7
12.2
9.4
13.4
12.9
13.6
11.4
15.5
12.6
12.7
* In this table, life expectancy values for the United Kingdom slightly differ from the values in table 6-1. The latter are
based on the complete data set of the General Household Survey, while for the calculations of the values in this table for reason of international comparability - some respondents were excluded.
Sources in annex, some values are.available at other ages and/or at a smaller geographic level for Belgium, Japan,
United States of America and China. (Sec annex).
Source: Robine et al., 1 995.
20
Healthy life expectancy is the average number of years an individual is
expected to live in a healthy state defined as the "favorable part" of the
distribution of perceived health status.
Total life expectancy and percentage “healthy life expectancy
LE at age 65
20
Switzerland
1
Canada
19
-
18
-
„
Spam
Australia
b
n France
Holland
USA
UK
17
16
-
Malaysia
Sri Lanka
15
n
Bahrain
Tunisia
14
□
-
Egypt
□
13
□
□
Thailand
Jordan
Myanmar
-
□
Indonesia
03
0,4
0,5
0,6
0,8
0,9
% HLEatage 65
Source in annex, estimates not classified according to the WHR95 classification system; without any
explicit reference to the ICIDH .
Source: Robine et al., 1 995.
31
Table 4 Living Arrangements for the Elderly in Developing Countries
Other'
Lives
Alone
4
Spouse
Only
7
Children
60
29
8
2
30
60 1
2
6
1
83
10
11
12
72
5
Egypt
(urban) 3
Singapore
(urban) 3_.
Brazil
(urban) 3
Colombia 4
Costa
Rica4
Dom.
Republic4
Mexico4
Panama4
Peru4
Fuji5
Korea 5
Malaysia5
Philippines
5
15
13
66
6
3
3
88
6
29
19
33
20
5
6
9
9
85
84
1
1
9
7
84
1
7
11
8
2
2
6
2
16
14
10
10
14
12
7
76
74
82
84
79
80
86
1
1
1
4
5
2
5
Brazil 6
Korea 78
11
20
28
22
61
53
—
Country
Thailand
(rural) 3
Zimbabwe
(rural) 3
India
(rural) 3
Korea
(urban) 3
Extended
family 1
5
1 children and or grandchildren, other relatives)
2 High rate of "other" refers primarily to elderly living with grandchildren
in skip-generation households
3 Hashimoto, 1 988
4 Kinsella 1990 (data from 1975-1977)
5 Esterman and Andrews, 1 992
6 Ramos, 1992
7 Chung, 1 999
8 Other = other relatives and non-relatives
18
averting the old age crisis
Table 2.
Table 2.4 Living Arrangements of Older Persons, 1980s
Percentage ofpersons over 65 living
IndieWith children
or family
Alone
OtheP
Moth
Perec-
High-income countries
Australia
Canada (Quebec)
Japan
Netherlands
New Zealand
Sweden
United States
Average
7
16
69
12
—
—
13
30
21
8
33
39
40
30
62
63
23
56
—
—
57
23
29
52
Help
Part <
Cont
Perce
Help
Part <
Cont
Fathi.
Perec
Percentage ofpersons over 60 living
With children
or family
Alone
OtheP
Middle-income countries
Help
Part <
Co nt
Perce
Argentina
Chile
Costa Rica
Panama
Trinidad and Tobago
Uruguay
25
59
56
76
41
53
11
10
10
13
16
64
31
37
14
46
31
Average
52
11
37
China
Urban
Rural
Cote d’Ivoire
Guyana
Honduras
Indonesia
Malaysia
Philippines
Thailand
S3
74
89
96
61
90
76
82
92
92
3
5
1
2
2
5
8
6
3
5
14
22
10
2
38
5
17
12
5
4
Average
84
4
12
Help
Part <
Com
a. h
So:/
Low-income countries
— Not available.
Note: Averages are unweighted.
a. Includes persons living with spouse.
Source: Japanese Organization for International Cooperation in Family Planning
(1989); Pan-American Health Organization (1989b, c, d; 1990a, b); Ju and Jones
(1989); Keller (1994); Kendig, Hashimoto, and Coppard (1992).
Exp
percent
20 pert
(Natio
old, 33
on bot
suppoi
39 livii
cent in
cent of
as the}'
So <
tions a
life ch<
risk po
Table K Percent of older respondents receiving various types of non-formal support
from adult children, conditioned on availability
Singapore
Type of support
Philippines
Chinese
Malay
Indian
Taiwan
Thailand
% with no living (adult) children
% with no non-coresident child
4.5
8.4
4.1
15.9
3.2
17.0
7.2
22.4
5.0
11.0
4.5
9.1
Among respondents with 1+ (adult) child:
Coresidence with 1+ (adult) child
70.6
89.3
91.6
78.2
71.7
72.5
Support from non-coresident children, among
respondents with 1+ non-coresident child:
Quasi-coresidence
53.2
n.a.
n.a.
n.a.
28.3
64.7
Monetary support
- any amount
- substantial amount
86.6
46.4
n.a.
n.a.
n.a.
n.a.
n.a.
n.a.
n.a.
n.a.
88.1
69.1
Material support
88.7
n.a.
n.a.
n.a.
n.a.
89.2
Social contact
*
- weekly or more
- monthly or more
57.8
72.3
65.0
92.9
65.1
89.7
50.5
79.6
65.6
84.0
75.6
88.3
Unweighted N (total sample)
1311
3334
458
209
3626
4486
* For Philippines, Taiwan and Thailand social contact refers to visits in either direction; for Singapore, contact includes visits, phone calls or letters.
n.a. = not available
16
Table 7 Percent of non-coresident children providing material support by marital status, location, and sex
Any money
Marital status
Single
Ever married
Location
Adjacent
Dwelling
Same
Community
Same region/
*'
Province
Elsewhere
Sex (observed
values)
Son
Daughter
Sex (adjusted
values)
Son
Daughter
Substantial money
Food/clothes
Philippines
Thailand
Philippines
•
Thailand
Philippines
Thailand
65.9
56.7
63.4
60.9
34.3
15.3
49.7
31.3
59.5
63.1
61.5
73.5
55.0
60.0
9.9
23.9
71.6
81.0
55.7
53.7
10.9
20.1
67.1
75.9
55.5
61.3
14.2
31.6
60.8
72.6
60.9
65.9
26.1
45.9
57.1
66.3
57.3
58.4
58.5
63.7
17.4
18.5
31.9
34.4
61.8
62.9
67.9
76.5
57.5
58.4
58.4
63.9
17.7
18.1
31.5
35.0
61.5
63.6
68.3
76.3
21
Tablet1. Percent of non-coresident children providing social support (visitation)
by marital status, location,, and sex
See parent at least monthly
Marital status
Single
Ever married
Location
Adjacent
dwelling
Same
community
Same region/
province
Elsewhere
Sex (observed values)
Son
Daughter
Sex (adjusted values)
Son
Daughter
See parent at least weekly
Philippines
Taiwan
Thailand
Philippines
Taiwan
Thailand
31.0
53.0
56.3
67.6
38.6
62.8
15.0
36.2
31.1
43.5
16.2
45.7
n.a.
97.3
96.9
n.a.
92.8
94.6
89.3
97.8
92.6
75.5
88.9
83.3
61.4
90.1
67.9
28.0
68.2
34.9
18.0
50.5
21.0
6.0
22.5
4.8
52.3
46.7
69.6
64.7
58.0
62.7
35.9
30.0
47.2
39.5
39.6
45.7
55.1
53.7
68.9
65.4
59.5
61.6
39.3
36.8
45.6
40.7
41.9
43.8
n.a. = not available.
22
, Profile of the
X WHO South-East Asia Region
o 10 countries of the Region
Bangladesh, Bhutan, DPR Korea, India,
Indonesia, Maldives, Myanmar, Nepal,
Sri Lanka & Thailand
■ 3 countries with >100 mil. populations
> 5 are least developed countries
■ One-quarter of the world’s population
» 40 % of the world’s poor
■ Gaps between “haves” & “haves not”
Demographic Transition
» Increase in life expectancy at birth
■ “Mature societies” to “ageing societies”
with an ageing population > 7% by the
turn of the century
■ More people will be at higher risk of
developing chronic & debilitating
diseases associated with old age
5
Home Care Initiatives in the
WHO South-East Asia Region
By
Dr Duangvadee Sungkhobol
Regional Adviser for Nursing & Midwifery
WHO/SEARO
Global Burden of Diseases
- Carried by the Region
■ 40% of world’s maternal deaths
■ 41% of world’s deaths due to infectious
diseases (7 million)
■ 40% of world’s TB cases (3.5 mil.)
> 25% of world’s HIV cases (8-10 mil.)
■ 68% of world’s poliomyelitis cases
> 72% of world’s leprosy cases (1 mil.)
■ 30% of world’s blindness cases (11.7 mil.)
J
I The Need for CommunityX: and Home-based Care
■ Shortened hospital stays
■ Cost-effective care
■ Home is the setting of choice for
receiving care
■ Ensuring accessibility of care to the
poor, vulnerable & disadvantaged
■ Ensuring a continuum of care
jy Epidemiological Transition
Persistent, emerging & re-emerging of
communicable diseases
Increase in chronic noncommunicable
conditions
Double burden of diseases
1
...The Need for Communityand Home-based Care
Elderly Population
■ At risk from ageing related diseases and
disabilities & changing life styles
■ Elderly population
= People with disabilities
- Individuals with chronic diseases
» Other individuals
» Arthritis, high BP, heart diseases & stomach
ulcer along with visual & hearing impairments
are common illnesses
■ 50-80% of blindness cases in SEAR (11.7 m.)
are caused by cataract
■ Functional and economical dependent
> Some elderly live alone 81 no one to care them
People with Disabilities
5,
Population
> Prevalence of disabilities ranges from 3-10%
of the total population
a
11.7 million blind (30% of world’s total)
with a cataract backlog of 8.2 million cases
o 1 million leprosy cases (72% of world’s
leprosy cases)
a
Specialized services for the elderly are
inadequate
a Health personnel in community and
PHC levels are not adequately prepared
a
a
Estimated 5-10 severe mental disorders
per 1,000 populations in various countries
Low percentage of elderly seeking
professional health care
/o
Individuals with Chronic Diseases:
i? HIV/AIDS
> 5.5 million HIV infected persons (18%
of world’s total)
a AIDS cases less than 5% world’s total
a Persons with high risk behaviors &
general population
a AIDS cases will continue to increase
a Up to 2 million cumulative cases of
AIDS by the year 2000
a
..People with Disabilities
Accidents & Injuries on the rise
a 9-10% of total mortality in India
> Injuries rank 5th in Myanmar and 4th in
Indonesia as causes of morbidity
Many injuries lead to permanent
disabilities as trauma care is not well
developed in most countries
2
Individuals with Chronic Diseases:
^Tuberculosis
, Individuals with
{ other Chronic Diseases
a 39% of world's 3.8million reported TB cases in
1996
> CVD, CA & DM are leading causes of
morbidity & mortality in several
countries
a
CVD, CA & DM will continue to increase
a
Estimated 30 million DM cases at
present, 80 million by 2005 - the
highest among all WHO Regions
a 1/3 of global deaths each year -1 million
a DOTS coverage was low - 12% of the total TB
population
a TB is the most life-threatening opportunistic
infection associated with HIV in the Region
■ 56-80% of AIDS cases In Thailand, India, Nepal 8t
Myanmar
■ 40% of AIDS deaths In Asia
13
Issues in Home Care:
Changing family structure
a
a
Is- Other Individuals
Urbanization
Shift from extended to nuclear family
Inadequate family support system
Young & productive family members migrated
to cities leaving behind elderly & children
a Paid professional & supportive workers
for home care
a
a
Recently discharged patients
a
Pregnant women
a
Mothers & babies during the postpartum
a
Children under 5
a
Population at large
It,
Issues in Home Care:
g Community participation in health
Issues in Home Care:
.]*: Roles of women
a
Political commitment in all countries
a
Health volunteer scheme in all countries
a
Health Volunteers
Women in the Region are main providers of
health care within the family
a Women as health volunteers
. to galvanize community for action
a
. promote individual and family self-care
a
Only female health volunteers are
acceptable in some societies
a
Increased women’s participation in the
work force
.
Exposure to occupational hazards and injuries
.
Double burden of responsibilities
.
Insufficient support system
3
Future Plan
a Development of a manual to promote
family and community practices for child
health
a Promotion of community-based care for
mental health and substance abuse
.Future Plan
■ Development of a community-based
maternity care model
■ Development of models to strengthen
the role and enhance productivity of
health personnel in community- and
home-based care
5
Initiatives Undertaken:
Care of the Elderly
... Initiatives Undertaken:
X Care of the Elderly
□ Existing community-based care for the
elderly
. Family care
» Primary health care for the elderly
. Homes for care of the aged
» Other community-based elderly support
activities
Initiatives Undertaken:
y Community-based AIDS care
> Creating awareness
a Supporting formulation of policies, strategies
& programmes with comprehensive AIDS
care an integral part of the PHC system
a supporting the provision of comprehensive
care
a Adapting WHO Home-care manual
a supporting the training of health personnel
and community members
■ Creating awareness among policy
makers and general public
■ Collecting and disseminating information
on socioeconomic and health status of
the elderly
• Supporting formulation of national
policies, strategies & programmes
■ Improving health worker’s knowledge &
skills
Initiatives Undertaken:
X Community-based rehabilitation
Strengthening public awareness
Collecting and disseminating information
on disability situations
a Supporting formulation of national policies,
strategies & programmes (with CBR as
integral part of PHC)
a Strengthening infrastructure and referral
facilities
a Supporting the training of health workers
a
a
d I
Future Plan
s Other Initiatives Undertaken
..............................................
Development of a model for community
based elderly care
a Development of a model for prevention
and control of major NCDs
a Development of health promoting
workplaces
a
a
Promotion of self-care
a
Strengthening of community health
nursing
a
Promotion of community- and home
based midwifery care
4
Ce>Hp 4-3-5
^nternat’ona* Social Security Association
^>ss^
ISSA Conference
Demographic trends and globalization: Challenges for
social security
Bratislava, Slovak Republic, 14-15 October 1999
Hearth: New requirements for long-term care
Health: New requirements for long-term care
Xenia Scheil-Adlung
Programme Manager
International Social Security Association
There is increasing concern in many countries that social security in the area of long-term care
faces great new challenges: costs are rising uncontrollably, there are not enough beds in
residential care homes, and opportunities for care at home are non-existent or quite inadequate.
Moreover, it is likely that given the global ageing of the population, the demand for care of
the elderly will increase further in the future.
These and other reasons have led to reforms of social insurance in respect of dependency in
many OECD countries in recent years. The starting point for new approaches to care policies
in most countries is controlling costs in the health systems, which seek to exclude care
provision from intensive medical care. At the same time, conceptual and administrative issues
have been raised, which require old-age provision to be coordinated with other areas of social
security.
Which concepts and strategies are regarded as able to control the growing care needs through
the health system, other social security systems or private provision? What should be the goals
of the new care policies? How can they be achieved through new forms of organization,
financing methods and services? What are the core political issues that need to be clarified
through the introduction of new rules on care?
The following report addresses these issues. First the causes of the worldwide increase in
demand for care will be investigated, with emphasis on the demographic and socio-economic
context. Next, new political ideas and strategies to overcome the problems of care provision
will be explored and illustrated taking the example of Germany’s care provision.
1.
Causes of the rising demand for care
A comparison between the population indicators for 1950 and 1998 in most countries shows
a shift from high mortality and birth rates to lower mortality and birth rates.1 This shift,
frequently described as the ageing of the population, is faster in the industrialized countries
than in developing countries and is the most discussed demographic trend of the 21st century.
Xenia Scheil-Adlung
2
Greater life expectancy and falling birth rates mean not only that the absolute number of old
people is rising, but also that the over-65 age group, especially people who survive past 80,
is growing faster than other age groups. Thus, if past trends continue, the majority of old
people will be women, as women’s life expectancy worldwide is higher than men’s.
A comparison of the life expectancy of men and women in 1950 and 1998 in selected regions
of the world can be found in Table 1.
Table 1.
Life expectancy at birth in selected countries, 1950 and 1998
Region/Country
Africa
Egypt
Ghana
South Africa
Men
Women
1950
1998
41.2
40.4
44.0
60.1
54.8
53.6
43.6
43.6
46.0
64.1
58.9
57.8
66.0
60.4
56.0
49.2
72.9
70.9
73.5
68.6
71.7
65.1
58.6
52.4
79.6
78.3
78.5
74.8
66.7
59.6
39.3
77.0
76.9
68.3
71.8
63.1
42.3
83.0
83.3
71.1
64.6
68.9
63.7
63.4
62.0
69.9
59.3
73.8
73.6
74.6
75.8
74.1
76.5
66.5
68.5
71.5
69.4
66.7
67.0
72.6
63.4
80.3
79.1
82.6
81.0
80.7
82.0
75.4
1950
1998
America
USA
Argentina
Costa Rica
Mexico
Asia
Australia
Japan
China
Europe
Germany
Denmark
France
Greece
Austria
Sweden
Hungary
Source: US Census Bureau, International Brief: Gender and Aging, Washington, October 1998.
The above table shows clearly that life expectancy in the observation period of 48 years in all
the developing and industrialized countries examined has risen, sometimes dramatically, as in
China by 28.8 years (women), sometimes less markedly, as in the USA by only 6.9 years
(men).
It is also clear that the highly industrialized countries of Asia and Europe have the oldest
population, while the youngest population is in Africa. The pace of ageing appears most
pronounced in developing countries, especially Asia.
Xenia Scheil-Adlung
3
Equally significant for the future development of health systems and care provision is,
however, not only demographic ageing as such, but also the extent to which increasing age is
linked to impaired health and the extent to which traditional carers (daughters, wives) remain
available.
New research2 shows that the extra years of life gained by old people are largely without an
increase in impairment of health. Thus, 65-year-old men in Switzerland can expect to live
79 per cent of their remaining years without any disability. For women, the percentage is some
76 per cent.
Disability-free years of life
s
Men
|
|
Women
Source: J. Robine; I. Romieu, op. cit., 1993.
Only in Australia can women expect to live a greater part of their remaining life without
disability than men.
In the other countries, women must expect to need care earlier than men.
Alongside great age, its rapid rise and the feminization of the elderly population, a
characteristic of the group of (potential) dependants in developing and industrialized countries
is the increasing decline in the care capacity offamily members. This trend is due to:
•
•
•
fewer children;
male mortality; and
more women working.
Xenia Scheil-Adlung
4
Correspondingly, an individualization3, i.e. living in single-person households rather than
multi-generation families, can be seen.
The trends described above mean not only that needs for care will rise further in the future,
but also that there is a necessity of developing new approaches. Thus, the decline in the care
capacity of families should result in the need to seek new formal and informal forms of care.
The simultaneous pressure on social security budgets, and especially the health system, thus
calls for special expert and political imagination.
2.
New political approaches and strategies to long-term care of
the elderly
In the past, the predominant feature of care policies in many countries was a proliferation of
regulations and arrangements, frequently marked by a lack of coherent national care policies.
Despite many individual laws, only in a few countries was there an integrated solution to
problems that can be found in other areas of social security such as old age, illness,
unemployment.
This may be due to the fact that dependency must be regarded as a relatively new risk and,
from the social security standpoint, falls in the gap between the traditional risks of old age,
illness, accident and disability. Depending on the social security system, it may also involve
social services, welfare and private support services. This led to a plethora of regulations and
jurisdictions at various administrative levels which has made a comprehensive solution to the
problem, such as existed in the past in only a few countries, e.g. Israel and the Netherlands,
much more difficult.
Only as a result of the constantly rising costs of health provision and national social welfare
regulations did there come a political will to tackle the health-care problem in a systematic way
and to undertake a businesslike and political reassessment of the risks related to care needs.
An international comparison of expenditure on care services as a percentage of health
expenditure in 1994 shows that it ranged from 18 per cent in Denmark to 10.4 per cent in
Belgium4.
The changes in the period 1980 to 1994 range from an increase of 6.6 per cent in Belgium and
a slight fall in expenditure in Denmark, Canada and the Netherlands, as can be seen from
Table 2 below.
Xenia Scheil-Adlung
5
Table 2.
Care services as a percentage of health expenditure in selected countries
Country
1994
Change 1980-1994
Australia
14.0
0.9
Belgium
10.4
6.6
Canada
11.9
-0.6
Denmark
18.0
-0.1
Netherlands
13.9
-0.5
United Kingdom
17.2
1.4
USA
11.5
1.4
Source: M. Schneider, op. cit., p. 158.
Cost analysis shows that mistakes have been made in the development of care provision, such
as occupation of beds in medical hospitals with long-term care patients, as special care
facilities are either inadequate or non-existent. This means that services are provided by highly
paid nurses and doctors, when the same services could be performed by less-qualified staff,
or volunteers, such as help with every day bodily care.
To avoid this trend becoming more acute, in recent years several OECD countries have
brought in reforms which have partly led to comprehensive and coordinated care solutions.
Fundamental health system reforms were carried out in Europe (Germany, Austria and
Luxembourg).5 Other countries, such as the United Kingdom, have introduced or extended
targeted help for those in need of care or have considered doing so, e.g. France.
Even some highly industrialized countries in Asia have introduced new regulations on care
provision or, are considering doing so. Thus, reforms have been carried out in recent years
in Australia and New Zealand. In Japan6, it is intended to bring in a new comprehensive
reform in the year 2000.
An interesting aspect of the Japanese reform model is that it is a social insurance solution. As
social insurance is not often encountered in Asia, the following is a brief outline of the new
system:
The insurance institutions in Japan are the local authorities. The financing comes partly from
the beneficiary’s own contributions and partly from the Government, i.e. the State, prefectures
and local authorities. Benefits start from age 65 and include home and residential care. The
services can thus be delivered by both private and commercial providers.
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6
Table 3 sets out the basic new regulations and some well-established ones, in selected
European countries.
Table 3.
New and existing regulations for long-term care in selected European countries
Care provision
Country
Financing
Private
alternatives
Austria
Since 1993, cash benefits under various
social welfare headings, which can be
exchanged for services in kind
Taxation and
contributions
Can be paid for
using cash benefits
France
For some years, experiments with
services in kind and cash benefits
National Budget, social
welfare
Limited
availability
Germany
Since 1995, social care provision covers
home care and institutional care,
services in kind and cash benefits
1.7 per cent of income
of employees and
pensioners
Care provision
component
Japan
From 2000, dependency insurance to
cover outpatient and residential care
through benefits in kind
Contributions,
personal contributions,
government budget
Care provision
component
Luxembourg
Since 1998, care provision covered by
institutional, formal and informal care,
mainly through services in kind, that can
be exchanged for cash benefits
45 per cent of
expenditure from the
National Budget, special
contribution by the
electricity industry,
1 per cent of total
income of insured
Netherlands
For a long time, covered under the
Exceptional Medical Expenses Scheme
Contributions by
employers and selfemployed
Norway
Medical and long-term care covered by
±e existing system
Taxation
United
Kingdom
Under the National Health Service
Taxation
Development of
private ventures
Source: Jozef Pacolet, Ria Bouten, Hilde Lanoye, Katia Versieck. Social Protection for Dependency in Old Age
in the 15 EU Member States and Norway, Leuven, 1998, and own research.
Targets of reform
At the forefront of these solutions there are general targets which also affect other health
reforms, especially cost control through the involvement of market elements.7 In addition,
proposed goals specific to care provision can also be found in the reform proposals.
Xenia Scheil-Adlung
7
Frequently found reform targets8 for care provision in OECD countries are shown in the
following table.
Table 4.
Leading care reform targets of OECD countries
Benefits and services
•
•
•
Enhanced quality of benefits and services provision
Increased efficiency in benefits and service delivery
Priority to out-patient services over in-patient
Expenditure
•
•
•
Cost control
Contribution/tax ceilings
Reduced financial burden on health care and insurance and social welfare
Individuals
•
•
•
•
Prevention of excessive demands on benefits and services
Prevention of dependence on social welfare
Prevention of excessive costs to individuals
Prevention of poverty
Institutions
•
•
Relief of acute medical services
Expansion of long-term care infrastructure
Thus reforms will be decided both in services and expenditure as well as on the individual and
institutional level.
The overriding desire of many politicians to relieve the burden on health and social welfare
systems is reflected in the following goals: cost control, reduction in the financial burden on
health care and insurance and social welfare, prevention of "excessive demands" on services,
prevention of dependence on social welfare and relief of acute medical services.
Often several goals are sought simultaneously. Thus the priority given to out-patient rather
than in-patient services is linked to the prospect of being able to offer better services, make
savings, prevent poverty and reduce the need for residential homes. This can, among other
things, be achieved through the provision of informal care by family members, who are often
not only the best, but also the cheapest, form of care.
Performance targets such as enhanced quality and efficiency can be attained, for example, by
the introduction of quality standards and regular evaluation in the framework of the extension
and establishment of formal and informal welfare provision.
Xenia Scheil-Adlung
8
The cost burden on individuals can be controlled by caps on contributions and taxes,
avoidance of excessive charges to individuals and prevention ofpoverty.
Forms of care organization
How can the stated goals be translated into organizational forms of care provision?
Here we have two alternative possibilities:
•
Revision and extension of existing regulations for old age, illness, accident and social
welfare, as in Australia, Ireland, New Zealand or Austria.
In this solution, health and welfare provision is frequently integrated. It is thus also
possible for several social welfare departments to be responsible for care provision.
Cash benefits can therefore be delivered by other social welfare providers and
departments than services.
•
Establishment ofa new insurance system to cover dependency risks within the existing
social security scheme, as, for example, in Germany.
This solution, unlike the first, allows the introduction of separate budgets for care and
thus better control of costs and use of resources than would be possible under a general
administrative framework, e.g. health insurance.
With the introduction of a separate insurance method, it will also be possible to
introduce new structural elements into social insurance not available in existing
branches, which could be useful in long-term care provision. These include:
•
A new basis of compulsory or voluntary insured groups ofpersons, which do
not have to coincide with the groups under other branches of social insurance.
Thus, for example, for those aged 40 and over, the individual’s compulsory
insurance contribution can be reduced.
•
The introduction of new forms of insurance in the area of long-term care
provision, without changing existing branches of social security, such as the
involvement of profit-oriented private insurance into the social security scheme.
It is conceivable that compulsory long-term care insurance could be introduced
partly or fully through private profit-oriented insurance.
Financing of social security for care needs
Essentially, "traditional" methods offinancing social security were retained in the countries
that introduced reforms:
Xenia Scheil-Adlung
9
•
•
•
pay-as-you-go in the framework of social insurance;
tax-basedfinancing through state programmes, such as income-related social welfare;
in the case of profit-oriented private insurance, the funding approach is used.
The introduction of the above goals in the area of financing creates serious problems for many
countries. As the starting point for most reforms in long-term care provision is cost reduction
in health care, there is a danger that existing State resources cannot, in the long term, be
adequate. In particular, because of the grey area between their application to medical treatment
and long-term care, it is to be feared that resources will be pushed towards expensive medical
treatment.
A particular problem is the relationship between the target of reducing the cost burden to the
State and preventing greater cost burdens on individuals. These conflicting goals have in most
of the reforming countries led to solutions which only partly cover the cost of care through the
public purse and build on the increased provision of private resources. As will be explained
below, Germany found a new form of financing long-term care, beyond the usual models, by
cutting a public holiday.
A comprehensive insurance of care risk, exclusively from public or private resources, is not
to be found in the reforming countries. In the context of the reform process, the existing mixed
financing by public and private resources has been retained or extended.
The reformists saw "financial room for manoeuvre" in the income and capital situation of old
people. In addition, it is assumed that economic activity at increasing age does not have to be
restricted, but can be allowed to continue, unless precluded by early retirement, earlyretirement pension rules, etc.
The income and capital situation of old people is not only relevant to the provision of agerelated services, which are income-related - such as care provided by the social welfare
system.9 The increasing groups of contributors and taxpayers who finance long-term care
provision and provide co-payments, are also an aspect of the new care provision arrangements.
Thus, the German and Japanese reform legislation provides for financing of long-term care
through contributions by the insured, co-payments as well as through public subsidies.
Benefit design
When it comes to benefit design in long-term care provision, similar solutions can be found
in the various reform processes. This includes the introduction of the following core
innovations in the performance aspect of most reforms:
Xenia Scheil-Adlung
10
•
•
•
attendance allowances',
new in-kind benefits;
social security coverage.
Attendance allowances are the most significant innovation concerning long-term care benefits.
They are paid to cover the cost of home care and not to replace the beneficiary’s income, as
is the case with other cash social security benefits.
In most countries, attendance allowances are paid either direct to the persons in need of care
or to the carer(s). In the case of direct payments to the persons needing care, this allows the
possibility of employing one or more people and making a choice.
They generally consist of flat-rate payments, which individuals must use to cover the services
they use. In countries with social insurance schemes, the predominant model is direct
payments to those in need without any income-related means testing.
Less frequently, income-related payments are made direct to the carers. This is particularly
the case in the Scandinavian countries, where informal carers, such as family members or
neighbours, receive lower incomes in the context of communal households.10
Basically, there are graded levels of attendance allowances, depending on the degree of care
needed. The distinction is often based on the following criteria, which may be further
subdivided in various countries:
•
•
•
dependant persons;
seriously dependant persons;
totally dependant persons.
Classification in the various categories is often by official doctors or medical services, who
in some cases collaborate with the authorities that pay the attendance allowances.
The amount of the home attendance allowance is not only always less than the cost of in
patient care, but also less than the allowances paid for residential care.
Newly developed in-kind benefits are mainly related to the introduction and extension of
facilities for home care, based on a combination of professional and informal services.11 The
(partial) assumption of the costs of this service is paid either as an alternative or as a top-up
for the attendance allowance. A special concern is thus to achieve a better linkage between out
patient services and residential or semi-residential services.
Prominent here is another new function: support for informal carers who alone or with
professional services provide day and night home services such as invalid care, housework,
help with dressing, etc.
Xenia Scheil-Adlung
11
In order to prepare informal carers for their work and provide them with support, advice to
and training of family carers, neighbours and voluntary helpers is increasingly offered as a
new service.
A further innovation with regard to benefits can be seen in social protection for carers. Carers
are not only often able to take leave from their job, but also during the period of care to
acquire and increase their social protection. Social protection for carers is, however, limited
to pension and accident insurance.
In some countries, the provision of holiday replacements during the care period is also
included in the list of benefits.
In addition to the extension of residential care in special care centres, in many countries there
is increased expansion of semi-residential care for those in need. These take various forms of
day care centres specially equipped for old people.
3.
Core issues in the introduction of new regulations for care
provision
Regardless of which solution to insuring against dependency risk is chosen, there arise the
same problem areas and core issues in care reform. These issues relate to the financial and
administrative aspects of dependency and lie frequently at the heart of political discussions of
reform. They include four problem areas, which will be briefly discussed below:
•
•
•
•
the distinction to be made between the need for long-term care and health care, i.e.
between long-term care and acute medical treatment;
centralization or decentralization of organization and service provision;
dependency insurance through the public or private sector;
development of a care infrastructure.
Distinction between long-term care and health care
It is often observed that a sharper distinction should be made between sickness, disability and
age, in order to allow better management of costs and services in specific programmes or
branches of social security, e.g. dependency insurance, social assistance, sickness insurance
or pensions insurance. Such an arrangement facilitates cost calculations and the establishment
of budgets for long-term care provision.
The definition of dependency is confined in many countries to a state requiring support
through regular, repeated activities in daily life, such as bodily care, feeding and mobility.
However, an overlap with sickness, especially in the case of chronic or multiple disease,
cannot be excluded.
Xenia Scheil-Adlung
12
In many countries, therefore, the degree of dependency is checked by special assessment
procedures in each case, in order to restrict access to services to the most dependent.
Centralization or decentralization of organization and service provision?
The fundamental decision is whether long-term care provision should be organized centrally
by the State, or decentralized.
The advantages of central provision are certainly equal access by all dependants to services
and the avoidance of "service differences" in individual districts. In addition, central or
national programmes generally involve lower administrative costs than locally-managed
programmes.
The disadvantages of centralization12 are often seen that the service structures in local care are
highly developed and the planning and provision of services must take local conditions into
account. The greater flexibility and less bureaucracy of decentralization allow more account
to be taken of local values (e.g. religious values).
Long-term care provision through the public or private sector?
The question of to what extent insurance and long-term care provision should be provided
through the public or private sector is related to rising costs, service quality and the solidarity
element (redistribution aspect). Among other things, a distinction can be drawn between the
following areas:13
•
Public or private compulsory or voluntary insurance or provision through a national
programme financed from taxation (like national health services). This decision will
usually establish the coverage of the scheme as well as the basis of its financing
(contribution/taxation or private resources).
The Nordic countries decided to include long-term care provision in their national
programmes, whereas social insurance schemes choose compulsory insurance like in
Germany, which can, however, also be private.
•
Services can be provided through national or regional administrations, state enterprises,
autonomous government bodies, private cooperative bodies, voluntary or private profit
making entities.
In view of the priority to out-patient care in all the countries concerned, the focus of
care for old people is in home care, often through local, semi-private or private local
services. This form of organization has also taken over for residential old-age and care
homes in many OECD countries.
Xenia Scheil-Adlung
13
There could be a problem in this respect due to a lack of a coordinating network of the
various service providers. That could lead to under- or over-supply, administrative
mistakes and frictional inefficiencies.
•
The introduction of competition between public and/or private enterprises plays a
central role in the health schemes of OECD countries and is also relevant to long-term
care provision. Questions to be answered here are, for example: What is the financial
effect of "competition" between informal and formal services, between out-patient and
residential care?
Development of a care infrastructure
In many industrialized countries, neither home care nor residential care is sufficiently
developed to meet the growing demand.
There is an enormous lack of day centres for old people, services such as "meals-on-wheels",
personal care and home visits, old-age homes and residential care. In order to allow the
development of a care infrastructure, massive investment is often needed.
4.
Case study: Social dependency insurance in Germany
It is frequently sought to provide dependency insurance in the framework of a national social
and political philosophy. So too in Germany, as well as in other countries with social
insurance schemes, it was sought to provide dependency insurance in the context of social
insurance. By way of example, the new regulations on dependency insurance introduced in
Germany in 1995 are described below.
Organizational arrangements
In Germany the social dependency insurance was established as a separate insurance scheme
to supplement the statutory insurance system for old age, sickness, accident and
unemployment.
Care services are provided to the insured person and family members. These services should
serve to maintain or restore dependants’ activity. Out-patient medical rehabilitation services
can also be brought in. The quality of the services should meet generally accepted standards
of medical care.
Dependency insurance providers are administered by the statutory health insurance. These are
independent public corporations.
Xenia Scheil-Adlung
14
The coverage of dependency insurance equals the coverage of the statutory health insurance.
This is some 90 per cent of the population. The remainder of the population must insure
themselves privately, through private health insurance.
Financing
Expenditure on dependency insurance is currently around DM31 billion. It is financed through
contributions by the insured. The amount is currently 1.7 per cent of monthly salary. The
amount is paid half by the employer and half by the employee.
In Germany, further innovative ways of providing resources have been explored to find new
sources of financing. In addition to the normal contribution-based financing by employers and
employees, State supplements were introduced, e.g. to invest in residential care, and a
statutory holiday was abolished. That partly compensates the employer for the burden of the
dependency insurance contribution.
A further innovation in the financing of German dependency insurance is that deficits
previously covered by the State would no longer be so. Thus, excess expenditure by the
dependency insurance must, in the long term, be covered by contribution income.
This decision meant that the dependency insurance, otherwise financed by transfer from the
normal fluemation reserve, also retains financial surpluses to cover demographic risks. The
surplus on statutory dependency insurance at the end of 1998 was DM9.5 billion.14
With the introduction of dependency insurance, the burden on social assistance, especially for
"care support" services, fell by some DM8 billion between 1995 and 1996.15
Provision of service and benefit
At present, some 1.5 million people are in receipt of dependency insurance services in
Germany. The costs of these services are not, however, always fully covered and must be
supplemented by resources from other social security schemes, such as social assistance, or
from the insured’s own resources.
When long-term care services are requested, the dependency insurance arranges for the health
insurance medical service to check whether the conditions for dependency are met and what
level of care is needed. The health insurance medical service consists of some 2,000 doctors
and 700 care specialists nationwide who are responsible for the assessments.
The degree of care determines the benefits and service provided. Category I comprises people
who need help with bodily care, feeding or mobility at least once a day (one and a half hours)
and help with housework several times a week.
Xenia Scheil-Adlung
15
Seriously dependent people come into category II. The care requirement is at least three times
a day (three hours) and several times a week for help with housework.
Category III is where care is required day and night (at least five hours a day) and help with
housework several times a week.
In particular, the following types of service for old people must be distinguished.16
In the area of home care, a distinction should be made between services in kind, cash benefits,
combined in-kind and cash benefits, home care in the absence of regular carers, equipment and
technical aids, social security coverage for the carer and long-term care training.
•
Care services in kind
The right to home care by professional carers covers all household services and basic
personal services such as washing, help with dressing, etc. These benefits can be
claimed up to DM750 for category I, up to DM1,800 for category II, up to DM2,800
for category III and hardship cases up to DM3,750. Costs in excess of this must be
paid privately.
•
Cash benefits
If the care is provided by an alternative means, e.g. spouse, neighbour, etc., the
amount of cash benefit for category I is DM400, for category II DM800 and for
category III DM1,300.
•
Combined cash and in-kind benefits
Cash and in-kind benefits can be combined; e.g. if the service is only partly claimed,
then the insured receives a partial cash benefit in addition.
•
Home care in the absence of regular carers
Dependants who received cash benefits to pay for home care are also entitled to
payment for a substitute home help for up to four weeks a year. A maximum of
DM2,800 is allowed for this. The substitute help is for the period of the carer’s holiday
or illness, for example.
•
Equipment and technical aids
Dependency insurance also covers aids such as wheelchairs, or financial subsidies are
available for adapting the home, provided that this is needed on the grounds of
dependency and not sickness. The total amount is DM60 per month for consumption
Xenia Scheil-Adlung
16
of equipment and up to DM5,000 for home modifications. Technical aids should
normally be loaned.
•
Social security for the carer
Dependency insurance covers the informal carer’s pension contributions. If the carer
returns to work, the carer can claim a so-called remuneration grant from the
unemployment insurance. Accidents related to care are covered by the accident
insurance.
•
Care training for family members and voluntary carers
In order to lighten the mental and physical burden of care for informal carers, free
training and courses are available.
Semi-residential care services include day and night care and short-term care.
•
Day and night care
Semi-residential care offers special day and night care in special centres as well as
return transport. Services in centres are provided up to the value of DM750 for
category I, up to DM1,500 for category II and up to DM2,100 per month for category
III.
•
Short-term care
Where home care cannot be provided temporarily, short-term care can be claimed in
residential centres. This is possible for up to four weeks a year, with an entitlement up
to DM2,800.
Services in fully residential care centres are paid up to DM2,800 per month and in hardship
cases up to DM3,300. However, this amount may not exceed 75 per cent of the centre’s
charges. In total, the average annual cost of dependants under the dependency insurance should
not exceed DM30,000.
5.
Conclusions
The problem of dependency arises in almost all countries, albeit in different guises. Yet only
a few social security schemes are equipped to deal with it.
Since the early 1990s, significant reforms have been carried out, especially in countries with
social insurance systems. Thus, comprehensive new regulations were introduced in Austria in
Xenia Scheil-Adlung
17
1993, Germany in 1994, France in 1995 and Luxembourg in 1998. Japan likewise envisages
a far-reaching reorganization of long-term care provision in the form of social insurance.
In the context of these reforms, the following new socio-political developments stand out:
♦
Dependency services are seen as a new risk and are either:
• incorporated into the social system as a separate branch of insurance; or
• built on to the existing sickness, pensions, accident and social welfare system.
•
New forms of financing long-term care services include, inter alia-.
• the abolition of statutory holidays;
• greater co-payment and partial coverage of the cost of the service claimed;
• introduction of informally provided services without or with lower cost structures.
•
Lump-sum home care services include:
• cash benefits covering part of the formal and informal help;
• new opportunities for short-term semi-residential care;
• introduction of social security coverage and training for family carers.
•
Integrated cooperation in service delivery between:
• health care, old age and accident, social assistance and social services;
• public and private sector.
The former strategy of providing care for the elderly through family members appears in the
longer term not sustainable in many countries. Not only because of demographic trends, but
also because of the pressure of ever-rising costs of sickness insurance and social assistance
systems, it can be expected that the number of countries providing dependency insurance as
part of the social security system will increase further in the future.
References
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2.
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d’Epidemiologie et d’Economie de la Sante, Montpellier.
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Bureau of the Census. 1992. "An Aging World, II", International Population Reports, Washington D.C.,
p. 52 et seq.
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Schneider, Markus. 1998. "Gesundheitssysteme im intemationalen Vergleich", Ubersichten 1997, Augsburg,
p. 158.
Xenia Scheil-Adlung
18
5.
Scheil-Adlung, Xenia. 1995. "Social security for dependant persons in Germany and other countries: Between
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6.
Schulte, Bernd. 1998. Probleme der Pflegefallabsicherung - Vergleichendes Referat, anlasslich des DeutschJapanischen Kolloquiums "Probleme der Kranken- und Pflegeversicherung", Rottach-Egem, May, p. 7
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Schulte, Bernd. 1998. Probleme der Pflegefallabsicherung - Vergleichendes Referat, anlasslich des DeutschJapanischen Kolloquiums "Probleme der Kranken- und Pflegeversicherung", Rottach-Egem, May, p. 7
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Wojtzak, Andrzej. 1998. "Ageing of the world: a challenge to health system in 21st century" in.- Delegate
Handbook, Third Annual Summit in International Managed Care Trends, Miami.
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Kaula, Karl. 1999. Die soziale Pflegeversicherung in Deutschland, manuscript of the report on the AIM
symposium in Barcelona on 26 March.
15.
"Kurznachrichten fiir den eiligen Leser", in: Wege zur Sozialversicherung, Vol. 3, 53rd year, March 1999,
p. 93.
16.
The following extracts are taken from the 1.1.1999 version of the Sozialgesetzbuch (Social Legislative Code)
(SGB IX).
Xenia Scheil-Adlung
C crT» H
3
LTn/usc/s<^ /Vi /so
REVIEW OF REGIONAL EXPERIENCES
AND MAJOR CONCERNS
ON HOME-BASED AND LONG-TERM CARE
1
STUDY GROUP ON HOME-BASED
AND LONG TERM CARE
ISRAEL, 5-10 DECEMBER 1999
PAPER PREPARED BY
Dr. James N. Mwanzia
Acting Regional Advisor
District Health Systems
r
WHO REGIONAL OFFICE FOR AFRICA
HARARE, ZIMBABWE
1.
Introduction
Home-based and long-term care has become increasingly important in the Africa. The
reasons for this are many, but the shear magnitude of health problems, coupled with poor
socio-economic conditions and inadequate infrastructure has resulted in the need to for
home-based and long term care in most countries of the region.
; Malaria is the leading health problem in Africa, south of the Sahara. A total of between
,300-500 million clinical cases are reported every year. Deaths due to malaria are
estimated to be between 1.5 and 2.7 million per year; about 5% of children under 5 years
■ die of malaria-related illness.
Sub-Saharan Africa remains the worst affected region with regard to HIV/AIDS. An
estimated 21 million adults and children are infected with the HIV virus. 83% of the total
AIDS deaths are from the region. 80% of the HIV +ve women and 90 % of the infected
children are from the region. This condition has lead to the worsening of TB control, with
2 million new cases and 600,000 deaths per year.
This trend, coupled with the occurrence of epidemics and outbreaks, has resulted in an
overwhelming burden to the health infrastructure, which in most countries is far from
adequate. It has also stretched the meagre financial and human resources beyond the
limit.
Given this scenario, home-based and long-term care has become a reality for many
households in Africa.
2.
Political, economic and cultural context
After two decades of significant socioeconomic growth and development in most
independent African countries, the 1980s ushered in a period of worldwide economic
recession that negatively impacted on the economies of most countries of Sub-Saharan
Africa. The health care delivery systems of many countries became so weakened that
they were incapable of coping with the increasing health challenges, as well as meeting
the needs of a growing population which had become better informed about their right to
quality of health care.
The problems facing the health sector in most countries include:
■
•
■
■
■
Absence of well articulated health policies and / or plans;
Weak and fragmented health systems;
Inadequate resources, financial, human and material;
Overdependence of key programmes on donors;
Poor management of health expenditure;
■
■
•
■
*
■
Inefficiency and wastage in procurement, storage, prescription and use of drugs;
Poor support services, including supervision, logistics and information management;
Ineffective referral systems;
Poor coordination among service providers (public and private);
Inadequate and inefficient regulatory mechanisms;
Inadequate community participation.
In most countries of the Region, there has been rural to urban migration such that many
families have at least two abodes, one in the working area and another in the rural area.
Sexual activity begins early, e.g. in Botswana, 23% of first-time antenatal care attendees
annually are teenagers, of whom 6% are below the age of 15 (Botswana annual health
statistics 1995). This level of teenage pregnancy indicates a high level of unprotected
sexual activity in this age group.
The use of limited health care resources can be made more effective and efficient by
involving all caregivers, i.e. health organizations, professionals, community members and
family members, through home-based care thus reducing the workload of professional
health providers in the hospitals. Home-care is seen as a key strategy for sharing care
tasks between hospitals, district health services, communities and families.
Home-care and long term care experiences
Home-based care is given to individuals in their own natural environment-their home. In
most countries of the Region, home-based and long-term care has been rendered in a
piecemeal fashion by different health care providers, without an emphasis on linking
services within the health care system. A number of countries have developed operational
guidelines for home-based care (Uganda, Botswana). In addition, there are other key
issues that have to be considered, e.g. social support and drug kits.
The specific objectives for home-based care are:
■ To assess the health and health-related needs of patients/clients and their families.
■ To develop a plan of action for the identified needs.
■ To provide continued support and care to the client/patient and family.
■ To identify community support groups.
■ To provide training and education for health care providers, patient/client, caretakers
and community groups on managing clients at home.
" To establish a comprehensive referral system in order to ensure continuity of care.
" To monitor and evaluate home-based care.
Social welfare providers, including caregivers at home level must be trained in home
care. In addition, they should be provided with basic supplies such as gloves,
incontinence pads, reusable bedpans, plastic aprons, mackintoshes, disinfectant iodine,
etc. It is important to have support from the community, particularly from religious
groups interested and experienced in home visits and home-based care. Strengthening the
referral system will ensure continuity of care. Counselling must be provided to patients
and families before, during and after care.
Ccrrv) H 4 3 : A
WORLD HEALTH ORGANIZATION
STUDY GROUP
HOME-BASED AND LONG-TERM CARE
Ma’ale Hahamisha, Israel
§
5-10 December 1999
“HOME CARE ISSUES—
AMRO-PAHO”
World Health Organization
Regional Office for the Americas
Pan American Sanitary Bureau
LTH/HSC/SG/99/9
DRAFT
Table of Contents
(A)
Background
Introduction
Definition of Terms
Home Care
Home Visits
Home Procedures
Organization of Home Care
Basic Consideration
Organization Models
Models of Home Care
Various Approaches to Home Care Services
Different Programs and Levels of Care
Advisory versus Comprehensive Home Care Service Models
Caregiver Issues
Informal Caregiver Issues
Formal Caregiver Issues
Training Issues
Cultural Barriers
Financial Issues
Quality versus Cost Issues
Accreditation Issues
Frequent Problems
The Way Forward
Conclusions
Bibliography
Appendix
1. Home Care Professionals: Functions and Responsibilities
II. Home Care Country Profiles:
Antigua and Barbuda
Argentina
Bolivia
Canada
Chile
Columbia
Guyana
Honduras
Nicaragua
Panama
Peru
Saint Kitts and Nevis
St. Lucia
Suriname
Trinidad and Tobago
United States of America
Uruguay
1
Background:
It has been demonstrated that adequate coordination between hospital services and good home care
programs reduces hospital occupancy rates, increases discharges, and shortens hospital stays, with significant
savings in the direct cost of health services <32-10-8'u'24>.
The advantages of home care include: greater efficiency in the use of existing hospital beds, a lower rate of
hospital admissions and readmissions, shorter hospital stays, lower health care costs, greater user and
caregiver satisfaction, home health care delivery to an ever-larger elderly population, and improvement of the
quality of life for patients and their families(10,39' 19'4'22). An illustrative example in this regard is the home
care provided to mothers and newborns as a consequence of eariy hospital discharge (24).
(B)
PAHO has initiated work on home care in the last year in an interprogrammatic activity between HSO and
HCN on Palliative Care for patients with Cancer. As we progress further with this avenue it becomes clear that
the need for home care for individuals and their families is not being met. We have taken the initiative to
explore Home Care in the Region of the Americas and to focus initially on feasibility to develop home care
services. Anecdotal information suggests that organized systems of home care are not generally operating in
developing countries. The exception is programs developed to care for patients with a particular diagnosis
(usually cancer or AIDS) and which use volunteers rather than paid staff or those associated with prepaid or
managed care insurance schemes. A number of experiments in developing home care schemes have failed
due to financing problems.
To date a review of Spanish language databases and inquiries to key informants in Latin American countries
has provided additional information about programs in the countries. This includes a roster of Latin American
country experiences for services in the area of home care and palliative care. A registry of information that
includes the organization of the home care system, financial issues, and coordination of the different levels of
care, when this information is available. A directory of organizations with experience in home care was also
compiled. In addition, a draft paper in Spanish on issues in the development of home care has been prepared
and is currently under review in HSO and HSN. This paper is based on the literature reviews, information from
key informants, and the database of programs. It addresses some of the problems surrounding definitions
such as home care, home visits, and home procedures. It also provides a conceptual model that recognizes
that home care should be at the center of a network of services at all level of care-primary, secondary, and
even tertiary.
All home care programs must undergo their own unique development in response to community needs. The
diversity of home care programs is both a strength and a weakness in development in this sector(,8) While
individual programs allow for specific and local responses to address needs, the lack of common terminology,
standards for service delivery, and information gathering has kept individual programs from benefiting from
the development of collective initiatives, including research activitities, analysis of the cost-effectiveness of
interventions, and information systems to support improved management and policy-making (18)The potential collective benefits of home care programs would be further research activity to support improved
management and policy-making. There is considerable variation among home care programs and much can
be learned from their experiences, especially now that countries are experiencing a relative period of growth
and reform in this area compared to other sectors of the health system. Systems need to be developed and
used to support the collection and dissemination of information to support evidence-based decision-making at
the subnational, national, and international level.
This background paper and the steps included will address home care issues such as; developing and
establishing common terminology and discussing key issues with respect to organization and management,
proposed models of care, and resource issues, which can then be used as a tool to help establish general
guidelines that can assist individual countries in developing standards for home care service delivery that are
suited to the needs and demands of each specific population.
2
Introduction:
Home care for patients with a variety of pathologies has been widely described as an alternative to
institutionalized health care. Although its development has not followed a path parallel to that of institutional
care, extensive experience has nevertheless been amassed with regard to the various forms of home care and
their disadvantages and advantages'25’.
Addressing this issue means dealing with a “new modality of health care,” which in turn, implies the
development of a new profile of public and private health services. The bases for considering home care as a
preferred care alternative are mainly epidemiological, technological, economic, and social in nature.
The latest trends in morbidity, mortality, and demographics in the developing countries point to an aging
population, accompanied by a concomitant increase in chronic diseases and the typical complications
associated with the end of life. In 1990 the population over 65 years of age in Latin America numbered more
than 21,434 thousand and is expected to rise to more than 39,396 thousand by the year 2015(14). With regard
to mortality, it is predicted that cases of infectious disease, which have thus far been the highest cause of
mortality, will be equaled in number by cases of neoplastic disease by the year 2000. By 2015 neoplastic
diseases will account for double the number of infectious diseases as a cause of death in Latin America and
the Caribbean114’.
(C)
These figures indicate that national policymakers in many developing countries must begin to develop
programs designed to support significantly higher numbers of the elderly in the coming decades. In light of the
declining family support available to the elderly population in many urban settings it is essential to develop
health policies to explore how formal and informal services are provided by home care programs.
The current advances in technology make it possible to ensure an adequate level of quality in home care. The
transfer of hospital technology, however, is an issue that requires special consideration of the costs and
benefits of such procedures as parenteral feeding, peritoneal dialysis, and oral rehydration'5,1,341
From an economic standpoint the need to control the ever-rising cost of health care, coupled with current
cutbacks in health budgets, points to the need for serious consideration of home care in health care delivery.
Eady discharge has been institutionalized as a way of controlling hospital expenditures, resulting in a greater
workload for health workers-who must now provide the same amount of care in a shorter time-and growing
health problems due to complications after discharge, which in certain cases incurs further expenditures. With
regard to reducing the cost of care for mothers and newborns through home care programs following early
discharge, Malnory’s findings (1997) are encouraging . This cost-cutting was achieved mainly by curtailing
visits to emergency services, reducing hospital readmissions due to subsequent complications in mothers and
their infants, and reducing the frequency of outpatient consultations'24’. Comparative studies of institutional and
home care conducted bv Shepperd, et al. (1998) did not show any decline in health care costs in any of the
patient groups studied'44’. It should be noted, however, that these groups generally required highly complex
care and that the goal of the home care programs in these cases was to transfer “all" the services provided in
the hospital to the home.
Finally, in many cases-provided that adequate instruction is provided-the sociological, sociocultural, and
spiritual aspects of care given in a family setting are major advantages for the recovery and/or maintenance of
health or a dignified death
*
29,12’. Various studies have demonstrated that in all cases home care significantly
increases the satisfaction of patients, families, and health providers'28"41,'43'44,14)
The purpose of this document is to present concepts, objectives, systems of organization, and a description of the key
participants in home care. The concepts presented here are the result of a literature review and interviews with experts, in
addition to observations in the field. Suggestions have been included that may be expanded or modified in keeping with
contractual needs
Definition of Terms:
There are a number of ways to bring health professionals together with users in the home, which leads to
varying concepts. Although these concepts appear to be similar in form, they are substantially different in their
essence, characteristics, and methods.
3
(D)
Due to the diversity, range, and orientation of services among programs, when referring to home care
programs, differences exist within and among countries. Home care programs may include different services
and clients, or home care programs with an acute care orientation are defined differently from those
incorporating a broader range of services into one program. The scope and definition of home care must be
broadened to recognize that home care needs to be built on innovative approaches. It appears essential to
standardize the definition of terms in the interest of developing structures capable of providing home care as a
component of a health care model. A clear-cut presentation of such terms would provide a common language
and lead to easier management in practice.
The following table presents a summary of the terms most frequently employed in the literature, in addition to a
brief definition of concepts and objectives, providing examples in each case.
HOME CARE
HOME VISITS
HOME
PROCEDURES
CONCEPT
OBJECTIVE (s)
EXAMPLES
Coordinated delivery
of health services in
the home. Includes
use of support
networks (public,
private, and
community
institutions). Care is
delivered in a
comprehensive and
systematic fashion.
Access to patients'
homes with a specific
purpose. Provided by
one or more members
of the health team
without community
participation. Is not
part of a home care
plan.
- Precision
- Management of
problem
- Comprehensive care
- Reduction of hospital
stays
- Expanded coverage
- Greater user
satisfaction
Palliative care
program.
Programs for
kidney patients.
- Investigation of
cases at risk.
- Evaluation of
personal, family, or
environmental
situation.
Home care for
patients with a
specific intervention
purpose, usually
provided by a member
of the health team.
- Organization of an
activity or specific
health technique in
the home.
- Follow-up and
outreach to women
who missed Pap
smears.
- Follow-up and
outreach to women
who missed well child
care.
- Socioeconomic
evaluation of the
family group.
- Catheter changes
- Collection of
specimens for testing
Home Care:
Home care is defined as the coordinated provision of health care in the home that delivers a certain number of
services of limited duration and complexity and that enable the beneficiary to remain in the family environment
under the best possible conditions’28'. Another definition identifies home care as a formal support network.
These services include both health professionals and other community support networks (public, private, and
volunteer.) Home care implies holistic delivery of care, which includes physical care, the training of health care
providers (family or neighbors), social and psychological support of the patient and family, orientation with
regard to social and financial benefits, and referral to services and professionals, as needed128'.
OBJECTIVES OF HOME CARE
Prevention of health problems, whenever possible
Management of existing problems
4
Comprehensive care directed toward the family unit and promotion of
self-care(51(b>>
Home Visits:
Home visits are defined as visits to the patient's home by one or more members of the health team. They
usually form part of the program priorities of the health services at the primary care level and are also a
component of the socioeconomic and demographic care/assessment of a family or household; they do not,
however, foim part of a holistic home health care program.
Their main objectives are:
1. Assessment of patients, their families, and their environment, with a view to establishing a diagnosis of
their health or socioeconomic status
2. Follow-up of at-risk cases and/or those who have missed check-ups, treatments, or examinations
Home Care:
Home care is the result of the specific diagnosis of a health problem. Health interventions conducted within the
framework of home care focus on the solution of these specific problems through specific health activities,
usually carried out by a member of the health team. Home care is usually described as “sporadic” care
provided in the home. If this care is part of a home care program or plan that is coordinated with other home
interventions and employs a holistic approach, then home care and home procedures can be defined as equal
and, hence, interchangeable terms.
These three concepts have been selected as those mentioned most frequently in the literature. Consequently,
this sample does not seek to diminish the value of other definitions or terms in use nor to limit the emergence
of new concepts and definitions that may result in further development of this kind of care.
Organization of Home Care:
Before organizing a home care program it is important to define the needs it must address and the best means
for meeting them. It is also very important to consider the sociocultural context of the environment in which a
given program will be implemented
*
28’. At the same time cooperation and communication between the various
sectors of the community and the health professionals are the cornerstone for the organization and operation
of a home care program. The following case exemplifies the concepts of home care, home visit, and the
sociocultural characteristics to be taken into account in their organization. (Contribution of Mrs. Guadalupe
Palos, Nurse, Research Group in Pain and Palliative Care, M. D. Anderson Cancer Center, University of
Texas):
Case 1:
A Hispanic immigrant, male, 70 years of age, with a diagnosis of terminal cancer is
referred for home care. A home evaluation visit is conducted by professionals from the
institution that will provide home care, with the object of discussing any doubts,
problems, or conflicts, and finding possible solutions.
On this occasion the
professionals of the health team encounter an extended family that includes at least
three generations, in addition to several other significant people (some 25 people in all
at the meeting), all of whom wish to assist in providing care for the patient. The
coordinator of the professional team requests the patient to fill out the forms for
evaluating his pain (all in a language that the patient does not fully understand);
however, one of his daughters takes the form before it is put into the hands of the
patient. His vital signs are taken, and the health personnel note that family members
appear to be concerned about the patient, who is speaking to them very slowly and in a
somewhat agitated manner in his native language. Nevertheless, when the patient turns
to the health workers, he merely smiles and nods his head in a sign of assent. When the
patient is asked about the written information, one of his daughters interrupts and
answers for her father, appearing not to take the patient or his wife into account. The
team takes note of this situation, in which the patient does not appear to be given the
opportunity to voice his own perception of his pain or the relief or satisfaction he is
receiving from his current treatment.
5
A thorough evaluation of the sociocultural, environmental, physical, and spiritual
aspects was considered in planning the home care, with a view to meeting the different
needs of the patient and his family.
The organization of a home care program should basically consider four factors (Karpati, 1994):
a. The place occupied by home care in the health system
b. The financing of home care
c. Definition of care standards
d. Human resources development0’
(E)
Existing home care services are often fragmented among acute and community care organizations and
between health and social agencies. Therefore responsibility for services to clients is spread over many
agencies, and no one is really accountable 13,61 ’ Governments have been encouraged to fund and facilitate
home health care. Therefore, it is important to establish who is accountable to the health authorities for funding
allocation and service delivery.
The transition from institutional care to home care must be planned, managed, and part of a comprehensive
system of health care. Moreover, since home care is multifaceted, the planning must be tailored to the
particular circumstances. It is therefore important to decide who will administer the home care programs and
who will refer clients to receive home care services(18)'
Principles and guidelines are reguired to ensure equity. The Canadian National conference on Home Care and
concluded that national standards on portability, comprehensiveness, accessibility, universality, funding, skills
and training for caregivers, and public administration were desirable. They also suggested that all levels of
government should meet to discuss and define acceptable options for standards. All nations should confirm
who sets overall policy guidelines and standards for service delivery, reporting requirements, and monitoring
outcomes. A movement to promote the development and use of a standardized home care assessment
mechanism should also be established. Eventually, legislation on guidelines or policies governing the delivery
of home care services should be considered (18) Finally the quality, cost, and effectiveness of services should
be monitored and evaluated in order to determine future strategies for ongoing improvement of the overall
system(9,51).
The basic eligibility requirements for home care services must be considered. Vulnerable groups such as the
elderly, patients dependent on technology, the disabled, minority and indigenous groups, certain high-risk
infants and children with complex medical problems, and those with out anyone to care for them should
receive home care services. Such requirements may include; proof of residence; needs assessment
conducted prior to any service provided; care as a response to unmet needs; a safe home that is suitable for
service delivery; and the consent of the patient or his legal representative/18’ Yet, not everyone in these
groups may need full services or services over the same length of time at the same level of service or from the
same type of provider. Therefore, the length of the service should vary with the specific needs of the patient or
group of patients. In nonindustrialized countries such as those of Latin America and the Caribbean, home care
and home help services are not recognized as a right and, hence, are not included in the basic package of
services.(23) Social insurance is available only for those employed by the government or major employers ,<33)
It is also important to consider whether or not there is a lack of equity between facility-based and home care
programs. For example, will drugs, supplies, and equipment needs be covered in an institutional setting but
not if the client is receiving care at home?
Reforming the organization and management of the home care health services designed to improve equity,
efficiency, and quality can be an obstacle. It includes measures to improve home care services at the
peripheral levels of the health system, to strengthen referral, and to reform existing health financing
mechanisms to generate proper signals to users and ensure that the indigent are not excluded from care.!18)
Principles for the development of home care services(,>:
Adequate division of labor
Continuity of the care
Delivery of a broad spectrum of care
Care for all who require it without discrimination
The organizational forms of home care programs may be classified by the origin or institution that delivers the
service or the kind of services provided, as follows:
6
Community-based multisectoral programs. The interrelated organizations in this case include a broad
spectrum that ranges from governmental and private health institutions to insurers, including the informal
or traditional sector—all of them centrally or locally coordinated. The inclusion of alternative health
resources represents both a need and a challenge for the delivery of home care1281.
Programs associated with a hospital or public health institution: These programs are a response to a need
perceived by both the community and the professionals of a service within the larger institution. They are
limited to specific and specialized care, provided in a specific geographic area. They are usually
not-for-profit initiatives, and their services are available to all who require them within the constraints of the
program1101.
Private programs. These are for-profit institutions that deliver home health care services, usually restricted
to the upper-income sectors. They may be associated administratively with a major health institution
(hospital), also private, or operate independently. They usually cover a broader spectrum of care than
those described above.
Relationship between the administrative structures of the various types of home care programs and
organizational forms
Type of Health
I Program
Public
Community-based
multisectoral
Private
Place in the System
Financing
Coverage
Part of the
government health
services system. May
be associated with a
hospital or specific
unit or operate
independently.
Independent of the
public health
administration
Social insurance or
social security system
Limited to
beneficiaries of the
public health system.
Mixed social security
systems and/or
private health
insurance
Through direct
payment agreements
with institutions.
Health insurance
coverage.
Universal
Independent of the
public health
administration
Dependent on the
social insurance
system
(F)
Models of Home Care:
Home care should be an integral part of the health care delivery system. The restructuring and downsizing has
placed an unsustainable burden of care on individuals and families due to shorter hospital stays, the
increasing number of unskilled caregivers and cost. Home care programs may be one way to rebuild and
modernize the health care system. Home care programs may be coordinated systems for home and
community health-related services that enable people to live in their home environment and to achieve their
optimal functional capacity. Improving communication and service coordination in the health care system
needs to be strengthened. A smooth transition from hospital to community and home care and vice versa
must also take place. An integrated delivery system would allow this to happen, f38'18-36’485
The goal of home health care is to promote self-care capabilities in the client's home. An appropriate model for
home health care should include concepts of health service delivery, standards of care on which to focus
practice, and guide the development of caregiver interventions that are cost efficient and effective (16'36 ‘18 53>
The model should also include the ability to measure the quality of services in the home. What is needed are
comparisons of patient outcomes with these services and information on which level of provider results in
improved outcomes, what mix of services is necessary for which vulnerable group, and which services are
most cost effective. Moreover, because of differences in cultural and economic environments it is impossible to
rely on a single approach in home care services; rather, it is important to identify a range of effective models
rather than focus on a single program model.(36,52)
7
Location of Home Care in the Various Care Programs and Levels:
Achieving universal access to home care is presently subject to the recognition and development of firm
support strategies for this type of care by government health care systems. Similarly, the recognized benefits
of a home care system, such as a general reduction in health costs, greater user and professional satisfaction,
and greater effectiveness in the care provided, can only be achieved through appropriate integration of home
care into the health systems, which in all cases implies coordination and collaboration between the various
health care modalities in the health services and the home care systems.
The model sketched below is a graphic representation of the various systems and relations underlying home
care. This model is based on the following assumptions and concepts:
1.
The three levels of care that make up the health services systems are related to one another through
referral and back-referral systems. These levels differ not only in their degree of specialization and
coverage, but also in the various forms in which they relate to the community and in the strength of these
relationships.
2.
The coordination, collaboration, and interaction of the various levels of health care with one another and
with a home care organization is essential for achieving the objectives and desired outcomes in a home
care program. These kinds of relationships should be expressed to ensure at least that:
Patient referral to available home care systems is adequate and timely
Timely and adequate education of patients and their families is a priority of the institution or professional
who refers a patient to a home care system, ideally with coordination between the two entities
Immediate care is available within the institutional system and the home care system if a patient needs to
move quickly from one system to the other.
•
•
•
3.
A home care program should be effective in terms of functions and costs. The system of coverage should
make it possible for patients and their families to receive home care without incurring higher costs for the
family.
4.
The community is the environment in which home care programs are developed, and consequently its
support and active participation in the provision of these services is essential for meeting the health
objectives. The community consists of the family (as the principal group closest to the patient), other
important persons, and organized volunteer groups and support services for general needs, such as
hygiene, nutrition, and transportation.
Application of the principles of primary care will permit effective utilization of all the available and
necessary community resources in each case, thereby optimizing the care delivered directly by the health
team and imbuing it with a holistic approach.
Comparative Table: Characteristics of Institutional Care and Home Care
Home (in special
Place where the care is
Clinic, hospital, general
circumstances patients should
delivered
polyclinic, general physician’s
recur to a health care center
or specialist's office
exclusively
Patients (self-care), mainly
Persons who provide the care
Mainly health workers
family members
Health personnel
Volunteer health workers,
support services
Family members/patients
Influence on decision-making
Providers (health team)
(mainly)
Patients/family members
Professional care center
Patients and their specific
Specific health problem
health problems
Holistic care
8
Criteria and Characteristics for Consideration Prior to Developing a Home Care Program
or to Transferring a Patient to Home Care
Necessary Basic Questions
YES
Does collaboration,
communication, interaction,
and coordination exist
between the various health
providers and home care
programs?
Is the education of patients
and their families timely,
relevant, and adequate?
Have the patients’ and
i families’ sociocultural and
psychological situation been
taken into account, in addition
to their environmental
conditions, when proposing
home care as a viable
alternative?
Is there adequate
technological, professional,
and financial support for the
kinds of patients who will be
referred to home care?
Analysis of the decision
making process within the
family. Analysis of the capacity
of the health professionals
with regard to the transfer of
Responses and Results
NO
Delivery of appropriate, highly
valuable care to users.
Disorientation of patients,
families, and professionals
Adequate and effective
decision-making and
participation of patients,
families, and the community.
Reduces participation of the
family in direct care and
decision-making, which
negatively influences health
outcomes
Feeling of failure and
frustration expressed by
patients and family members.
Complications in the health of
patients may arise or increase.
Realistic objectives
established jointly with
patients and their families.
Greater cooperation and
commitment to health
outcomes are obtained and
self-care is promoted.
It is possible to make
appropriate decisions with
regard to those who should
and should not be referred to
home care. Minimum
outcomes in health and user
satisfaction are ensured.
Adequate distribution of
responsibilities and priorities in
decision-making and
promotion of consistency
between decisions and
functions.
9
Patients and families reluctant
to participate in the home care
program as they feel a lack of
support.
Conflict of power and decision
making within the family and
with health professionals.
Basic Model:
Systems and Relations Underlying the Structure and
Operation of a Home Care Program
HEALTH SERVICES
Third Level
Second Level
First Level
HOME CARE PROGRAM
COMMUNITY
Representation of the health services and their various levels of care by specialization and coverage.
yy Representation of a home care program
n
Links between home care and the community
—►Integration, coordination, and collaboration links.
(Alternatives to this scheme at the end of the document)
10
(G)
Advisory versus Comprehensive Home Care Service Models
Home care services can be lumped into two main categories: Comprehensive or Advisory.
Comprehensive services offer patients 24-hour access to a doctor, nurse, either visiting several
times a day or remaining with the patient at all times) and all equipment likely to be needed. This
expensive model is being used in both developing and developed countries. The services provided
can range from primary health care to tertiary care. Advisory models are the most common models
worldwide (21)' Advisory services may be staffed exclusively by trained nurses or by teams of nurses
and doctors. In both cases there is usually access to social workers, occupational therapists, and
physiotherapists from which the home care team operates.
Comprehensive services can and should be designed to meet local needs and conditions. Primary
and other local health care services should collaborate in planning the model. This model allows
terminally ill patients to die at home, but costs are high. p1'
Advisory services have been designed to complement existing services and are designed only for
primary care services. The objectives can be defined as:
-offering expert advice on symptom palliation in the homes;
-offering expert advice on psychosocial problems;
-liaising with other specialized services on behalf of the patient and;
-providing support to colleagues in primary health care. p<)
This type of service allows people to remain at home longer but usually does not allow terminally ill
patients to die in the hospital.
11
1.
Few things are more important than defining, beyond the shadow of a doubt, how patients are referred to
advisory services, who is in clinical charge, and who is legally responsible for the services provided.
2.
Any home service can either empower and encourage relatives and friends to care for their loved one or
inadvertently make them feel unskilled for the task.
3.
These services can easily threaten other primary care workers, particularly general practitioners/family
physicians. They may not resent nurse specialists, but often resent other doctors coming into what they
view as their domain. It is vital that all primary care providers be involved in planning from the outset and
that regular consultations with them occur frequently.
4.
Though “nurse only" teams have a place and, in some countries may be the only model possible, they
give the impression that hospice/palliative care involves nursing only and do not have the same
educational impact on doctors that a "team service" does. Extensive experience shows that few doctors
listen to, and want to learn from, expert nurses talking about pain management. Doctors worldwide prefer
to learn best from fellow doctors.
5.
Any home care service is difficult to manage, evaluate, and audit. It is important that managers be
particularly aware of this. How do you assess or try to measure the effectiveness of an hour spent listening
to a terminally ill patient at home, or evaluate the advice given to help the family to cope? How is it
possible to know whether a home visit was needed?
6.
It is easy to forget that most families and friends can provide excellent care in the home if they are
encouraged and helped to do so. Every good team will set time aside to demonstrate things such as lifting,
feeding, toileting, and even how to sit quietly by a bedside.
7.
Advisory services do not prescribe, carry drugs or equipment, or order studies. They advise on these
matters. Comprehensive services do the opposite. Therefore, the authorities must grant them special
permission, including meeting the strict requirements related to controlled substances.
8.
Adequate clinical records must still be kept, although the services may be simple and aim to serve as
many patients as possible at the lowest cost.
9.
In many countries, it is important to decide at the planning stage whether members of the teams will be
invited to work within residential care and nursing homes when people there need such help.
Source: http://www.hospicecare.come/FactSheets/FSHomeCare.htm<21)
Caregiver Issues
As society and the health care system change, so too does the context for nursing practice. As the context for
practice changes, the boundaries between old roles and new roles blur. These changes produce serious
challenges for both formal and informal caregivers in the home. Providers of home care vary as much as
programs and services. Caregivers range from individuals with little preparation in health care to trained
nurses with specialties in different areas, and the services of other medical professionals. With an increasing
shortage of skilled health care providers, it is clear that strategies are needed to ensure that the right home
care provider is available and accessible to consumers.<4Sa-49’in relation to this, the needs of family caregivers
must be addressed.
The shift to a community focus with earlier discharge, more outpatient treatment and more services being
provided in the community rather than in facilities requires the support of family and volunteer caregivers, and
of the clients themselves. In turn, to support these individuals who enable home care to occur, the significant
role of home support services in the home care service mix should be recognized. Qualified health
professionals should be caring for patients; however, this care should be jjart^f a continuum that is
well-coordinated at the community level, using multidisciplinary teams <36, 1,47,48a'b)
12
Informal Caregivers:
The shift of care from inpatient settings to home care has resulted in movement of personnel, predominantly
nurses, into home care. Many of these nurses have minimal home care experience. Researchers have
documented the tremendous burden on family caregivers in home care of patients. Issues for informal
caregivers have been documented as the lack of recognition inadequate training, insufficient support, and the
expectation that women will serve as informal caregivers.
In developing countries the family is the most important source of support for health care and the economic
and social well-being of the elderly. However, rapid urbanization and the growing number of young people
entering the workforce are undermining this support system. Also, urban housing is ill-suited to the traditional
extended family.(14-2641) Women have traditionally been the family caregivers, but because they are
increasingly joining the labor force, they are less available to care for older family members. In light of the
declining family support available to the elderly population in many urban settings, it is essential to develop
health policies to explore how formal and informal services are provided by home care programs and for
governments to develop policies such as allowances or tax concessions to encourage intergenerational living
arrangements and strengthen individual families that are caring for aged parents. !33<" ‘17>
Higher costs and less effective health interventions for all populations occur with financial cutbacks in the
health sector, but especially for vulnerable groups such as women and children, minority and indigenous
populations, the elderly, rural dwellers, and the poor. Many of the obstacles arise from decisions made at the
home level and are not readily amenable to short-term policy. Measures to improve women's lives in
developing countries aimed at changing cultural norms directly are likely to fail, (33,'w,50) Measures that are
likely to be more cost-effective in practice will be those that explicitly consider the barriers to women's access
to care and their role as caregivers and attempt to minimize their consequences. In the medium to long term,
catalyzing social changes in attitudes toward women will require information, education, and communication
(IEC), together with a social and political commitment to change. (33l,,7)
Family caregivers have their own persona! needs, which includes time to themselves and time away from the
home. Studies have shown that they also do not get enough rest or sleep W7). Family caregivers require
information about the patients’ conditions and potential symptoms or side effects. In order to provide guidance
and support to family caregivers, formal caregivers such as nurses should assess the needs of caregivers and
tailor interventions to meet those needs. There is also a need to develop a social, volunteer, and professional
support network
Formal Caregivers:
Issues for formal caregivers: concern was expressed about working conditions, inconsistent salary and
benefits, inadequate training, a perceived increase in the number of unlicensed formal caregivers, a blurring of
roles and responsibilities among various categories of formal caregivers, and safety issues.(48) An article by
Florence M. Moore (1990) documents the lack of standards for recruitment, hiring, and training of formal
caregivers-in this case home health aides.(29) Moreover, standards for assigning aides and for supervision are
not always clear, and even when specific criteria are set for the training of home health aides, the standards
vary with regard to the curriculum and the length of the training/11) The recruitment, hiring, and retention of
home health aides are major problems for many agencies that offer low pay and limited benefits. These
agencies do not attract the most reliable employees and experience a very high turnover rate. When many
incentives are offered, including good pay, benefits, and accountability, the quality of care and satisfaction of
formal caregivers increases
13
Staffing Considerations:
In several countries where the following points with regard to staffing considerations have been ignored,
considerable tension and friction with other doctors and nurses has developed.
1.
All clinical staff must have the necessary clinical experience and training in modem palliative care.
They are going to advise, and must therefore be both expert and knowledgeable.
2.
Working in such a community team, in peoples' homes, is not the same as working in a general
hospital. Staff must have experience and training in community care.
3.
There is much to be gained from home care staff spending some time each year in an in-patient
hospice/palliative care facility, if possible.
4.
Educational opportunities must be offered to staff, both to maintain their competence and confidence,
and to reduce the sense of professional isolation that is a feature of home care services.
Source: http://www.hospicecare.com/FactSheet/FSHomeCare.htm (21)
Training Formal and Informal Caregivers
The modem worldwide emphasis on public heath and home care services requires a change in the
perspective and orientation of nursing organizations and nursing practice. Nurses are mostly accustomed to
hospitals and health facilities, and little training is normally devoted to home care nursing. Also, educating the
patient and the family is one of the most critical aspects of home care services. The home care nurse can
provide training to the patients' family in various necessary areas subjects explicitly and repeatedly (47).
When phones are available, a hotline number can be an important resource for informal caregivers and may
give the formal caregiver time to care for other patients. Also, in the future, middle class and more affluent
families may be able to receive support on the web and through support groups. In the future, the entire world
will be more dependent on technology. This transition will eventually take place, either in the homes of clients
and/or for the communication and education of formal caregivers (53) It is entirely a local team decision
whether to use mobile telephones, car radios, the web, or e-mail, and it depends greatly on the infrastructure,
resources, and the culture. What applies in one environment may not apply in another.
Cultural Barriers:
An attempt to provide a culturally specific response to existing barriers is a challenge. These include
measures to support and integrate "traditional" practitioners who provide home care health services to clients
and to increase the supply of health care providers in the formal system. The effectiveness of these options
can be improved by government investment to inform communities about health needs, problems, and
services.® Improving client access and the cost-effectiveness of service utilization may require an expansion
of primary health care outreach programs to bring services closer to communities. Home-based care is an
option in settings where clients have limited mobility (33)
Also, the rising number of elderly and the present difficulties in assuming their care requires a paradigm shift if
a system is to meet their needs and be cost effective. A shift would involve viewing community-based
continuing care needs as part of a complex system of health and social services.( 1 Population needs-based
funding models used to allocate community health funds to help improve the delivery of home care services
can contribute to a smoother transition. Location of residence is also a determinant of health and health care.
Older populations tend to live in rural areas, but Latin America is an exception., because it is the most
urbanized of all the developing regions of the world. Here, at least 60% of the population aged 60 and up lives
in urban areas.<331 The increase in urbanization brings special problems for the elderly, particularly for women,
since they tend to live longer than men do, especially since they often take on the role of family caregiver/19,331
Home care issues concerning the provision of health services to indigenous populations by authorities must be
addressed. Indigenous populations may suffer from insufficient resources and a lack of program flexibility to
address their unique yet diverse needs.(26,36) Reducing transportation and time costs by bringing services
closer to communities, possibly through home-based outreach, may be a solution. Funding must also be
adequate and flexible to meet the diverse needs of these communities.(26)
14
Financing of Home Care:
Home care is a viable strategic alternative for controlling health costs in many countries in the Region. Some
studies have demonstrated that home care is cost-effective, provided it is accompanied by a reduction in
hospital occupancy rates09’, which implies restructuring the health services.1431
Shepperd (1998) did not detect significant differences in the health costs incurred by certain patient groups
cared for at home compared with hospitalized patients; this study even showed a significant cost increase
(p=0.009) for patients with specific pathologies1411. These studies, however, referred to patients of average to
high complexity, which necessitated the organization of complex home health care systems-systems that
required not only constant supervision by the professional team, but also the extensive use of technology in
the home in terms of equipment and supplies. (H)Another study conducted by the Hospital Clinico San Carlos
in Madrid and presented at the Meeting for Provincial Nursing Schools in Tenerife in October 1998, found that
the cost of home care was one-third that of traditional hospitalization. The study found that the medical
equipment needed in the hospital for chronic illnesses cost an average of 31,000 pesestas per day, but if the
patient resided at home the cost was reduced to 12,000 pesetas per day.<30)
Although certain studies have shown a reduction in health costs, it is not immediate, since costs may hold
steady or even increase during the initial stages of home care plans. This is attributable to the expenditure
involved in launching a home care program without any significant reduction in hospital occupancy rates or in
the number of bed/days used by potential home care patients.
Financing Alternatives:
The diversity of economic realities and financing modalities in health systems makes dealing with the range of
reimbursement alternatives a complex undertaking that requires specific analysis of every area in the
Americas. Essentially, consideration of payment for home care services entails defining the organization and
systematization of reimbursement. Alternatives that include payment based on professional visits, episode, or
exacerbation of disease, or on procedures are some of the alternatives currently in place and now being
studied. One financing alternative to be considered for this kind of care is prospective payment based on
episodes or visits. Prospective payment for home care, although highly complex, is a financing alternative that
being tested in several communities in the United States1261
(I)
Financial home care concerns for Canada are <18>:
•
•
•
•
The direct cost of services can be calculated, but indirect costs such as the prevention of rehospitalization,
acute care visits, decreased employment, and burden on family caregivers are more difficult to determine.
These data are important when examining the overall cost, benefits, or cost-effectiveness of such home
care services.
Determining the role of the different levels of government, programs, and public vs. private funding,
sustainability, provider accountability, and integration with other parts of the health system were identified
as basi components of funding issues.
Home care issues centering on the delivery of health services to Indigenous populations by the authorities
must also be addressed. Indigenous populations may suffer from inadequate resources and the lack of
program flexibility to address their unique yet diverse needs. Funding must be adequate and flexible to
meet the diverse needs of these communities.
Determining who maintains control over home care budgets and funding levels is a fundamental question
that needs to be addressed if home care programs are to be implemented.<18>
Quality versus Cost:
Two major transitions in home care delivery have taken place place. With the advent of managed care and
the shift from inpatient to community-based services, home care service delivery systems have experienced
tremendous growth. Second, the principles and practices of total quality management and continuous quality
improvement have permeated the organization, administration, and practice of home health care.(48d) Also,
the cost of informal caregivers provided by family and friends has become increasingly important to health
services research. Accounting for these costs is important for both “cost-of-illness” and cost-effectiveness
analyses 061 One study conducted by the National Institute of Nursing Research in the United States of
America showed that 80% of the care provided to disabled elderly patients came from informal caregivers. In
this study, the cost of caregiving is estimated using the market value approach, which uses a wage rate for
paid employees providing similar services. The cost of caregivers who participate in the labor force is
estimated by valuing the caregivers’ time in their next best alternative, such as the hourly rate for their specific
type of employment.1291
15
Home care providers everywhere are grappling with financial issues and are concerned about maintaining
high-quality care in changing environments. Striking a balance between maintaining the quality of services
and holding down costs is a global problem. A global survey asked home care colleagues around the world to
discuss cost vs. quality issues t9) The following questions were posed: “Do you believe that in your country the
pressure to reduce the cost of heath care (of which home care is a part) will result either in reduced access to
home care services by needy persons or to a deterioration in the quality of home care services? If so, what do
you believe should be done to prevent this cutback in the availability of home care services and erosion of the
quality of health care services?"
The response from the Nurses Association of Jamaica was that if less money is available from the
government, the quality of home care services will definitely suffer. There will not be enough trained personnel
to care forthose in need of assistance. People need to be educated more on the preservation of life, improving
the quality that should be lived. More funds should be provided for more educational opportunities. P.A.L.S.
in Bermuda noted that(9) in Bermuda, there is no government or other pressure to reduce the cost of health
care or access to home care services for needy persons. The budget for 1997-1998 has actually increased.
With reference to P.A.L.S. and home care for cancer patients, al though costs continue to rise, there is no plan
to reduce services, and funds will be found through heightened public awareness, direct requests, and
hopefully, an increase in the annual government subsidy. Finally, the Columbia Homecare Group and Quality
Care Home Health Services in the United States responded by saying that the increase in quality and
efficiency should make services more cost-effective. Government programs are shifting to a managed care
model, which would allow services to stretch farther. However, if the funding is cut too drastically, many
people who cannot afford services will lack care (9)
Some suggestions to create or preserve quality home care services were:
•
•
•
•
•
•
•
Consolidate standardized services and programs
Create clinical and administrative policies/procedures for practice standards.
Create integrated, disease-specific clinical pathways
Accredit practitioners and programs using consistent standards
Educate consumers and legislators who receive and pay for these services
Encourage consumers and legislators who receive and pay for these services.
Encourage a National Association to take a leadership position on quality.(9))
More and more individuals, governments and insurance companies will turn to home and community care
because it is less costly and preferred over institutional care by both consumers and institutions. When
addressing the issue of quality versus cost, there appear to be two major trends: an accelerated demand for
home- and community-based care and pressure to reduce the cost and payments for health care in many
countries19)
Accreditation of Home Health Care Services:
Accreditation of the organizations and professionals providing home care is a vital mechanism for ensuring a
minimum quality of the services being delivered. Initial accreditation and systematic evaluations should be an
integral part of any home care system or program.
The accreditation of home care services or programs in certain countries is conducted by the institutions that
pay for the services, including government financing systems, social services, and insurance companies. In
other localities the accrediting agencies are either government health systems or independent entities.
Some of the criteria in use for the accreditation of home care institutions are:
The number of families per professionals hired
Review of the financial background of the institution delivering the service
Administrative resources
Type of services provided
Hired personnel11 .
These criteria may be expanded or modified according to the specific situations in each locality.
16
Frequent Problems:
Although it is true that the implementation of a home care program offers innumerable benefits for the health
services, patients, and their families, it is nonetheless also true that implementation of programs of this nature
can also present major difficulties and risks.
Some of these problems are listed below.
1.
2.
3.
4.
5.
6.
7.
The high variability of referral standards stemming from communication and cooperation difficulties among
the working teams within an institution or among the different care levels is a critical factor in the operation
of a home care program. It is thus essential to design systems that ensure adequate coordination among
the different institutional and professional levels.
The resources necessary for launching a home care program may pose a serious risk to implementing
these kinds of programs, unless it is borne in mind that programs of this nature will not produce immediate,
but only medium- or long-term savings for the health systems.
Geographical isolation, which is a hindrance to referral and monitoring
The availability of drugs may be compromised
Family expenditures are frequently increased
The workload and responsibility of the families of patients receiving home care is increased, with much of
it borne by women.
There is a need for additional training for health workers who provide home care, specifically for nurses
who will be challenged by greater autonomy and responsibility in decision-making.
Awareness of these potential problems will make it possible to act proactively and thus give these initiatives a
better chance of success.
(J)
The Way Forward: Possibilities for Future Work by PAHO and the Countries.
Countries need to establish health information networks to facilitate the collection and transmission of timely,
accurate information for home care and other health sectors. There is also a need to develop an accountability
framework for the health system that includes home care and attempts to apply accountability mechanisms to
this sector through the development of performance measurs and outcomeassessments. Eventually,
standards and guidelines for the services provided under home care programs and for new classification of
workers who are charged with delivering these services should be developed.
In order to fill these gaps countries will need:
•
Detailed descriptions of the different home care programs.
•
To compare the different home care programs.
•
To determine the similarities and differences in their approaches and development in home care.
•
To develop standards for terminology and home care delivery services.
•
To bridge the gap between existing services and new standards.
One of the Pan American Health Organization’s goals is to offer guidance through technical cooperation on the
organization and management of home care systems and services in Latin America and the Caribbean, while
promoting the integration of home care as part of the health care delivery system.
For PAHOA/VHO to be at the forefront in reforming health care delivery systems we must help countries to
review issues with respect to home care delivery systems and note the challenges that caregivers, consumers,
the health sector, and policy-makers must face in an environment of reform.
PAHO’s future objectives for providing technical co-operation for the organization and management of home
care as an integral part of the health care system are to:
•
•
•
•
provide an international focus for an exchange of views among health authorities, care givers, and users
on ways and means of dealing with key issues around home care.
incorporate home care information into a framework of factors that can be used for a descriptive
comparison.
facilitate wider participation in the support of present and future activities by PAHO and the national
counterparts related to home care systems and services. (Clearinghouse)
eventually, to develop standard guidelines with the countries in order to improve and develop home care
delivery service.
17
This initiative will undertake the following activities:
OBJECTIVE
ACTIVITIES
TIME
STAGE 1
Background Paper (see proposed
outline)
To provide an
international focus for an
exchange of views among
health authorities, caregivers
and users on ways and
means of dealing with key
issues surrounding home
care.
To incorporate home care
information into a framework
of factors that can be used
for a descriptive comparison.
September 1999
English draft paper will be translated into
Spanish.
A working group will be brought together
in Washington to discuss and exchange
home care experiences in the Caribbean
and Latin America, review the document,
and propose lines for future technical
cooperation by PAHO.
October 1999
Comments and suggestions from the
working groups will be incorporated into the
document to improve its quality.
November 1999
Country representative from the working
groups will be responsible for putting
together a report on experiences in home
care to be incorporated into the final
document.
Final English paper will be translated into
Spanish, and written accounts will be
translated from Spanish to English or vice
versa.
Dissemination of the final paper will
commence.
18
December 1999
OBJECTIVE
ACTIVITIES
TIME
Proposal for
Future Stages:
STAGE II
•
To facilitate wider
participation in the support
of present and future
activities by PAHO and
national counterparts
related to home care
systems and services.
•
Clearinghouse
•
Launch 3 pilot studies to develop national
guidelines for homecare as an integral
part of the health care system.
STAGE III
•
To develop standard
guidelines with the
countries in order to
improve and develop
home care delivery
service.
Conclusions
Home care is a viable alternative that has yielded encouraging results in terms of improving the quality of life
for patients, increasing user satisfaction and producing better or equal health outcomes for home patients
compared with hospitalized patients115'4,1'
The cost-effectiveness of home care programs nevertheless depends on the proper selection of patients and
the time fortheir inclusion in programs of this nature. The structuring of home care programs, as much as the
coordination of these programs with the different levels of health care and the community, is a key element for
the success of these initiatives, in terms of health outcomes and cost-effectiveness.
19
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National Assembly on Home Care. 1999 NAHC Legislative Blueprint for Action.
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32.
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36.
Portrait of Canada: An overview of Public Home Care Programs. Background information
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21
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38.
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42.
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43.
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44.
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47.
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a.
b.
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23
Appendix I:
Professionals who Participate in Home Care - Functions and Responsibilities.
1.
Health Team:
•
Physician: mainly exercises clinical and administrative functions. Depending on the complexity of
each case, the physician may be a specialist or general practitioner
Administrative role: The director of an institution that provides home care is usually a physician,
which in many cases is a prerequisite for the accreditation of an institution. Generally speaking,
the director is a professional who makes the decision about admitting patients to a home care unit,
prescribing the specific care to be given to patients at home and making whatever referrals are
*
appropriate
71. The care given to patients should be authorized by the physician, as this is a
prerequisite for subsequent reimbursement.
Clinical role: The direct care the physician provides is highly variable, depending on the complexity
and specific situation of each patient and family.
•
Nurse: mainly carries out administrative, clinical, and educational functions.
Administrative functions: Nurses generally perform the administrative functions related to the daily
work of a home care institution. Their responsibilities include financial management, registries,
and coordination of the care provided by professionals, technicians, and volunteers, as well as
coordination of the required teams and supplies.
Clinical activities depend on the type of patient and the complexity of each case. Clinical functions
may encompass a broad range of activities from the management of patients and high complexity
teams, (for which specialized nurses are required) up to basic nursing care (usually delegated to
technical auxiliaries or the family, depending on each case). Among the general activities carried
out by the nurse are: assessment of the conditions of the patient, family, and environment;
delivery of care, counseling, education, and emotional support; treatment of complications; and
referral to other professionals
*
51. Nurses also monitor compliance with indications and may collect
specimens for examination if the situation warrants it* 71.
•
•
•
•
•
•
•
Kinesiologist: usually has only clinical responsibilities. In the event that physical therapy is
required, the kinesiologist assists patients with physical disorders or disabilities, developing an
exercise program focused on achieving a maximum level of independence. Some of the activities
conducted are retraining in walking, teaching the family maneuvers for the mobilization of patients, and
training in the use of accessories, such as wheelchairs.
Occupational therapist: usually engages only in clinical and educational activities, with the aim of
recovering the skills to perform daily living activities and providing training for potentially productive
activities.
Nutritionist: provides evaluation and education related to special diets and monitors proper
compliance with dietary indications, in addition to conducting food surveys, especially in patients with
celiac disease, chronic diarrhea, diabetes, and malnutrition
*
71.
Speech pathologist: assists in helping patients who as a result of disease or accident have
difficulties in speaking or understanding, including training in speaking, listening, and writing; training
in swallowing; and exercises to improve memory, reading, and comprehension.
Social worker: provides counseling with regard to community resources, financial assistance, and
services available to meet the needs of patients and their families.
Psychologist: provides psycho-social support for patients and their families, helping them to adapt
to new conditions of health and life productively and effectively, making use of personal and family
resources based on the situation of each family group.
Nursing auxiliary (paramedic): carries out clinical and educational activities under the supervision
of a professional nurse. Functions may include helping to monitor vital signs, provide assistance in
personal care and comfort (bathing, hair brushing, etc.), and in mobilization
*
51.
Other professionals who may participate in home care, depending on the particular situation in each case
are family counselors, speech pathologists, and special education teachers.
24
Country Profiles on Home Care:
ANTIGUA AND BARBUDA
Organization
Health care in Antigua and Barbuda is a function of the national government. Public Health Nurses administer
formal home care, a component of the Community Health Programs.
Participants
Home care services are provided mainly by informal caregivers, including members of the family, community
and religious organizations. Traditionally, professional services, including medical, home help, social service
and physical therapy visits, have been carried out and overseen by district doctors and nurses and welfare
and community aides.
Finance
Primarily the government finances health care with additional donations from outside sources. Their clients
pay private agencies.
Coordination
A referral system had resulted in Collaboration between the informal and the professional caregiver, however,
there seems to be a growing need to develop appropriate policies so as to coordinate home care services.
This seems to be of particular importance as there has been significant growth in the number of both
independent professional caregivers and private for-profit agencies.
David Matthias, Bac.
Ministry of health and Home Affairs
Cecil Charles Building
Cemetary Road
St. John’s
Antigua
ARGENTINA:
Rosario, Santa Fe
Area de Servicios:
Cuidados Paliativos
Sistema de Intemacion Domiciliaria (SID).
Organizacion:
El Sistema de Internacidn Domiciliaria es un organismo mediador entre los proveedores de cuidados, (en este
caso grupo de medicos especialistas en oncologia) y los pagadores de la atencion (aseguradoras u obras
sociales). El SID administra contratos entre pagadores y proveedores y funciona como sistema de referenda
de pacientes. No tiene injerencia en honorarios, gastos por atenciones especificas, manejo de personal o en
decisiones clinicas.
Participantes en atencion directa:
El equipo base Io conforman Medico y Enfermero(a). Colaboran en la atencion segun necesidad psicologo,
nutricionista y terapeuta ocupacional. Medico y enfermero asumen rol educativo dirigido a un miembro de la
familia quien se compromete a ser la persona responsable de la atencion.
Medicos evaluan al paciente y familia, decidiendo la frecuencia de visitas y medicacidn necesaria, asi como
otras necesidades (cama ortopedica, oxigenoterapia, otros). Asi se acuerda entre SID y obra social el modulo
en que se incluiri al paciente. Existen diferentes modules segun complejidad de la situacidn.
Organizaci6n de la Atencion:
En el domicilio del paciente queda un maletin con todos los medicamentos necesarios, material desechable y
ficha clinica. Este maletin es de uso exclusive de profesionales, no hace uso de el la familia.
Miembros del equipo de salud, personal administrative (SID) y familia estan en contacto telefonico (celulares)
las 24 horas para solucionar emergencias. Las emergencias son escasas debido al enfoque de atencion
proactivo del personal de salud.
Se coordina atencion con servicios de emergencia en caso que estos sean requeridos, educando
adecuadamente a los familiares sobre estas situaciones. En caso que ocurra una emergencia, el familiar
1
•
•
llama a un servicio de urgencia desde donde acude un mddico al domicilio, es este mSdico el que tiene la
responsabilidad de contactara algun medico del equipo de cuidados paliativos en el domicilio.
Si se requiere servicio de rayos o exSmenes de laboratorio estos tambiSn se realizan en el hogar.
Semanalmente se reunen equipos de profesionales que atienden a un paciente determinado y
quincenalmente todos los miembros del equipo de cuidados paliativos en el domicilio se reunen para tratar
temas cientificos de interes general.
Financiamiento:
70% de la cobertura de salud es a t raves de “ Obras Sociales”, (seguros). El SID es un intermediario que hace
convenio con las diferentes Obras Sociales y los prestadores de la atencidn y tramita aceptacidn del modulo
frente a la obra social.
SID paga mensualmente por paciente atendido, si un paciente es atendido menos de un mes, se paga por dias
de atencidn.
Los pacientes son incorporados a diferentes “mbdulos” o programas de atenci6n segun la complejidad de
cada caso. El costo de los mbdulos oscila entre US$15 y US$45 por dia segun complejidad del caso.
•
•
•
•
•
•
Remuneraciones:
Medico recibe remuneracidn mensual de US$600. Este valor cubre 30 visitas domiciliarias, si las visitas
sobrepasan esta cantidad, recibe $20 por visitas extras.
El enfemnero recibe US$500 mensualmente por las atenciones prestadas visitas extras son cobradas aparte.
Otros profesionales cobran entre US$10 a US$15 por consulta.
Buenos Aires
“PALLIUM, Hospital Bonorino Udaondo”
Area de Servicios:
Cuidados Paliativos
PALLIUM es un programa sin fines de lucro que reune a profesionales y centros de cuidados paliativos con
implementacidn y prestigio en Buenos Aires y La Plata, que reunen experiencia en aspectos clinicos, docentes, de
investigacidn y organizacidn en medicina y cuidados paliativos. Pallium pretende responder con un alto nivel de
calidad a las demandas de formacitin, investigacidn, documentaci6n y asesoramiento en cuidados paliativos.
Pallium esta comenzando una experiencia piloto en cuidados en el domicilio a travds del hospital Bonorino
Udaondo. Se cuenta con medico, enfermera y auxiliar de enfermeria. En este momento esta enfocado a la
capacitacion de profesionales y tecnicos en cuidados en el domicilio.
I. Internacion Domiciliaria “En Casa"
II. Hospital Privado de Comunidad
BERMUDA
Service Delivery
Hospital social workers arrange for discharge using services such as Home Help and Meals-on-Wheels.
Organization
The demand for home care services in Bermuda is increasing due in part to shortened hospital stays.
Home health care agencies, as the term is used in the United States, do not exist in Bermuda. The Health
Department provides registered community nurses and, in addition, there is a Private Duty Nurses Register, which
is in the for-profit sector.
Participants
Other caregivers that provide home health care services include physicians, home resource aides, social workers
and therapists of various types. Home care providers must be licensed of have attended specific courses, thereby
assuring a certain standard of quality. The role of nurses has expanded substantially so that procedures formerly
restricted to the hospital setting are performed in the home.
Financial
Home health care is funded predominantly by the local government with some assistance form various charitable
organizations. Patients Assistance league and Service, for example, is a registered charity that cares for cancer
patients in their homes. Some private insurance companies needs will pay for certain home health.
Ann Smith Gordon Chairman
2
Patients Assistance League and Services (PALS)
P.O. Box DV BX
Devonshire, DV BX
BOLIVIA
Direccidn General de Salud, Ministerio de Salud y Previsidn Social.
Atencion domiciliaria que se maneja en el pais comprende: Atencion de parto en domicilio (Personal traditional,
auxiliares de enfermeria y familiares), atencidn de programas para la mujer y el nifio de nivel domiciliar por
responsables populares de salud supervisados por personal de enfermeria, control y seguimiento de embarazos,
control y seguimiento de nifios desnutridos, hidratatidn oral domiciliaria.
Para todas estas actividades, en el Smbito institutional y comunitario, se cuenta con manuales y normas
establecidas por el Ministerio de Salud y Previsibn Socia, su manejo es sistembtico por parte del personal
comunitario e institucional.
BRASIL
Rio de Janeiro
Instituto Nacional Del Cancer INCA
Area de Servicios:
Asistencia domiciliaria a enfermos oncologicos
Organization:
Participantes en la atencion:
Los miembros del equipo de salud que brindan cuidados en el domicilio en forma directa son: medicos, enfermeras
y auxiliar de enfermeria. Participan tambien en el equipo asistentes sociales, choferes y administrativos.
Se esta en proceso de entrenamiento de personal voluntario para asistencia de pacientes en el domicilio.
Organization de la atencion:
Previo al ingreso de un paciente al programa de cuidados en el domicilio se realiza entrenamiento de 5 dias a
familiar o persona que tomara la responsabilidad de atencion en el domicilio. Este entrenamiento se realiza
estando el paciente hospitalizado 5 dias antes del alta. Si el paciente no esta hospitalizado se interna con este
objetivo.
Se realiza evaluation del dolor a traves de escala analogies (1-10). En general existe un bajo consumo de morfina.
No se realiza evaluation de calidad de vida.
Financiamiento:
•
Inca vende servicios al estado, no asi a privados.
•
100% de los costos de salud Io cubre el estado
CANADA
Service Delivery:
British Columbia:
•
Home support services provide assistance with the activities of daily living.
•
Home support respite service provides relief for family caregivers.
•
Adult day center services provide personal assistance, supervision and organized
programs of health, social
nd recreational activities.
•
Meals program is a voluntary community service that provides meals to those who are unable to cook for
themselves.
•
Community home care nursing provides around the clock nursing care .
•
Community rehabilitation provides consultation, occupational and physiotherapy treatment.
•
Assessment and case management’s to ensure that clients receive appropriate continuing care services.
Alberta:
•
Alberta Assessment and placement Instrument (AAPI) standardizes documentation of assessment
information.
3
•
•
•
•
•
Case coordination is mandatory to endure that all clients have their needs assessed, are involved in serve
planning, receive appropriate serves and to have needs reassessed.
Treatment services include various types of therapy, social work and nutritional services.
Support services include personal care and homemaking.
Self-management care is an administrative option for service delivery and those considered must meet the
criteria for home care.
Palliative care for clients and respite services for family caregivers.
Saskatchewan:
•
Acute care which eliminate the need for hospital care.
•
Palliative care for client who are dying and wish to spend as much time at home;
•
Supportive care which assists the client to remain in the community and also provides respite to client
supporters.
•
Each of these types of homecare provides: assessment and care coordination, nursing, homemaking, meals
and home maintenance services for clients
Manitoba.
The following services are considered to be core serves of homecare:
•
Assessment of eligibility for home care services
•
Care planning
•
Case management
•
Coordination of services
•
Nursing service
•
Therapy assessment
•
Health teaching
•
Personal care
•
Meal preparation
•
Respite/family relief
•
Access to adult day care
•
Cleaning and laundry
•
Assessment for and facilitation of personal care home placement
•
Medical equipment and suppliers required supporting the care plan.
Especially programs include:
•
Self-managed care program/family-,managed care program
•
Home oxygen therapy program
•
Clustered care
• Terminal /palliative care
•
Support housing/alternative housing.
Ontario:
Professional services include nursing, occupational therapy, physiotherapy, social work, speech-language,
pathology, nutrition counseling and homemaking.
Specific support services include drug cards, medical supplies, health care equipment, and transportation to
and from medical appointments and in-house laboratory services.
Specialized services include HIV and IV therapy, home chemotherapy and palliative care.
Quebec
The range of services include:
•
Intake, assessment and orientation
•
Development of the treatment, plan or a service plan if a number of organizations are involved
•
Medical care (physician and nurses)
•
Rehabilitation (occupational therapy and physiotherapy)
•
Psychosocial services
•
Support services (personal care, domestic support, household management task)
•
Caregiver support (sitting services, respite)
Community organizations services (support, development of community resources, information, education)
•
Loan of equipment and technical support /aids
4
•
•
•
•
Health information (telephone response by nurses)
Group activities to provide support to clients and caregivers
Access to public nursing homes for people living at home
Reference to complementary resources
New Brunswick
The types of home care that are provided are:
•
acute care
•
continuing care
•
preventive care
•
palliative care.
•
Assessment, treatment, education and consultation are part of each type of care.
Nova Scotia
Home care services include:
•
care coordination
•
referral, home support
•
personal care
•
nursing and oxygen services.
Newfoundland
Core homecare services include:
•
Assessment and case management
•
Professional services
•
Home management(personal care, respite services and home maintenance)
Major categories of professional and home management services within the continuing care/home support
programs are:
•
Home nursing
•
Meals-on-wheels
•
Physiotherapy
«
Respite care
•
Occupational therapy
•
Day programs
•
Home support services
•
Personal care homes
Prince Edward Island
Core support services include:
•
Assessment to identify needs of clients
•
Care coordination (including care planning and reassessment)
•
Support services (personal care, household tasks, respite and environmental support)
•
Adult protection (investigation and assessment of reports of neglect, abuse)
•
Community support to identify, build and maintain services
•
Professional and consultative services (nursing, occupational therapy, physiotherapy, speech and
language pathology, pharmacy services, social work and dietetics).
Northwest Territories
Home care programs may include:
•
Assessment and case coordination
•
Home nursing
•
Personal care
•
Accreditation for activities of daily living
•
Homemaker service
•
Respite and palliative care
•
Meals program
•
Life skills training
•
Linkages with other consultation services (rehabilitation, nutrition and physicians)
Yukon
Home care programs include:
• Acute care services
•
Long-term services
5
•
Palliatives care
Within each service each program may include:
• Assistance with personal care, home management and meals
• Assessments regarding adaptations to the clients home
•
Help with dressing changes, wound care, medical treatment
•
Assistance with reparatory care and pain management
•
Help with basic exercises, braces, splints, orthotics
•
Counseling, advocacy, placement and referral services
•
Respite care
6
Organization
The objective of having medical and support services provided in the home setting are to meet
the needs of individual and informal caregivers.
The purpose of home care programs in Canada is to provide:
•
A substitution function for services provided by hospitals and long-term care facilities
•
A maintenance function that allows clients to remain in their current environment
•
A preventative function which invests in client service and monitoring costs.
Care Participants
Professional services such as nurses and therapist provide homecare and typically provided free
of charge. Support services such as homemaking, personal care, housecleaning and
transportation may require user fees.
Organization of Care
•
Provincial and territorial health/social services departments or local community/regional
health boards administer home care programs. In provinces social services departments
may provide where the departments are separate from health department’s services such as
homemaking and personal care for clients.
•
Home care services can be delivered in two ways: directly by home care program staff
and/or by external agencies (voluntary, proprietary, not-for-profit). Home support is
contracted out and professional services are also moving in this direction, although currently
staff delivers them.
•
There is a growth in privately purchased services since they are offering provide services to
people who are not eligible for publicly funded home care.
•
Client, professional and family/volunteer caregivers should be considered as part of the
“system's mix of services" to enable homecare.
•
Home care services vary across the country and depend on the home care policies of each
province or territory.
Financing
•
Publicly funded home care programs exist in every province and territory.
•
Home care is not included in the Canada Health Act therefore services are not insured in the
same way as hospital and physician services.
•
Provinces and territories are responsible for funding and providing services .
•
Professional services are provided free of charge.
•
Support services may require a user fee.
•
User fees depend on a sliding scale based on income.
•
Supplies, equipment and medical fees may or may not apply.
•
Eligibility criteria vary from program to program across the country.
Coordination
Home care in Canada has been defined as “an array of services enabling Canadians,
incapacitated in whole or in part, to live at home, often with the effect of preventing, delaying or
sustaining long-term care or acute care alternatives (ref: Health Canada 1990). This is well
illustrated in the Service Delivery section for each province and territory of Canada.
Health Canada
National Conference on Home Care
March 8-9, 1998
CHILE
Concepcion:
Servicio de Salud de Concepcion
7
Sub-Direction Medica, DIPRED
Sub-Programa de Cancer
Ministerio de Salud
Area de Servicios:
Atencidn a Domicilio y Cuidados Paliativos
Se considers la atencidn en el hogar cuando el paciente esta imposibilitado de deambular (por
dolor o falta de compafiia).
Organizacidn:
Existen dos modalidades para la organizacidn de las visitas domiciliarias:
•
Sectorizacion segun residencia del paciente y del prestador de servicios,
•
Atencidn es entregada por el equipo central independiente del lugarde residencia del
paciente.
Participantes en la atencidn:
Principalmente profesionales del equipo de salud y comunidad organizada a traves de grupos
voluntaries.
•
Los profesionales que realizan atencidn en domicilio son principalmente la enfermera y
asistente social, medico acude a domicilio solo si se necesita una evaluation para cambios
de medicamentos. Las visitas son libre demanda, segun las necesidades de cada paciente.
•
Los voluntaries realizan visitas semanales de una hora. Las funciones son principalmente de
acompanamiento y asegurar adecuada disposition e ingesta de medicamentos. Informan
resultado de cada visita a enfermera del programa.
Financiamiento
•
Empieza financiamiento formal de las atenciones en domicilio en diciembre de 1997 (hasta
ese entonces eran voluntarias). La atencion domiciliaria se considera dentro de la
programacidn general del servicio, con un pago mensual por paciente de $44(d6lares), con
una cobertura maxima de 4 meses.
•
Los voluntaries financian sus actividades a traves de proyectos municipales y actividades de
beneficencia.
Coordinacion con los diferentes niveles de atencion:
•
En general es expedita, debido a que los profesionales que conforman el equipo de atencion
domiciliaria prestan a su vez servicios en los demas niveles de atencion.
Santiago
Ministerio de Salud,
Servicio de Salud Metropolitano Oriente
Instituto National del Cancer
Area de Servicios:
Atencion a Domicilio en Cuidados Paliativos
La atencidn domiciliaria en cuidados paliativos procura dar al paciente y su familia el soporte
necesario para que el enfermo permanezca en el hogar durante la etapa final de la enfermedad y
hasta el deceso, siendo atendido por un equipo profesional interdisciplinario que realiza una
asistencia coordinada con los cuidadores, con el objetivo de prevenir y solucionar los eventos
relacionados con el fin de la vida desde una perspectiva integral.
1. Organizacidn:
Participantes en la atencidn:
•
Enfermera con destination exclusiva a trabajo en domicilio, 33 horas semanales
•
Chofer con capacitacion especifica para colaborar en la asistencia del paciente en domicilio,
44 horas semanales.
8
Psicologo con destination de 4 horas semanales, colabora en situaciones especiales o
criticas.
•
Medico con destination de 4 horas semanales
Organizacidn de la atencion:
El Programa Domidliario se desarrolla a traves de visitas domiciliarias interdisciplinarias y se
describe de la siguiente forma:
•
Visita de Diagnostico (tipo I): Se evalua realidad social y familiar de los pacientes que
ingresan al programa con el objetivo de estimar las condiciones de cuidado a future y
fortalecer la red de apoyo.
•
Visita de Seguimiento (tipo II): se realiza control de enfermeria regular definiendo frecuencia
segun situacibn clinica. Se realizan tratamientos, procedimientos, educacibn y apoyo
psicosocial, apoybndose en coordination interdisciplinaria.
•
Visita de asistencia al paciente agbnico (tipo III) se lleva a cabo control de enfermeria con
apoyo educativo y psicosocial enfocado a la proximidad de la muerte.
•
Visita de atencion de necesidades no medicas (tipo IV): Destinadas a aquellos pacientes que
no cuentan con una red de apoyo familiar y en su reemplazo son asistidos por un
voluntariado especifico, debidamente capacitado.
•
Financiamiento
•
El programa pertenece al sistema publico de salud y tiene un financiamiento mixto
(gubemamental-privado).
•
El vehiculo se obtuvo a traves de la donation de privados
•
Los gastos de gasolina y otros insumos, asi como el financiamiento de sueldos de
profesionales y funcionarios esta a cargo del Institute National del Cancer que depende del
Ministerio de Salud.
•
Otras instituciones privadas, como el Hogar de Cristo, aportan una ayuda economica
consistente en alimentos para ser entregadas a las familias mas pobres.
COLOMBIA
Cali
Centro Medico Imbanaco
Area de Servicios:
Cuidados Paliativos en enfermos terminales de cancer principalmente. Se brinda asimismo
cuidados a pacientes cronicos no terminales, como por ejemplo: pacientes con falla renal
cronica, SIDA, enfermedad de Alzheimer, falla cardiaca congestiva refractaria a manejo medico,
otros. Tambien se utiliza manejo domiciliario en pacientes post-quirurgicos con el fin de acortar
periodo de hospitalization. Se contrata con entidad de Home Care para compra de algunos
servicios.
Organization:
Participantes en la atencion: (rol de cada uno bien definido)
•
Medicos internistas (oncblogo con entrenamiento en cuidados paliativos)
•
Medicos generales
•
Enfermeras
•
Psicologo
•
Trabajador Social
•
Nutricionista
•
Terapeuta respiratoria (segun demands)
•
Auxiliarde enfermeria
•
Chofer
•
Se cuenta con grupo de apoyo que se junta cada 15 dias
9
Organizacitin de la atencion:
•
Medico coordination del programa hace visita inicial y evalua necesidades. Sobre la base de
esta evaluacidn se programa un determinado numero minimo de visitas por profesional (por
definir).
•
Cada profesional completa historia dinica, la cual se ingresa en sistema computacional
(Epiinfo), con el objetivo de realizarseguimiento, investigaciones y estadistica.
•
Se cuenta con sistema de beeper para trabajo en red.
•
Cada 15 dias se realiza consults externa de dolor y sintomas para pacientes ambulatorios
•
Se considers a la familia como pilar basico de la atencidn, esta se entrena segun
necesidades individuales de cada paciente. El proposito es disminuirtiempo de atencion
directa de enfermeria.
Financiamiento:
•
Se contrata con entidad de medicina prepagada (actualmente solo una Coomeva) a quienes
se vende “paquete de servicios”.
•
Aparentemente sin financiamiento de seguro estatal.
Coordinacion:
•
Se realiza difusion tanto en la comunidad en general como en la comunidad mddica, con el
fin de que sepan que se cuenta con este tipo de servicios.
•
A medida que se entregan los servicios se mantiene informado de la evolucion de los
pacientes a los medicos tratantes o que refirieron al paciente en una primera instancia.
GUYANA
Service Delivery
Nursing care in the home, including post-surgical follow-up, a well as counseling services for
patients and their families.
in addition to basic nursing visits to provide assessment and care, the service provides pre and
post-natal care, and assistance with bathing, personal hygiene, diet planning, and
companionship. A nurse may also accompany a patient to the hospital or assist those who need
to leave Guyana in order to receive medical attention in another country.
Organization
The Home Based Nursing Service in Guyana provides comprehensive nursing services in the
home. This privately run service was started in 1994. The service targets any patient in need of
home care, including recovering patients, the chronically ill and the handicapped.
Participants
All nurses on the Home Based Nursing Service must be registered with the General Nursing
Council of Guyana and must be certified and experienced.
D. Roberts
Principal Nursing Officer
Ministry of health
Brickdam, Georgetown,
Guyana
HONDURAS
Tegucigalpa
Area de Servicios:
Cuidados Paliativos, Centro de Cancer “Emma Romero de Callejas”
Organizacion:
10
No existe estructura especial para cuidados paliativos y cuidados en el domicilio, sin embargo
existe grupo profesional que realiza visitas domiciliarias a pacientes que ya no pueden asistir a
consultas, que han sido pacientes en el hospital y que han estado en contacto con el personal en
todo momento. El grupo de profesionales, que realiza las visitas domiciliarias segun necesidades
de los pacientes, Io integran mbdicos residentes, hematooncblogo, enfermera, trabajador social,
y auxiliar de enfermeria.
JAMAICA
Services:
•
Home visits
Organization
Traditionally, Jamaican families provide home care, with assistance from other members of the
community when it is needed. However, as women join the workforce and younger family
members move to urban areas in search of economic opportunities, the elderly are increasingly
being left without the traditional sources of support, resulting in the growing need for formal home
care services.
Currently, personal and support care is available for vulnerable groups, for example, infants,
children, the physically and mentally disabled, and the chronically and terminally ill. The provision
of care is based on age, physical and mental abilities, and healthstatus.
Participants of Care
A Visiting Nurse Service and a Community Health Aide Service assist clients in their homes.
Caregivers are employees of Jamaica’s public primary health care system. These providers
include nurses and midwives, enrolled nurses (LPNs) and nurse's aides, as well as physicians
and physical therapists.
Financing
At present, out-of-pocket payments by clients of their families finance home care services.
However, some health insurance companies are beginning to include home care in their
coverage.
The Permanent Secretary
Ministry of Health
10 Caledonia Avenue
Kinston 5
Jamaica
MEXICO
Guadalajara
O.P.D. Hospital Civil de Guadalajara “Dr.Juan I. Menchaca”
Area de Servicios:
Cuidados Paliativos
Organizacion:
Los objetivos de los cuidados paliativos domiciliarios son el fomento de la autonomia del
enfermero y la familia y el respeto a su dignidad.
Participantes en la atencion:
El equipo es multidisciplinario y cuenta con medico, enfermera, trabajador social, psicologo y
voluntaries de la fundacion mexicana de medicina paliativa y alivio del dolor en cancer
(FMMPAC).
11
Organizaci6n de la atencion:
•
Se realiza una revision de casos y se seleccionan a aquellos pacientes que por sus
caracteristicas deben ser visitados y atendidos en sus domicilios,
•
En otros casos la asistente social recibe la Hamada telefbnica con la petition por parte del
paciente y/o familia requiriendo cuidados en el domicilio. En este caso se realiza breve
interrogatorio y se determina la prioridad para realizar la visita por parte del equipo de salud
•
La asistente social solicita al area de transporte el traslado del equipo de la unidad de
cuidados paliativos al hogardel paciente.
•
En el domicilio, el medico determina el manejo a seguir, teniendo en cuenta las necesidades
del paciente y su familia. En este momento se determina si el paciente puede seguir
recibiendo los cuidados en el domicilio o si es necesario el traslado al hospital (previo
consentimiento del paciente).
•
La enfermera es la encargada de explicar y adiestrar al cuidador y a la familia sobre el
manejo y cuidado del paciente de acuerdo a las caracteristicas particulares de la
enfermedad y a la idiosincrasia del grupo familiar. Se pone gran bnfasis al mantenimiento de
la intimidad, pudor y dignidad de los pacientes ante su grupo familiar y el entomo social.
•
Alguno de los procedimientos realizados durante la provisibn de cuidados en el domicilio
son: toracocentesis, colocacibn de sondas, paracentesis, enemas evacuantes, entre otros.
•
El horario para la entrega de servicios es de 8:00 a 15:00 horas. Por servicio de radio
localizador, los pacientes pueden solicitar servicios de urgencia a personal del hospital sin
costo para ellos y durante las 24 horas.
•
A raiz de los bajos salaries, los profesionales se contratan a tiempo parcial.
Financiamiento
•
El Hospital Civil de Guadalajara “Dr. Juan Menchaca” es la entidad encargada de cubrir
salaries de quienes laboran en la unidad de cuidados en el domicilio. Es esta entidad asi
mismo la que suministrar los medicamentos opiaceos, camas de hospital, transporte u otros
insumos necesarios.
•
El O.P.D. es un organismo publico descentralizado que recibe financiamiento de la
federation (nivel nacional) y del gobierno del estado.
•
La atencibn es abierta ya que es un hospital de beneficencia. Se atiende a personas sin
seguridad social o seguro medico.
•
Los voluntaries, agrupados a traves de la Fundacibn Mexicans de Medicina Paliativa y Alivio
del Dolor en el Cancer A.C. (FMMPAC) financian sus actividades a traves de una colecta
realizada una vez al ano. Los fondos son destinados a ayudas econbmicas y en especie
tales como: despensas, traslados, examenes de laboratorio, otros.
•
Los fondos recolectados a traves de estas colectas anuales alcanzan un promedio de entre
US$2,500 a US$3,000; esta cantidad se distribuye segun numeros de pacientes por afio y
necesidades especifica.
•
No se cobra por visita a los pacientes, ni por procedimientos realizados. Una estimation del
costo de visita por paciente fluctuaria entre US$15 a US$30 dependiendo del procedimiento
realizado
Coordination con los diferentes niveles de atencion:
•
Se difunde la labor que realiza la unidad de cuidados en el domicilio, dentro y fuera del
hospital. Al interior de la institution en los servicios de oncologia y clinicas del dolor. Fuera
de la institution la difusion se realiza a traves de medios masivos de comunicacibn (radio y
television).
•
Existe un servicio de referencia y contrareferencia. Al recibir a un paciente para cuidados en
el domicilio se obtiene un resumen clinico del medico tratante, asi como la information
acerca de como se entero del programs de cuidados en el domicilio.
•
Durante la provision de cuidados en el domicilio se mantiene comunicacibn con el medico
tratante. Despues de la muerte del paciente se envia resumen de contrareferencia donde se
infonma sobre deceso del paciente y las condiciones en que este ocurrib.
12
Printipales cireas de problemas: Coordination y colaboracion por parte de paciente y familia,
tramites burocraticos en el sistema de salud y dificultad de acceso a transporte, Io que dificulta la
realization de visitas con la frecuencia requerida.
NICARAGUA
Nicaragua has no formal system of home health care perhaps in part because it has a young
population. In 1990, 47.9% of the population was under the age of 15. Health care, including
mental health care, is providing by the Ministry of Health. Six "day hospitals" in the city of
Managua provide counseling and occupational therapy. Social services, which in Nicaragua
include homes for the aged, are provided by an institutional called Inssbi. In the entire country,
there are 21 elder homes or nursing homes. Most of these homes are dependent upon the
national government for funding, with supplemental funding coming from local governments and
volunteer organizations. A few are privately financed.
Dr. Carlos Jarquin Gonzales, Director General of health Promotion and Protection
Dr. Guillermo Gosebrunch Icaza, Director of Infectious Diseases
Complejo de salud “Dr. Conception Palacio"” Managua
PANAMA
Provincia de Los Santos
Ministerio de Salud
Cuidados en el Domicilio es una necesidad consciente por parte de los profesionales, sin
embargo se ve limitada por falta de transporte y personal profesional.
Las visitas domiciliarias realizadas tienen un enfoque preventive y de diagnostico precoz
principalmente. Se realizan visitas a los inasistentes a vacunas, controles citologicos, puerperas,
embarazadas, diabeticos e hipertensos. En algunos casos a pacientes encamados, con
problemas mentales, desnutridos o a aquellos que rechazan ser hospitalizados.
Cuidad de Panama
Asociacion Hospes Pro Cuidado Paliativo
Area de Servicios:
Asociacion sin fines de lucro, data de 1994, cuya finalidad es la compania del moribundo y su
famiiia en el proceso de muerte y duelo. Desde el alivio fisico, emotional, psicolbgico y espiritual.
Se atienden enfermos terminales de cancer y SIDA.
Organization:
Participantes en la atencion:
•
Participan profesionales de las ciencias de la salud (medicos enfermeras, psicologos) y
laicos que pertenecen a la pastoral de enfermos de la Iglesia Catolica
Organization de la atencion:
•
Existe consejo directive integrado por miembros fundadores, directives y asesores.
•
Se realizan reuniones semanales de 2 horas de duration.
•
Anualmente se atienden entre 10 y 12 casos.
Financiamiento: a traves de donaciones.
Home care services in Panama are provided by private nursing groups and for-profit agencies. As
the Ministry of Health endeavors to provide coverage for that portion of the population not
covered by social security or by private insurance
Coordination:
Los pacientes ingresan a traves de referencias de los miembros del grupo que pertenecen al
tercer nivel de atencion.
13
Dr. Nilda Chong, MPH
Departmento de Salud de Adultos
Ministerio de Salud
Apdo. 2048
Panama
PERU
Traditionally, the elderiy in Peru live at home and are cared for by relatives, or they are placed in
private institutions. Wealthy families may hire aids to assist with the care of the elderly person,
but this is rare.
Some small private institutions, or "academies," exist which employ home care and health aides,
but these employees primarily care for infants rather than the elderly.
Carlos Santa-Maria, M.D.
Consultant to the Vice-Minister's Office
Ministerio de Salud
Av. Slavery s/n
Lima, Peru
SAINT KITTS
Organization
In Saint Christopher (Saint Kitts) and Nevis, the majority of home health care is provided by
private organizations, churches and voluntary organizations. District public health nurses visit
homes on a regular basis to provide assistance to persons who are unable to attend regular
clinics. The public nurses fall under the jurisdiction of the Ministry of Health.
Patricia A. Hobson
Permanent Secretary
Ministry of Health and Women’s Affairs
P.O. Box 186
Church Street Basseterre
St. Kitts, W.l.
ST. LUCIA
Organization
The government has realized the need to increase services for the elderiy as people are living
longer and more of the population is migrating to the cities. Non-governmental organizations have
been encouraged to establish residential homes and day care centers. However, families are also
encouraged to care fortheir elderiy at home.
Participants
Currently, five agencies employing 50 professional staff, including physicians, nurses, home
health aides and other therapists, provide home care in St. Lucia.
Gilrey Joseph
Ministry of Social Affairs
New Government Buildings
Waterfront, Castries
St. Lucia, West Indies
TRINIDAD AND TOBAGO
14
Trinidad and Tobago does not have a formal home care delivery system. In general, the elderly
are cared for in the home by relatives or paid help, most likely aides or nursing assistants.
Affluent families may elect to hire a trained private nurse. Two or three private agencies keep a
list of nurses, assistants and aides who desire this type of work.
The number of nursing homes for the elderly has increased, but these homes are not accredited
or administered by the government.
Dr. P. Ramal
PMO (CS)
Ministry of Health
Rondabout Plaza
Barataia
SURINAME
Services:
Cost-effective maternity services. Both Pre and postnatal services are provided. A basic package
offers prenatal information, advice and guidance, whereas, post natal services offer mother and
childcare and monitoring. Physicians and midwifes provide information about the use of health
care centers and vaccination programs.
Organization:
The delivery of Primary heath care is the responsibility of the government; however, civilian and
non-govemment organizations provide substantial care. Suriname recognized its need to develop
primary care at the village, local and national level, which will allow individuals and families to
help themselves. The Suriname Home Care Foundation developed a service delivery models
which for Paramaribo (the capital) which is being used for the entire country, including the
Amerindian and Maroon indigenous groups.
Care participants:
•
Nurses
•
Midwifes
•
Physicians
•
Pilot Project
Foundation for the Support of Home care in Suriname (SOTS)
Suriname Home Care Foundation (STS) Established in 1994.
STS’s purpose is to develop a viable and sustainable system for professional home care,
especially in the Amerindian and Maroon communities. They developed a three-year pilot study
(1995-1997) with the following objectives in mind:
•
Provide different types of packages of services
•
Become cost effective in the long run
•
Demonstrate to the government that professional home care can contribute to lowering health
care costs and that home care provides a more client-Fridley treatment,
•
Acquire government and insurance funding for professional home care services and
•
Convince other smaller private home care initiates in Suriname of the need to cooperate and
dorm an association.
Financial:
•
The pilot study was supported by SOTS and the Suriname Medical Mission organizations.
•
STS is building relations with the business sector both inside and outside of Suriname to
address concerns about the sales of home care equipment and supplies. Their objectives
include:
15
•
•
•
To guarantee that STS continues to subsidize the professional home care of those in the
fringes of life long to reach government aid
To contribute to create the financial means necessary to make STS a cost-effective system in
the long run.
To convince the government of the contribution that a well-organized professional home care
system can make by finding ways and means to finance the costs of health care.
Coordination:
Homecare is viewed as an inextricable part of primary care delivery-a means to individualize
primary care services and health information in the community. The first national Congress on
Home Care was held in Suriname in March 1988.
Ernst Stanley E. (1997) Home Care in the Republic of Suriname. Caring.(16) 26-7.
TRINIDAD AND TOBAGO
Organization:
Trinidad and Tobago does not have a formal home care delivery system. In general, the elderly
are cared for in the home by relatives or paid help, mostly likely aides or nursing assistants.
Affluent families may elect to hire a trained private nurse. Two or three private agencies keep a
list of nurses, assistants and aides who desire this type of work.
Dr. P. Ramal
PMO (CS)
Ministry of Health
Rondabout plaza
Barataia
UNITED STATES OF AMERICA
Services:
Many home care organizations also provide a wide variety of other services,
Including:
• physical therapy
• occupational therapy
• speech therapy
• medical social services
• nutritional services
• Day care
• Respite care
• Meals on wheels
• Transportation
Organization:
Home care is appropriate whenever a person needs assistance that cannot be easily or
effectively proved only by a family member or friend on an ongoing basis for a short or
long period of time.
Personnel
Home care agencies employ a variety of professional and paraprofessional to deliver
home care services:
• Nurses
• Home care aides
16
•
•
•
•
•
Social workers
Therapists
Physicians
Pharmacists
dietitians
Organization of Care
Home care services are provided by home care agencies. Home care agencies are
public organizations or private nonprofit or for profit organizations, that have developed
over the past century around a core of professional nursing services and home care aide
services. Home care agencies can be categorized into three main groups: home health
agencies, home care aide organizations and hospices:
Home Health Agencies are the most common. Home health agencies are concerned
with the treatment or rehabilitation of patients who need skilled nursing care or therapy.
Their patients are predominantly under the care of a physician and the care they receive
through the home health agency in accordance with a physician's order. These agencies
offer a multidisciplinary program of care-usually; nursing and home care aide services at
a minimum. The Medicare-certified agency is the prototype home health agency.
Home care aide organizations or paraprofessional organizations are primarily or
exclusively concerned with the delivery of care to functionally impaired persons who
need help with personal care, such as bathing, and with homemaking services.
Hospices provide palliative care for patients in the final stages of a terminal illness
through a team composed of physicians, nurses, social workers and counselors who are
concerned with the physical, psychological, social, and spiritual welfare of the patient.
Financial
Home care is paid for by a variety of sources. Often it is paid for by the individual or the
family, but both private and public insurance programs cover some home care costs.
Benefits and requirements vary greatly, however. For those whose insurance does not
cover home care, some agencies offer a sliding-scale fee schedule so that a family need
pay only what it can afford.
Major payment sources that cover home care include Medicare, Medicaid, Social
Services Block Grant, Older Americans Act, private health insurance, Veterans
Administration, workers’ compensation, health maintenance organizations (HMO),
CHAMPUS, social services organizations and patient/private pay.
Medicare:
It is for those 65 and over. The federal health program pays for home health services,
some home making and agency-provided medical supplies and equipment.
Medicaid:
This is for low-income people. Each state has its own set of eligibility requirements.
Home health services must include part-time nursing, home health aide and medical
equipment and supplies.
Social Services Block Grant:
17
States receive allotments of funds on the basis of the state’s population. In-home
services may include home care aide chores and personal care.
Older Americans Act:
It is for those 65 and over. IN-home services include home-delivery meals, home care
aides, personal care, chore, escort and shopping services.
Private Health Insurance:
Policy coverage varies. Many policies only cover services that already are covered by
Medicare.
Veterans Administration:
Veterans with a 50% or more service -connected disability are eligible for home health
care coverage. A physician must authorize services.
Workers Compensation:
Any person needing home care services as a result of injury on the job is eligible.
Health Maintenance Organization
Organizations with Medicare contracts must provide Medicare-covered services,
included home care.
Champus:
For dependents of active military personnel and retirees. On a cost-shared basis home
care is provided.
Social Service Organizations:
Organizations that operate with private charitable funds may offer supportive health care
services. Services may require payment, donation or are provide free of charge.
Patient/Private Pay:
Home care services can be personally paid for. Most home care services are paid out of
pocket. Scope of services and price varies.
Medical equipment is supplied by a separate and distinct industry. Although a relatively
few home care organizations sell and rent medical equipment as a sideline to the
services they provide, the great bulk of the medical equipment is marketed by other
organizations, which are generally referred to as "home medical equipment dealers."
Some 6,000 to 7,000 companies sell and rent home medical equipment. Find/SVP, a
New York-based market research organization, estimated the home care products
market at $1.6 billion in 1992, and predicted it would grow at an annual rate of 9.6
percent to reach $2.4 billion by 1996.
Coordination
Home care agencies bring these services into the home, singly or in combination, in
order to achieve and sustain an optimum state of health, activity, and independence for
individuals of all ages who require such services because of acute illness, exacerbation
of chronic illness, or long term or permanent limitations due to chronic illness and
disability.
National Association for Home Care
18
228 7th Street, SE
Washington, DC 20003
URUGUAY
Montevideo
Departamento de Oncoloqia del CASMU, asistencia a enfermos terminales.
Area de Servicios:
Asistencia domiciliaria a enfermos oncologicos terminales u otros que no reunan las
caracteristicas de terminal pero que por diversas razones (dificultad para traslado u
otras) sean referidos por oncologos.
Organizacion:
Participantes en la atencion:
• Los profesionales que en la atencion en el domicilio son: medicos enfermeras,
fisioterapeuta y nutricionista principalmente. Psicologo actua como voluntario.
• Se cuenta con apoyo de auxiliar de enfermeria.
Organizacion de la atencion:
• En un lapso menor 48 horas habiles desde la referencia, medico de cuidados
paliativos realiza visita, planifica tratamiento y abre historia clinica domiciliaria.
• Atenciones sucesivas en el domicilio se realizan segun necesidades especificas.
• Se realizan visitas de duelo.
• Existe base de datos para almacenar la information especifica de los pacientes
asistidos.
• Las maniobras realizadas son escasas, incluyen puncion evacuadora de ascitis,
extraction de fecaloma, entre otras.
• Los procedimientos realizados en el domicilio incluyen: toma muestras de examenes
de laboratorio, oxigenoterapia y examenes radiologicos principalmente
• Existe evaluation y seguimiento continuo de resultados con el objetivo de corregir
•
prontamente los problemas
Aproximadamente un 86% de pacientes que reciben cuidados en el domicilio fallecen el
domicilio.
Financiamiento;
no existe information al respecto
Coordination:
•
Medicos oncologos refieren a pacientes a sistema de cuidados en el domicilio.
•
Los pacientes son referidos desde servicios de oncologia (ambulatorio y hospitalizados),
servicios de urgencia, por medicos particulares, otros.
De los pacientes referidos 89% son ingresados al sistema de cuidados en el domicilio
North and South America: (3rd International Home Care Nursing Conference 1998 Seoul)
WHO Collaborating Center
Frances Payne Bolton School of Nursing
Case Western Reserve University
10900 Euclid Avenue
Cleveland, OH 44106-4904
USA
Tel: 1 (216) 368-5356
19
Luirj H 4 3< F
I
WORLD HEALTH ORGANIZATION
STUDY GROUP
HOME-BASED AND LONG-TERM CARE
Ma’ale Hahamisha, Israel
§
5-10 December 1999
“WESTERN PACIFIC REGION OVERVIEW OF WORK
IN PROGRESS AND MAJOR CONCERNS ON
HOME-BASED AND LONG-TERM CARE”
Ms Kathleen Fritsch
WHO Nurse Educator Fiji
World Health Organization
Regional Office for Western Pacific Region
LTH/HSC/SG/99/8
STUDY GROUP ON
HOME-BASED AND LONG-TERM CARE,
5-10 DECEMBER 1999
Western Pacific Region Overview of Work in Progress and Major
Concerns on Home-Based and Long-Term Care
Kathleen Fritsch, WHO Nurse Educator
Political, economic and cultural context
The Western Pacific Region presents an interesting array of political, economic and
cultural contexts and an equally various set of demographic and epidemiological profiles. Data
contained in the WHO publications. Health of Older Persons in the Western Pacific Region,
permit comprehensive demographic and policy analysis of older persons m populations
throughout the Region. Consisting of some 36 autonomous, quasi-autonomous and dependent
states extending over a vast geographical area, the Western Pacific Region encompasses nearly
half of Asia and all of Oceania. The majority, all but eight, in fact, are island states, most quite
small both in land mass and in population, although also included are Australia, Japan, New
Zealand, Papua New Guinea, the Philippines and Singapore, all with populations numbering in
the millions. The bulk of the Region’s population, however, resides on the Asian mainland,
mostly in China, along with Korea, Malaysia, Mongolia, Viet Nam, Cambodia and Laos.
Political systems range from the monarchical, as in the Kingdoms of Brunei and of
Tonga, to the state socialisms of China and Viet Nam, although most are constitutional
republics, practicing modified variants of the Westminster parliamentary system. Some of the
market economies in tire Region are among the most dynamic in the world, and the Region is
not without resources, although those richest in resources, Papua New Guinea and the Solomon
Islands, for instance, have remained, by and large, along with Cambodia and Laos, the least
developed. The majority of the countries in the Region, however, lie in Oceania, small often
-2-
quite isolated island states or territories, some consisting entirely of atolls, that are identified
culturally as Polynesian, Melanesian or Micronesian. Many of these countries have small
Asian or European communities as well, which have been instrumental in the limited
development that has occurred.
Awareness efforts and initiatives concerning ageing in the region were begun in some
countries as early as 1983, particularly in Australia, New Zealand and Japan, which were the
first developed and industrialized nations within the Region. Increased life expectancy at birtn,
reduced child mortality and decreased birth rates were clear indicators that their populations
would soon experience rapid ageing. More than half of the countries in the Region have at
least some programmes and services for older persons already in place. During the past
decade, most of the countries in the Region have taken steps towards establishing policies and
plans for tire health of older persons.
Demographics and epidemiological developments
The Western Pacific Region contains China, whose population at 1.3 billion people is
more than twice as large as the sum of all of the other countries in the Region combined. It
also contains tiny Tuvalu, whose population at 15 000 is still larger than that of five other
states within the Region. It contains Japan, where the median age has already reached 40 and
life expectancy at birth is nearly 80. It also contains Nauru, Papua New Guinea, Laos and
Cambodia, all countries where life expectancy at birth is only slightly more than 50 years and
the median age is 20 years or less.
Most of the Western Pacific countries have experienced significant population growth
due to increased life expectancy and lowered infant and child mortality, and in some cases,
despite high rates of immigration. It has been estimated that by the year 2050, more than 20%
of the population in the Western Pacific Region will have reached 60 years of age, compared to
only 16% in all other parts of the world. Although 47% of countries in the Region have not
formulated national policies with respect to ageing, several countries have established national
legislation devoted to older persons, including Australia, Japan, New Zealand, Singapore,
Mongolia and the Philippines.
Many of the countries in the Region, in fact, have quite youthful populations and the
immediate concent for government is a matter of finding employment or other productive
activity for growing numbers of school leavers. Korea, Singapore and China are anticipated to
be the next countries in line for whom the needs of a relentlessly ageing population will soon
be. if they are not already, a pressing issue. Change, however, particularly in the fonn of
development and industrialization, is occurring throughout the Region and as the world
continues to shrink there can be little doubt that all of these countries will experience problems
associated with a rapidly ageing population during the first half of tire 21st century.
Most Pacific Island countries are undergoing epidemiological transitions in which birth
rates, and infant and child mortality' rates are declining, and as the older population grows, the
morbidity' and mortality' rates of noncommunicable disease are rising. Some countries are
continuing to face the double burden of conununicable diseases common to developing
countries as well as the noncommunicable diseases common to developed countries, along with
a trend towards more sedentary' lifestyles. The noncommunicable diseases, in particular,
cancer, heart disease, hypertension, cerebrovascular accidents and diabetes, in combmation
with lifestyle changes, lead to increased rates of premature death and disability. Chronic
diseases, and increasing environmental and economic stress, increase the risk of older persons
developing impaired psychological, physiological and cognitive functioning.
Older persons experience altered homeostatic mechanisms, and often, one or more
chronic diseases, which put them at increased risk for diminished function and disability.
These complex health changes of older persons, along with increased prevalence of disability',
-4-
can contribute to high costs of health care, due to increased hospitalizations, longer hospital
stays, increased use of health care technology, increased use of medications and increased
demand for social services and supportive home care and day-care programmes. Other factors
contributing to the increased health care costs include inflation and health care provider
practices and demands.
The care-takers of aged family members are themselves at significant risk for rising
incidences of disease and disabilities and possible decreased life spans, due to the high
prevalence of noncommunicable diseases in most countries. Urgent attention must therefore be
paid to promoting health and preventing disease in children and young persons, as well as
middle-aged and older persons. If children in their youth fail to receive adequate education and
are at risk for disabling noncommunicable diseases, less human and economic support is
available to provide for the needs of society's older persons. Maintenance of good health of
potential care-takers is essential if home and community-based care of older persons is to be
successfill.
Urbanization is increasing throughout the Region, though often without adequate
improvements in housing and living conditions (safe water and sanitation) for the urban poor.
Many older persons may be left alone in rural conununities as younger members of the family
search for work in cities. Economic recessions, slow economic growth, declining revenues,
growing unemployment, increased competition for limited resources, inadequate fiscal and
human resource management systems and shortages of in-country trained health professionals
are all factors contributing to the difficulty7 of effective planning for old age.
Changing family structures
Attempts to maintain traditional culture and family values can be difficult to sustain in
the face of increased rates of violence, decreased size of extended families due to migration,
urbanization, and the pressures of modem consumerism. Family size is decreasing in some
-5 -
countries due to decreased fertility rates. HIV and AIDS, civil conflict in some countries and
losses of family members due to outward migration for better job and life opportunities.
Younger family members are moving in greater numbers to urban areas, leaving increased
numbers of older persons alone in more isolated settings. Contributing stresses to families also
include the loss of essential caretakers of young children when grandparents are chronically ill
or disabled.
The model of the family for the developing world is the extended family; the model for
the developed world is the nuclear family. The transition from one to the other might be termed
'nuclearization. ’ In some countries the process may be gradual and planned to the extent that
the creation of one does not necessarily entail the destraction of the other. Other countries may
not be so fortunate. Countries the size of China, Korea, Malaysia, Viet Nam and the
Philippines are large enough so that the best efforts of the best people are required over a
period of time, perhaps three or four decades or more, to bring about the many benefits of
modernization. In tiny countries such as Palau, Niue, Tokelau, Nauru, Cook Islands or Wallis
and Futuna, where whole countries are smaller than a small town and even,' citizen belongs, by
blood or marriage, to essentially one large extended family, the effects of nuclearization can be
devastating.
In many of the Pacific Island countries, although urbanization is increasing, at least
50% or more of the populations live in rural areas. Maintenance of older persons in villages is
the norm in most of the developing countries of the Region. Though families provide support
to the elderly, in many developing countries there continues to be a lack of community-based
services for older persons. Nongovernmental organizations providing supportive services and
respite care are limited in number. A lack of formal hospital discharge planning programmes
in many developing countries contributes to increases in hospital re-admission rates of older
persons.
-6-
Ro/es of women
Women's roles are becoming more complex and multifunctional as women are usually
the primary care-givers, holding both household and out-of-household jobs. The care of older
persons is. in many cases, the responsibility of women, who may be caring for their young
children and for their ageing, disabled parents at the same time. The labour of women in the
home is often not recognized in terms of its economic contribution to societies. Women are
facing increased risk of domestic violence and neglect as economic decline impacts family
functioning. Women in later life are much more likely to be suffering from disabilities, hi
some countries, women may experience discrimination on the basis of gender, class, or religion.
Increasing poverty and stressfill lifestyles contribute to higher rates of illness and disability for
women.
Nurses represent the front-line in the ongoing struggle to meet the growing needs of the
elderly. For instance, in Samoa, an Integrated Community Health Nursing Scheme has been
implemented which began as a means to provide maternal child health services through a
network of women's committee clinics. The service has expanded in recent years to provide
service to schools and now includes home care visits, as well. Here is an excerpt from a WHO
mission report filed earlier this year.
"By noon the nurses had visited a stroke patient and taught the family how to do
range ofmotion exercises; had visited a patient with probable Alzheimer's disease and given
support to herfamily; had caredfor an elderly man with hypertension, checking his blood
pressure and monitoring his medication; and had checked a 93 year-old woman with an
enlarged heart and slight ankle oedema. "
A subsequent excerpt from the same report details activities of the home-care team later
that same day.
-7-
"JJ e accompanied the home-care team to visit three cases needing palliative care. All
three had terminal cancer and were given narcotic pain medication. Unfortunately.
morphine had been out ofstock for the past month, so the nurses were administering
pethidine injections around the clock. One patient was in the late stages of cancer of the
pancreas. His home-care team provided support for his wife, a nurse, who could do much of
his care. The second patient had cancer ofthe femur and needed six-hourly dressing
changes for a large external tumour. The third patient was a young man who had undergone
surgery overseas for cancer ofthe oesophagus. He had a tracheotomy and a gastric feeding
tube. The home health team had helped him and his family set up a self-care situation, which
was truly amazing. When we visited, we found the young man lying on a mat, comfortably
propped up with pillows, his family nearby. Within his reach was a set-up for suctioning his
tracheotomy tube. The equipment for his gastric feeding was neatly arranged on a low-lying
table, also within his reach. The young man was more comfortable giving his own care, so
the nurses had taught him to suction his own tracheotomy tube and to feed himself through
his gastric lube. The nurses visited him twice a day to monitor his care and to give him his
injections. Under almost any other circumstances, this patient would have been hospitalized.
But with the help of the home-care team, hospital costs have been saved and the quality of the
man's life has been improved immeasurably. ”
The Integrated Community Health Nursing Service in Samoa was not designed with the
primary intention of providing home care services for the elderly. It is merely one of many
functions that the service performs. Elderly care, in fact, may be of lower priority in Samoa
than in most other countries in the Region, as its older person dependency ratio of 3.5 is
substantially less than its young dependency ratio of 88.8. Samoa, in an attempt to meet the
health care needs of its children, has demonstrated, simultaneously, a capacity to fulfil a major
component of the home care needs of its elderly citizens.
-8-
Fiji. a country with a population four times greater than that of Samoa, and with an
older person dependency ratio of 6.5. is culturally quite similar to Samoa, particularly with
regard to the respect accorded to their aged citizens. Most persons continue to be cared for in
the home, with only 0.4% of older persons residing in Homes for the Aged. A major nurse
training initiative in Fi ji, the institution of nurse practitioner training, can be expected to
contribute to quality' health care of the elderly there, as the nurse practitioner graduates will
come equipped to assess and manage common health problems, including problems of older
persons. The sen-ices provided by nurse practitioners should help to alleviate gaps in the earn
of older persons due to shortages of medical personnel.
Concerns/Needs Arising
Perhaps it would be useful at this point to consider a few of those elements that are
necessary if quality health care for the elderly is to become a reality in the coming decades.
Improvements in the quality of life of populations in the Region requires that emphasis be
placed on tire preventive health care of children and youth, and the establislnnent of health and
social programmes focused on healthy ageing. Such healthy ageing programmes would
emphasize maintenance of good nutrition, regular exercise, stress reduction, and avoidance of
smoking.
Attention needs to be given to the analysis of alternative methods of health care
financing to ensure that national budgets, taxes and savings plans and pension funds will
provide sufficient economic support for home and community-based services, permitting
elderly persons to five independently as long as possible.
National councils on ageing and appropriate policies, if not already in place, should be
established. Policy development should take into account gender issues. Women are intimately
involved in multi-focal work and care-taking roles; and though they live longer than men,
women experience greater morbidity and disability than men.
-9-
Human resource development needs to include the training of health care workers in
quality care of older persons, along with delineation of methods of monitoring the quality of
health care received by older persons. The development of standardized functional assessment
guidelines for health workers is needed, in order to facilitate assessment of older persons’
functional status, medications, social interactions and support, and to identify early signs of
disease or altered functioning. The quality of care of older persons can be improved through
the use of guidelines, which delineate monitoring parameters for persons with chronic diseases
such as diabetes, hypertension and cardio-cerebrovascular disease.
Strengthening of community-based support and services for care of older persons in the
community requires:
•
Support and education for caregivers;
•
In-home adaptive devices and equipment to support continued functioning
of older persons in the home: along with
•
Respite, foster and day-care.
The success of community-based support to older persons will also require that the
services of nongovernmental organizations providing support to the elderly (meals, respite
home care, assistive care in the home, etc.) be strengthened.
Highly developed, high income countries in the Region, with demographically older
populations, such as Australia, Japan and New' Zealand, have already developed systems of
care for older persons that are well established. In Japan, for example, a wide variety of
non-profit organizations provide support and in-home services for older persons in the
conununity'.
- 10-
Rapidly developing, upper middle income countries, and those with demographically
middle-aged populations are devoting increased attention to the development of health services
for older persons. They often have a variety of community-based services for older persons.
Guam has a relatively flill range, including adult day care services, case management services.
in-home assistance programmes, and respite care and transportation services to support older
persons and family members providing care for older persons. Older persons in the
Commonwealth of the Northern Mariana Islands, although they have Medicare health
insurance, and. for some. U.S. social sendee retirement benefits, may not be able to afford
home nursing assistance.
In Palau, the family is the primary caregiver for the elderly. The Ministry of Health
subsidizes 80% of medical and dental care of elderly persons
Private clinics, when providing
care to the elderly, are also subsidized by the Government. Periodic home visits, when
necessary, are provided by public health nurses.
In selected lower income and low-income developing countries, including Fiji, Samoa,
the Philippines and Viet Nam, health sendees for older persons are being initiated. Fiji has
attempted to train most of its public health and primary' health care nurses in care of the
elderly, using strategies and content outlined in the WHO publication entitled, Quality Health
Care for the Elderly. A number of physicians and nurses have undertaken fellowships and
training courses in rehabilitative and geriatric medicine, geriatric nursing and community-based
rehabilitation. Many health-training curricula still require changes to place increased emphasis
on the needs of older persons.
Much has already been done to improve the well-being and independence of older
persons in the Western Pacific Region, in large measure because of prospective, socio-political
and intersectoral commitment to national plans and policies. We are all challenged to continue
these developments by taking an active leadership role in promoting the health of older persons,
-11-
particularly in regard to the health and social-sector development of community-level
programmes designed for the care of older persons and their caregivers.
CoM H 43.
WORLD HEALTH ORGANIZATION
STUDY GROUP
HOME-BASED AND LONG-TERM CARE
Ma’ale Hahamisha, Israel
§
5-10 December 1999
“HOME CARE INITIATIVES
IN THE WHO SOUTH-EAST ASIA REGION’’
Dr Duangvadee Sungkhobol
Regional Adviser for Nursing and Midwifery
World Health Organization
Regional Office for South-East Asia
New Delhi, India
LTHHSC/SG/99/7
HOME CARE INITIATIVES
IN THE WHO SOUTH-EAST ASIA REGION
Presented at
Study Group on Home-Based and Long-Term Care
Ma’ale Hachamisha, Israel
5-10 December 1999
By
Dr Duangvadee Sungkhobol
Regional Adviser for Nursing and Midwifery
World Health Organization
Regional Office for South-East Asia
New Delhi, India
CONTENTS
1.
INTRODUCTION............................................................................................. 2
2.
DEMOGRAPHIC TRANSITION.................................................................... 3
3.
EPIDEMIOLOGICAL TRANSITION.............................................................. 5
4.
THE NEED FOR COMMUNITY-AND HOME-BASED CARE................. 10
5.
6.
4.1.
Elderly Population.................................................................................. 10
4.2.
People with Disabilities..........................................................................11
4.3.
Individuals with Chronic Diseases....................................................... 12
4.3.1.
HIV/AIDS.......................................................................................... 12
4.3.2.
4.3.3.
Tuberculosis.................................................................................... 13
Other Chronic Diseases................................................................. 13
4.3.4.
Other Individuals............................................................................. 14
"
ISSUES IN HOME CARE............................................................................. 14
5.1.
Changing Family Structure................................................................... 14
5.2.
Roles of Women..................................................................................... 15
5.3.
Community Participation in Health........................................................16
INITIATIVES UNDERTAKEN....................................................................... 17
6.1.
Care of the Elderly..................................................................................17
6.2.
Community-based Rehabilitation.......................................................... 19
6.3.
Community-based AIDS Care.............................................................. 20
6.4.
Other Initiatives for Community- and Home-based Care...................22
6.4.1.
Promotion of Self-care..................................................................... 22
6.4.2.
Strengthening of Community Health Nursing...............................22
6.4.3.
Promotion of Community- and Home-based Midwifery Care.... 23
7.
FUTURE PLAN.............................................................. i.............................. 23
8.
CONCLUSIONS............................................................................................. 24
9.
BIBLIOGRAPHY............................................................................................24
1
A
1.
INTRODUCTION
The South-East Asia Region of WHO comprises ten Member States Bangladesh, Bhutan, Democratic People's Republic of Korea, India,
Indonesia, Maldives, Myanmar, Nepal, Sri Lanka and Thailand. These
countries are characterized by many complexities with considerable social,
cultural, political and economic diversity. Three of the ten countries,
Bangladesh, India and Indonesia have populations more than 100 million
people. Five of them, Bangladesh, Bhutan, Maldives, Myanmar and Nepal
are least developed countries. The region is home to one-fourth of the world’s
population and about 40 per cent of the its poor.
There have been dramatic changes in the socioeconomic situation in most
countries of the Region over the last few years. While economic and political
reforms have resulted in improvements in the overall economic condition,
wide disparities still exist, both among as well as within countries. The gap
between the “haves” and the “have nots” appears to be widening in many
countries. The recent economic crisis, which has struck many parts of Asia,
has further aggravated the situation in some countries of the Region.
Infectious diseases are still the leading cause of morbidity and mortality, and
the Region is still the major contributor to the global burden of many
communicable diseases.
While tremendous progress has been made
towards the eradication of diseases such as poliomyelitis, guineaworm and
yaws, and towards the elimination of leprosy and neonatal tetanus, diseases
such as tuberculosis and malaria continue to take a heavy toll of lives and to
economically cripple many families.
New, emerging and re-emerging
diseases, such as dengue fever, Japanese encephalitis, viral hepatitis and
HIV/AIDS, pose increasing threat to the health and well-being the people of
the Region.
Declines in crude birth and death rates and increases in life expectancy have
resulted in a progressive ageing of the population. These demographic
changes, as well as the emergence of an increasing affluent middle class,
have brought with them the attendant problems of cardiovascular diseases,
cancers, neurological and metabolic disorders, and other chronic conditions
as well as trauma and injuries. Many countries of the Region are therefore
facing not only the burden of communicable diseases, but also an increasing
burden of noncommunicable diseases. They can no longer address these
problems sequentially, but must face them simultaneously. This double
burden of diseases imposes a tremendous strain on national health budgets.
The health sector alone is not able to cope with such problems. Hence, there
is an urgent need for close interaction with other social sectors such as
education, industry, housing and environment for health development. In
addition, there is a need for a shift towards more holistic health care, with
adequate attention given not only to curative care but also to health promotion
and protection and rehabilitation. With the increasing cost of health care,
countries are also striving for new and better ways to provide good quality
cost-effective health care. Hence, in addition to strengthening institutional
2
health services, countries of the Region are taking steps to develop and
strengthen community- and home-based care, including empowering
individuals, families and communities for self-care. Several initiatives have
been undertaken by the WHO South-East Asia Region towards this end.
2.
DEMOGRAPHIC TRANSITION
During the 1980s and 1990s there was a stead increase in life expectancy at
birth in most of countries of the Region. In 1983, only three of the ten
Member States reported life expectancy at birth at 60 years or more. By
1997, seven out of the ten countries reported life expectancy above 60 years.
The tremendous achievements in the economy, industry, modern technology,
and medical science will continue to contribute to even greater increases in
life expectancy in all the countries. Yet this means a growing number of older
people, and that more and more people will therefore be at higher risk of
developing the chronic and debilitating diseases associated with old age.
The increasing in the total number of elderly people of 60 years and above will
be further accelerated during the years to come. The proportion of elderly
people is expected to increase from 5.3 per cent in 1980 to 12.4 per cent in
2025 for the whole Region. As compared to the changes in the global
population between 1995 and 2025, more dramatic changes can be seen in
countries of the Region, during the same period (Figures 1 and 2).
Source:
United Nations medium variant predictions, as cited in WHO (1999) Regional Situational Analysis on
Demographic and Epidemiological Transitions and Strategies on Active and Healthy Ageing
(WHO/NCD/Meet 2/5, 25 September 1999, Unpublished manuscript). WHO, New Delhi.
This demographic transition effectively transforms most countries of the
Region from “mature societies” to “ageing societies”, with an ageing
population of more than seven per cent by the turn of the century. The
proportion of Regional elderly population will increase from 18.1 per cent in
1995 to 21.4 per cent of the world’s elderly population in 2025. As this trend
3
continues, the number of the world’s and the Region's elderly population will
more than double from 1995 (Figure 3).
Figure 3 : Number and proportion of elderly population in the world
and in SEAR countries, 1995 - 2025
Source:
United Nations medium variant predictions, as cited in WHO (1999) Regional Situational Analysis on
Demographic and Epidemiological Transitions and Strategies on Active and Healthy Ageing
(WHO/NCD/Meet 2/5, 25 September 1999, Unpublished manuscript). WHO, New Delhi.
Universally, women have a longer life expectancy than men. They therefore
constitute both a larger accumulated number as well as a large proportion of
the elderly population. A similar pattern is seen in the global and in Regional
populations. While the proportion of elderly women in the Region is expected
to increase to 13.2 per cent by 2025, the proportion of elderly men will be 11.6
per cent (Figure 4).
Figure 4: Population of elderly population by sex in SEAR countries
and in the world, 1995 - 2025
Source:
United Nations medium variant predictions, as cited in WHO (1999) Regional Situational Analysis on
Demographic and Epidemiological Transitions and Strategies on Active and Healthy Ageing
(WHO/NCD/Meet 2/5, 25 September 1999, Unpublished manuscript). WHO, New Delhi.
4
3.
EPIDEMIOLOGICAL TRANSITION
All countries of the Region are proceeding along the path of epidemiological
transition, with differences in where they lie on the path and at the rates at
which they are changing. However, the proportion of the global burden of
disease carried by countries of the Region is enormous. These ten countries
account for 40 per cent of the world's maternal deaths, 41 per cent of the
global deathsl due to infectious diseases - almost 7 million each year and 40
per cent of the global burden of tuberculosis, estimated at 3.5 million cases.
By the year 2000, 8 to 10 million people in the Region are expected to be
infected with HIV, which would be over 25 per cent of the global cumulative
infection. The Region also accounts for 68 per cent of the poliomyelitis cases,
72 per cent of the leprosy cases and 30 per cent of blindness cases, in the
world.
As noted earlier, along with declining death rates and gradually increasing life
expectancy, the process of epidemiological transition - the pattern of mortality
and morbidity changes in association with demographic changes - is under
way in most of the countries. The main change in the morbidity and mortality
patterns of the countries of the Region during the past two decades has
resulted from a decline in cases of polio, neonatal tetanus and other vaccine
preventable diseases. The Region has demonstrated a dramatic acceleration
of polio eradication activities, particularly with the implementation of national
immunization days.
The other positive epidemiological trend is the decline in the incidence and
prevalence of leprosy in the Region. Multi-drug therapy has proved so
successful that it is expected that leprosy will be eliminated by the year 2000.
At the same time, the treatment of deformities and rehabilitation will require
increased attention.
Despite overall improvements in the socioeconomic status of the people and
increased life expectancy, communicable diseases are still well-entrenched in
the Region. Old diseases like cholera and tuberculosis still dominate the
scene, while malaria, plaque and kala-azar, which were once on the verge of
eradication, have reappeared. Acute respiratory infections and diarrhoeal
diseases continue to be the leading causes of mortality in children under five
years of age.
As the transition proceeds, the infectious component of the disease burden is
gradually being replaced by non-infectious conditions such as cardiovascular
diseases, cancers, accidents, diabetes and congenital anomalies. At present
the risk of death from noncommunicable diseases during adulthood (15-60
years) is considerably higher in the developing world, including South-East
Asia, than in the developed world. Cardiovascular and cerebrovascular
diseases, cancer and diabetes have emerged as major contributors to
morbidity and mortality in many countries of the Region (Tables 1 and 2).
Mental health problems, particularly during political and economic turmoil, as
well as problems related to substance abuse, continue to be of serious public
health concern.
5
Country
Bangladesh
Bhutan
DPR Korea
India
Indonesia
Rank
Table 1: Trends in leading causes of morbidity
Leading Causes of Morbidity
1991-1993
1988-1990
1983-1985
1994-1997
1
Diarrhoeal diseases
Diarrhoeal diseases
Diarrhoeal diseases
Fever/pyrexia of
unknown origin
2
Respiratory diseases
Infectious/parasitic
diseases
Skin diseases
Diarrhoca/dyscntery
3
Nutritional disorders
Measles
Infectious/parasitic
diseases
Dyspepsia/gastritis/
peptic ulcer
4
Skin diseases
Malaria
Respiratory diseases
Common cold/upper
respiratory infection
5
Eye discases/night
blindness
Nutritional disorders
Nutritional disorders
Malaria
1
Diarrhoeal diseases
Diarrhoeal diseases
Respiratory diseases
Acute respirator}'
infections
2
Respiratory diseases
Respiratory diseases
Skin diseases
Intestinal infection/
diarrhoea/dysentery
3
Infectious/parasitic
diseases
Infectious/parasitic
diseases
Diarrhoeal diseases
Skin diseases
4
Skin diseases
Skin diseases
Infectious/parasitic
diseases
Peptic ulcer syndrome
5
Malaria
Malaria
Eye diseases/night
blindness
Musculoskeletal
disease
1
Not available
Whooping cough
Diarrhoeal diseases
Cardiovascular diseases
2
Diarrhoeal diseases
Whooping cough
Cancer
3
Fevers
Fevers
Diabetes
4
Infectious/parasitic
diseases
Not available
Diarrhoeal diseases
Respiratory diseases
2
Influenza
Diarrhoeal diseases
3
Malaria
Malaria
4
Tuberculosis
Whooping
cough/measles
5
Whooping cough
Neonatal tetanus
1
Not available
Respiratory diseases
Diarrhoeal diseases
Intestinal infections
2
Skin diseases
Pregnancy related
diseases
Complications of
obstetrics/abortion
3
I
Not available
Diarrhoeal diseases
Injury/poisoning
Injury and poisoning
4
Bronchitis/asthma
Respiratory diseases
Respiratory infections
5
Malaria
Aches and pain
Cardiovascular diseases
6
Table 1: continued
Leading Causes of Morbidity
Rank
Country
1991-1993
1988-1990
1983-1985
1
Aches and pain
Asthma/bronchitis
Respiratory diseases
2
Respiratory
diseases/influenza
Fever
Diarrhoeal diseases
3
Eye diseases/night
blindness
Aches and pain
Decayed/missing/fiiled
teeth
4
Skin diseases
Pregnancy related
disorders
Hypertension
5
Traumas
Skin diseases
Anaemia
Not available
Maldives
Thailand
Malaria
1
Malaria
Malaria
Diarrhoeal diseases
Diarrhoeal diseases
Tuberculosis
3
Pregnancy related
disorders
Pregnancy related
disorders
AIDS
4
Respiratory diseases
Tuberculosis
Diarrhoeal diseases
Protein energy
malnutrition
5
Sri Lanka
Not available
2
Myanmar
Nepal
1994-1997
1
Pregnancy related
disorders
Skin diseases
Diarrhoeal diseases
2
Infectious/parasitic
diseases
Infectious/parasitic
diseases
Respiratory diseases
3
Injury/poisoning
Respiratory diseases
and nutritional disorders
Malaria
4
Diarrhoeal diseases
Diarrhoeal diseases
Nutritional disorders
5
Respiratory diseases
Fevers
Infectious/parasitic
diseases
1
Pregnancy related
disorders
Infectious/parasitic
diseases
Traumas
Injuries/poisoning/
external causes
2
Injury/poisoning
Pregnancy related
disorders
Diarrhoeal diseases
Infectious/parasitic
diseases
3
Diarrhoeal diseases
Respiratory diseases
Malaria
Respiratory diseases
4
Heart diseases
Injury/poisoning
Respiratory diseases
Genitourinary diseases
5
Circulatory system
diseases
Circulatory and nervous
system diseases
Sexually transmitted
diseases
Circulatory system
diseases
1
Pregnancy related
disorders
Diarrhoeal diseases
Diarrhoeal diseases
Infectious/parasitic
diseases
2
Diarrhoeal diseases
Motor vehicle accidents
Respiratory diseases
Respiratory diseases
3
Accidents
Accidents
Malaria
Injury/poisoning/
accidents
4
Motor vehicle accidents
Fevers
Fevers
Circulatory system
diseases
5
Fevers
Bronchitis/asthma
STDs
Mental disorders
Source: WHO (1999) Health Situation in the South-East Asia Region, 1994-1997. WHO, New Delhi.
7
Not available
Table 2: Trends in leading causes of mortality
DPR Korea
India
Indonesia
1983-1985
1988-1990
1991-1993
1
Diarrhoeal diseases
Tetanus
Diarrhoeal diseases
2
Respiratory diseases
Pneumonia
Tuberculosis
3
Old age complications
Diarrhoeal diseases
Tetanus
4
Fevers
Injury/poisoning
Respiratory diseases
5
Asthma
Hypertensive diseases
Measles
1
Not available
Not available
Respiratory diseases
Bangladesh
Bhutan
Leading Causes of Mortality
Rank
Country
2
Skin diseases
3
Diarrhoeal diseases
4
Worms
5
Malaria
1994-1997
Not available
Not available
Cardiovascular diseases
Cardiovascular diseases
Neoplasms
Hypertensive diseases
Cancer
3
Respiratory diseases
Neoplasms
Diabetes
4
Injury/poisoning
Respiratory diseases
Traffic accidents
5
Diarrhoeal diseases
Injury/poisoning
I
Senility
Infectious/parasitic
diseases
Diarrhoeal diseases
Cardiovascular diseases
2
Respiratory diseases
Circulatory system
diseases
Respiratory diseases
Infectious/parasitic
diseases
3
Diseases of infancy
Respiratory diseases
Diseases of infancy
Injury and poisoning
4
Circulatory system
diseases
Injury/poisoning
Pneumonia
Conditions of perinatal
period
5
Fevers
Diarrhoeal diseases
Infectious/parasitic
diseases
Respiratory diseases
1
Respiratory diseases
Diarrhoeal diseases
Cardiovascular diseases
Cardiovascular diseases
2
Diarrhoeal diseases
Cardiovascular diseases
Tuberculosis
Respiratory' diseases
3
Cardiovascular diseases
Tuberculosis
Respiratory diseases
Tuberculosis
4
Tuberculosis
Measles
Diarrhoeal diseases
Infectious/parasitic
diseases
5
Tetanus
Respiratory diseases
Injury/poisoning
Diarrhoea
1
Circulatory system
diseases
2
Not available
8
Country
Maldives
Myanmar
Nepal
Sri Lanka
Rank
Table 2 continued
Leading Causes of Mortality
1994-1997
Fevers
Senility
Cardiovascular diseases
2
Diarrhoea! diseases
Cardiovascular diseases
Respiratory diseases
1
Not available
3
Abdominal pain
Fevers
Diabetes
4
Tuberculosis
Stroke
Cancer
5
Pneumonia
Asthma
Tuberculosis
Not available
Not available
1
Senility
Malaria
2
Cardiovascular diseases
Tuberculosis
3
Pneumonia
Pneumonia
4
Diarrhoeal diseases
Diarrhoeal diseases
5
Tuberculosis
Cardiovascular diseases
1
Infectious/parasitic
diseases
Not available
Not available
Not available
2
Respiratory diseases
3
Nervous system
diseases
4
Circulatory diseases
5
Injury/poisoning/
accidents
1
Injury/poisoning
Cardiovascular diseases
Cardiovascular diseases
Cardiovascular diseases
2
Cardiovascular/hyperte
nsive diseases
Cerebrovascular
diseases
Cerebrovascular
diseases
Injury/poisoning/other
external causes
3
Diarrhoeal diseases
Diarrhoeal diseases
Injury/poisoning
Respiratory diseases
4
Neoplasms
Circulatory system
diseases
Diarrhoeal diseases
Infectious/parasitic
diseases
Tuberculosis
Diseases of digestive
system
5
Thailand
1991-1993
1988-1990
1983-1985
1
Cardiovascular/
circulatory diseases
Cardiovascular/
circulatory diseases
Respiratory diseases
Circulatory system
diseases
2
Diarrhoea! diseases
Accidents
STDs/AIDS/ARC
Accidents and
poisoning
3
Accidents
Neoplasms
Diarrhoeal diseases
Malignant neoplasm
4
Injury/poisoning/
homicide
Diarrhoeal diseases
Tuberculosis
Diseases of liver and
pancreas
5
Neoplasms
Respiratory diseases
Malaria
Pneumonia and other
respiratory diseases
Source: WHO (1999) Health Situation in the South-East Asia Region, 1994-1997. WHO, New Delhi.
9
A public health approach is therefore of vital importance, not only for the
effective prevention and control of communicable diseases, but also for
noncommunicable diseases.
4.
THE NEED FOR COMMUNITY- AND HOME-BASED CARE
With the increase in health care costs, accessibility to health services will
become an important issue that countries must address.
There is a
continuing trends that hospital stays will be shortened. For cost-effective
care, several health interventions/services can be effectively carried out within
the community or at home. Such care can be provided by less trained health
personnel or family members, given proper guidance and supervision from
qualified health personnel. For almost all people, home is the setting of choice
for receiving care. Given the escalating cost of health services, the poor, the
vulnerable and the disadvantaged groups who normally have only limited
access to health care will be even more deprived. There is an urgent need
therefore for countries of the Region to extend the health services beyond
hospital walls.
This will ensure the accessibility of care as well as a
continuum of care between the hospital and home
There are several groups of clients who have the greatest need for
community- and home-based care. For example, elderly and disabled people
would be able to have healthier living environment with proper communityand home-based care.
Individuals with chronic diseases - both
communicable diseases (such as HIV/AIDS) and noncommunicable diseases
(such as diabetes or cancers or cerebrovascular diseases) - and terminally ill
patients requiring long-term care would also benefit greatly from home-based
care. Home care may prevent, delay or be a substitute for institutional care.
Thus, such patients would be required to be in the hospital only when there
are real needs for it.
4.1. Elderly Population
With a longer life span, individuals are at a higher risk from a number of
ageing-related diseases and disabilities as well as changing life styles. A five
country study on elderly care showed that arthritis, high blood pressure, foot
problems, heart diseases and stomach ulcers were the most common
illnesses among the elderly, along with visual and hearing impairments.
Countries of the Region continue to be major contributors to the global burden
of blindness. It is estimated that the number of blind people in the Region in
1998 was about 11.7 million. Around 50-80 per cent of this blindness is
caused by cataract, which is most common in those aged 60 years and over.
The age-related diseases along with visual and hearing impairements greatly
affect the elderly. They are often unable to carry out daily activities, self-care
functions and more importantly, employment. Thus they become functionally
dependency and sometimes economically dependent, and so require support
for daily living.
10
In most countries of the Region, a relatively high proportion of elderly people
work. However, only 34 per cent of the rural elderly and 29 per cent of the
urban elderly are reported to be economically independent in India. A study in
Thailand revealed that six per cent of the elderly live alone, while two per cent
reported they did not have any one to help them in times of sickness and
disability.
National health services in the Region, however, still focus primarily on
communicable diseases and maternal and child health. Health services for
the elderly are inadequate. Health personnel working in the community at the
primary health care have neither the knowledge nor the skills necessary to
tackle the health needs of the elderly. In addition, the proportion of elderly
people able to obtain professional health care is substantially lower in the
Region than in developed countries (Table 3).
Table 3: Percentage of the elderly who consulted a health professional
Males
60-74 years
75 + years
71.9
3.3
30.3
74.1
0.0
42.1
72.5
0.1
33.9
29.3
3.9
2.3
28.7
5.6
2.3
29.2
4.2
2.2
60-74 years
75 + years
Total females
71.3
8.7
30.6
80.8
7.1
21.7
74.2
8.2
28.0
32.1
3.8
2.1
33.7
5.4
2.8
32.4
4.3
2.3
Total males
Australian Study
Doctor
Nurse
Pharmacist
South-East Asia Region
Doctor
Nurse
Pharmacist
Females
Australian Study
Doctor
Nurse
Pharmacist
South-East Asia Region
Doctor
Nurse
Pharmacist
Source: Australia, Centre for Ageing Studies, Ageing in South East Asia - A five country study as cited in WHO (1999) Health
Situation in the South-East Asia Region, 1994-1997. WHO, New Delhi.
4.2. People with Disabilities
Data on disabilities in countries of the Region are scanty. Overall, however,
the magnitude of disabilities and their patterns vary from country to country.
Results obtained from small surveys indicate that the prevalence of disabilities
ranges from three to ten per cent of the total population. While disabilities due
to poverty-related diseases remain the major concern, emerging problems
such as those due to traffic accidents, occupational injuries and chronic and
11
degenerative diseases as well as old age-related disabilities pose new
challenges in the Region.
It is estimated that there will be approximately 45 million people in the world
who are blind by the year 2000. Of these, countries of the South-East Asia
Region account for 15 million, with a cataract backlog of 10 million cases. It is
also estimated that the Region accounts for more than one-quarter of the
moderate to severe hearing impairment cases in the world. The Region has
an estimated one million leprosy cases, representing 72 per cent of the
world’s total.
Accidents and injuries are on the increase in countries of the Region. They
constitute nine to ten per cent of the total mortality in India. As causes of
morbidity, injuries rank fifth in Myanmar and fourth in Indonesia. Trauma and
injuries are the leading causes of hospitalization in Sri Lanka. Since trauma
care is not well developed in most of these countries, many injuries lead to
permanent disability.
The prevalence of severe mental disorders (psychoses) has been estimated
to be 5-10 per 1000 population in various countries of the Region. About
seven million people in India alone are affected by severe mental disorders at
any given time.
These disabled people are in need for treatment of deformities and
rehabilitation of which the majority of care can be effectively provided in the
community and at home.
4.3. Individuals with Chronic Diseases
4.3.1.
HIV/AIDS
The human immunodeficiency virus (HIV), which caused the acquired
immunodeficiency syndrome (AIDS), came much later to the South-East Asia
Region than to other parts of the world. However, HIV has emerged as a
serious public health and development concern in the Region. It is estimated
that currently there are more than 5.5 million HIV-infected people in the
Region, representing nearly 18 per cent of the world total, while the proportion
of reported AIDS cases represents less than 5 per cent. Besides in persons
with high-risk behaviour, HIV infection rates have now begun to increase in
the general population as well. Given the mean progression time for initial
HIV infection to develop into AIDS, it can be concluded that AIDS cases in the
Region will continue to increase into the next century, and up to two million
cumulative cases of AIDS may occur by the year 2000. These AIDS patients
will require substantial family and social support to live meaningful lives in the
community.
12
4.3.2.
Tuberculosis
Tuberculosis (TB) is an ancient disease, which continues to pose a major
public health challenge in developing countries. Though it is now possible to
cure and control tuberculosis, particularly with “directly observed treatment,
short course” (DOTS), it still affects and kills millions of people each year. It is
estimated that eight million people worldwide develop TB. Of the 3.8 million
cases reported to WHO in 1996, 39 per cent were reported from the SouthEast Asia Region. One million deaths - one-third of the global deaths each
year - occur in this Region. Access to the DOTS strategy in the Region is still
relatively low, and currently reaches only about 12 per cent of the total
population.
To add to the problem, tuberculosis is the most important life-threatening
opportunistic infection associated with HIV in the Region. HIV and TB each
speed up the progression of the other. Of the 4.5 million who were HIV
positive in 1997, about one-third were also infected with tuberculosis.
Between 56 and 80 per cent of the AIDS cases in Thailand, India, Nepal and
Myanmar have had TB. Tuberculosis accounts for at least one-third of the
AIDS death worldwide, and 40 per cent of the AIDS deaths in Asia. Thus,
there is urgent need to intensify the implementation of DOTS in countries of
the Region.
In Thailand, DOTS was recommended as the most effective method to
contain the emerging TB/HIV co-epidemic. The Ministry of Public Health, in
1997, issued new policy guidelines for TB control based on the DOTS
strategy. It is also endorsed a plan to cover the entire country by 2001.
The accessibility to the DOTS strategy in countries of the Region can be
further improved by active involvement of family and community members in
providing necessary care in the community or at home. From successful
experiences in some countries of the Region such as Myanmar and Thailand,
trained community volunteers and family members can effectively carried out
the short course of directly observed treatment for tuberculosis.
4.3.3.
Other Chronic Diseases
Increased longevity together with changes in life styles and diets, sedentary
habits, and the increased use of tobacco and alcohol have contributed to the
sharp rise in the incidence of cardiovascular and cerebrovascular diseases,
malignancies, metabolic and degenerative disorders, and mental illnesses.
As seen in Tables 1 and 2, cardiovascular diseases, cancers and diabetes are
among the leading causes of morbidity and mortality in several countries of
the Region.
The increase in cardiovascular disease prevalence and mortality rates is
expected to continue in the coming years in the majority of the countries.
Cancer incidence will also increase substantially in many countries as well.
The increase in the prevalence of diabetes mellitus will be marked in the
Region, with an estimated 30 million persons affected at present. It is
estimated that by the year 2025 there will be nearly 80 million diabetics in the
13
Region - the highest among all WHO Regions. Contrary to what is found in
developed countries, where the majority of persons with diabetes are 65 years
of age and over, most diabetics in the Region belong to the younger, more
economically productive age group.
Patients with these chronic diseases often require long-term care, a large
portion of which can be effectively given at home.
4.3.4.
Other Individuals
In addition to those mentioned earlier, other individuals who will also benefit
from home care include those who are discharged from the hospital but still
require continuity of care, pregnant women, mothers and babies during the
postpartum period, and children under five to name just a few. Moreover, the
population at large will also benefit from home health care, particularly for
health promotion and protection for healthier life styles.
5.
ISSUES IN HOME CARE
5.1. Changing Family Structure
In the past, the majority of the Region’s population resided in the rural areas.
With rapid urbanization and industrialization, the percentage of the population
residing in urban areas has increased dramatically in all countries. For
example, the urban population in Bangladesh increased from 4.2 per cent in
1950 to 18.3 per cent in 1995, and is expected to reach 40.6 per cent by the
year 2030. The average annual growth rate of urban populations, however,
varies widely among countries of the Region.
With urbanization, there is often a shift from an extended to a nuclear family
environment. Thus, contacts that normally frequently occur in extended
families between parents, children and their spouses as well as their offspring,
and other relatives are somewhat limited. Many countries of the Region have
witnessed increased migration from rural areas to cities in search of better
economic opportunities. The young, productive members of the family
migrate to large urban centres in search of jobs, leaving behind the elderly
and children in the rural communities. This has broken down the traditional
family support system, where the younger generation takes care of their
elders. As noted earlier, a study in Thailand showed that six per cent of the
elderly lived alone and two per cent did not have any one to help in time of
sickness and disability. Well-to-do families can hire professional help or
support workers to provide the necessary help to their elderly parents, but
poor families cannot.
Changing family structures, therefore, pose a major challenge for the
provision of home health care for individuals who are ill and/or functionally
dependent. Mechanisms need to be in place to ensure that those family
members and others who provide such services have adequate knowledge
14
and skills as well as a positive attitude towards care of the elderly and
disabled.
5.2. Roles of Women
A study of health-seeking behaviour in 16 developing countries found that
women most often make decisions about health care use, including self-care.
At least 75 per cent of health-related decisions take place within the family.
The role of women in the family as health care providers is known to be of
great importance. Normally, women of the Region are the main providers of
health care within their own families. Their role begins at home, where illness
usually begins. Caring is their intuitive response to the sick and disabled.
Outside the home, their role as doctors, nurses, midwives, other categories of
health workers, and volunteers is well recognized.
Some countries of the Region have made special attempt to select mostly
females as health volunteers and to provide them with training.
This
enhances their confidence, skill and status in the community.
It thus
contributes to the improvement of their own health as well as that of their
families and the communities in which they live.
In some societies within the Region, male health workers or volunteers are
not acceptable as care providers to women. In this case, only female health
workers or volunteers can provide cultural-sensitive and women-friendly care,
meeting the needs of the women and their societies. Hence, recruitment of
female health volunteers will also increase the accessibility of services to
needy women.
However, there is an increase in women’s participation in the work force in
many countries of the Region. They work primarily in the agriculture sector.
Female labourers comprised 90 per cent of the total persons employed in
agriculture in Nepal in 1991 and 62 per cent in Bhutan in 1997. In Thailand,
however, female labour participation is predominantly in the manufacturing,
service and tourism sectors. With the growing garment industry and the
establishment of free trade zones in some countries, large numbers of women
are entering this labour market. This has also exposed more women to
occupational hazards and injuries. This may have an adverse effect on their
own health, which may prevent them from fulfilling the caring functions at
home.
Many workingwomen have to cope with a double burden of responsibilities,
both at home and at work. This entails being constantly concerned about
their families’, particularly their children's, well-being, while fulfilling their job
expectations.
Support systems to help women with their family
responsibilities while at work have not yet been developed to any significant
extent in the Region. Recently, there has been an attempt to intensify men’s
participation in the health care of their own family, particularly that of their
wives in some countries of the Region.
15
Thus, there is the greatest potential if men can also be mobilized to provide
home care for their own families and the community. At the same time,
women need some support for their traditional caring role in the family.
Support systems need to be established to assist workingwomen to carry out
home care without overburdening them.
5.3. Community Participation in Health
There is political commitment in all countries of the Region to facilitate
community involvement in health and development activities. Community
participation is perceived as a dynamic partnership process. It enables people
to become agents of their own health development. Thus, there are health
volunteer schemes operating in all countries of the Region. Volunteers in
community health activities not only bring health services to the community,
they also act as agents for health development. They benefit both the
recipients and the health care providers.
Volunteers play an important role in galvanizing communities for action. They
provide information that enhances individual and family self-care and
responsibility as integral components of every day life. Since health care
starts at home, family members and various groups within the community
should be empowered to assume the responsibility for their own health and
that of their community.
In Indonesia, for example, the Family Welfare Movement is a community
based volunteer women's movement. This has been recognized by the
Government of Indonesia for its dedicated and innovative work to mobilize
women at all levels of society in support of primary health care. It emphasizes
self-reliance and mutual help for self-improvement, including elimination of
poverty. One component is the integrated health post, which provides
maternal and child health care including health education at the village level.
It also provides a helping role in the areas of food, clothing, housing, home
economics, education, handicrafts, protection of the environment and
promotion of cooperation.
There are examples of effective community involvement in drug abuse control
in India, Myanmar and Sri Lanka. People in a locality are mobilized to take
care of their “community” drug problems, such as identifying drug users;
spreading optimism about rehabilitation; organizing users' group; parents,
teaching relatives and significant others how to handle drug problems;
mobilizing assistance and planning for detoxification camps, and various skill
training sessions; motivating drug users together for detoxification.
Detoxification camps are then set up and, ideally, with all drug dependent
persons being detoxified together. Such efforts have transformed
communities into self-help groups to keep their localities drug free.
16
Special efforts need to be made to strengthen community action for health
and enhance the role of health volunteers, and to develop their capacity for
providing effective support for home health care in their own communities.
6.
INITIATIVES UNDERTAKEN
6.1. Care of the Elderly
Over the years, WHO Regional Office for South-East Asia has made
substantial efforts to improve health care of the elderly. The principal focus of
WHO’s activities has been on community participation and family care. The
“promotion of traditional family ties” has therefore been put ahead of
“institutional care”. Making optimal use of the available primary health care
services is the cornerstone for supporting traditional family care.
In collaboration with Member States, the Regional Office has
concentrating its efforts in several areas of elderly care. These include:
been
•
Creating awareness among policy makers and the general population
•
Collecting and disseminating information on the socioeconomic and
health status of elderly people through intercountry and country studies
•
Supporting formulation of appropriate national policies, strategies and
programmes
•
Improving health workers’ knowledge and skills on health care for the
elderly.
WHO supports the training of health personnel as a top priority. Various
studies of the determinants of healthy ageing have been supported by the
Regional Office. Several countries of the Region recently initiated WHOsupported programmes on Ageing and Health. In addition, a workshop on
active and healthy ageing for mega countries was recently convened to
develop strategic directions for intercountry cooperation.
At present, the community-based care of the elderly in countries of the Region
can be categorized into four groups, i.e. family care, primary health care for
the elderly, homes for the elderly, and other community-based elderly support
activities.
Family Care
The existence of extended family networks in which parents, children, uncles
and aunts are in regular and frequent contact with one another is a
fundamental part of the traditional welfare system in the Region. In most
developing countries, the family remains the only source of support and long
term care for the elderly. Being in the house with other family members also
creates a moral support for the elderly.
17
Family involvement in health care is the most constant and reliable source of
support for the elderly. The family can be a valuable help in identifying
chronic diseases, assisting with visits to health care facilities as well as other
physical support. The elderly living in joint families enjoy respect from family
members and are well looked after during illness.
In well-off families in big cities in several countries of the Region, families hire
professional caregivers, properly trained to provide live-in care for the elderly
at home. Although costly, it is popular as it provides the opportunity to have
their elderly parents cared for by professionals without investing much of the
children’s time on their parents. However, many elderly are not this fortunate.
Due to financial constraints, their offspring leave home in search of better
economic opportunity, and so many live alone in their old age.
Primary Health Care for the Elderly
Health care services to provide specialized geriatric care are grossly
inadequate in most countries of the Region. Nevertheless, some countries
have established a system for taking care of their elderly populations. In
Indonesia, for example, the elderly can obtain free health services at health
centres provided that they have a health card. However, they are often
treated as general patients, since specialized geriatric health services are not
available usually general. The health workers at field level, including doctors
and health personnel at the primary and secondary levels of health care have
very little or no knowledge of the health problems of the elderly and healthy
ageing.
In Thailand, primary health care for the aged is provided at the village health
centre, which is staff by a public health technical officer and a nurse-midwife.
Health care services provided are basic. For complex health problems, the
elderly will be referred to a district hospital. Medical consultation is given at
the village health centre during routine supervision visits of a medical doctor
from the district hospital. The provincial and regional hospitals provide
sophisticated medical care for referred patients.
Specialized geriatric services, where they exist, are mostly located in
tertiary care hospitals which serve only a small proportion of the population.
Moreover, in almost all countries of the Region, only a small number of
qualified geriatric specialists are available. It is common that the practice of
these specialists is mostly confined to clinical aspects of diseases.
Homes for Care of the Aged
There are a number of old-age homes in most large cities of many countries
of the Region. These are for the elderly who do not have adequate family
support. The majority is run by non-profit organizations. Nevertheless, some
homes established by private organizations do request payment. Services
provided include provision of accommodation, food, general health care,
recreation, day care, assistance for families, counseling services, and home
visits to the elderly living in the surrounding area. These homes receive little
18
support from the governments, and are primarily dependent on charitable
donations.
Community in several countries have organized day care centres for elderly in
the form of coffee and tea clubs. Hence, the elderly can gather together and
communicate with each other. This can keep them from social isolation and
improve their mental alertness.
A few nursing schools in Thailand have organized day care centers for the
elderly as a service to the community as well as a field practice area for
student learning. These provide an opportunity for nursing students to
acquire requisite knowledge and skills as well as a positive attitude towards
geriatric care.
Other Community-based Elderly Support Activities
The health care of the elderly has to go beyond disease orientation. It must
take into account the interdependence of physical, mental, social, emotional,
spiritual, rehabilitative and environmental factors. Care of the elderly is a
“composite” of these aspects.
In most countries of the Region, there are several non government
organizations (NGOs) and private voluntary organizations which have come
forward to provide support for the elderly. Being close to the communities,
NGOs have often succeeded in areas where the government machinery has
found outreach difficult.
HelpAge is a prominent NGO for elderly support that operates in many
countries of the Region. It is believed best to keep the elderly working as long
as possible so that they will be economically independent, thus, supporting
old age social security. HelpAge has undertaken various security projects
through traditional occupations to help the elderly.
An extensive network of Buddhist temples is available in Thailand, which the
elderly frequently visit. The monks are highly respected by society and are a
potential source for disseminating information to promote healthy ageing.
6.2. Community-based Rehabilitation
During the past few decades, the Regional Office has promoted the use of
available rehabilitation technologies so that the disabled can access essential
rehabilitative care, enabling them to lead meaningful lives in their
communities. Emphasis is placed on the prevention of disabilities, integration
of rehabilitative services within the general health care infrastructure, and
intersectoral approaches.
19
WHO, in collaboration with its Member States, has concentrated its efforts in
several areas of community-based rehabilitation (CBR). These include:
•
Strengthening public awareness
•
Reviewing disability situations at regional and country levels and
disseminating information
•
Supporting the formulation of appropriate national policies, strategies
and programmes with CBR as integral component of the primary health
care system
•
Strengthening infrastructure and referral facilities
•
Building national capacity for local production of assistive devices and
aids
•
Supporting the training of health personnel for CBR
•
Translating the WHO CBR manual into local languages.
As in care of the elderly, special consideration has been given to support the
training of health workers. A regional consultation was recently convened to
identify strategies to further strengthen training programmes for health
workers, particularly at the primary health care level, in rehabilitation and
CBR.
As a result of these initiatives, most countries of the Region have established
national rehabilitation programmes or activities. In a few countries, CBR
coverage has been expanded. National capabilities in management and
referral support have been substantially improved, and several countries have
adopted or enacted legislation and disability acts for the promotion and
protection of the rights and responsibilities of persons with disabilities.
Community-based rehabilitation is a multifaceted programme that involved
many sectors, including education, social welfare, employment and health. At
present, charitable institutions and NGOs carry out many of the programme
activities.
6.3. Community-based AIDS Care
WHO Regional Office for South-East Asia has made substantial efforts to
develop and strengthen comprehensive care for HIV/AIDS patients in which
community-based AIDS care is an integral part of the system. The principal
focus of WHO’s activities has been on integration of HIV/AIDS care as integral
part of primary health care. Efforts are also given for making optimal use of
the available local resources within the community including NGOs for AIDS
care programmes.
In collaboration with Member States, the Regional Office has
concentrating its efforts in several areas of AIDS care. These include:
•
been
Creating awareness among policy makers and the general population
20
•
Supporting the formulation of appropriate national policies, strategies
and programmes with comprehensive care (a continuum of HIV/AIDS
care at various levels, i.e. hospital, community and home) an integral
part of the primary health care system
•
Supporting the provision of comprehensive care (including counseling)
to people infected with HIV or those with AIDS, as well as health
promotion and education
•
Adapting the WHO Home-care Handbook for use in the Region.
The handbook was field tested in Thailand, India, Myanmar and
Indonesia before being promoted for use in countries of the Region. It
has enabled health workers to help individuals, families and
communities to manage AIDS-related problems and to build their own
capacity to provide safe and compassionate HIV/AIDS care at home.
•
Developing and disseminating a numbers of technical documents on
HIV/AIDS, e.g. “HIV/AIDS counselling: A module for trainers”,
“Understanding and living with AIDS”, “HIV testing policies and
strategies” and “Planning and Implementing HIV/AIDS Care
Programmes: A step-by-step approach”
•
Supporting the training of health personnel as well as community
workers.
With comprehensive care - the continuum of care between hospital and home
- the majority of people living with AIDS can be managed at home. They
require hospital care only for specific needs. Home-based AIDS care includes
the provision of comprehensive care by family members, community members
including those living with AIDS themselves, community-based organizations,
NGOs, as well as visiting health workers or volunteers. Home and community
based care have been instrumental in building the capacity of the community
to be responsible for taking care of their own members living with HIV/AIDS,
not merely in HIV/AIDS care, referral and prevention, but also in skill
development and income generation.
The Regional Office therefore provides special support to countries for
developing and strengthening AIDS care, including community-based AIDS
care. The first community-based prevention and care programme for
HIV/AIDS in the Region was started in 1992 at Ban Dong Luang, Lampang,
Thailand. It was the first community to form an anti-AIDS association in the
northern part of Thailand, where HIV/AIDS is a major problem. Later on,
several NGOs joined in developing community- and home-based care
programmes for persons living with AIDS. Buddhist monks at several temples
in Thailand also actively provide community- and home-based care and other
support including income-generating activities in order to enable AIDS
patients to lead meaningful lives.
21
6.4. Other Initiatives for Community- and Home-based Care
6.4.1.
Promotion of Self-care
The WHO Regional Office for South-East Asia accords high priority to the
promotion of self-care as a means to support primary health care. Several
initiatives have been undertaken towards empowering individuals, families,
communities, and various groups within the community, e.g. youth groups,
and women group for self-care for self-reliance.
For example, WHO has provided support for the development of self-care
manuals in Myanmar. Through collaboration of township community health
nurses, midwives and local NGOs, women have been trained on self-care and
are empowered to take care of their own health needs, as well as those of
their families and communities.
A manual for women’s action for health has been developed by the Regional
Office to further facilitate self-care development in the Region. This manual
provides guidance on how women can take care of themselves, their families
and communities in various illnesses.
With the implementation of the Integrated Management of Childhood Illness
(IMCI), the Regional Office has made concerted efforts to promote family and
community action for health at home, including self-care of major childhood
illnesses, i.e. pneumonia, diarrhoea, malaria, measles and malnutrition.
Parents are taught to provide healthier living to support the healthy
development of their children. They also are taught what to do if their children
fall ill, what the danger signs are, when and where to go for appropriate help,
how to look after the sick child at home, and the importance of following
treatment advice.
6.4.2.
Strengthening of Community Health Nursing
Community health nursing services in most countries of the Region are not
well developed. The majority of nursing personnel are employed in the
hospitals at which there are acute nursing shortages. Consequently, nurses
have not been optimally utilized for primary health care. They could be used
not only as direct caregivers, but also as back-up support for community
health workers in the field.
With the increase in the elderly population and the double burden of diseases,
it is essential that community health services be strengthened, particularly for
prevention and control of diseases. Nursing services, particularly community
health nursing, need to be responsive to these changing health needs. They
need to be geared for health promotion. Special efforts, therefore, have been
undertaken to assist Member Countries in establishing and strengthening
community health nursing services. This initiative also aims to strengthen the
home visit component of community health nursing in order to provide a
22
continuum of care between a hospital and home. Concerted efforts are being
made in several countries of the Region to develop “best practice” models for
community health nursing and home health care. In these models
public/community health nurses will assume the role of managers or
coordinators of care that will be given by various health professionals and
family members in the community and home.
The Regional Office supports the training of nurses, to update their skills and
knowledge in community health nursing. A regional training programme on
community health nursing, based on the assessed training needs of countries
of the Region, has been developed.
6.4.3.
Promotion of Community- and Home-based Midwifery Care
As noted earlier, maternal mortality is unacceptably high in many countries of
the Region. The majority of deliveries in the Region occur at home and are
assisted by unskilled attendants. Many maternal deaths also occur at home,
in the community, or on the way to a hospital.
It has long been recognized that provision of community-based maternity care
will help reduce maternal deaths. It is critical that all pregnant women have
access to skilled attendants at birth, and to essential obstetric care when
encountering obstetric complications and emergencies and medical
assistance is not available.
The Regional Office has developed Standards of Midwifery Practice for Safe
Motherhood to assist Member States ensure and enhance quality of their
midwifery care. In implementing these standards, community- and home
based midwifery care is strengthened. The midwifery-trained personnel must
be proactive and reach out to the community that they serve. In addition, they
need to be equipped so that they can provide selected life-saving
interventions in order to save women’s lives.
7.
FUTURE PLAN
The Regional Office will continue its efforts to work with Member States and
other development partners - both national and international - to strengthen
community- and home-based care in order to promote healthy living for
people of the Region. The activities highlighted below are planned to be
carried out during the 2000-2001 biennium.
•
Development of a model for community-based elderly care with an
emphasis on collaboration and partnerships with NGOs
•
Development of a model for community-based prevention of major
noncommunicable diseases, directed at disease surveillance and
health promotion and education for healthier life style
23
•
Strengthen community-based rehabilitation strategies and approaches
in selected areas in Member States to increase accessibility of the
rehabilitation services
•
Development of health promoting workplaces (or healthy workplaces)
to facilitate occupational health as well as health of the general public
•
Development of a community-based maternity care model which
emphasizes the provision of good quality, integrated care with the
active involvement of the community and man
•
Development of models to strengthen the role and enhance the
productivity of nurses, midwives, doctors - general practitioners and
other health personnel in community- and home-based care
•
Development of a manual to promote family and community practices
for child health
•
Promotion of community-based care for mental health and substance
abuse.
Various concerned technical units within the Regional Office are responsible
to carry out these initiatives. To optimize the use of resources, special
attention is being given to greater collaboration among units and programmes.
This will help to ensure and foster coordinated development in countries of the
Region.
8.
CONCLUSIONS
The WHO South-East Asia Region is in demographic and epidemiological
transition. Countries are confronting a double burden of diseases. There is a
shift towards holistic health care, with an emphasis on health promotion and
protection and rehabilitation in addition to the curative aspects of care. There
is increased attention being given to the provision of community- and home
based care particularly for the elderly, the disabled, those with chronic
diseases, and the vulnerable and the marginalized groups. Several initiatives
have already been undertaken to support countries for these developments.
WHO and its Member States will continue their collaboration to further
strengthen community- and home-based care for healthier population in the
Region.
9.
BIBLIOGRAPHY
WHO (1997) Declaration on Health Development in the South-East Asia
Region in the 21st Century. WHO, New Delhi.
WHO (1998) Regional Health Report: Focus on Women. WHO, New Delhi.
WHO (1999) Blindness and Low vision in South-Ease Asia: Current Status
Issues and Challenges (SEA/NCD/Meet 1/6, 25 September 1999,
unpublished Manuscript), WHO, New Delhi.
24
WHO (1999) Community-Based Elderly care in South-East Asian Countries
(WHO/NCD/Meet 2/11,
25
September 1999,
Unpublished
manuscript). WHO, New Delhi.
WHO (1999) Health Situation in the South-East Asia Region, 1994-1997.
WHO, New Delhi.
WHO (1999) HIV/AIDS and Sexually Transmitted Diseases - An Update.
WHO, New Delhi.
WHO (1999) Status of Tuberculosis in the 22 High-Burden Countries. World
health Organization, Geneva.
WHO
(1999) Regional Situational Analysis on Demographic and
Epidemiological Transitions and Strategies on Active and Healthy
Ageing (WHO/NCD/Meet 2/5, 25 September 1999, Unpublished
manuscript). WHO, New Delhi.
WHO (1999) Strengthening Training of Health Workers in Community-Based
Rehabilitation: Report of an Intercountry Consultation, Bangkok,
Thailand, 3-7 May 1999. WHO, New Delhi.
25
Ccw
Z 3• /
WORLD HEALTH ORGANIZATION
STUDY GROUP
HOME-BASED AND LONG-TERM CARE
Ma’ale Hahamisha, Israel
§
5-10 December 1999
“HOME-BASED LONG-TERM CARE”
Paper To Cabinet
Social Change And Mental Health
World Health Organization
25 May 1999
LTHHSC/SG/99/5
Paper to Cabinet
25 May 1999
To:
From:
Date:
Topic:
Cabinet
DrY. Suzuki EXD/HSC
25 May 1999
Home-Based Long-Tenn Care
Background
1. The next two decades will see dramatic changes in the health needs of the world's populations
with noncommunicable diseases as the leading causes of disability. Increases in the older
population by up to 300% are expected in many developing countries. In addition, HTV/AIDS,
TB and malaria continue to be a major cause of disability (and death). Everywhere there is a steep
increase in the need for long-term care.
2. These changes require a very different approach to health sector policy and health care services
since a disease-specific approach, alone, is no longer appropriate. The one common denominator
resulting from these demographic and epidemiologic changes is functional dependency and
the growing need for care to manage everyday living. Rising health care use and spiraling
costs have everywhere led to a trend and the necessity to treat patients in the home1' The burden
of caregiving is primarily on women, who have veiy little access or control of the resources
needed to assume this responsibility. Well managed and supported home care, however, can
improve the quality of life of patients of all ages and caregivers alike.
3. In all countries, the family has always been and still is the major provider of long-term care.
This is true for care of older persons as well as for care of patients with chronic conditions,
including HTV/AIDS, TB and malaria. However, the heavy burden of care cannot be shouldered
by families alone. Due to a wide range of social, economic, demographic and epidemiological
factors, family resources are dwindling (e g. migration, changing rural and urban social
environments, poverty, family members themselves being old or impaired, etc.). In addition,
family care givers need guidance, support and skills to manage often complex care.
4. In the very poor countries, most common ailments are treated in the home and most people
die in the home. Health centres are at the same time overwhelmed and underutilized (staff not paid
for months, drugs and equipment not available, client expectations for quality of service not met,
etc). At the same time as there is a growing need for home care, there is a very real danger of,
more than ever, families—who do not have the means or the knowledge-being left to their own
devices to carry the caregiving responsibility and work. Again, the price is most often paid by
women.
5. In all WHO regions there is strong interest in home care. But while the need for it is growing
rapidly everywhere, so is the danger that the label of home care will be used to forego public and
government responsibility with dire consequences for the quality of care, for families, and in
particular for the health and lives of women who are the main care givers not only for their own
families and communities, but also in the formal health sector. An optimal balance between family
and public responsibility must be sought.
1 Home care is defined as the provision of health services by formal and informal caregivers in the home in order to
promote, restore and maintain a person’s maximal level of comfort, function and health including care toward a
dignified death. Home care services can be classified into preventive-promotive, therapeutic, rehabilitative, long
term maintenance and palliative care categories. This paper primarily addresses long-term and palliative home care.
6. Home and family care giving has implications for many sectors (e.g., education, labour,
transport, etc.) and is an integral part of the health and social care systems pertinent to all age
groups. It must be integrated with other public health, clinical and social care. Concerns of
equity, quality, and sustainability and a life-course approach must guide its development. All
aspects of home care (policy, financing, legislation/regulation, its human and physical resources,
continuity and support of care, etc.) need to be addressed.
Recommendation
For Cabinet to agree to launching an inter-cluster project which will result in:
1.
2.
3.
4.
An evidence base from research and experiences in developing and industrialised
countries, (see Annex 1).
Collaboration with Member States to develop country policies and home-care programmes
which will make a difference to the quality of life of their people. (Annex 2). Work at
country level might have different points of entry. One country might choose to begin
with strengthening district level capacity; a second country might first develop support to
family care givers; and a third country, involved in health sector reform, might choose to
begin with national capacity strengthening and policy development. It is also possible that
a country might choose multiple-entry points simultaneously.
A partnership to develop home and long-term care strategies with Regions, other UN
agencies, NGOs, donors, academia and the private sector.
Establish an Oversight Group which will co-ordinate WHO work related to home-based
care and develop a WHO policy and strategies.
Phases: The project will progress in stages. After initial consultation, the implementation will
depend upon the human and financial resources and the readiness of the partners (in particular,
the speed at which countries and regions wish to go ahead), (see Initial Components of Work
Plan, Annex 3)
Consultation
•
•
•
•
•
•
A draft of this paper has been discussed with colleagues within the
HSC Cluster, CDS, NCD, CHS, SDE, HTP, and EIP clusters and their comments have
been included in this version.
RDs or DPMs from the six regions gave the green light to send the draft work plan to
their region. Feedback received from AFRO, AMRO, EURO, SEARO and WPRO
(included in present version) and interest expressed by WRs.
UN, ILO, (in future: World Bank, Regional Banks, OECD, UNICEF, UNDP and
UNESCO).
Bi-lateral donors (to date: Japan, Germany, U.S., Israel).
Selected NGOs.
Selected academic institutions.
Conclusion
Given the staggering and growing need, the technical complexity and the political
importance to industrialised and developing countries alike, the project needs to move forward.
A detailed plan of work for accessing extrabudgetary resources is being prepared. Collaborative
work with EIP has been initiated.
Home and Long-Term Care
Developing Evidence-based Standards & Norms
M . J. Hirschfeld
Annex 1
17 March 1999
Home and Long-Tenn Care
Country Intervention
Initial Components of Work Plan
Developing Evidence-based Standards & Norms
•
•
•
•
•
»
To develop an analytical framework for the review of evidence to direct future work.
To analyse the existing knowledge and experiences.
To initiate discussion circles on the values and ethical reasoning underlying home care,
considering the changing social, economic, political and cultural realities.
To analyse the evidence on the effectiveness of education and training for home care for
the formal and informal sector as well as for different provider groups.
To analyse the effects of different financing approaches and legislation on the availability
and quality of home care.
To develop a range of approaches for ensuring equitable, affordable, culturally
appropriate, quality home care.
Country Intervention
•
•
•
To strengthen the national capacity of selected countries to develop, implement and
monitor policies for home care which are an integral part of human and economic
development, as well as health and social policies.
To strengthen the district capacity in selected countries to develop home care as an
integral part of civil society, public health and clinical services.
To develop a life-course approach to the planning, management and delivery of home care.
M. J. Hirschfeld Annex 3
17 MARCH 1999
Cm i/43-<8
WORLD HEALTH ORGANIZATION
STUDY GROUP
HOME-BASED AND LONG-TERM CARE
Ma’ale Hahamisha, Israel
§
5-10 December 1999
“ISSUES IN HOME CARE SERVICES”
“ISSUES IN INFORMAL CARE”
Chapters 4 and 5
Social Policy Studies, No. 19
Caring For Frail Elderly People, Policies in evolution
Published by the Organisation for Economic Co-operation and Development
OECD 1996
LTH/HSC/SG/99/4
Chapter 4
ISSUES IN HOME CARE SERVICES
by *
Anne Jamieson
Centre for Extra-Mural Studies, Birkbeck College
There is widespread agreement that older people should be able to live as long as possible (or as long as they
wish) in their own homes, or at least closely integrated into the community. This idea has been part of the policy
discourse at national as well as international levels for decades, but the debate has intensified in the last decade. A
recent manifestation is a declaration by the European Union Council of Ministers for Social Affairs on policy
objectives for older people, which calls upon member states to “promote a range of qualified services (...) so that
dependence and institutionalization can be avoided as far as possible” (Council of the European Union, 1993).
The concept of “ageing in place” is both useful and pertinent - useful because it embraces a principle to
which we can all adhere, pertinent because it does not make any assumptions about levels or patterns of care to be
provided, or about the role of the state and of families. This is just as well, because beyond the consensus about
this general principle are a number of conflicting objectives and expectations, as well as widely varying practices.
The following issues should be bome in mind in any international debate about “ageing in place”.
The issues
Countries have experienced and are experiencing quite different rates of ageing, and therefore the challenges
it presents are varied. Many of the northern European countries of the OECD have been ageing for several
decades and are not facing any significant shifts in the next 10 or 15 years. Southern European, North American,
and Pacific members of the OECD are currently experiencing relatively rapid ageing of their populations. Thus it
matters a great deal which countries one is talking about, as well as what time scale one uses. For many countries,
the new challenges will not present themselves until several decades into the next century. This makes the
potential problems of less concern to politicians, and it makes predictions even less certain.
It is well known that predictions regarding the challenges for the future are based on a range of assumptions
about trends in mortality, morbidity, fertility, levels of productivity, unemployment, and women’s labour market
participation. Very pessimistic scenarios suggest that the problem is of such magnitude that it cannot be solved
within the existing structures of health and social care provision. Critics of this position point to the significant
rates of ageing which many societies have already experienced and coped with, and the uncertainties of the
demographic and economic predictions (van den Heuvel et al., 1992). This debate will of course continue; new
evidence will appear and old predictions will be reassessed. Whatever the trends, however, there is no doubt that
the assumptions underlying the predictions, and certainly the policy implications which are drawn, are often
based on political, ideological, and ethical considerations, even if couched in terms of “economic necessity”.
This is highlighted particularly well in international analyses of policies and practices.
There are significant variations between countries as regards existing patterns and levels of care provision.
These variations affect the policy agenda, which, other things being equal, is very different in a country like
Denmark, where provision of institutional and home care is high, from the agenda in a country like Greece,
where publicly funded long-term care of any kind is almost non-existent.
The challenges facing countries are determined not only by existing levels of provision but by the nature of
their health and social welfare systems. I use the term “systems” to refer to a number of different aspects,
reflecting different perspectives and levels of analysis:
67
- First, there are particular structural features, like organisational and professional fragmentation, particu
larly the separation of health and social services, which is so common in most countries. Much has been
written about the need for better coordination between the different parts of the systems. I will argue that,
although there is undoubtedly scope for much improvement in this area, the impediments to change are
not primarily structural.
- A second aspect of systems is the historically inherited arrangements for health and welfare. Countries .
with insurance-based health care systems face very different problems from those with national health
service systems. Similarly, the “welfare regime” of a country (Esping-Andersen, 1990), that is, the basis
on which its citizens receive social benefits and services and the role of the state, sets certain parameters
within which policy options are considered. It is important to consider the criteria of eligibility for health
and for social services, this will be illustrated by examples from four countries: Denmark, Germany, the
United Kingdom and the United States.
- These examples also illustrate a third aspect of systems, namely the particular political priorities which
affect policies within the constraints of the other features of the systems. More will be said about this
below in discussing recent ideas about the need to consider voluntary and private solutions. Such
thinking, I will argue, is very much politically grounded.
The four country examples given later illustrate that policies concerned with ageing in place have very
different aims. The aim could be to improve the quality of life of older people and to relieve families. This is very
different from aims which stress cost savings. This raises the very complex issue of substitution. If home care is
expected to be a less costly substitute for other forms of care, at least two questions need to be addressed: first, for
what other forms of care is it expected to substitute? Second, is there any evidence that home care is cheaper than
other forms of care? The answers to these questions are by no means obvious and require prior answers to other
questions about the relation between services such as hospitals, nursing homes, residential homes, and home care.
In addition to substitution, the notion of ageing in place should be seen as part of a process of “normalisa
tion”, that is, as a way of improving the quality of life of older people, of enabling them to participate in normal
social life as far as possible. This will be addressed in the last section, which will also consider the implications
of such normalisation for the debate about the future of long-term care.
Trends in institutional and home care
' It is notoriously difficult to get reliable and comparable figures in this area, owing partly to differences in
statistical calculations and sources, partly to variations in the nature of services compared - for example, an
“institutional place” can be anything from a bed in a crowded dormitory to a self-contained flat in a small unit.
Such differences can be crucial when one considers future forms of care and the role of institutions. Nevertheless,
for the purpose of comparing broad trends, we may have to accept that it is better to be broadly correct than
precisely wrong.
The figures indicating the broad trends are analysed in Chapter 3 and other literature (Jamieson, 1991; and
Thorslund and Parker, 1992). They reveal enormous variations between countries as regards provision of care,
whether institutional or home-based care.
The proportion of people aged 65 and over being cared for in institutional settings ranges from less than
0.5 per cent to around 10 per cent. Low rates of institutionalisation (less than 3 per cent) are found in Greece,
Italy, Portugal, Spain, and Turkey. A medium provision group (4-5 per cent) consists of Austria, Belgium,
Denmark, France, Germany, Ireland, Sweden, the United Kingdom, and the United States. Slightly higher rates
(6-8 per cent) exist in Australia, Canada, Finland, Japan, Luxembourg, New Zealand and Norway. The
Netherlands is in a category of its own, with about 9 per cent of older people living in institutions. Looking at the
trends over time, there are more similarities than differences. Thus, in all countries, the proportion of older people
living in institutions grew in the 1960s and most of the 1970s, and since about 1980 a downward trend is visible
in a number of countries including Australia, Denmark, the Netherlands and Sweden.
Regarding trends in the provision of home care, there are even larger problems in obtaining reliable and
comparable data. “Home care” covers a range of formal services available in the community or delivered to
people in their own homes, of which the quality as well as the duration varies a great deal. “Home help”, that is,
help with personal care and homemaking, is a key service for an “ageing in place” policy and, as with
institutional care, the international variation in provision is considerable. The OECD estimates that provision of
home help (see Table 3.6) is almost non-existent or at best negligible (1 per cent or less receiving home help) in
Greece, Italy, New Zealand, Portugal, and Spain. Four of these countries (the Mediterranean ones) are also in the
low-provision category as regards institutional care. Countries with very modest levels of home help (2-3 per
68
cent) are Austria. Canada, Germany, Ireland and Japan. Many areas of the United States would also fall into this
category, but it is difficult to generalise about the United States, where coverage ranges between states from 0 per
cent to S per cent. The countries with a significant level of provision (6-9 per cent) include Australia, Belgium,
France, the Netherlands and the United Kingdom. The countries with a high level of provision of home help (over
10 per cent) are the Scandinavian countries. Of these, Denmark and Finland stand out as extremely well covered.
Substitution of services
There is no clear pattern of substitution between institutional and home care. In some respects it is rather the
opposite. Most of the countries with the lowest provision of home care are also lowest in respect of institutional
care. None of the countries with high levels of provision of home care have particularly low levels of institutional
care. There is no country where the balance of service provision could be said to be clearly in favour of one or the
other, although Canada, Ireland, and Germany come closest to this in having a significant balance towards
institutional care. Also, if one considers the (relatively small) differences among the countries which have high
levels of provision of home care, there is a slightly discernible trend in the direction of substitution.
*
If one considers the trends in the development of home care services, and the patterns of use by factors such
as age and functional ability, the picture becomes more complex. Although there is a clear tendency for the use of
home care services to increase with age, the trend is not the same everywhere. Services are more heavily
concentrated on the oldest elderly people in the United Kingdom than in Denmark and France. Denmark is so
well provided that all age groups seem able to share in the services, and it is particularly remarkable that,
compared with the United Kingdom, three times as many young elderly people receive home care in Denmark as
in the United Kingdom. In France the service is rather thinly spread over all age groups and, because of the
overall low levels of provision, this means that very old people receive relatively little home help.
This is a reminder that figures for coverage, that is, the proportion of the population receiving home help at
any one time, are not the same as overall provision and amount of care received. For the purpose of identifying
broad trends between countries, differences in coverage are generally a reasonable indication of differences in
overall provision. However, for examining trends in regard to particular age groups or other subcategories, the
distinction is important, and increasingly so, as there are signs in many countries that recent changes entail some
redistribution of existing services. Thus, although in most cases the balance of overall provision does not point to
“ageing in place” policies, such policies may be more evident if one is able to consider the distribution of
existing services more closely. Home care strategies could entail the targeting of services to those perceived to be
most at risk of institutionalisation. This is considered later.
Lack of well-planned policies
The picture which emerges from a comparison of patterns of provision and use of services reflects a lack of
well-planned policies in the area of long-term care for older people. Thus, until the 1980s the notion of home care
as a cheaper substitution for institutional care had had little effect on policy statements or practice. Yet, at the
same time the notion of “remaining at home as long as possible” had been part of the policy discourse in many
countries since the 1960s. Home help services developed in many countries as a gradual adaptation to demo
graphic changes, more in parallel with than as a substitute for institutions. In many places, in Europe and
elsewhere, the home help service was first established as a family service, providing “substitute housewives”
(Gambeson, 1991; Howe et al., 1990). As the pattern of demand changed, the home help providers, encouraged
by generous government subsidies, gradually switched the service towards older people, and the economic and
political climate of welfare expansion made it possible to expand home help provision in countries such as
Denmark and the rest of Scandinavia, Australia, the Netherlands and the United Kingdom. Thus, among the
countries which are now most highly provided with home help services, the most significant growth actually took
place before policy measures related to the care of older people began to intensify. One could say that there was a
period of growth without policies, which has now been followed by a period of policies without growth.
This is perhaps not surprising, as the increasing interest in home care is driven by financial considerations in
a climate of cost containment and limited growth. Thus the slight reduction in the proportion living in institutions
which has been seen in a few countries has not been matched by a corresponding increase in provision of home
care, but more by some redistribution of existing services.
* Comparing Denmark, Finland, the Netherlands, Norway and Sweden, one finds that the ranking for institutional care is the
reverse of that for home care.
69
Factors affecting policies: four country examples
By the 1980s a large number of countries began to produce plans related to care of older people. However,
the extent to which they have been followed up by concrete policy measures varies, and, even more important, the
solutions considered reflect the particular concerns and circumstances in different countries. Four country
examples illustrate some of the differences and point to some of the questions which must be addressed in any
more general debate about future policy directions.
The examples which follow are from two countries with a tax-funded national health service, Denmark and
the United Kingdom, and two countries with insurance-based health care, Germany and the United States. The
nature of the funding of health care is one important factor affecting home care policies. The nature of the welfare
regime (Esping-Andersen, 1990) is also a significant factor; indeed, any attempt to understand policy develop
ments must consider the particular combination of the health and social welfare arrangements. The examples
illustrate this, but they also illustrate that these two “systems” factors alone are not sufficient to explain current
trends.
Two “national health service” countries: Denmark and the United Kingdom
Denmark and the United Kingdom have similar structures of health and social services. The health care
system is funded and administered separately from the social services system, in Denmark by elected county
councils and in the United Kingdom by centrally controlled, locally administered health authorities. Social
services are organised and funded by locally elected authorities at municipal level, and both residential and home
care come under the auspices of these authorities. In Denmark community nurses are part of the social services
system, whereas in the United Kingdom they are part of the health service. The health and social budgets are
separate and to a large degree funded by separate sources: social services by local taxes (plus central government
grants), and health services from central government tax revenue.
Providers in Denmark are almost entirely within the public sector. In the United Kingdom there is a mix of
public, private, and some voluntary provision in the institutional sector, whereas public services still dominate the
home care sector. In both countries people have free access to general practitioners, who are paid on a list basis.
Access to both health and social services is based on professionally defined needs. Health-related services are
free. Home care services (other than nursing) often entail co-payment, although in the United Kingdom the extent
to which this is the case varies considerably among local authorities. In Denmark home help was for a brief
period free for all, but recently some co-payment has been reintroduced.
Both countries have recently introduced significant changes through legislation, aimed at encouraging a shift
towards non-institutional care.
Recent reforms in Denmark
Ln Denmark the distinction between institutional and home care has simply been “legislated away”. New
institutions can be built only in special exceptional cases. The new concept is “elderly-friendly housing”,
coupled with services delivered to people according to needs, irrespective of where they live. The idea is that
services should follow people, not the other way around, and that the status of people should be the same
irrespective of the nature of their residence. Local authorities differ in the extent to which they have introduced
changes, but many have now set up new service structures, with emphasis on “elderly housing”, combined with
decentralised, multidisciplinary teams of service providers, including 24-hour availability of care and respite care
(see Chapter 8).
Cases where successful shifts in care provision are reported (Wagner, 1987; Holstein, 1993) point to some
interesting lessons:
- The highly decentralised structure of provision, combined with an integrated and uniform set of providers
(all local authority employees), enables local authorities to implement changes consistently and to
integrate and coordinate social and nursing care services.
- Training of personnel in new approaches and in teamwork is another important ingredient in these success
stories. Such training - much of which entails teaching nursing home personnel new skills - carries costs.
- An important aspect of success is that resources have been made available, as the changes do not, as yet,
appear to have entailed overall cuts in costs.
In the Danish setting favourable conditions for change exist, partly through historically inherited unified
structures and attitudes to welfare, partly through recent central government legislation. Among these is the
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existing high level of public spending on social services - not least on services for older people - reflecting one
of the most comprehensive roles of the state in providing welfare.
Paradoxically, this may also be the source of the emerging resistance to current changes. One of the reasons
for the popularity among policy-makers and social service practitioners of the shift towards home-based care is
that spending on institutions previously has been very high, and this makes alternative forms of provision, even
for quite needy people, appear cost-effective. But the high level of spending on institutions is reflected in the very
high quality of accommodation and care provided. This means that for many people “going into a nursing
home” has been an attractive prospect. Herein lies the source of what seems to be growing disquiet in the
population about ±e idea of abolishing nursing homes in favour of elderly-friendly housing. The current
government’s response to this is interesting: the Minister for Social Affairs recently declared that local authorities
are allowed again to use the term “nursing home” (Politiken Weekly, 12 January 1994).
Two important aspects of the development of Danish home care policies should be noted:
- Although the proportion of people in more traditional institutions has declined slightly, there has been a
corresponding increase in the provision of elderly-friendly housing, that is, housing which is specially
adapted to older people, whether designated flats in general housing or specially constructed buildings for
older people. Many of these come very close to institutions in terms of physical facilities offered and
intensity of services available if needed. Thus, the home care policy does not merely entail the notion of
older people remaining in their original homes.
- There is already a very high level of provision of home help. The overall level has increased slightly but
the main change has been a shift in allocation towards those over 80. Plans for the period until the year
2000 are for the provision of home help to keep up with the increase in the number of very old people,
and for the number of places in home care to remain static, thus reducing the proportion of older people
living in them. For the same period, the proportion of older people living in elderly-friendly housing is
planned to increase (Socialministeriet, 1993).
Thus, while developments in Denmark have in part been driven by cost considerations, these are severely
curbed by the continuing strength and popularity of the welfare state, a popularity which so far has excluded from
the centre of the policy agenda any serious consideration of more private, voluntary, or individual/family-based
solutions. In this respect Denmark differs from Sweden, which is increasingly held up as the example of the
possible demise of the “Scandinavian welfare regime".
Recent reforms in the United Kingdom
In the United Kingdom the Community Care Act of 1990 reflected different concerns, partly arising from
particular financial structures, partly from political priorities. It has been implemented from 1 April 1993 (see
Chapter 13).
Very briefly, the Act was originally prompted by a concern with the dramatic rise in the number of private
residential and nursing homes in the 1980s. Local authorities were responsible for the care of older people outside
hospitals. Faced with an increasing demand combined with cash limits, they encouraged many older people to
enter private nursing homes, for which older people would either pay themselves or, if they were poor, have the
cost met from the central government social security system. In other words, the financial burden could be shifted
from local to central government. The new Act has closed this option, transferring all responsibility to local
authorities. Those on low incomes cannot now obtain central government funding for residential care through the
social security system. Local authorities have a financial incentive to keep down referrals to institutions, since all
the costs are to be met within an overall budget covering both institutional and home care.
Another important aspect of the Community Care Act is the stress on provider pluralism. The impetus for
this is the government’s commitment to free enterprise and to minimising the role of the public sector, especially
the role of local authorities. These local authorities are no longer allowed to be the sole providers of care, but are
obliged to contract out a significant proportion of both institutional and home care services to private and
voluntary agencies. The government’s intention is to create a market of competing providers, with the intention of
improving cost-effectiveness and consumer choice. Local authorities are to act as “enablers”, purchasing
services and, through case management, packing them to suit the needs of individual clients, or “customers”.
This trend is not, of course, unique to the United Kingdom. It has been argued that service allocation has too
often been provider-led rather than needs-led in part, it is alleged, because it has been a public monopoly which is
not responsive to consumer preferences nor able to regulate itself for quality. Thus “provider pluralism”,
“(internal) markets”, “needs assessment”, and “case management” are now well-known terms in the discourse
about care in the United Kingdom and many other countries, if not in Denmark.
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“Case management” is seen as a way of achieving needs-led provision and of overcoming the structural
barriers between different providers (see Davies, 1994). The need for case management clearly increases as the
number of providers multiplies. But even before the introduction of provider pluralism the problem of organisa
tional fragmentation, especially the separation of health and social services, had been widely seen as one of the
main impediments to continuity and flexibility of care. As this chapter will argue, the nature of this problem
differs between countries, as do the attempts to overcome it. In the United Kingdom the organisational and
financial separation of health and social services, including the separation of community nurses from other forms
of home care, continues. But the two sectors are required to cooperate more closely at the strategic as well as the
operational level, and case management is part of the response to the problem.
At this early stage, assessment of the implications of the new arrangements must be largely speculative.
Responses to the changes from planners, providers, and older people themselves have ranged from excitement
and optimism to cynicism, confusion, and anxiety. One possible effect is that the stress on “proper needs
assessment” will lead to the uncovering of new needs, resulting in increased demands. Thus, on the consumer
side the issue has been raised of whether the explicit recognition of people’s needs automatically carries with it a
right to receive services. No one has yet tested this in court, and it is doubtful whether such a claim would be
upheld. Certainly, there is an important general issue here about the implications of improved needs assessment:
the better we get at identifying and making explicit the needs of the population, the more visible these needs
become. This in turn may give rise to increasing expectations and demands, which will serve to expose the
possible deficiencies and inabilities of the system to meet all these needs. Since the stress on needs assessment
arises from a desire to “filter out” those who do not need services, the possibility that it would uncover more
unmet needs is not likely to be terribly popular with politicians. In the United Kingdom the intention was not to
increase the resources allocated to care of older people, but to shift the balance from the residential or nursing
home care towards home-based care.
The changes in the financing structure seem likely to have the intended effect of stemming the growth in
institutional care, but whether this will be replaced by adequate provision of home care is debatable. Although
resources have been transferred from central government to local authorities - from the money which would
otherwise have been spent on institutional care - it is possible that the sum may be inadequate and that, in
practice, authorities may be faced with an increased burden. It is possible, but by no means certain, that the
emergence of new competing providers will lead to increased efficiency. Much depends on whether there will
actually be enough new providers in the system. Better needs assessment and case management could improve
“targeting efficiency” by directing services to those who need them most. A possible effect of this is that many
of those considered less needy will be deprived of help, their quality of life will deteriorate, and the burden on
informal carers increase. In short, the changes may lead to overall savings for the public sector and to a shift from
institutional to community-based care, but they may do so at the expense of older people and their families.
Another possible effect relates to the role of the voluntary sector. Their core mission of help and advocacy
on behalf of older people may be eroded by pressures to compete with other providers for resources.
Developments in the United Kingdom reflect many of the issues facing policy-makers elsewhere, including
the general disillusionment in East and West with socialism and state welfare. On the face of it, the changes in the
United Kingdom suggest that a shift is in process towards a more liberal and residual type of welfare regime
(Esping-Andersen, 1990). But to what extent the political rhetoric has actually resulted in a reduction of the role
of the state is debatable. As funder and regulator of services and benefits, it is still very much at the centre. As
provider of services its role may diminish, but this does not necessarily change the nature of the welfare regime.
Two “health insurance" countries: Germany and the United States
In contrast to Denmark and Britain, Germany and the United States are examples of welfare systems
characterised by insurance-based health care combined with a residual social welfare system. This combination is
one of the major barriers to any significant development of long-term home-based care.
Care of elderly people in Germany
The majority of the German population is covered by insurance for acute health care. Access to doctors and
hospitals is easy, and treatment is an insurance-based and legally enforceable right. Within the insurance
framework there is a strict hierarchy of service entitlement, ranging from medical treatment, specialised nursing,
and basic nursing to home help as a supplement to nursing. The system of provision is a pluralist one, a mix of
the different welfare organisations and private providers. For those who have completed their medical treatment,
that is, who are not labelled as “ill” but “merely” as disabled and in need of help, health insurance has not until
recently provided any coverage; and even recent changes do not provide adequate coverage for long-term care.
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People in need of long-term care have had to rely on the social welfare system, which is a highly selective,
means-tested system operating on the basis of the principle of “subsidiarity”, whereby the state plays a residual
role (Dieck and Garms-Homolova, 1991; Grunow, 1990). It is the combination of these two systems, with their
very different criteria of eligibility, which poses a problem for policies concerning long-term care.
The pressures to find solutions are as strong as the barriers which stand in the way. Thus the system
encourages medicalisation, and health care expenditure has been increasing. Yet an extension of the insurance
system to include care, as opposed to cure, has been resisted for'fear of breaking with the implications of
“subsidiarity”, namely that care in the first instance is a family responsibility. For short-term care following
medical treatment, home care policies have been fairly successful in enabling early discharge. Changes which
were introduced with the 1988 Health Insurance Reform Act introduced some coverage for long-term care at
home, but both the amount and the period of time covered were severely limited. A more radical solution has
been sought with a law in 1994 introducing a compulsory insurance scheme for long-term care. In view of the
residual role of the federal government, the main issue has been whether employers and unions would accept
financial responsibility (for details see Chapter 18).
Care of elderly people in the United States
The United States is similar to Germany in that the insurance principle dominates health care funding and
that home care is generally covered only if short-term and prescribed by a physician. A major difference is that a
large proportion of the population is not adequately covered for health care. The United States also differs from
Germany in having separate health insurance for older people (Medicare), which depends on financial support
from the federal government and involves a significant burden of co-payment by recipients. In principle,
Medicare provides home care in the same way as the German health insurance scheme, that is, care has to be
medically prescribed. Older people in need of long-term care have increasingly come to rely on Medicaid,
although it was not originally set up for this purpose. Medicaid is linked to the welfare system and operates along
lines similar to those of the German welfare system, being means-tested and financed jointly by the federal
government and the states (see Chapter 14). The problem of medicalisation also features in the American system,
and for largely the same reason as in Germany. Because coverage for home care is conditional upon a doctor’s
prescription, there has been a tendency for agencies providing care under these schemes to medicalise the
services they provide, for example, to shift provision from personal care and homemaking to ventilators or blood
transfusion (Binney et al., 1990).
Some of the major policy measures of the 1960s can be seen as an adaptation to changing needs associated
with the ageing of the population. Medicare, introduced in 1965, was specifically aimed at older people, but
coverage was largely restricted to acute care. The Medicaid programme, on the other hand, was not introduced
specifically wi± older people in mind, but came to be used by them to fund long-term residential care. Paralleling
policy changes in Denmark and the United Kingdom was section 2176 of the 1981 Omnibus Reconciliation Act,
which was prompted by an increase in the use of nursing homes. It allowed states to provide some home care
within the Medicaid scheme. Similarly, the Medicare programme has been modified to include more cases of
home care.
The measures taken in the 1960s have been described by some as representing a significant shift in
American policy towards the acceptance of old age and disability as a basis for certain entitlements to care (Fox,
1989). However, they have far from solved the problems for this client group. Cost-containment measures have
put severe restrictions on the extent to which services reach those in need, and older people are competing with ■
younger generations for Medicaid resources (Tannenbaum, 1989). As far as home care is concerned, it is in the
area of high-tech health care that the major successes have occurred (Goldberg, 1990). At best it can be said that
the system has allowed a great deal of experimentation; practices in the different states and within them therefore
vary considerably. Certainly there is widespread interest, judging from the number of experiments and studies
evaluating the cost-effectiveness of home care. However, the bulk of long-term care is done by families or
individuals themselves.
As with Germany, policies in the United States have to be understood in the context of political priorities,
which are to find ways of controlling health care costs and to maintain the residual role of the state in social
welfare. In the United States health care reform is clearly a priority and an urgent problem because of the unequal
distribution of health care. How far any new health reform proposals will address the problems of long-term care
seems uncertain (see also Chapters 14 and 19). In view of the pressing need to provide basic health care for all, it
will not be surprising if issues related to long-term care are pushed further down the list of priorities.
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Comparing systems
In dwelling upon four selected systems, the aim has been to illustrate some of the factors affecting policy
developments. The brief country descriptions are in many respects inadequate for a thorough comparative
analysis, and serve mainly to suggest what kinds of factors to bear in mind. These include the following factors.
The mode of funding for health care has important effects. In insurance-based systems, for example, there
has been a stronger tendency towards medicalisation of elder care. As far as policy debates are concerned, the
actors involved and the interests at stake are different in the insurance systems.
The nature of the difficulties and the solutions likely to be on the agenda are also dependent on the role of
the state in social welfare provision. In systems where the state has played a residual role, the obstacles appear
particularly serious. In Germany the proposals debated in recent years illustrate the constraints inherent in the
system, for example, the reluctance of insurance organisations to extend coverage beyond medical treatment and
the reluctance of the state to extend social welfare entitlements. In other words, the policy issues, and therefore
the nature of the debate, have been very different in these systems from those in the United Kingdom or
Denmark. In the latter two countries the debate has been more about new forms of provision already within the
public domain, rather than with whether and how long-term care should be financed.
However, the differences highlighted within the two categories of countries should also caution against any
mono-causal explanation. The nature of the systems and types of welfare regime are likely to pose constraints in
certain directions, but they do not fully determine or predict outcomes. The constellations of political power at
any particular time can clearly be influential in shaping the direction of the changes. For example, the recent
debates and struggles between political parties in Germany differ from the American situation. The United
Kingdom and Denmark are similar in that recent policies have been aimed at shifting the balance from
institutional towards home-based care by means of central state legislation creating financial incentives for local
authorities. But the specific factors which drove the two governments to take action differed, as do the specific
directions of the solutions, partly reflecting different organisational and financial structures and partly the
different political persuasions of the respective governments.
A comparison between Denmark and one of the other Scandinavian countries also illustrates how the current
political climate can affect policy directions. The recent changes in Swedish politics have been interpreted by
many as the beginning of the end of the Scandinavian welfare state. Irrespective of whether this is perhaps a
premature judgement even for Sweden, the continued strong support for a comprehensive state role in Denmark
points to significant variations within welfare regimes.
In parallel with all these factors, economic pressures clearly play their part in setting policy agendas,
although, as argued above, the drive towards efficiency does not fully explain the policy debates and solutions
adopted across countries. However, it is one of the interests which seem to be shared between countries, and any
debate about ageing in place must inevitably address the question of the cost of this compared with other forms of
care.
Home care as a substitute for other forms of care
Is home care a lower-cost substitute?
In recent years, research into the allocation of home care has intensified, as pressures for more cost-effective
provision have increased. The focus of many such studies has been on the issue of substitution, that is, on
whether home care is a cheaper alternative to institutional care. The answer from studies from Australia,
Denmark, the Netherlands, the United Kingdom and the United States, can be summed up as “this is an
extremely complex issue, it all depends, but on balance the answer is: probably not”. This section will briefly
summarise some of the main issues which emerge from this literature: Kemper et al., 1987; Weissert et al., 1988;
Vertrees et al., 1989; Australia, Department of Health, Housing and Community Services, 1992; Coolen, 1993;
Christensen and Hansen, 1993; Holstein, 1993; Monk, 1993; Davies, 1993.
There is plenty of evidence that community care options can enable frail older people to stay in their own
homes. However, whether it is cheaper and whether it reduces the use of alternatives is much more doubtful. In
experimental situations where there is a coordinated effort and competent case management, some substitution
effect can be found, but even in such cases the evidence is not overwhelming. They also clearly raise the question
of whether it is possible to replicate such experiments: “A single demonstration in a single state cannot show us
whether these conditions can be replicated and maintained in an ongoing programme” (Kemper et al., 1987).
Thus one of the conclusions which emerge is that if substitution is to be at all successful it requires skilful
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management, or what some refer to as a cultural change (Davies, 1993) in organisations, something which would
itself be costly, if possible at all (as the case of Denmark illustrated).
For what is home care a substitute?
One of the crucial dimensions of “substitution”, adding to the complexity of the issue, is: What is
substituting for what? Most care systems consist of a number of different services, ranging very broadly from
community and home-based services, various degrees of “sheltered housing”, nursing homes, and other institu
tions to hospitals. The ways in which these different services complement or substitute for one another are by no
means clear. Some evaluation studies which demonstrate savings have done so through a shift from hospital to
nursing home care, for example the ACCESS project reviewed by Weissert (1988). As Kemperand colleagues put
it, “community care might be a substitute for hospital care by permitting patients awaiting nursing home
placement to be discharged to their homes instead. On the other hand, expanding community care might increase
hospital use” (1987, p. 93). Thus nursing homes may be able to treat some conditions for which people living in
their own homes would have to enter a hospital. Policies in many places have in fact been at least as concerned, if
not more so, to reduce the rate of hospitalisation as to reduce use of nursing homes. The introduction of insurance
coverage for short-term acute treatment at home in countries like Germany and the United States reflects this.
Similarly, the expansion of facilities within institutions to include more medical care, as in the Netherlands or
France (which has added sections de cure medicales to many institutions), is a deliberate policy of substitution.
Can better targeting reduce costs?
One of the questions which arise from many studies is whether it is actually possible to identify those at risk
of entering an institution or a hospital. Being in need of services, that is, capable of benefiting from some help, is
not the same as being “at risk” of institutionalisation at some time in the future (see for example Davies, 1993,
1994; Kemper et al., 1987). Similarly, it is difficult, if not impossible, to predict the long-term course of events
for individuals (mortality and morbidity), and many evaluation studies focus on short-term benefits, which might
be cancelled out if a longer-term perspective were taken.
Whatever the effects in relation to substitution, better targeting of services could have implications for costs.
As systems become better at targeting services to those with severe disabilities who require the most help,
whether in the community, nursing homes, or indeed hospitals, the costs of caring for the same number of
individuals clearly increase. Furthermore, the nature of the clientele changes from a “mixed caseload” to a
“heavy caseload”. It changes the service from the point of view of the recipients (for example, residential homes
may become less attractive), and from the point of view of the providers, who will be dealing increasingly with
people in need of a great deal of personal care. A certain amount of slack in the system, while giving care staff
more job satisfaction and keeping the unit costs down, could perhaps also benefit the recipients.
The cost implications also depend on the financial structures. In systems with overall cash limits, it can be
argued, for example, that hospital “bedblockers”, that is, people waiting for a nursing home bed and requiring
little attention, can actually be quite a convenient excuse for keeping out patients who would require expensive
medical treatment. The problem of bedblockers is seen to stem from financial separation of hospital and
community care budgets. However, in structures where these are not separated, as for example in some cases in
Denmark where provision of hospital and community care is funded by the local authorities, the number of
“waiting patients” in the hospitals is greater than in many other parts of the country. One explanation of this is
that these local authorities simply cannot afford for their hospitals to be more efficient.
Can home care be a substitute for institutional care?
There is little evidence that the provision of home care is associated with a corresponding decrease in the use
of institutions. Rather, home care may tap into a different category of consumer population, and evidence from
many countries may cast “a shadow of doubt whether home care will make an indent, let alone replace
institutional care” (Monk, 1993, p. 78). The review by Weissert and colleagues of 27 of what they deemed to be
the most rigorous and generalisable studies from the United States concludes that home and community care
“probably did reduce nursing home use in the majority of studies, but typically the level of use available to be
reduced was small, the amount of reduction small, and so potential for cost reduction was relatively small”
(1988, pp. 326-327). The implication is that so-called inappropriate admissions are already decreasing because of
more rigorous gatekeeping by the institutions themselves. An evaluation report from Australia (Department of
Health, Housing and Community Services, 1992, p. 96) goes so far as to say that “the original concern with
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inappropriate admission to residential care is now dated” because of improved assessment and admission
procedures.
There are signs in many systems that the population of institutionalised people is getting older and more
frail. It is tempting to ask whether there is an optimum level of institutionalisation, a point at which one should
not expect any further reduction. However, as will be argued below, a more fruitful way forward would be to
consider more closely what is meant by an institution and what kind of housing is appropriate for older people.
Another factor which affects whether or not home care may be a cheaper alternative to institutions is the role
of informal carers. Many studies do not take the effect on carers into account, and often the financial and
psychological burden on them can be significant. Whether this is seen as a problem is of course very much a
political or ideological question. Some of the Dutch studies, for example (Coolen, 1993), are quite clear that the
aim of home care services is not to replace carers, rather the opposite. Carers are increasingly part of the policy
rhetoric in many countries. It is recognised that they carry the main burden of care, and that service providers
should consider their needs as well - but not in order to replace them, rather to ensure that they do not relinquish
their role. The situation in the Scandinavian countries is different, although in some of them things may be
changing. Certainly Danish studies of the impact of shifting services from institutions to other forms of care do
not consider carers. Indeed the term “(informal) carer” is not part of the Danish discourse, which uses the term
“relatives”. Here carers are “superseded”, to use the Twigg terminology (Twigg, 1993); they are not expected
to have any obligations to care, and home care services have long been there to replace them (although the
presence of a spouse in the household is taken into account in service allocation; there are still implied
obligations between spouses).
Does home care create new demands?
The issues related to carers - are they to be seen as a cheap source of care or as people with needs to be
met? - can be extended to include older people themselves. If home care is to be viewed mainly as a cheaper
alternative to other types of formal provision, the problem arises that making it more available and visible may in
itself create new demands. This is shown in some Dutch studies, for example, where new clients of sheltered
housing appeared. This, together with many of the uncertainties regarding the substitution function of home care,
has led to a call to shift the attention towards the targeting of home care to those most in need, whether or not
they may be at risk of institutionalisation. Studies of home care allocation (Jamieson, 1991) show that there is
scope for improvement of allocation criteria and practices. How far improved techniques of assessment can
identify those most in need is debatable. Furthermore, the question of whose needs should be given priority in
service allocation is not a technical one. As Kemper and colleagues conclude, “it is primarily an issue of equity:
Who deserves the limited community care that society can pay for?” (1987, p. 97). Another question could be
added to this: How much community - and other - care is society willing to pay for?
Clearly societies would vary in their answers to such questions. But these possible variations are not at all
clear, because the questions are rarely addressed in any coherent and consistent way. Changes in patterns of
service provision are taking place, more as a result of cash limits than as a result of any debate about what levels
of provision are acceptable from the point of view of older people and their relatives. Changes in Sweden, for
example, whereby the reduction of institutional places has not been offset by an equivalent increase in home care,
appear to be taking place without any explicit acknowledgement of the effect this may have on families. In
Britain, despite the “family orientation” of the present government, guidelines and regulations for provision are
vague and contradictory. For several years hospitals have been reducing the number of continuing care beds, but
without ensuring that such beds be replaced by community care places. This trend has intensified with the
changes in the financing of hospitals associated with the introduction of internal markets. National Health Service
guidelines stipulate that patients should not be transferred to private nursing homes against their will, yet this is
happening, on the grounds that, although the authorities have a duty to provide care, this has to be done “within
resources available”.
In short, as long as older people and their relatives are relatively powerless and as long as there is no open
debate about what constitutes an equitable distribution of resources, it will be possible to reduce or to keep down
the number of beds in hospitals and institutions without replacing them by any alternatives, and without therefore
worrying too much about the complexities of “substitution”.
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Rethinking, not replacing institutions
Although the popularity of ageing in place or community care policies is partly driven by economic
concerns, it also rests on a concern with the interests of older people which has roots in the de-institutionalisation
movement. Thus normalisation rather than substitution is another principle underlying community care policies.
Of the four countries described above, Danish policies are still very much driven by this principle. It would
clearly be meaningless to present Danish policies as a model for others to follow. Yet the radical effect of those
policies on the way in which care issues are conceived shows clearly what is entailed in normalisation. The
cornerstone is housing, and a conviction that both “institutions” and “home” are often unsuitable, and that the
whole distinction may be unnecessary. Danish policies differ from those of many other countries in their radical
and consistent nature. The focus on housing, through adaptations of people’s homes or the development of
various forms of sheltered housing, is found in most countries, but in a more sporadic manner (see Tinker, 1994).
Interestingly, among the few cases cited by Weissert and colleagues (1988) where money was saved was
“Highland Heights”, a form of sheltered housing. Critics had dubbed it “institutionalisation by another name”,
but, as the authors point out, “this case does point to the important role played by the housing component”. They
go on to note that “many people would consider such sheltered housing a different kind of intervention than the
opportunity to remain in one’s own home that is generally implied by the notion of home care” (1988, p. 340).
This indeed is one of the problems: even if, in the long run, adequate housing could be an economical way of
replacing conventional institutions, in the short term it would require considerable investment to improve existing
housing stock and develop new and more suitable forms of housing. In most countries, therefore, the changes
would be gradual, and a total integration of all housing forms combined with integrated care packages is difficult
to imagine in systems where providers and funders are fragmented.
New forms of living based on these principles are developing in isolated instances and in the private sector.
In the United States and elsewhere life care communities have become popular among some of those who have
enough capital and income (van Mering and Neff, 1993). Although this is a growth area, it will not in the
foreseeable future be the solution for the majority of older people, who will not be able to afford it. Nor will they
necessarily wish to live in such artificially created communities. However, many of the ingredients of successful
ageing in place can be found there: living in a secure environment, with opportunities to be independent, to
participate actively in social life, and to receive care as needed without having to move residence.
If this is accepted as the basis for “ageing in place” policies, the focus of the debate should be on acceptable
forms of living, whether they are called “own home” or “nursing home”; and the focus should be on acceptable
forms of care and equitable distribution of care. This is not to say that issues of efficiency and substitution should
not continue to be part of the agenda. But the agenda for policy analysts should be based on a realistic
assessment, not only of the structural and technical impediments to change, but also of the degree to which there
is a political will to consider long-term care a matter for public policy.
In basing one’s discussion on a realistic assessment of what is likely to be possible, at least in the short and
medium term, it is tempting to conclude on a note of caution against going too far down the road of “ageing in
place”. Without a decent supply of home- and community-based services, and without opportunities for older
people and their carers to participate in normal social life, “ageing in place” could well be associated with
increasing neglect and isolation for too many people. If this is the case, life in an institution could well be a more
attractive option, one which should not be dismissed too readily as long as other solutions have not been put in
place.
.
77
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79
Chapter 5
ISSUES IN INFORMAL CARE
by
Julia Twigg
University of Kent, United Kingdom
Over the last decade informal care has emerged as an issue in public policy across the countries of the
OECD. Representative national data on caring are available from some but not all OECD countries (Green, 1988;
Stone et al., 1987; Jani-Le Bris, 1993a). The data present a fairly consistent picture of continued high involve
ment of families in caregiving. The chapter that follows first outlines the factors commonly thought to affect the
availability of informal care, and then explores the policy debates and responses raised by the issue.
The availability of informal care
Demographic change
Across the western world, declining fertility and, to a lesser degree, rising longevity have produced an
increasingly ageing population. Kosberg (1992) divides countries into three categories: adult (with 8-10 per cent
over age 65), such as Israel; mature (11-14 per cent), such as Australia, Greece, Japan, and the United States; and
aged (more than 15 per cent), such as Austria, Britain, and Sweden. Although different countries experience the
transition to a more aged population structure at different times and at different rates, and with some intervening
variables particular to their circumstances such as migration, the trend is a general one across the developed
world.
This trend has implications for policy in relation to pensions, to health and social care, and to family care.
The potential fiscal crisis in relation to the funding of pensions has received the greatest policy attention, but care
rather than pensions is the focus in this review. Much of the current concern over caring is driven by anxieties
over the rising costs of the health and social care of older people. The assumption is that their needs will have to
be met by a greater reliance on the family. However, the capacity of the family is itself under threat from
changing demographics. Lower fertility means fewer family members potentially available to give care
(Moroney, 1976, 1986).
Labour market participation of women
Women are more likely to be carers than men, and caring is often presented as an essentially female activity
(Graham, 1983; Hooyman, 1990; Waemess, 1984; Ungerson, 1987). Men are involved in caring, but in restricted
ways: mostly caring for their spouses or performing more distant tasks such as helping with transport or giving
financial advice (Brubaker and Brubaker, 1992; Arber and Gilbert, 1989; Arber and Ginn, 1990; Atkin, 1992).
Heavy-duty, intimate caring, particularly across the generations, tends to fall to women. Although this gendered
pattern emerges across the OECD countries, there is variation, reflecting cultural differences in the degree to
which gender roles are segregated both within marriage and between generations (Jani-Le Bris, 1993a; Maeda
and Shimizu, 1992).
The labour market participation of women has increased across the OECD countries in the postwar period,
though rates still vary. It is often assumed that involvement with the formal economy will limit the willingness
and capacity of women to take on care, further compounding the shrinkage of the potential pool through
81
Chapter 5
ISSUES IN INFORMAL CARE
by
Julia Twigg
University of Kent, United Kingdom
Over the last decade informal care has emerged as an issue in public policy across the countries of the
OECD. Representative national data on caring are available from some but not all OECD countries (Green, 1988;
Stone et al., 1987; Jani-Le Bris, 1993a). The data present a fairly consistent picture of continued high involve
ment of families in caregiving. The chapter that follows first outlines the factors commonly thought to affect the
availability of informal care, and then explores the policy debates and responses raised by the issue.
The availability of informal care
Demographic change
Across the western world, declining fertility and, to a lesser degree, rising longevity have produced an
increasingly ageing population. Kosberg (1992) divides countries into three categories: adult (with 8-10 per cent
over age 65), such as Israel; mature (11-14 per cent), such as Australia, Greece, Japan, and the United States; and
aged (more than 15 per cent), such as Austria, Britain, and Sweden. Although different countries experience the
transition to a more aged population structure at different times and at different rates, and with some intervening
variables particular to their circumstances such as migration, the trend is a general one across the developed
world.
This trend has implications for policy in relation to pensions, to health and social care, and to family care.
The potential fiscal crisis in relation to the funding of pensions has received the greatest policy attention, but care
rather than pensions is the focus in this review. Much of the current concern over caring is driven by anxieties
over the rising costs of the health and social care of older people. The assumption is that their needs will have to
be met by a greater reliance on the family. However, the capacity of the family is itself under threat from
changing demographics. Lower fertility means fewer family members potentially available to give care
(Moroney, 1976, 1986).
Labour market participation of women
Women are more likely to be carers than men, and caring is often presented as an essentially female activity
(Graham, 1983; Hooyman, 1990; Waemess, 1984; Ungerson, 1987). Men are involved in caring, but in restricted
ways: mostly caring for their spouses or performing more distant tasks such as helping with transport or giving
financial advice (Brubaker and Brubaker, 1992; Arber and Gilbert, 1989; Arber and Ginn, 1990; Atkin, 1992).
Heavy-duty, intimate caring, particularly across the generations, tends to fall to women. Although this gendered
pattern emerges across the OECD countries, there is variation, reflecting cultural differences in the degree to
which gender roles are segregated both within marriage and between generations (Jani-Le Bris, 1993a; Maeda
and Shimizu, 1992).
The labour market participation of women has increased across the OECD countries in the postwar period,
though rates still vary. It is often assumed that involvement with the formal economy will limit the willingness
and capacity of women to take on care, further compounding the shrinkage of the potential pool through
81
demographics. Empirical evidence on the subject is contradictory (Doty, 1986). Paid work can operate as a
legitimate reason for being unavailable to provide care (Finch and Mason, 1993); however, many women
combine working and caring, taking on a double burden. There is also evidence of women leaving the labour
market early in order to care for family members. Although the interaction of working and caring is complex, we
can perhaps assume that as paid work for women becomes increasingly normative and essential to families’
economic survival (particularly with the rising numbers of women who are heads of households), it will
increasingly affect decisions concerning care.
Household structure
The three-generation household has never been the norm in large parts of Europe, nor in the American and
Australasian countries that inherit these cultural traditions (Wenger, 1992; Brubaker and Brubaker, 1992). In
northwest Europe the historical pattern is particularly clear, with new households being formed on marriage and
few elderly people living with their children (Smith, 1984). Where intergenerational shared living occurs, it
usually reflects necessity rather than choice and is associated with low income (Doty, 1986). Greater affluence
among the old - and the young - has resulted in fewer shared households and a trend towards living alone. That
it reflects choice is borne out by attitude surveys which recurringly endorse the wishes of both older people and
their children for independence and what has been termed “intimacy at a distance” (Rosenmayer and Kockeis,
1963). In one Australian survey only 8 per cent of elderly people faced with the prospect of not being able to
manage chose the option of moving in with kin (McCallum and Howe, 1992).
Among OECD countries, Japan is an outlier in regard to household structure. Japanese family patterns are
different from those of the West, and about 60 per cent of older people still live with their children. This
proportion is declining, however, and it is estimated that by the beginning of the next century it will be only
53 per cent (Maeda and Shimizu, 1992).
Sharing a household is sometimes taken as a proxy for the availability of care, on the assumption that older
people living in the household will be cared for. This is probably correct insofar as they need care, though not all
older people sharing a household will be disabled and some will themselves be contributing to the care economy
of the household. Considerable amounts of care are provided between households. This can be the case even
where the elderly person is severely disabled, if the family lives nearby or has easy access. It is wrong to assume,
therefore, that an absence of shared households means an absence of caregiving.
There are, however, some features of caring that should alert us to the significance of household structure.
Caring in a shared household can be particularly stressful because it allows little relief. People looking after
someone with dementia or behavioural problems endure difficulties on a 24-hour basis. Even where the problems
are less acute, sharing a household can mean sharing the limitations imposed on the older person by his or her
disability. This is particularly significant for those who care for their spouses. As we shall see below, services are
often targeted away from shared households, with the result that some of the most highly stressed carers receive
the least support.
Family obligation
Earlier analysts, following a functionalist approach that emphasised the structural affinity between the
nuclear family and modem industrial capitalism, failed to see how far the family was still closely involved in the
life and care of its older members. Family support is still the primary source of help to frail older people. When
elderly people are not supported by family it is usually because they have none: up to 30 per cent of people over
age 65 in the United Kingdom are childless; 20 per cent in the United States and Australia (Wenger, 1992). What
Brody termed the “myth of abandonment” has been exploded (Doty, 1986); there is no evidence in the literature
of a slackening of family commitment (Qureshi and Walker, 1989; Finch, 1989; Finch and Mason, 1993).
The significant exception to this is Japan, where analysts, although recognising the continued significance of
family care, and indeed by implication its greater significance than in the West, regard it as under threat from
modem values. Western individualism is seen as eroding traditional family piety, while the social and demo
graphic changes consequent on industrialisation and urbanisation are seen as undermining the social and living
arrangements that made close family care possible, indeed mandatory (Maeda and Nakatani, 1992). These
changes have been relatively rapid, and it is not surprising that accounts from Japan should emphasise the impact
of modernisation, at the same time as western sociologists appear to be discounting it, at least in relation to its
effect on family obligation.
82
While recognising general trends, it is important to avoid too easy an assumption of convergence. Cultural
differences in regard to the family may still be significant. These are clearest in relation to Japan, which starts
from a radically different, non-westem culture and one that has retained many of its features through the process
of industrialisation. Northwest Europe, by contrast, developed at an early stage a family form whereby indepen
dent households were formed by each generation. Smith (1984) and Thomson (1991) both argue that this resulted
in the assumption that responsibility for the support of indigent older people fell in large measure on the
collectivity, and they contrast this pattern with that found historically in southeast Asian and Mediterranean
societies. Commentators from Greece and to some degree Italy also refer to cultural differences, emphasising the
nature of societies in which the family is the primary resource for individuals in all aspects of their lives
- economic, social, cultural - and family care of older people is just part of a larger network of mutual
opportunity and obligation rooted in the family (Mestheneos and Triantafillou, 1993).
"Welfare state traditions
There has been much interest recently in the differences between countries in regard to welfare state
traditions - differences that relate not only to stage of economic development but to political values and
assumptions. Esping-Andersen, whose work has been widely influential, identifies three regimes: 1) the “liberal”
welfare regime, which aims to encourage market provision and in which means-tested assistance, modest
universal transfers, or modest social insurance predominate, of which the archetypal examples are Australia,
Canada and the United States; 2) the conservative and “corporatist” regimes, where social insurance is tied to
employment status and the family is expected to meet many welfare functions, of which Austria, France,
Germany, and Italy are examples; and 3) the social democratic regime, associated mainly with Scandinavian
countries, in which the emphasis has been on achievement of an “equality of the highest standards”, such that
high-quality benefits and services have been made available on a universal and tax-funded basis. Others have
elaborated Esping-Andersen’s categories or developed parallel typologies (Langan and Ostner, 1991; Lewis,
1992; Leibfried, 1993). None of this work takes family care of older people as its starting point. Most focus on
income maintenance; and the models tend to be weaker on the service-based aspects of the welfare state that are
particularly significant in relation to family care.
Some attempts have however been made to explore the issue comparatively, notably by Jani-Le Bris (1993a
and b), Jamieson (1990, 1993) and Chamberlayne (1993), and in detailed national work (Johansson, 1991; Evers,
1993; Holstein el al., 1993; Twigg and Atkin, 1994). Jamieson suggests that there are significant differences
between the Danish, and by implication the Nordic tradition generally, and that of other European countries. In
Denmark there is no overriding expectation that families will provide care for elderly parents - this is seen as the
proper role of the state - and there are laws absolving younger generations from responsibility for their forebears.
Families are still close emotionally, but (with the exception of spouses) they are not the primary source of
physical care. Jani-Le Bris notes that of the countries of the European Union, it is only in Denmark that the
political debate does not centre around the fear of withdrawal of family care if formal support is given. In
Germany, by contrast, the family is regarded as the source of help of first recourse, and assistance is available
from the welfare state only where that has failed. The responsibility of the family is, furthermore, directly
encoded in statute.
The distinctiveness of the Nordic model is also reflected in its commitment to enabling women to participate
in the labour market through extensive entitlements to leave and care support. Scandinavian countries are more
willing to see caring as a form of work, and possibly as a form of waged work.
The policy issues
Certain tensions in how the field of informal care is conceptualised affect the way policy is structured.
“Support from the informal network" or “heavy-duty caring”?
A study of informal care might focus on either the informal network or heavy-duty carers. The first
encompasses not just physical help but also emotional support, visits, social contact. It looks at what families do
widely, and recognises that there is rarely a discrete point at which caring starts; rather, caring develops slowly
out of an earlier relationship, though marked by phases imposed by the onset of disability. This approach extends
the focus beyond the main carer and includes other members of the family more peripherally involved. It can
extend to the informal sector more generally, encompassing the involvement of friends - important for the morale
83
of many older people and often a preferred source of company - as well as neighbours. It recognises that
different people in the network give different sorts of help (Litwak and Kulis, 1983; Bulmer, 1986).
The second approach is focused more narrowly. It takes as its subject the heavy end of caring and the
situation of an individual who can clearly be identified as the carer. It recognises that responsibility for care
usually falls on one person. Far from being embedded in a network of support, caring is often an isolating
experience. Most of the literature that has explored the burdens of caring has done so within this second
perspective, focusing on heavy-duty carers and the difficulties they face.
Each approach has its advantages, and its own implications for policy. The first allows for an easier
disaggregation of the concept of family support. Once we recognise that families provide many different sorts of
help, we can make better sense of the debate concerning family obligation and the possible decline of commit
ment. The Scandinavian model does not represent abandonment by the family; rather it presents a different idea
of who should provide various sorts of help. Family support is not a unitary thing, either present or not. The
recognition of the involvement of wider kin, including grandchildren, also allows for an acknowledgement of the
ways in which older people continue to contribute to the life of the family: actively when younger, providing
child care (Alber, 1993), but also in less visible ways as they become more disabled. By setting the study of the
support of older people in the wider context of family relations, the approach is less prone to concentrate only on
the burdensome aspects of their existence.
From the perspective of policy-makers, however, this wider view is too diffuse. It is hard to plan for or
address the problems of a particular situation when it is conceived of in such a broad way. Policy needs to be
more narrowly focused; intervention across the board in relation to informal care is unlikely to be successful
(Gordon and Donald, 1993).
The emphasis on heavy-duty carers also reflects assumptions about costs to the state, for implicit in it is a
belief that these are inputs of sufficient significance and that, were they not provided by a carer, they would have
to be provided by the state in the form of an institution or otherwise heavy commitment of services. This does not
apply to the inputs of the informal sector conceived more generally.
Finally, the narrower focus in its emphasis on the primary carer allows for the recognition that carers may
have interests in their own right and that society or the state has obligations to them that parallel its obligations to
the cared-for person. This question of moral responsibility tends to be diffused or lost when the subject is the
informal sector as a whole.
“Disincentives” or “supports” for care?
Some policy-makers and analysts have voiced concern that welfare services to older people may introduce a
disincentive to care. This view embodies a number of underlying assumptions:
- that the support of older people is the responsibility of their families and any erosion of this principle is
wrong morally and politically;
- that the primary determinant of people’s involvement with their elderly relatives is the push/pull of
incentives, particularly financial incentives;
- that family care needs to be enforced by the lack of any alternatives.
Another approach presents the issue in terms of supporting rather than substituting for care. It too embodies
assumptions:
- that people’s involvement in care derives from their social relations;
- that social relations are long in genesis and exist prior to the influences of public policy;
- that support for older people can properly be provided from a variety of sources, formal and informal;
- that service support should both support care and enable choice.
In general the literature on caring reflects the second view both politically and empirically. Services do not
appear to drive out family care; rather they complement and augment its involvement.
Costs to the state or the interests of carers and disabled people?
The third tension in how we conceptualise the subject concerns whose interests matter: those of the state or
those of carers and disabled people. Much of the policy debate around family care focuses on the interests of the
state and anxieties over public costs. Even where the debate does encompass the burdens and difficulties facing
84
carers, it tends to do so on an instrumental basis, seeing support for carers only as a means to an end, that of
supporting older people, thus presenting it as a cost-effective form of intervention.
This instrumental approach has been a powerful motive in the growing inclusion of carers in service
planning. But is it an adequate response? Do we need to recognise the interests of carers in themselves and not
simply as a means to an end?
There are two justifications for recognizing the interests of carers. First, caring has consequences for the
lives of carers, imposing costs both literal and metaphorical. There is a large literature now on the subject of carer
burden that outlines these costs (Parker, 1990a, 1992; Sinclair et al., 1990; Zarit, 1989). While not wishing to see
caring only in terms of burden, it is important to give weight to these negative aspects. How far are we willing as
societies to recognise that certain burdens are beyond the acceptable and deserve to be alleviated of themselves
and not simply for instrumental reasons?
Second, carers are bound into family relationships that mean that they cannot simply give up when the
balance of interest turns against continuing. Carers often care against their own interest. To regard them as subject
to a form of rational calculation of costs and benefits whereby they give up caring once the former outweigh the
latter is to miss the nature of the ties that bind them. It is because of these ties, I would suggest, that public
agencies have a moral as opposed to simply instrumental relationship with them. Carers present moral responsi
bilities to the state precisely because they cannot be assumed to pursue their interests in a straightforward way.
For these two reasons - the extreme nature of some of the burdens and the character of obligation - the
needs and interests of carers need to be incorporated into the policy debate. In policy terms this means accepting
that costs to the state are not the only focus; that the service system cannot be run solely on the principle of
supporting only those cases where the carer is about to give up; and finally that there may be occasions when it is
proper to recognise that the time has come for care to end.
The disability critique
Just as the policy debate has often neglected the interests of carers in its emphasis on costs to the state, so too
has it sometimes neglected the interests of the cared-for person. The disability movement, which has its origins in
the United States but is increasingly influential across the Anglo-Saxon world, presents a critique that emphasises
the ways in which disability is socially constructed - the product not of impairment but of a disabling
environment and oppressive social assumptions. The social creation of disability and of caring are seen as linked:
without disability, there is no need for care. Out of these perceptions has developed a critique of the debate on
informal care that argues that policy should not endorse dependence through an emphasis on supporting carers
but should underwrite the independence of the disabled people they “care” for (Oliver, 1990; Morris, 1991).
People with disabilities should be able to have personal and family relationships, but these should not be made
the basis for caring. The recent emphasis on the needs of carers, in this view, diverts attention and resources from
the real issue: the support of disabled people.
The disability critique was formulated largely with the interests of younger disabled people in mind, but it
has implications for older people also. As we have seen, many, indeed most, older people value their indepen
dence. They may look for social support from their families but not necessarily wish to rely on them on a day-today basis or for intimate care and sometimes prefer the care of paid workers. If we are concerned with the
expression of choice for carers, perhaps we should also be so for disabled older people.
Certain provisos should, however, be made to the acceptance of the implications of the disability critique for
older people. First, not all disabled people - young or old - want to be free of reliance on their families. Some
disabled people want and indeed demand that they be cared for. Spouses in particular often regard care as part of
the mutual interdependence of marriage, and resist attempts to intrude upon it. In these cases caring continues to
have consequences for the carer, affecting their life and opportunities. Second, there are situations where only the
support of close relatives will enable the disabled older person to remain at home. This applies in particular to
cases of dementia, where transcending the need for a carer is an unrealistic aspiration and one contrary to the
interests of the disabled person.
The dual focus of caring
As we have seen, there are good reasons to recognise and incorporate the needs and choices of both the carer
and the cared-for person. These separate needs have, however, to be placed in the context of the relationship; and
the fact that caring takes place in a relationship imposes on policy an inescapable duality of focus. We cannot
concentrate exclusively on one side.
85
To a large degree carer and cared-for have the same interests. But sometimes the carer and the cared-for
person have different wishes and the interests of one may be pursued only to the detriment of the other. Respite
services provide a clear example of these dilemmas: the cared-for person is often reluctant to go into respite, and
the carer knows that respite may produce a deterioration, and yet the carer needs a break and may, indeed,
collapse if one is not provided. Carers can also fear that the experience of relief may weaken their resolve to
continue. Respite is an important service for carers, though a difficult one for these reasons (Twigg et al., 1990;
Twigg and Atkin, 1994).
The tensions around this dual focus have implications for policy, raising concrete issues around the question
of who is properly to be considered the subject of the welfare intervention. In terms of benefit support, who is to
receive the benefit: the disabled person or the carer? If we accept the disability critique, we should favour routing
all monies through the hands of the disabled person. This might, however, result in the exclusion of the carer
from any form of support. Whose needs should form the basis of an assessment: the disabled person’s or the
career’s? Service-based systems may be able to incorporate both and balance them to some degree, but this is
harder for insurance- or benefit-based forms of help.
Finally, should all help to the disabled person be regarded as a form of help to the carer? There is an obvious
sense in which it is so: anything that improves the independence of the disabled person helps the carer, and
assistance given by others does not have to be given by the carer. But this point of view rests on an assumption
that carers are there to meet all shortfalls and that they represent, as it were, the bottom line of care and
responsibility. This is often the case, but it may not always be the right assumption to make.
There is no simple or single answer to these questions. Different welfare systems and different parts of each
system will adopt different solutions depending on how they choose to perceive carers. In earlier work I have
proposed a typology of such frameworks in the form of four models or ideal types of the relationship between
carers and welfare agencies: carers as resources, as co-workers, as co-clients, and superseded carers (Twigg,
1989, 1993b).
Policy responses
Financial measures
Some countries support caring through the tax system. In Japan, for example, taxpayers supporting someone
over age 70 receive a credit, which is larger where the person is severely impaired (Maeda and Nakatani, 1992);
in the United States families can obtain tax relief for expenditure incurred in caring (Doty, 1986). The use of tax
credits presents some problems. Doty suggests that families rarely pay out large sums on care. Most of their costs
relate to personal time or stress; and although values can be imputed to these costs, tax policies do not in general
recognise them. Tax credits are usually across-the-board and rarely large; as such they do little to reflect the real
or the individual costs of care. Credits favour those who pay tax, whereas many carers are too poor to do so. They
also favour the rich, who may pay higher rates of tax and who can afford to pay tax advisors (Doty, 1986).
The second option is a benefit for carers, of which the Invalid Care Allowance (ICA) in the United Kingdom
and the Carer’s Allowance in Ireland are the main examples. ICA is available to carers of working age who give
more than 35 hours of care per week and who are wholly or largely out of the labour market (McLaughlin, 1991).
Overlaps with other benefits and the exclusion of those over working age mean that relatively few carers of older
people receive it. The Carers Allowance in Ireland is available to carers who live with, and provide care to, a
pensioner. Since it is means-tested, few married women receive it unless their husbands are unemployed or on
very low wages (Glendinning and McLaughlin, 1993).
Such benefits present certain problems. If they are to be seen as compensation for being out of the labour
market, they are rarely paid at a sufficient level to achieve it, and certainly never reflect the lost opportunity costs.
If the benefit is to be seen in terms of a reward - a token compensation for the burdens of caring - its limited
application raises questions of equity. In particular the employment emphasis excludes one of the most significant
groups of carers: those of pensionable age.
Sweden and parts of the United States provide for payment to carers in recognition of their work (Glendin
ning and McLaughlin, 1993). Concern has been expressed that payment will affect the relationship in undesirable
ways; that monitoring carer involvement creates a bureaucratic nightmare and an undesirable intrusion into
private life; and that such payments are unnecessary. In practice payments are discretionary and usually either
part of a package of income support or made on the understanding that the person would otherwise be on welfare.
86
Service-based forms of support
Service support for carers falls into four broad categories: in-home assistance, respite services, advice and
support for carers, and sendees provided for the cared-for person. Work evaluating the effectiveness of the first
three is reviewed in Twigg et al. (1990), Sinclair et al. (1990), Twigg (1992), and Leat (1992).
In-home assistance covers a range of help with housework, with personal care, and with nursing tasks. In
some countries such help is provided as part of medically based care; in others it is more directly located within a
social care system (for this shifting boundary in the European Union see Alber, 1993). In most cases help is
provided to the older person who is regarded as the client, though with some understanding of how it may assist
the carer.
Respite services can take a variety of forms. Any time away from the cared-for person - particularly where
the carer shares a household - can be regarded as respite. Day respite is provided by day centres or day hospitals,
though it can also be provided in more flexible forms through the use of in-home care attendants. Over-night
respite is sometimes offered in hospital when there is a vacant bed, though such acute-care settings are usually
less satisfactory than settings designed to provide respite. Respite is particularly valued in relation to dementia,
though its use is sometimes associated with feelings of guilt, anxieties over abandonment, and concern over
deterioration. For those under severe pressure it can be useful, though it may only delay and not prevent
institutionalisation.
Advice and support to the carer is a diffuse area covering emotional support, advice, and training. Such help
can come from a variety of sources: from individual service practitioners, often as a by-product of other contact;
from advice centres or help lines; and from carer associations. Carer support groups have proved an increasingly
popular and relatively low-cost response. Support groups are most successful when they allow personal sharing
of experiences; a purely informational format is less effective.
Carers are rarely the focus of intervention in their own right; they are largely assisted by mainstream
services provided for the cared-for person. It is difficult to separate out distinctive services for carers; responses
to carers are embedded in those of the service system in general. The issue therefore is how far and in what ways
the needs of carers are incorporated into the decisions of service providers. There has been little evaluative work
in relation to this fourth area, though its significance is great.
Money or services?
Service support for carers is not always something separate from financial support. In many systems services
are provided through payment or reimbursement. This can apply to the carer as well as to the cared-for person. In
Germany, for example, respite is available in the form of a holiday care allowance which funds a substitute carer
for a period of up to four weeks a year (Glendinning and McLaughlin, 1993). Differences in the balance of cash
and care reflect differences in the structure of welfare systems. In some countries recipients are offered a choice
of either money or services. In Germany, again, the care allowance for severely disabled people provides either a
cash payment or reimbursement of service costs, with the cash payment set at a lower level than cost reimburse
ment (.ibid.). Similar choices are available within the Israeli system (Habib and Windmiller, 1992).
The debates around the merits of in-kind services as opposed to payments raise larger questions than just
those relating to carers. Giving money directly to disabled and older people to purchase care of their choice is in
tune with current ideas of user empowerment, though it also draws on older concepts of entitlement and
citizenship. Problems can arise where the older person is very frail or confused and where direct provision of
services may be more appropriate. Money purchase systems tend to be associated with insurance- or benefit-based
approaches in which the categories of eligibility are inevitably broader and cruder than is the case where support
is negotiated through individual assessment for in-kind services. These tensions were reflected in the Israeli
debates around the 1988 long-term-care reforms; it was argued that a financial entitlement approach would mean
more recipients but at lower sums, whereas a system based on discretion would allow for larger amounts to be
targeted on the needier recipients (Habib and Windmiller, 1992). Finally, it is easier to control and cap the budget
where it is service- rather than insurance-based, as the history of the British national health service makes plain.
In relation to carers, debates about payment raise again the question of the dual focus. Payment approaches
are nearly always based around the disabilities of the older person and rarely encompass directly the difficulties
and burdens experienced by the carer. The needs of the carer are more likely to be acknowledged in a service
based approach where discretionary assessment can reflect the duality of interests and balance the needs of the
two parties. Money provided to the disabled person may not find its way to the carer. Some disabled people are
understandably reluctant to regard themselves as a burden to their family, particularly their spouses. Glendinning
(1992) has drawn attention to some of the complexities entailed in the distribution of resources within caring
households.
87
Tensions around the provision of money or services also raise perennial questions of substitution and
reward. In the Israeli debates, those favouring cash benefits to older people saw them as fairer to families who did
provide care. Those favouring services argued that most of the variation in support related to family capacity, not
family willingness (Habib and Windmiller, 1992).
Targeting services
Most sendees are targeted on those who live alone and who are unsupported. In some systems this is overt.
In Japan, for example, in-house support is available only to those who live alone — a minority among older
people — or are bedridden (Gibson, 1992); in Germany help in the home can be provided by insurance only where >
there is no relative available (Glendinning and McLaughlin, 1993). In Britain the principle is less clear-cut: the
home care service is potentially available on a flexible basis and in recent years, under the impact of heightened
debate about carers, has included support of family carers among its aims; however, because of the scarcity of
resources, most home care is still targeted on those who live alone (Bebbington and Davies, 1993). This has
particularly important consequences for carers who share a household with someone with dementia, resulting in a
pattern, Levin and her colleagues argue, in which those carers who face the greatest difficulties and the most
unremitting stress are the least likely to receive support (Levin et al., 1985, 1989).
Case management systems, with their closer targeting and emphasis on budgets, are sometimes presented as
inimical to the carers (Parker, 1990£>; Challis and Davies, 1991). However, it is possible to incorporate the
interests of carers into a case management system if that is made an explicit aim (Twigg, 1993b), as the example
of the Home and Community Care Programme (HACC) in Australia shows, where carers were specifically
identified among those to be targeted (Howe et al., 1990; McCallum and Howe, 1992).
Finally, should services target their resources narrowly on those carers who are on the brink of giving up or
of collapse, and away from those who are merely distressed but likely to continue? The logic of the instrumental
argument would support such a view, seeing it as maximising the cost-effectiveness of intervention. Research in
Britain suggests that service personnel are reluctant to endorse such an approach (Twigg and Atkin, 1994).
Employment-related measures
Combining working and caring can be difficult. Though women are more likely than men to give up paid
work in order to care, they may find it easier to obtain part-time work. Such work is, however, rarely well paid.
Work is important for carers not just for the income it provides but for self-esteem. Paid employment provides an
alternative focus in the carer’s life and a form of respite. The psychological benefits of work apply as much to
women as to men. Helping carers to remain in employment has also to be set in the context of the larger debate
concerning the reconciliation of work and family responsibilities in advanced industrial societies (European
Commission, 1993).
Measures to support employment divide into those provided by employers and those provided by the state.
Examples of employer-provided schemes are flex-time to allow for the demands of caring, unpaid leave to ease
carers over periods of crisis, and guaranteed re-employment after longer periods of absence, sometimes with
support provided in the interim to maintain confidence and skills. Some companies have set up employee advice
services or facilitated work-based carer support groups. In a small number of cases employers have either paid for
support services or provided work-based facilities (Laczko and Noden, 1992; Hoskins, 1993; Naegele and
Reichert, 1993). Most examples come from the United States; and they tend to be confined to certain sorts of
enterprise: those with high levels of female labour and complex internal systems with high training costs. They
also tend to be associated with prosperous blue-chip corporations with reputations for ethical practices. Such
schemes are not found in secondary labour markets, where many women are employed. The interest of employers
in such programmes is sensitive to the state of the labour market, and in the United Kingdom concern with the
issue has waxed and waned in line with the economy. The global trend towards the fragmentation of labour and
non-standard forms of work is likely to undermine any trend towards such provision, except in certain employ
ment niches, unless governments and supragovemmental organisations such as the European Union make such
schemes mandatory.
At the governmental level, help with employment tends to be provided through the benefit system; though
the interaction of employment and benefits makes it harder rather than easier for carers to combine working and
caring. In Sweden the state provides for care leave in the case of those nursing a severely ill adult, as an extension
of earlier provision for sick children. Some countries, for example the United Kingdom and Germany, provide
social security credits when the carer is out of the labour market. These are particularly important where pensions
and other benefits are provided on a social insurance basis. Heavy reliance on private insurance which does not
allow for such socially based credits can leave carers particularly vulnerable financially.
88
Conclusion
Carers are now recognised as the bedrock of care for older people across the countries of the OECD. As
such their interests are increasingly drawn into the larger debate concerning the welfare state and the future of the
long-term care of older people. How they are to be incorporated into that debate remains a matter of contention.
As we have seen, carers pose a series of dilemmas for policy-makers. How they and their interests should be
conceptualised remains open to debate. It is a debate that few countries can afford to ignore.
89
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C<TtY) H 4 3-
WORLD HEALTH ORGANIZATION
STUDY GROUP
HOME-BASED AND LONG-TERM CARE
Ma’ale Hahamisha, Israel
§
5-10 December 1999
“HEALTH CARE IS HOMEWARD BOUND”
IVor/d Health
The Magazine of the World Health Organization
47th Year, No. 4, July-August 1994
LTH/HSC/SG/99/3
HE/WH
THE MAGAZINE OF THE WORLD HEALTH ORGANIZATION
In this issue
Home core in on aging world
3
Cover: WHO/Marilu Halomandoris
Knight Steel & Hussein Gezairy
The "greying" of the nations
4
Ghada Hafez
An aging world population
6
Kevin G. Kinsella
Towards a healthier, longer lifespan
7
Gene H. Stollerman
Home core for the disabled elderly
10
Judy Briggs
Rehabilitation in the community
12
page 24
Naomi Rumono
"High Tech" home care
13
Mary Suther
"That nurse-troublemaker"
15
Barbara Phillips
Health care moves to the home
16
Knight Steel & Henk Tjassing
Does home care save money?
18
Michael Sorochan & B. Lynn Beattie
The challenge of AIDS home care
20
Sandro Anderson & Noerine Kaleebo
Adding life to years
23
S. 0. Gokhale & Chandra Dave
Researching the health of the elderly
26
Stefania Maggi
Sweden's Servicehouse concept
28
Britta Asplund 8, Ruth Bonito
Community Action
Care of the elderly -
a community health objective
page 21
30
Prosper Mihindou-Ngoma
WHO in action
Risk-free beaches
31
BentFenger
World Health ■ 47th Year, No. 4,
July-August 1994
IX ISSN 0043-8502
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for subscriptions see older form on page 31.
The National Association for Home Care for the United
Slates (Mr Vol Halomandoris, President) has kindly
contributed the resources to provide colour pages in
this issue.
page 5
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3
Home care in an aging world
ne of the formidable chal
lenges in the approaching
century is to provide health
care to the rapidly increasing num
bers of elderly throughout the world.
While the developed countries are
beginning to take a series of mea
sures to respond to the economic,
social and health care issues of this
transition, the developing countries
have yet to assess the magnitude of
the impact of these changes. A
decade or so into the future, 10-12%
of the total population will be 60
years old and over. In only six years
time there will be 600 million elderly
individuals, of which two out of three
will reside in the developing world.
What worries planners most is that a
majority of the elderly will be eco
nomically non-productive, and many
will be socially isolated and at risk of
unnecessary and even permanent
disability.
Today there are many developing
countries where the primary health
care system is far from being able to
achieve the goal of health for all, in
spite of very substantial efforts
having been made during the last two
decades. Economic pressure has
forced many governments to make
adjustments in national planning
among which unfortunately the
social sectors, health and education,
are so often the victims. Primary
health care is the only available
means to serve the majority of the
elderly population in the developing
world, but there is often no opera
tional component targeted to the
needs of the elderly. Most developing
countries should therefore begin by
including health care of the elderly
Dr Knight Steel, Director-Cenerol of the f/orfrf Organization for Care
in the Home and Hospice.
Dr Hussein Gezairy, Director of the World Health Organization's
Regional Office for the Eastern Mediterranean.
within their health protection and
promotion programmes for the gen
eral population.
The prevailing cultural norm in
most countries in all regions of the
world is that parents and sometimes
grandparents are looked after at
home by their grown children. Most
families, in both the developed and
developing world, are more than
willing to care for their elderly mem
bers to the limits of their abilities, but
they too need support. However, the
extended family system is breaking
down in several countries with the
result that many elders are finding it
difficult to obtain home care. Day
care centres for the elderly and com
munity care through informal carers
clearly have potential. Efforts in
many developed countries to main
tain healthy elderly persons in the
workplace will go a long way to
providing economic independence,
as will old-age pensions and similar
subsidies. In addition, families must
have support from the national health
care system, in collaboration with
nongovernmental organizations
wherever they are active, and social
support from the community to
enable the elderly to remain socially
active as long as possible. Although
specialized hospital care will be
required at times, the strategy should
always be to bring health care to the
individual homes.
This issue of World Health fo
cuses on compassionate home care
which is loving as well as technolog
ically sophisticated. It highlights the
policy implications of home care as
governments consider costs and
efficiencies of service. There will be
a need for curricular changes for all
types of professionals who will
provide services in the home and
education and support for families, as
well as more and better research in
the home setting. These efforts need
to be directed to ways of providing
better services, and the most effec
tive way to prevent diseases that
preclude us from achieving the
highest quality of life for the longest
possible duration. ■
4
World Health ■ 47th Year, No. 4, July—August 1994
The "greying" @tf the nations
Ghada Hafez
Developing countries in
general hove not yet felt the
impact of the rapidly
increasing proportion of
elderly people in their
populations. Where will all
these elderly live and who
will care for them?
he global demographic transi
tion commonly known as the
“greying” of nations is causing
considerable concern - both nation
ally and internationally. It is a daunt
ing prospect for any country to have
to maintain aged individuals consti
tuting 15-25% of its total population,
many of whom will be economically
non-productive and physically frail
with multiple disabilities and handi
caps, due to a number of chronic
clinical disorders.
The countries of Western Europe
and North America have felt the
impact of this transition for decades
and have adopted many measures to
meet the major challenges ahead,
especially economic and healthrelated ones. The developing coun
tries in general have not yet truly felt
this impact, and many are unpre
pared and even unaware of this
demographic phenomenon. The
WHO Regional Offices for Africa,
the Americas, the Eastern
Mediterranean, South-East Asia and
the Western Pacific have been alert
ing countries to this “writing on the
wall”. They have developed a strat
egy covering the period 1992 to
The gloomy prospect of one
economically productive person
maintaining three or four non-economically productive individuals is a
matter of considerable concern.
Where will the elderly live and who
will care for them?
Break-up of families
The proportion of elderly in the populations of
developing countries is rising sharply, posing
new challenges for health services.
2001 to assist countries to respond to
the challenges.
It is ironic that when the aspira
tions of every country to ensure a
long life-expectancy for every
individual are going to be achieved,
there is now global concern about
how to maintain the quality of life
for this ever-increasing elderly
population. In the last century, one
could have counted the number of
centenarians in a given country on
the fingers of one hand. Today,
Japan - with the highest life ex
pectancy - has more than 3000
centenarians.
In most if not all developing coun
tries the prevailing practice, based
on long-standing cultural traditions,
is to maintain aged parents at home.
But in recent years, the large-scale
migration of young adults to urban
areas and even to richer countries,
and the gradual breaking up of
extended families, have to a large
extent been responsible for the
elderly population being left uncared
for. Homes for the aged and similar
institutions in some big cities may
cater to those elderly whose affluent
grown children bear the expenses;
but this covers only a very small
percentage of the older population.
There will increasingly be a high
proportion of elderly people who
have no one to depend upon and who
have to be taken care of in homes
The tradition of younger generations being able Io maintain their aged parents is gradually
breaking down throughout the world.
World Health ■ 47th Year, No. 4, J-jy—August 1994
5
run as charitable institutions by
nongovernmental organizations
(NGOs) and religious bodies.
Meeting health needs
Care of the elderly - strategy
for the future
Financial and technical constraints
prevent most developing countries
from undertaking organized pro
grammes to fully address the eco
nomic and health care issues of the
elderly. The providing of home care,
the obvious choice for a vast majority
of families in the developing world,
will face considerable obstacles in
the coming years. Properly super
vised old-age homes of appropriate
standard constitute an expensive
venture, to which the elderly cannot
hope to contribute sufficiently.
Even in the developed countries
making widespread use of such
chronic institutions or keeping those
with long-standing clinical disorders
in hospitals, occupying scarce hospi
tal beds for long periods, cannot be
the solution.
Surveys carried out in the coun
tries of the Eastern Mediterranean
Region have confirmed that most
people consider the home to be the
place where the elderly should live
and where they are likely to derive
the greatest emotional satisfaction.
Life-expectancy at birth is becoming longer in
most countries. How are they Io maintain and
care for their increasingly aging populations?
Grandfather and child. Healthy old people
have a major contribution Io make Io the health
and development of their community.
However, assistance will have to be
provided to families. Various forms
of support will be needed:
Q financial, through old-age
pensions;
□ subsidized food, transport, medi
cines and other necessities;
Q where families have no space,
subsidized accommodation for
the elderly (provided by the
government) with families
responsible for their care;
■ free (or heavily subsidized)
spectacles, hearing aids and
equipment for mobility (pro
vided by the government, NGOs
and religious bodies);
■ day-care centres for the aged
(established by NGOs and reli
gious bodies), with free meals
when possible;
■ well-prepared mass media
messages to train “carers” in
individual families;
■ messages and advice to the
elderly on hazards facing them
and how to overcome them;
■ special efforts by the social wel
fare sector and by NGOs to use
healthy elderly people in various
types of social, community and
health development work.
Most diseases and disabilities in the
elderly are of a chronic nature, need
ing home-based care. Primary or
community health care workers, in
the towns or countryside, should bear
the major responsibility for provid
ing health care to the elderly, and
especially for “training” them in how
to take care of themselves. The WHO
Eastern Mediterranean Regional
Office is in the process of publishing
a manual to help in training primary
health care workers in this work.
By and large, home care is the
only solution for most developing
countries, but this can only be made
possible if the government, NGOs,
religious bodies and the people
themselves take action now as equal
partners. 0
Dr Ghada Hafez is Regional Adviser on Family
Health and Responsible Officer, Health of the
Elderly Programme, in the World Health
Organization Regional Office for the Eastern
Mediterranean, P.O. Box 1517, Alexandria
21511, Egypt.
The frail and elderly have special health
requirements that must not be ignored.
6
World Health ■ 47lhYeof, No. 4, Juiy—August 1994
An aging world population
Kevin G. Kinsella
Does longer life translate into
healthier life, or are individuals
spending a greater portion of
their later years with
disabilities, mental disorders,
and disease?
In view of the rapid aging of their populations, developing countries are finding it necessary to
restructure their health services.
very month, the present world
total of 360 million persons
aged 65 and over increases by
800 000 individuals. Three decades
from now, the world’s elderly are
projected to number 850 million.
This unprecedented growth of the
older population has already changed
the social and political landscape in
industrialized nations, and will
increasingly bear upon policies and
programmes throughout the develop
ing world. Although issues of health
care policy and reform vary enor
mously among and within continents,
most national decisions in the health
arena are already - or soon will be affected by the momentum of popu
lation aging.
The term “demographic transi
tion” refers to a gradual process
whereby societies move from high
rates of fertility and mortality to low
rates of fertility and mortality. For
example, European and North
American societies are growing
older, as a result of persistent low
fertility and increasing life expect
ancy. Sweden now has the world’s
“oldest” population, with more than
18% of its citizens aged 65 or over.
What some readers of World
Health may not realize is that a
majority of today’s growth in the
numbers of elderly is occurring in
developing countries. The speed of
aging is likewise more rapid there
than in the industrialized world;
while it took 115 years for the pro
portion of elderly to rise from 7% to
14% in France, the same change in
China will occur in fewer than 30
years. The high fertility rates that
prevailed in most developing coun
tries from 1950 until at least the early
1970s ensure that the ranks of the
elderly will continue to swell during
the next four decades.
Related to the demographic
transition is the epidemiological
transition. This concept refers to a
long-term change in major causes of
death, from infectious and acute
diseases on the one hand to chronic
and degenerative diseases on the
other. We know that the average
individual’s risk of becoming dis
abled rises with age. As entire popu
lations age, the societal prevalence of
disability is also likely to increase.
And as we live to higher and higher
ages, the debate is brewing: does
longer life translate into healthier
life, or are individuals spending a
greater portion of their later years
with disabilities, mental disorders,
and disease?
Further research is needed to
answer this question, but it appears
inevitable that the sheer force of
demographic change will compel
most countries to grapple with in
creased demand for health care.
Elderly populations themselves are
becoming older on average as the
growth rate of the “oldest old” (per
sons aged 80 and over) outpaces that
of the elderly in general. Because the
oldest old consume disproportionate
amounts of health care and long-term
services, provision of those services
will become more costly. Many
health systems today are being eco
nomically squeezed by the compet
ing desires to keep pace with a
growing elderly population and to
expand basic coverage to all seg
ments of society. Countries through
out the world are looking beyond
their borders for clues about restruc
turing their health systems, avoiding
primary reliance on institutional care,
and promoting family care and home
care for their aging populations. ■
Dr Kevin G. Kinsella is Head of the Aging
Studies Branch at the Center for International
Research, US Bureau of the Census,
Washington, DC 20233, USA.
7
World Health ■ 47th Year, No. 4, Ju\—August 1994
Towards a healthier, longer
lifespan
Gene H. Stollerman
Live well, eat well and be
positive. Those who have
survived to old age should be Prevention of disease
is by far the simplest
well informed about the many Immunization
and most cost-effective preventive
measure. Many good vaccines are
ways to prevent disease, to
available, but regrettably are not
maintain the quality of life,
given even when recommended by
experts. At least four vaccines are
and to extend their survival.
already recommended for the
11 of us would like to look
forward to a full measure of
life, with reasonable preserva
tion of its quality. At its end, we
hope for maximum prevention of
morbidity and minimal terminal
suffering. Progress towards these
goals in recent years has been im
pressive, and such good fortune
seems ever more achievable. Many
preventive medicine and health
maintenance initiatives, begun as
early in life as possible, can assist us
in this progress and all individuals especially those entering the older
years of their lives (and those caring
for them) - should seize these initia
tives. People should not depend on
current health care systems alone,
for the latter are too often geared
towards crisis and acute care in
hospitals where the high-tech fight
for extension of life is very expen
sive and often too late. Those who
have survived to old age should be
well informed about ways to extend
their survival.
elderly: influenza, pneumococcus,
tetanus and diphtheria. Patients
themselves should remind their
primary health care provider that
their vaccines may be due. Help
your doctor to help you by asking
what immunizations you may need.
Influenza vaccine requires an
annual injection in the autumn.
Don’t expect the vaccine to prevent
colds and other respiratory infec
tions that are not influenza but
merely imitate it. The vaccine is
very safe, has only mild side-effects
for the vast majority of persons and
is quite effective, but not totally so.
When protection is incomplete, the
infection is nonetheless usually
decreased in severity. The major
disadvantage of influenza vaccine is
its relatively brief protection period.
Pneumococcus vaccine needs to
be given once only, except in special
circumstances. Because pneumo
coccal pneumonia is primarily a
winter disease in temperate climates
and often comes in the wake of
influenza, elderly persons who have
not been immunized with pneumo
coccal vaccine should be reminded
to take it when they report for in
fluenza vaccination. Survival from
pneumococcal pneumonia is particu
larly difficult for the elderly, who
have less resistance to life-threaten-
Daily exercise helps Io maintain good health
and positive attitudes.
ing infections than do young adults
and are prone to post-infection
blood-clotting complications such as
stroke, myocardial infarction (heart
attacks) and pulmonary embolism
(lung clots).
Tetanus-diphtheria vaccine is
given routinely in childhood but
immunity wears off within ten years;
it therefore needs to be boosted
every decade. By old age, most
individuals will have lost or
markedly decreased their immunity
to tetanus and diphtheria if they have
not received a booster injection in
the past decade. Tetanus is always a
risk from wounds that are contami
nated with soil. Retaining immunity
to diphtheria requires just a tiny
8
World Health ■ 47th Year, No. 4, July-August 1994
amount of the vaccine, so it is usu
ally incorporated into the tetanus
vaccine that is used as a “booster”
once every ten years. Have you
received such a booster within the
past ten years?
Other hazards
The use of the highly effective new
vaccines for hepatitis B should be
considered on the basis of an indi
vidual assessment of risk. Universal
immunization of children with the
hepatitis B vaccine may eventually
make this a disease of the unimmu
nized elderly. Like smallpox and
measles, hepatitis B has the potential
to be eradicated by immunization,
provided the vaccine becomes one of
the routine childhood immuniza
tions. Let’s do it throughout the
world! Regular skin testing for
tuberculosis is another important
preventive measure, especially in the
elderly whose immune status to this
disease should be regularly updated
on their health record.
When seeing any health professional, it is
worthwhile to ask about me status of your
immunizations.
Healthy foods - your passport to a longer lifespan.
Eat wisely and take exercise
Another universal way of preventing
disease is a healthy diet. Even in the
most affluent countries, many of the
elderly are undernourished (not
enough food) or even malnourished
(unbalanced diet). The impact of
malnourishment on quality of life
and longevity is enormous and can
result in fatigue, insomnia, dimin
ished resistance to infection and
depression. Disease is often an
appetite killer, and so is reactive
depression, which haunts the elderly
for whom causes of depression
abound, such as bereavement or loss
of physical functions. Depression
and loneliness may cause weight
gain as well as loss; some people eat
for comfort or out of boredom, and
obesity may become a problem.
Adequate dental care and oral
hygiene is another factor in main
taining adequate nutrition.
At least one meal a day should be
in the company of others. Choose a
balanced diet, preferably one with
vegetable oils rather than animal fats
and one high in complex carbohy
drates such as pasta, potatoes, rice
and com but low in simple sugars
such as sweets and other confec
tions. Sufficient protein is found in
beans, cereals, fish and chicken. The
diet should bo supplemented by
generous amounts of green vegeta
bles and fresh fruit which provide an
adequate supply of vitamins. Foods
with high fibre, low cholesterol and
low salt are generally to be pre
ferred. To lose weight avoid fad
diets. A diet that cannot be sustained
indefinitely is virtually worthless
and may be harmful.
Don’t forget about a high fluid
intake! Water is one of the most
important components of good
nutrition and the best defence
against constipation, a very common
affliction of the elderly.
9
World Health ■ 47fr.Yeor, No. 4, July-August 1994
All older adults should be en
couraged to exercise within the
limits of their physical capacity and
on the advice of their physician in
order to avoid harm from over
enthusiasm. Lack of enthusiasm to
exercise is usually a bigger problem,
however, and it is often aggravated
by depression. Ironically, a major
treatment for depression is exercise!
A graduated exercise programme
can reduce symptoms of heart dis
ease, reduce bone loss associated
with aging and increase muscle mass
and strength as well. It can also
improve mental functioning, elevate
mood and contribute to an overall
sense of well-being. Simple walking
done regularly, especially with
companions, may be all the exercise
that is needed.
Be positive!
Positive attitudes may not be easy to
sustain in the face of chronic disease,
the death of friends and a decline of
physical and mental powers. One
powerful force for survival in the
face of adversity is commitment.
Even devotion to a pet has been
shown to increase survival! Join
with a group of persons in an activity
A positive altitude towards other people and society in general increases the quality of life.
you enjoy so that you can give as
well as get support.
Finally, consider the complica
tions that could arise from unwanted
and ineffectual care at the very end
of your life. Confront squarely the
issues of such management as you
would like for yourself. Discuss this
openly with your family, and nearest
and dearest friends. Select your
trusted agent (proxy) who has been
instructed by you to cany out your
wishes should you no longer be able
to do so. Write out and have wit
nessed a statement of what limita
tions you may wish to place, if any,
on your terminal care. The current
social, legal and medical climate in
the world is strongly in favour of a
high degree of patient autonomy,
and most physicians are ready to
support your choice, unless what
you desire is medically and/or
morally unreasonable. ■
Dr Gene H. Stollermon is Professor of
Medicine and Public Health at the Boston
University School of Medicine, Section of
Geriatrics, 720 Harrison Avenue, Boston,
MA 02116, USA.
Sharing mealtimes with others encourages sensible nutrition and keeps morale high.
10
World Health ■ 47th Year, No. 4, Job/—August 1994
Home care for the disabled
elderly
Judy Briggs
he occupational therapist has an
important role to play in the
provision of home care for
disabled older persons. Preserving
independence and improving func
tion are central to this approach. The
therapist consults with relatives and
friends in the old person’s life, build
ing up a picture of perceived needs
whether physical, emotional, social
or economic. What does he or she
want? How would they like to
achieve it? And with whom?
Together they then make a decision
about the maximum independence
achievable. “Enriched quality of
life” is the agreed goal. Stereotypes
of old age in modem society can
influence our expectations of each
other; society today is geared around
youth, giving it much power and
status. The therapist can help to
redress this imbalance.
Housebound old people experi
ence many physical problems - pain,
limited mobility or an increased
tendency to fall, with consequent
Demographic changes will
result in more home-based
very old people and fewer
"young elderly". It is from
these young elderly that the
carers of tomorrow will
emerge.
injury and even death. Restricted
movement of hips and shoulders
means that seats and beds may need
to be raised, and crockery and food
made more accessible.
Old age also diminishes the
senses. Hearing checks and aids
should be encouraged to prevent
increasing isolation; louder bells and
increased volumes on the telephone,
radio and television can help. Loss
of visual acuity is in itself frighten
ing, but therapists can recommend
many low-vision aids, especially for
use in the kitchen which is a dangerous area needing
good lighting.
Incontinence
brings humilia
tion and loss of
dignity which
may be allevi
ated simply by
the provision of
a commode or
referral to a
specialist. For
many activities
of daily living an
occupational
therapist can
recommend
devices, how
Therapists and family members can cooperate to enrich the quality of life
ever
small,
for the homebound elderly.
The homes of old disabled persons need to be
regularly checked Io remove unnecessary
hazards.
which may make the difference
between self-reliance or dependence.
In winter many old people suffer
from the cold, especially if their
income is low. The solution may be
to keep one warm room for living
and sleeping. A limited budget also
prevents the older person from using
“convenience foods” which are now
on the market; a dietitian can give
useful advice about a nutritious diet.
In general the old may suffer many
losses - hearing, sight, memory and
companions; the occupational thera
pist will try to address these con
comitants of old age.
Hazards in the home
Old people tend to live in some of the
worst housing, even though they are
the people most at risk. In making an
assessment, the therapist checks all
physical aspects of the home such as
11
World Health ■ 47rtl Year, So, 4, Ju’ty—Augist 1994
The carers of tomorrow will emerge from the
group of the 'young elderly'.
Solving problems is the ideal approach adopted by occupational therapists.
access, steps, ramps, internal and
external stairs, door widths, turning
circles for wheelchairs, and the
heights of chairs, beds and toilets.
Hazards exist in all homes, but when
an old disabled person is present it is
imperative to reduce risks to a mini
mum. The therapist watches for
trailing cables, overloaded electric
sockets and loose rugs.
As we have already seen, the
kitchen is the area of greatest hazard
because of the hot oven, gas taps and
scalding hot water. Add to this
unsteady hands and feet and failing
eyesight, and the problem is magni
fied. A sensitive assessment may
result in a decision to close the
kitchen and disconnect the gas
cooker in extreme circumstances.
the number of elderly persons
throughout the world, and urged the
active involvement of physical
therapists in developing services for
the elderly in policy and planning at
international, national and local
levels.
It is not uncommon for the carers
themselves to be elderly and to have
their own problems, in which case
the occupational therapist should be
sensitive to this in analysing the
situation. The care-givers may be
depressed by the seeming relentless
ness of their task and loss of free
dom or “personal space”, and they
may also have financial worries.
Carers often express feelings of
guilt about the quality of the care
they give. If the burden becomes
too great and the old person needs
residential care, then the carer may
be left with feelings of helplessness
or of being trapped. It is at this stage
that they need to know where to turn
for help.
A variety of resources are avail
able in different countries. They
may include homes run by the local
authority, day hospitals offering
multidisciplinary therapy, or disable
ment services centres. Rehabilita
tion in the community may be possi
ble through home visits by physio
therapists, occupational therapists,
speech therapists or district nurses as
well as the general practitioner.
Terminal and palliative care can be
provided through specialist nursing
homes and hospices.
Many societies are supported by
voluntary bodies, such as local
Role of physical therapists
Physical therapists too have an
increasing role to play in the care of
elderly persons. A report produced
by the World Confederation for
Physical Therapy (WCPT) in collab
oration with WHO showed that only
a small number of physical thera
pists had expertise in this area of
practice. Their education and train
ing did not seem to focus sufficiently
on the needs of this age group. So in
1992, at a meeting arranged by
WCPT at the International Institute
on Aging in Malta, plans were drawn
up to meet those needs. One result
was a position statement which
recognized the rapid escalation in
church groups, luncheon clubs,
“Age Concern”, self-help groups,
“Meals on Wheels” and women’s
societies. There are also specific
associations and societies caring for
sufferers from Alzheimer’s disease,
motor neuron disease and other ■
chronic diseases. There may be
various types of sheltered housing,
warden-assisted accommodation
and residential care. Any of these
options can become an attractive
alternative to old persons failing to
cope in their own home.
The problem-solving approach of
the occupational therapist can help
to check the deterioration of function
in old age, and so be life-enhancing.
Many countries will very soon face
serious health and social problems as
a result of the “greying” of society.
In England and Wales between the
years 1990 and 2000, for example,
the number of people aged 85 years
or over is projected to increase by
35%. At a time when the emphasis
is on community-based rather than
hospital-based care, these demo
graphic changes will result in more
home-based very old people and
relatively fewer “young elderly”.
However, it is from these young
elderly that the carers of tomorrow
will emerge. The occupational
therapist of the future can play an
important part in supporting the
carers as well as those who will need
care. ■
Mrs Judy Briggs is the Occupational Therapy
Services Manager al City Hospital, Hucknall
Road, Nottingham NG5 1PB, England.
12
World Health ■ 47th Yeor, No. 4, Jub/—August 1994
Rehabilitation in the
community
Naomi Ramano
ommunity-based rehabilitation
(CBR) programmes are in
principle multi-disability ori
ented and aim for joint multisectoral
action at the level of the community,
supported by an appropriate referral
and supervisory system. Each pro
gramme implies the transfer of skills
and knowledge of rehabilitation to
people with disabilities, their fami
lies and their communities. It em
powers disabled persons and
facilitates their social integration. It
is estimated that the CBR approach
meets the essential needs of 70-80%
of all disabled people in the commu
nity. The remaining 20-30% of the
needs have to be met at referral
levels, including institutions.
Community-based rehabilitation
programmes aim:
■ to promote awareness, selfreliance and responsibility for
rehabilitation in the community;
■ to build on local manpower
resources in the community,
including disabled persons, their
families and other community
members;
■ to encourage the use of simple
methods and techniques which
are acceptable, affordable and
appropriate to the local setting;
■ to use the existing local organiza
tions and infrastructure to deliver
services, especially primary
health care services, but also
labour and social services includ
ing the education system.
Families who take care of chil
dren or adults with disabilities often
face a lack of understanding about
This young woman, despite her disability, has sewn a child's dress with her feet
the disability as well as negative
attitudes within the community.
Because of heavy workloads, partic
ularly during planting or harvesting,
family members have little or no
time to spare to assist someone with
a disability. CBR addresses these
problems and gives support to fami
lies so that they can be active in a
rehabilitation process for a family
member with a disability. The CBR
programme may conduct public
meetings to raise awareness about
the causes of disability and the po
tential abilities of disabled people. It
trains community workers who visit
and advise disabled people and their
families, and it encourages support
from the community for those fami
lies. It also includes supervision from
district level rehabilitation workers
who visit homes where there are
problems which cannot be handled
by the community worker.
Achievements in Zimbabwe
A CBR programme in Gutu District
of Masvingo Province, Zimbabwe,
offers an example of what can be
achieved. Fifteen self-help projects
were started, and at the end of two
years a total of 1087 disabled persons
had been assessed:
- 900 were on training
programmes, and 316 of them
were making good progress;
- 68 had completed training and
were discharged as functional;
- 82 had achieved social integration
at home, within families and in
schools;
- 6 were able to get employment
locally;
- 500 had benefited from referral
services;
- 167 were receiving appropriate
aids. ■
Airs Naomi Rumano is a CBR Consultant
working in Harare. Her address is: 33 Hedsar
Drive, Borrowdale, Harare, Zimbabwe.
13
World Health ■ 47th Year, No 4, Ju!y-August 1994
"High tech" home care
Mary Sather
A staff member of The Visiting Nurse
Association of Texas examines a patient in her
home.
Home core has benefited from
high technology. Of course,
all "high tech" services are
ultimately designed to support
the human touch that home
health agencies provide.
echnology has dramatically
affected home care in three
major ways. First, improve
ments in technology have resulted in
the development of miniaturized and
user-friendly procedures and helpful
devices. Second, the availability of
technologically advanced equipment
has increased the need for profes
sional home care services for an
increasingly elderly and functionally
impaired population. Third, ad
vances in telecommunications and
information management have
promoted increased efficiency and
timeliness in the delivery of home
health services.
Let us consider what can be
achieved now and what may soon be
possible in “high tech” home care by
looking at The Visiting Nurse
Association of Texas (VNA) as an
example. VNA is a non-profit home
care agency serving the needs of a
population of about 4.5 million
persons. Its 1400 employees and
5000 volunteers minister daily to
more than 8000 individuals with a
wide variety of health and social
problems. Technology has made it
possible to provide a comprehensive
home care programme with new
clinical tools that may be used by a
nurse, physical therapist, occupa
tional therapist or speech pathologist
or, at times, by a trained family
member or patient.
Trained nurses are available 24
hours a day, seven days a week, to
supervise patients with continuous
intravenous drips. Blood products
and blood, a variety of chemothera
peutic agents, total parenteral nutri
tion, and whatever drugs are neces
sary to achieve control of pain can
be administered. Additionally, the
intravenous administration of antibi
otics, immune globulins, and agents
used in the treatment of viral and
fungal diseases can be routinely
overseen.
These therapies can be adminis
tered safely at home with simple,
portable infusion pumps that care
fully regulate the flow of medica
tions and chemicals. The procedures
can, in most cases, be taught to the
patient or family member, thereby
decreasing cost and increasing the
independence of the patient.
The care of the cardiac patient
has been greatly expanded over the
past decade and now routinely
includes cardiac monitoring via a
small hand-held device that records
either a two or twelve-lead electro
cardiogram. This information is
then transmitted over a telephone
'High touch' - the indispensable complement
of high technology care.
14
line to a central laboratory, where it
is printed and retransmitted by fax to
a physician who interprets it and
makes the necessary decisions. The
doctor can provide information to a
nurse for immediate initiation of
treatment if warranted. The tele
phone line can also be used to evalu
ate the functioning of a patient’s
pacemaker.
Increasingly, high-risk infants
can be cared for effectively in the
home environment. Apnoea moni
toring devices are able to detect
episodes of interrupted breathing and
sound an alarm when the infant is in
distress. Parents are taught emer
gency procedures to carry out until
professional help arrives. The
miniaturization of ventilators has
been a boon in keeping infants and
children out of institutions.
It goes without saying that com
puters have revolutionized the ad
ministrative functions of home care.
They have enabled the scheduling of
visits, the design of routes geograph
ically for delivery, the measurement
of productivity, and a more discrete
costing out of goods and services.
Fax machines too have improved the
accuracy and timeliness of orders
from physicians who oversee the
care of these patients. VNA now
uses over 500 fax machines; all
nurses and therapists have one at
home and can receive doctors’
World Heolth ■ 47lh Yeor, No. 4, July-August 1994
Deep heaf applied by ultrasound to decrease pain in arthritic joints.
orders accurately and on time with
out having to come to the office. On
this service the number of visits
increased by 14% after all providers
obtained fax machines.
Of course, all “high tech” ser
vices are ultimately designed to
support the human touch that home
health agencies provide. Home is
where we want to be when we are
This telraplegic patient - almost completely paralysed - communicates
with his family and health staff by means of a computer.
sick, and home is where we can
recover fastest if we have the proper
care. E3
Ms Mary Sulher is President and Chief
Executive Officer of The Visiting Nurse
Association of Texas, 1440 West
Mockingbird lane, Dallas, Texas 752474929, USA.
An infant cardiac patient has to be fed by tube.
World Health ■ 47th Year, No. 4, Jury—August 1994
15
"That nurse-troublemaker"
Barbara Phillips
isturbed by conditions she
found on New York’s Lower
East Side at the tum of the
century, Lillian Wald founded the
Visiting Nurse Service of New York
(VNS) in 1893. This innovation
marked the birth of public health
nursing in the United States. A social
reformer and registered nurse, Wald
also established New York’s first
public playground, the first school
study hall, and the first special
education class for the handicapped.
She lobbied successfully for school
lunches and for nurses in the public
schools. The powers-that-were called
her “that nurse-troublemaker”.
Today, under president and chief
executive officer Carol Raphael,
VNS is the largest non-profit
provider of home health care in the
United States, making more than two
million home visits a year. In 1993,
VNS provided more than US$
10 million in free care to the unin
sured and the indigent. .
VNS has nearly 5000 employees.
Nurses, home health aides, rehabili
tation therapists, psychiatrists, physi
cians, social workers and case
workers provide essential services to
tens of thousands of the most vulner
able New Yorkers, from newboms to
senior citizens (VNS serves 53 New
Yorkers who are at least 100 years
old), from HIV-infected children to
terminally ill patients seeking the
dignity and comfort of being cared
for at home.
VNS is noted for its innovative
programmes. Its First Steps
Programme provides comprehensive
services to substance-abusing women
who are pregnant or have very young
children. It delivers health care at
several public schools (with the
Children’s Aid Society), and its
paediatric asthma programme pre-
Nurses comforting an elderly patient in 1960 Serving the chronically ill elderly at home has
always been ana remains the major function of the Visiting Nurse Service of New York.
vents the unnecessary, costly hospi
talization of children. The agency is
the single largest provider of home
health care to people with AIDS in
the United States. VNS provides
mental health services for the home
less, and counselling to survivors of
tragedies like the World Trade
Center bombing. It provides free
influenza vaccinations to the elderly
(with the NYC Department of
Health). Its “Nursing Home Without
Walls” serves the chronically ill
elderly at home. VNS is one of just
four groups in the United States to
receive Federal funds for studying
how community nursing care can
improve the health of the elderly.
VNS’s new Research Center will
help to answer other key questions:
How can home care provide better
outcomes for patients? How can it be
made more efficient?
In House on Henry Street, Lillian
Wald wrote, “The call to the nurse is
not only for the bedside care of the
sick, but to help in seeking out the
deep-lying basic cause of illness and
misery, that in the future there may
be less sickness to nurse and to cure.”
VNS today continues Lillian Wald’s
legacy. ■
Dr Barbara Phillips is Director of The Center for
Home Care Policy & Research, Visiting Nurse
Service of New York, 5 Penn Plaza, New
York, NY 10001-1810, USA.
16
World Health ■ 47th Year, Ho. 4, July—August 1994
Health <are moves to the home
Knight Steel & Henk Tjassing
A high technology monitoring device enables
the nurse to provide cardiovascular care in the
home.
o underline the importance of
home care to all nations of the
world, WHO is sponsoring a
conference entitled “As the World
Ages, Health Care is Homeward
Bound”, scheduled for 22-23
October 1994, in Chicago, Illinois,
USA. Held under the auspices of the
World Organization for Care in the
Home and Hospice, the Carnegie
Council on Ethics and International
Affairs, and the Alton Ochsner
Medical Foundation, with a number
of leading nongovernmental organi
zations as co-sponsors, the two-day
conference will provide four
concurrent “tracks” of interest:
International models, Accreditation
and education, Economics and
policy, and Research.
International models will focus
on a comparative analysis of presentday home care programmes, taking
into account the diversity of present
practices, expectations, needs and
resources around the world. There
can be no single international model
for home care, and indeed the use of
“high tech” home care is only begin
ning to be considered in most coun
tries. By studying what has been
successful and what has failed in the
policy and practice of home care, we
can design new and better systems to
meet the world’s forthcoming needs.
The track dedicated to Accredita
tion and education will concern itself
with the training needs of doctors,
nurses and other health workers who
must function in the home setting.
Special attention will be given to the
educational needs of family mem
bers and other informal care-givers.
Economics and policy will high
light the political and economic
Health workers counselling mothers in Pakistan. Models of h
climate in which care is being pro
practices.
vided. Home care is not an isolated
acute and chronic, will be consid
issue and must be seen in the context
ered, with emphasis given to such
of limited resources and competing
items as nutrition, pain management
agendas. The emergence of new
and iatrogenic or hospital-caused
democracies and the costs of provid
disease (especially infections).
ing new technologies will come
Diseases seen predominantly in the
under discussion. The needs of the
home need to be a new focus of
aged and the terminally ill will also
attention for researchers, since the
be addressed, as well as the issues
functional deficits of chronic dis
surrounding the provision of health
eases create hardship for the enlarginsurance for all.
The fourth
track, Research,
will concern
itself with three
quite separate
research agen
das: health
services re
search, the study
of diseases
frequently seen
in the home
(such as
Alzheimer’s
disease), and
preventive
medicine.
Comparisons
between home
care and institu
A visiting health worker examining a patient in China.
tional care, both
World Health ■ 47th Yeor, No. 4. July—August 1994
17
care need to lake into account the wide diversity of current
As populations grow older, there will be increasing need for the care of functional disorders.
A health worker on her rounds provides home
care for the villagers.
ing older population as well as for
those who are younger yet afflicted
with disabling illnesses.
This conference will bring to
gether health care providers, re
searchers of many types, cultural
anthropologists, educators, corporate
representatives and policy-makers at
both the national and international
levels. While the agenda cannot
satisfy all the questions pertaining to
home health care, it will mark the
beginning of a better understanding
of this increasingly predominant
setting of care. ■
Dr Knight Steel is Director-General of the World
Organization for Care in rhe Home and
Hospice, 519C Street NE, Washington,
DC 20002-5809, USA. Mr Henk Tjassing is
President of the European Association of
Organizations for Home Care and Help al
Home, Avenue Ad. Lacomblelaan 69, Brussels
1040, Belgium, and President of the World
Organization for Care in the Home and
Hospice..
First International Home Care Week
The World Organization for Care in the Home and Hospice (WOCHH)
in association with the National Association for Home Care (United
States) would like to collaborate with all nations of the world in desig
nating the week of 27 November to 3 December 1 994 the First
International Home Care Week. Interested parties should please con
tact Dr Knight Steel, Director-General of the WOCHH, 519 C Street
NE, Washington, DC 20002-5809, USA. Tel. 202-546-4756.
Fax 202-547-7126.
18
World Health ■ 47lh Year, No. 4Z July—August 1994
Does home care save money?
Michael Sorochan & B. Lynn Beattie
k home core programme con
be very cost-effective and can
save millions if not billions of
dollars, both in capital costs
and operating costs. But it
must be accompanied by a
reduction in the total number
of institutional beds.
ealth care systems around the
world are more studied and
more ripe for change today
than ever before in history. Many
such studies recommend dramatic
changes in the traditional “health
care” system if the population requir
ing care is to receive, or to continue
to receive, affordable and quality
health care. Many factors underlie
this need for health care reform.
The rapid increase in the numbers of elderly
people around the world calls for fundamental
health care reforms.
ment. Lower birth rates have already
begun to reduce the availability of
children to support the older genera
tion. Higher divorce rates and the
increasing participation of women in
the labour force will further decrease
the availability of informal care.
A worldwide need to control the
amount of money spent on health.
Limited resources in most areas of
the world have resulted in cutbacks
on spending by governments for
health care, social services and
housing programmes. Hospitals and
other sectors of health care are under
pressure to “down size”, while gov
ernments and health care agencies
are frantically searching to find the
least costly alternatives to the provi
sion of high quality care. An ex
panded community care or home
care system is frequently hailed as
the possible “saviour” for the health
care system’s financial woes, espe
cially as it also offers the promise of
a better quality of life.
What is home care?
Home care can be defined as an array
of health and social support services
provided to clients in their own
residence. Such coordinated services
may prevent, delay or be a substitute
for temporary or long-term institu
tional care.
Changing demographics and
associated utilization rates. There is
a significant increase in the propor
tion of the population which is el
derly, especially in the developed
world. For example, the number of
persons in Canada aged 85 years of
age and over is projected to double
over the next 20 years and triple over
the next 40 years.
Weakening informal support
systems. It is estimated that over 85%
of long-term care provided in society
today is carried out by “informal”
care providers such as spouses,
children, relatives, friends and neigh
bours, at little or no cost to govern
A diabetic patient learns how to monitor her own blood glucose level without going to a clinic.
World Health ■ 47th Year, No. 4, JrV/g-js* 1994
For almost all people, the home is the setting of
choice for receiving health care.
Without question, the home is the
desired setting for receiving care.
Can we say with the same certainty
that home care is more cost-effective
than care provided in an acute or
long-term institutional setting?
In one province of Canada,
Ontario, an investment of only
Canadian $300 million per year in
the Home Care Programme is esti
mated to have produced savings of
$1800 million in capital costs, and
$500 million in annual operating
costs. Reducing the numbers of
elderly placed in institutions has
been identified as the largest poten
tial source of savings to the Canadian
health care system. Similar studies in
Denmark, the United States and other
countries support the notion that
many elderly and handicapped per
sons only require care in costly
institutions because of the lack of
adequate home care services. At the
same time, over the last decade,
home care programmes have man
aged to minister to the “high tech”
needs of many persons - with ser
vices previously only provided in
costly acute care hospitals.
The key to cost-effectiveness in
the provision of home care is the
appropriate “targeting” of persons
who are suitable to be served.
Services should reinforce rather than
erode self-help and the informal
support given by family members
and friends. Furthermore, if home
19
care is to be cost-effective, persons
must become as independent as
possible because of the availability
of home services.
Thus, in one case, care in the'
home may be cost-effective because
there is an available, caring spouse or
other relative. In another case, home
care may be much more costly than
institutional care because of the
pressing need for on-going, paid
professional and non-professional
care. One point always to remember
is that, if the burden on the informal
care-giver becomes too great, the
home care arrangement may break
down altogether, thereby resulting in
a marked increase in cost to the
health system.
Proving cost-effediveness
It may be difficult to demonstrate the
cost-effectiveness of home care
programmes which focus on health
maintenance and preventive services
(e.g., wellness programmes, house
cleaning, personal assistance, etc.),
because persons served by these
programmes are usually not at risk of
being placed in acute or long-term
institutions.
Home care may be more costeffective in comparison to hospital
care when an individual case is
studied. However, the introduction of
a service may result in a more costly
health care system as a whole, unless
other adjustments are made in the
system. In order to realize a decrease
in total costs to the health care sys
tem, the expansion of home care
must be accompanied by a corre
sponding reduction in the supply of
hospital or institutional beds.
Furthermore, while it may be
more cost-effective for a government
to provide care at home, it may not
be cost-effective for the patient or
family; the latter may face more
“out-of-pocket” expenses when
receiving care at home than would be
the case if the sick person received
care in a hospital. In many countries,
a family must pay for drugs, equip
ment, dressings, food and home care
services which would be provided in
The wife or husband is often the only caregiver
for the ailing elderly companion.
a hospital at no expense to the patient
or family. Moreover, an informal
care provider may have to forego
employment in order to remain at
home to look after an elderly person.
A home care programme must there
fore be structured with these facts in
mind.
In summary, yes - home care can
be very cost-effective and can save
millions if not billions of dollars,
both in capital costs and operating
costs. However, specific targeting of
clients is needed and institutional
beds must be reduced in number or
not added to. Additional benefits can
be obtained because disabled persons
can pursue work and educational
opportunities which would not other
wise have been possible.
Although economic considera
tions are of great importance, it must
never be forgotten that home care
provides a holistic, client-focused
philosophy of care, and allows maxi
mum autonomy and independence
for each individual in a familiar
environment - the home. ■
Mr Michael Sorochan is President of the
Canadian Home Care Association, 1060
West 8th Avenue, Vancouver, BC V6H 1C4,
Canada, and also Treasurer of the World
Organization for Care in the Home and
Hospice. Dr B. lynn Beattie is Head of the
Department of Geriatric Medicine,
Shaughnessy Hospital, Room G433,
Jean Matheson Pavillion, 4500 Oak Street,
Vancouver, BC V6H 3N1, Canada.
20
World Health ■ 47th Year, No. 4, July—August 1994
The challenge of AIDS
home care
Sandra Anderson & Noerine Kaleeba
4
Some countries have set as a
forget that by the mid-1990s
the majority of people living
with AIDS will be managed at
home. This challenge can only
be met if a strategy exists to
develop comprehensive care
across the continuum from
hospital to home.
he numbers of people becoming
ill as a result of HIV infection
will dramatically increase over
the next few decades regardless of
the effectiveness of efforts at preven
tion being made today. Since AIDS is
a chronic disease lasting months or
years, some of the care required is
likely to be supplied in hospital, but
the home is increasingly considered
the option of choice by sick individu
als and by health care systems.
Home care relies on two strengths
that exist around the world: the
family and the community. People
with chronic and terminal illnesses
have been cared for by families in the
home since time immemorial,
regardless of the cost. But the AIDS
epidemic presents new challenges.
Because home care lends itself to
the “ups and downs” of a disease like
AIDS, it is tempting to rely heavily
on the families to provide care at
home. Some countries have set as a
target that by the mid-1990s the
majority of people living with AIDS
Comprehensive care has to span the entire continuum from hospital Io home, only using the
hospital when there is a real need
will be managed at home. This
challenge can only be met if a strat
egy exists to develop comprehensive
care (medical, nursing and coun
selling) across the continuum from
hospital to home.
Once such a mix of services is
available the ill person and the carers
can jointly decide where the best
quality and most cost-effective care
is to be found. As with other chronic
diseases, the best care depends on a
continuity of services, with links and
referrals to assist the sick individual
to receive care at the right level, i.e.
as close to the home as possible
while still receiving comprehensive
management, including proper
diagnostic and therapeutic services
for AIDS-related diseases, such as
tuberculosis and diarrhoea.
the stigma frequently found in com
munities and health care facilities.
Fear stemming from a lack of knowl
edge contributes to the rejection of
people with AIDS and sometimes
their carers too. Without support,
communities and families may aban
don their traditional caring roles; this
can result in despair among carers,
and ultimately in the homelessness of
Destigmatizing AIDS
When care is taken out of health care
facilities and moved into the commu
nity, then community dynamics are
added to the picture. People with
AIDS and their families suffer from
Family members deserve to be supported in
their traditional caring role, since the family is a
strong resource on which home core relies.
World Health ■ 47th Yem, No. 4,
1994
AIDS patients. Living with AIDS in
the community is a booklet aimed at
helping individuals, families and
communities to understand AIDS
and to live positively in spite of this
disease (see box on next page).
The burden of AIDS on the health
care system is experienced around
the world. Some city hospitals in
high prevalence areas have 50-60%
of the hospital beds on medical wards
occupied by people with AIDS and
AIDS-related conditions. However,
the impact of HIV/AIDS on house
holds is also enormous: persons with
AIDS are economically less produc
tive being able to work fewer hours,
so others in the household have to
reallocate their time and priorities.
And greater spending on caring for
the person with AIDS may mean that
less is available for the health care of
other family members.
Caution is needed, especially to
avoid allowing the full burden of
home care to fall on females what
ever their ages. The distribution of
labour within the family should be
carefully considered, and communi
ties should develop supportive net
works composed of neighbours,
religious groups and clubs.
Providing AIDS home care can
either bring a family closer together
or drive it apart; certainly the family
dynamics will be affected. In
crowded families struggling with
poverty it may be difficult to provide
home care. People with AIDS can
also experience forgetfulness, confu
sion and even dementia, which test
the coping mechanisms of the family.
In contrast, sick individuals who are
living alone may be isolated and
unskilled in meeting their own nutri
tional needs and unable to find will
ing carers and a social support
system in nearby surroundings.
21
Even in the hospital, family members bear part of the care burden; but it is also on opportunity for
them to learn about home care.
Why home care for AIDS?
E
Good basic care with the most nurturing and flexibility can be
given successfully in the home, as it enables the ill person to be as
active and productive as the disease allows.
St
People who are very sick or dying would often rather stay at home,
especially when they know they cannot be cured in hospital.
El
Sick people are comforted by being in their homes and
communities, with family and friends around.
0
Relatives should be able to carry out their other duties more easily
while caring for the sick person who is at home.
■
Home care is usually less expensive for families, and sometimes
hospital care is not possible.
0
Home care provides educational opportunities for personal
messages about AIDS prevention, both in families and in
communities.
Acknowledgement is given to the staff of the Health Care Support unit of the WHO
Global Programme on AIDS.
Concerns of carers
Care provided by family, friends or
neighbours is not without problems.
Very few carers will have had appro
priate training. They will be worried
about their lack of knowledge and
Care al home involves more than a formal visit; if can also mean a sharing of emotions.
n
•
skills. They may be especially con
cerned about catching AIDS them
selves, even though HIV is not
spread through normal everyday
• contact or from taking care of a
person with AIDS provided the carer
covers any cuts or wounds on the
patient and is careful not to touch
fresh blood. They may be equally
frightened about giving emotional
support to a person who is terminally
ill. WHO’s Global Programme on
AIDS has recently prepared an AIDS
home care handbook (see box) to
help health care workers teach and
guide families in the emotional and
physical care of people with AIDS,
including detailed information about
common AIDS-related problems.
The handbook encourages health
care workers to share their knowl
edge and to empower families to
maintain quality of care at home.
Here are two examples of innova
tive AIDS home care programmes.
The Uganda AIDS Support Organiz
ation, TASO, ensures that if its clients
are well enough they join together for
socialization, counsell- ing, medical
care, and recreational and income
generating activities. However, if a
client is too ill to come to a centre,
a home visit - usually by a nurse - is
made to provide direct nursing care
in the home, to teach the family how
to cope with common ailments, and
to refer to a hospital if necessary.
In a situation where severe
poverty and overcrowding make it
very difficult to provide home care,
a care unit has been started in
Mashambanzou, Zimbabwe, where a
patient and a family member share a
small room together. The family
member is trained to provide care for
common ailments and to give com
fort. If no family member is avail
able, seropositive individuals who
are well are trained to care for others
who need home care but where there
is no home available.
AIDS home care has to be devel
oped and supported in the midst of
poverty, inequality and discrimina
tion. The ancient tradition of home
World Health ■ 47th Yew, Ho. 4, Ju!y—AugusT 1994
care faces new challenges in the age
of AIDS. Those challenges can be
met with compassion and education
provided families and communities
are seen as partners along the contin
uum of care.
Dr Sandra Anderson is Nurse-Scientisl with the
Health Core Support Unit, Global Programme
on AIDS, World Health Organization, 1211
Geneva 27, Switzerland and Mrs Noerine
Kaleeba is Executive Director of The AIDS
Support Organization, P.O Box 10443,
Kampala, Uganda
AIDS: handbooks that will help
How can one cope with AIDS? How can one still get the most from
life? What can one do in the home setting or after leaving hospital?
How can one accept death? How can people suffering from AIDS be
helped practically and emotionally?
There are a great many questions, and straightforward and easy-toundersfand answers are difficult to find. This is why WHO has published
its AIDS home care handbook, destined for health care workers, to help
them teach people with HIV infection or AIDS, their families and
communities. It can also be used by social workers, religious leaders,
psychologists and companions, and administrators of health
programmes.
The first part is a teaching guide for health care workers who have
contact with AIDS patients and their families. It describes the evolution
of the disease from HIV infection to AIDS, and suggests how to live
positively with AIDS as well as how to care for the dying. The second
part is a reference guide to the main symptoms of AIDS: fever, diarrhoea,
skin problems, etc., and offers advice on what can be done to care for
people at home and when to seek expert help. If also offers general
advice covering such varied fields as hygiene, nutrition and maternal
and child health.
The handbook is fully illustrated with drawings and uses a real life
story to present the details of the disease and its impact on individuals,
families and communities.
Another illustrated book - written and published jointly by the
Ugandan AIDS Control Programme, TASO (Uganda's AIDS Support
Organization), UNICEF and WHO - bears the title: Living with AIDS
in the community, a book to help people make the best of LIFE.
Both books are available from Distribution and Sales, World Health
Organization, 121 1 Geneva 27, Switzerland, price Sw.fr. 18.and Sw.fr. 6.- respectively. Single copies are free of charge to
developing countries.
Young men in a hospital of Eastern Europe. AIDS patients have no need to be isolated and ought
not Io be stigmatized.
World Health ■ 47H1 Year, No. 4. July—August 1994
23
Adding life to years
S. D. Gokhale & Chandra Dave
ecently one of us visited the
earthquake-shattered village of
Killari in central India to re
view the progress of rehabilitation
work carried out by our Community
Aid and Sponsorship Programme. In
one single-room house, the young
breadwinner and his wife had slept
inside, as is the local custom, while
the grandmother and her grandchild
had slept outside in the open. During
the earthquake, the four walls had
caved in, killing the young couple
and leaving the other two persons
destitute. Surprisingly, no one asked
us to send the child to an orphanage
or the elderly woman to an old-age
home. Kisan, a disabled young man,
said he would take care of both as he
was very distantly related to them.
Here is a typical example of the role
of the extended family in India: to
provide social security even in the
circumstances of utter poverty - the
real expression of kinship bonds.
To reach old age used to be the
privilege of a few. Now it has be
come the ordinary experience in
many countries of Asia. The vulner
able groups among the aging popula
tion in India are elderly widows, the
childless elderly, the physically
disabled, the elderly whose children
have migrated abroad and the elderly
in an alien environment. The objec
tives of the Old Age Policy as pro
posed by the Indian Federation on
Ageing include providing employ
ment options and family support,
income security and health insur
ance, social and economic support to
those elderly without families, access
to health services and housing and
area planning to suit the special
needs of the elderly.
Using 60 as the age to designate
“the elderly” this group in the popu
lation of India has been estimated at
55 million persons, comprising 6.5%
of the total population of 844 million
in the census year 1991. Most
government pensions for destitute
old people start at age 66 (earlier for
women). The railways, the largest
public enterprise, offer certain con
cessions in terms of fares to senior
Living to a great age is beginning to be commonplace in many countries of Asia.
The pendulum of social
thought has moved away from
doling out cash and
institutional services. Instead,
society is looking forward to
an aging process which is
healthy, economically
productive and politically
participatory.
citizens beginning at age 65. The
federal government also grants tax
benefits to senior citizens aged 65
years and above.
The kinship bonds of the extended family
provide social security both for the old and for
the very young.
24
World Health ■ 47th Year, No. 4, Jul'/—August 1994
The family as care-giver
For some years. Western social
■ scientists have been worried about
the future of the family as a social
institution, and have publicly de
clared that the family system would
wither away. But the family as an
institution has not withered away in
India. While the kinship arrange
ment is undergoing a tremendous
change, the family as an institution
has shown enough flexibility to cope
with the changing times. It remains
the main provider of care to the
elderly.
Homes for the elderly total little
more than 350, so these residential
institutions clearly cannot cope with
the problem. Therefore the vast
majority of the old in India do not
stay in institutions, which are mostly
in urban locations. Most of the old
are scattered among the 700 000
villages in a family setting.
Going Io see the doctor may seem to be an expensive luxury for many elderly people
However, there are variations in the
family arrangements. The much
eulogized joint family system
whereby the sons, their families and
widowed sisters
and aunts stayed
under a patriarch
has been found
by sociologists
not to have been
as utopian as
first portrayed.
Furthermore,
poverty, the
growing popula
tion and urban
ization are
adversely
affecting many
traditional
relationships.
There is no
cut and dried
definition of a
family in India.
Certain cate
gories of rela
tionships permit
people to stay
with a relative
without arousing
any social op
probrium. In
oriental societies
generally, the
concept of
For the poor elderly in India, there is no retirement and certainly no
dependence
pension. Their working lives go on.
does not entail a sense of inadequacy
or shame. Dependence is taken for
granted. Certainly living in a family,
however close or distant the kinship,
protects the elderly from much
social trauma, and the concept of
care encompasses addressing
whenever possible the physical and
mental needs of old age, financial
difficulties, the loss of meaningful
relationships and generally declining
functional capabilities.
To the extent that about 30% of
the population live below the
poverty line, financial considera
tions are a stark reality for the
elderly. For the poor and old in the
unorganized sector in India, there is
no retirement. They continue to
work, changing from hard labour to
lighter tasks, but they share a sense
of togetherness with the family that
is often wanting in some who are
better-off. The elderly may feel the
loss of near and dear ones - a wife or
a husband - but they are not lost,
nor left to the mercies of society. On
the other hand, during illness, they
are often medically unattended as
the logistics of arranging a visit to a
doctor entail too much expense and
effort.
25
World Health ■ 47th Yeorz No. 4, July—August 1994
Stressful situations
It is among the middle-class and the
middle-salaried that the care of an
aged parent tends to cause especially
stressful situations. The practice of
the aged person staying with the son
and his family means that the daugh
ter-in-law - the home-maker and the
carer - spends more time with the
house-bound elderly. While the older
person may easily adjust to the
small, circumscribed world, the carer
may experience great stress because
of the workload and monotony of
many tasks. The government’s
Department of Social Welfare offers
monetary assistance to families who
look after an indigent old person,
and the idea of putting such a person
in an institution is frowned upon. It
is probable that, but for the cultural
rejection of that idea, many more old
persons would seek the shelter of
old-age homes.
Neighbours in every village or
town play a prominent role in the
provision of home care, taking a
lively interest in each other’s lives
and offering help on a reciprocal
basis. In many neighbourhoods, the
daily exchange of food items is a
common occurrence. Old and young
develop surrogate relationships
which may offer an emotional
catharsis in times of stress. Among
middle-class people living in highrise city buildings, this neighbourly
reciprocity does not come to the
fore. In such socially isolated apart
ments, the old may suffer a great
deal.
Voluntary organizations most
often operate in low-income housing
complexes where the volunteers can
easily visit the families of the old.
After initial contacts, the elderly are
coaxed to come to the centre for the
activities run by the organization.
These may include periodic health
check-ups, the removal of cataracts,
the making of handicrafts, the read
ing of newspapers, the arranging of
picnics and participation in song
sessions.
Aging is not merely a demo
graphic issue, since how it is per
ceived is culture-dependent. In
Western societies, there is little
belief in the eternal cycle of life;
aging is seen as a traumatic process,
and retirement as a problem because
it brings people nearer to death. To
an Indian mind, death is not the end
of a book but the end of a chapter.
Consequently aging is not traumatic.
There is no fear of being isolated or
socially rejected when elderly.
In the context of sweeping
changes in the economy and family
structure, the question “what is and
what should be the family’s respon
sibility for older people?” needs to
be examined. Policy-makers in
India are now facing this challenge.
Declining family size means there
are and will continue to be fewer
potential carers for the older person.
Moreover, the increasing tendency
for married women to become wage
earners restricts their availability to
care for the aged.
While questions such as health,
housing and employment are impor
tant, the most fundamental question
is how the elderly look upon aging
themselves. Perhaps many cultures
have a lot to learn from the Indian
philosophy. The pendulum of social
thought has moved away from
doling out cash and institutional
services. Instead, society is looking
forward to an aging process which is
healthy, economically productive
and politically participatory. This is
the true meaning of adding life to the
years that - thanks to medical ad
vances - have been added to life. ■
Dr S.D. Gokhale is President of the
International Federation on Ageing,
'Gurulrayi' Building, 1779-1784 Sadoshiv
Peth, Bharat Seoul Ground Compound,
Pune 411 030, India, and Dr Chandra Dove
is a Researcher in Gerontology.
Provided the elderly slay healthy and feel useful, they make a positive contribution Io lhe life of
society.
26
World Health ■ 47th Year, No. 4, July-August 1994
Researching the health of the
elderly
Stefania Maggi
WHO's strategies for the elderly are aimed at
maintaining the quality of life for this population
group.
Research projects by WHO's
Health of the Elderly
Programme will help
minimize the decline in the
quality of life that comes
with age, so that everyone
can have the most fulfilling
life at home for as long as
possible.
he need to gain an understand
ing of some of the most devas
tating chronic diseases of older
persons was emphasized by a World
Health Assembly resolution in 1987.
It is, after all, these illnesses and
similar afflictions which prevent all
of us from functioning in our homes
for as long as we might otherwise.
The research effort of the Health
of the Elderly Programme, which is
coordinated in the WHO Office for
Research on Aging at the National
Institute on Aging, National
Institutes of Health, Bethesda,
Maryland, USA, has undertaken a
series of cross-national research
projects directed towards an under
standing of the age-associated
dementias, osteoporosis, age-related
changes in immune function and the
determinants of healthy aging - all of
which are relevant to home care. By
carrying out cross-national research,
the Programme hopes to identify risk
factors for some of the conditions
which are devastating to many of us
as we age and at the same time to
contribute to the basic needs assess
ment of the older population
The dementias
The objectives of the age-associated
dementias project are to estimate age
and sex-specific prevalence and
incidence rates of dementias, and to
investigate the distribution of several
possible risk factors in Chile, Malta,
Nigeria, Spain and the United States.
The clinical manifestation of these
illnesses appears to reflect cultural
and environmental factors as well as
genetic determinants. Over time, an
impairment of cognitive function is
virtually always associated with
deficits in both the fundamental
activities of daily living and the more
complex daily activities such as
shopping. These disabilities, which
usually increase in severity, result in
the need for both family members
and health care agencies to provide
progressively greater amounts of
assistance to those afflicted.
Caring for a demented relative is
among the most stressful of all
activities, often interfering with the
carer’s work capabilities, with very
negative consequences on family
relationships and lifestyles. In turn,
these problems may well affect the
care provided to the sick individual.
Respite care - allowing a welcome
break - is therefore one of the great
est unmet needs expressed by carers.
This project, designed to elucidate
the causes of this disease or group of
diseases, may also be instrumental in
providing information on the unmet
needs of millions of persons world
wide who have a dementing illness,
as well as the needs of their families
as they struggle to maintain these
persons in the home setting
Brittle bones
Another project for research in the
Programme addresses a serious and
crippling illness, osteoporosis,
which impairs function in older
Old women in Asian countries have fewer hip
fractures than those in ‘‘Western' countries in
spite of their lower bone densify.
27
World Health ■ 47th Yem, Na. 4, Jjiy—August 1994
women especially. This effort, to be
carried out in Brazil. China, Hong
Kong, Hungary', Iceland and Nigeria,
is designed to identify risk factors
associated with hip fracture, a fre
quent consequence of this “brittle
bone" disease and one which can
result in devastating and irreversible
loss of function. Dietary habits,
reproductive history', physical activ
ity, medication use, neuromuscular
impairments, visual impairments and
cigarette smoking are among the risk
factors being studied to determine
exactly what measures might limit or
delay the likelihood of hip fracture.
This project may help to explain
the differences in hip fracture inci
dence rates - for example, why older
women in Asian countries, in spite of
a relatively low bone density, appear
to have fewer hip fractures than older
women in some other countries. The
research programme will focus on
changes in bone mineral density over
time and the risk factors involved.
This will require individuals to be
followed for a number of years so
that deterioration in bone strength
and difference in hip fracture rates
can be measured. The incidence of
hip fracture is projected to quadruple
by the middle of the next century, at
very high cost to individuals and
nations in both economic and human
terms.
Successful aging
A third research project is being
carried out in Costa Rica, Israel,
Italy, lamaica, Thailand and
Zimbabwe. It is designed to describe
the health and functional status of
that unique segment of the older
population living at home which has
aged successfully, often in spite of
the accumulation of disease over a
lifetime. This study will test
hypotheses regarding the conditions
that predict differences in rates of
healthy aging both within countries
and between countries. Each country
should be able to profit from the
experience of others by putting in
place those preventive measures
which will result in an even greater
Assessing the needs of the elderly all over the world will help to ensure that the strategies of core
are pul in place.
proportion of the population aging
successfully.
Better vaccines
In a related effort, the research
programme is supporting the devel
opment of better vaccines for use in
the home setting. In association
with the Institute for Advanced
Studies in Immunology and Aging,
the programme is sponsoring collab
oration among scientists involved in
developing new technologies di
rected to the design of vaccines
against influenza and pneumococcal
infection. These diseases cause
exceptionally high rates of morbidity
and mortality in the older popula
tion. The need for tens of thousands
of individuals to be sent to hospital
would be eliminated if new and
more effective vaccines were devel
oped and widely used.
Home care assessment
Lastly, because the Health of the
Elderly Programme is fundamental
to the maintenance of older people in
their homes, it is collaborating with
scientists from Belgium, Italy, lapan,
Sweden, the United Kingdom and
the United States to design ways that
can be used in several countries to
assess the needs of this segment of
the population. With a valid, reli
able and easy-to-use needs assess
ment instrument, each country will
be able to tailor effectively and
appropriately its services for all
persons as they age.
These research projects - dedi
cated to providing continuous,
standardized, epidemiological sur
veillance of the rapidly increasing
older population - will study both
those who remain functional for the
greatest length of time, and those
who show a decline in function. We
believe that these and similar efforts
will help minimize the decline in the
quality of life that comes with age,
so that everyone can have the most
fulfilling life at home for as long as
possible. ■
Dr Stefania Maggi is Coordinator, World
Health Organization Programme for Research
on Aging, National Institute on Aging,
National Institutes of Health, 9000 Rockville
Pike, Building 31 b, Bethesda, MD 20892,
USA.
Healthy aging promotes the most fulfilling life al
home for the longest possible time.
28
World Health ■ 47th Yeoc No. 4, July-August 1994
Sweden's Servicehouse concept
. Britta Asplund & Ruth Bonita
It is taken for granted in
Sweden that older people
have made an important
contribution to society and
now deserve a good life and
the best that can be offered.
The Servicehouse is regarded
as a more pleasant
alternative to hospital. It is
also regarded as a right.
Personal autonomy is important for the elderly
and deserves to be encouraged by every
means available.
p to 40% of people over the
age of 80 in Sweden either
have some sort of home care or
are cared for in facilities provided by
each local council. The municipal
councils also have responsibility for
group homes, which in turn are
based on a social model where
personal autonomy is regarded as an
important ingredient. Usually 6-8
single apartments or single rooms
are grouped around a living room
and kitchen, and the residents have
their own furniture and keys.
In 1992 there were around 6000
demented or confused elderly people
living in group homes, although it is
estimated that by the year 2000
places will be needed for 25 000.
Currently there are between
45 000 and 50 000 nursing-home
beds and 40 000 sheltered homes.
Most of the sheltered homes try to
develop a familiar home-like atmos
phere with routine activities and
household tasks where the staff are
seen as positive role models. Since
hospital care is expensive and the
communities have their own medical
staff, sheltered homes are regarded
not only as an inexpensive form of
care, but also as a humane one. It is
taken for granted in Sweden that
older people have made an important
contribution to society and now
deserve a good life and the best that
can be offered.
A model centre has recently been
developed in Sweden for the care of
older people. This “Servicehouse”
comprises specially built selfcontained apartments, provided by
the local council and catering to
people needing rest-home care,
those needing considerable help
and supervision, confused elderly
people, and short-stay residents
requiring respite from caring for
elderly relatives in the community.
The Servicehouse is an attractive
building with 48 apartments, nine of
which are for patients clinically
diagnosed as having dementia.
Before 1991 it was an “old people’s
home” where each person had just a
single room and a toilet, with only
two bathrooms in the whole build
ing.
Home health services help elderly people who
live alone Io stay where they feel most comfort
able - in their homes.
Help in the home
We visited one woman who was on
the waiting list for one of the Service
house apartments. Although needing
a walking aid she lives alone on the
second floor of a building with no lift
and where the washing machine is in
the basement. She cannot manage the
stairs by herself and has a home help
every day, besides help from her
relatives. When she had just come
home from hospital after a hip frac
ture, she felt insecure and very afraid
of another fall but managed quite
well. Home service was provided
three times a day and evening
“patrols” dropped in and helped her
prepare for bed. Food service was
provided three times a week, with
two days’ supply of meals at a time.
She has a safety alarm linked with the
Servicehouse, and could use a com
munity-subsidized taxi service.
Monthly rental for a Servicehouse
apartment with a fully equipped
kitchen and bathroom is around USS
World Heolth ■ 47th Yeor, No. 4, Jjly^-Aegust 1994
29
for staff and relatives to
350-400, or S700 includ
ing full service (cleaning
read. It is also a way of
and full personal care) and
documenting changes over
time. Electronic surveil
all meals. Residents have
lance ensures that staff
their own furniture and
members know at any
furnishings to their own
stage where an individual
taste. A restaurant is also
patient is.
available which provides
The whole complex
three meals a day.
provides employment for
The Servicehouse plays
students during the sum
an integral part in the
mer months. Up to ten
community because it also
students, mainly women,
provides respite care
help in keeping the old
(alternative day care).
people active and inter
There is no limit to the
The 'servicehouse" concept is satisfying both for the elderly who need
ested. By being paired
amount of relief that carers care and for the students Io whom it gives employment.
with a full-time staff memcan provide; it depends
entirely on the person’s needs. Care
ber, they are trained and eventually
schedules and received one week’s
in the Servicehouse is regarded as a
assigned their own special charges.
in-service training and education
less expensive alternative and a more from a doctor and advice from the
The students are then able to take
pleasant one than hospitalization.
sufficient responsibility to allow staff
psychogeriatric clinic.
It is also regarded as a right.
members to go on annual leave.
Each staff member is assigned to
one or two residents and takes a
special interest in those persons by
checking doctor’s appointments and
For the confused elderly
arrangements, providing a focal
Mrs Britta Asplund's address is c/o
The special unit for the confused
point for continuing care, and in
Department of Internal Medicine, University of
Umea, Umea, S-901-85 Sweden, with
elderly consists of two separate
general acting as an advocate and
acknowledgement to Mrs Dorothy Olofsson of
sections, one containing four apart
contact person for relatives. The
the same department for her contribution to the
ments and the other, five. It was
contact staff member also prepares
article. Dr Ruth Bonita is Masonic Senior
Fellow at the University Geriatric Unit,
opened only 18 months ago and all
the box of medicines to be taken
Deportment of Medicine, P.B. 93-503,
residents (and staff) have been care
each night and keeps a log book for
Auckland, New Zealand.
fully chosen. The staff furnished the
each resident. This becomes an
place, planned all the activities, made important document and is available
Older people having made their contribution to society, in
their later years they deserve a good life and the best care
that can be offered.
Loving care: lhe recipe that makes everyone feel at home.
30
World Health ■ 47th Year, No. 4, July-August 1994
Community Attion
Care of the elderly a community health objective
Prosper Mihindou-Ngoma
Delegates to ///eWorld
Health Assembly and other
health experts are invited to
participate in Technical
Discussions on a chosen
theme of importance for
international public health.
This year the theme was
"Community action for
health", with the accent on
the need for a dynamic
partnership between health
professionals and individuals
in the community to ensure a
focused improvement in each
community's health status.
ealth care services for people
over 60 in Africa will need to
be intensified in the next few
years as they will number some
420 million by 1995 - 7% of the total
population of the continent.
The traditional structures that
once cared for the old are now in
danger of disappearing for a number
of reasons, including a rural exodus.
Families have also suffered an enor
mous reduction in their financial
capacity to provide for their elders as
a result of the economic crisis engulf
ing the continent. It must also be
said that most of
the African
countries have
no specific
social or med
ical policy for
this vulnerable
age group.
This is the
context in
which, six years
ago, the WHO
Regional Office
Traditional family lies are tending to break down. This throws a greater
for Africa intro
burden on the public services which are responsible for the welfare of the
duced a pro
elderly.
gramme on the
welfare of the elderly. Accordingly, it to take part in interviews with the
funded activities for the elderly in
media.
two countries in 1990 and 1991.
Essential health care must be
Designated as one of the targets
made available to the elderly and
for the community health program
special attention must be given to the
me, the welfare of the elderly is seen
chronic diseases that sap their health
to depend on the utilization of their
(for example, diabetes, high blood
skills, economic independence, and
pressure, degenerative joint disease).
the maintenance of physical fitness,
Their diet and personal hygiene need
mental health and social contacts.
to be matters of concern for the
Stressing the community approach of community.
primary health care, WHO regards
WHO’S African Member States
the family as the indispensable circle are now being challenged to look for
within which older people must be
the means to develop domiciliary
made to feel valued and useful.
care, which is a much more impor
Through dialogue with the young,
tant need for the elderly than hospital
for example, they may be able to
care. This will demand a change in
pass on the cultural heritage of the
attitudes among health workers and
past or teach the medicinal properties the public authorities. The former
of certain plants.
will have to explore a new aspect of
To keep older people in good
their profession, while the latter must
mental health, communities should
be brought to understand the need to
entrust them with certain tasks, such
increase their funding for this pro
as looking after children, or involve
gramme. ■
them in activities that interest them.
As they are often poor, this could be
a source of income for those who are
physically fit. Older people should
also be encouraged to join in com
Prosper Mihindu-Ngoma is a /ournalist with the
mittees to welcome visitors or vil
Congolese Information News Agency. His
lage or district health committees, or
address is BP 2144, Brazzaville, Congo.
31
World Heolth ■ 47thYeor, No, 4, juiy—August 1994
WHO in action
Risk-free beaches
Mediterranean - laid down the
microbiological basis for new, more
comprehensive guidelines.
Now the WHO Regional Office
for Europe is developing broader
guidelines for the health-related
monitoring of salt and fresh water as
well as beaches. Dr Bent Fenger,
water and waste scientist at the
Rome-based WHO European Centre
for Environment and Health, com
ments: “Recreational use does not
begin at the water’s edge. Beaches
themselves are just as important, and
guidelines are needed to evaluate
their quality as well. Not only that,
but service facilities and amenities
such as toilets and food vending
places have a health significance that
needs to be considered.”
The guidelines will also cover
aspects that have hitherto received
little attention. While people want
bathing water that is free from any
risk of infection, they also want
water that does
not stink, look
cloudy, taste
nasty or have oil,
scum or litter
floating in it.
Then there are
the physical
characteristics of
the bathing area.
Is the bottom
sandy or filled
with sharp
Guidelines will provide precise explanalions aboul what constitutes good
rocks? Does it
quality for bathing water and surroundings.
n WHO’s European Region, more
than 100 million people each year
use salt-water and fresh-water
beaches for their recreation.
Naturally, they want to be sure that
they can enjoy their beach games or
water-sports without the risk of
falling ill from diseases caused by
contamination or pollution. However,
different countries have different
ways of measuring water quality
standards; most of them focus only
on swimming and bathing as the
main activities, and limit themselves
to checking only the bacteria con
tents of the water. The “new” coun
tries of Eastern Europe are also
wondering what standards they
should adopt.
The Mediterranean Action Plan an initiative covering 17 coastal
states and involving the UN
Environment Programme (UNEP) as
well as the WHO Regional Offices
for Europe, Africa and the Eastern
In the next issue
As we are approaching the 21 st
century many new develop
ments are emerging in the socio
medical field. The next issue of
World Health will describe
some of the current trends which
are shaping the medicine and
the public health scene of tomor
row. ■
contain broken glass or rusting cans?
Is it fiat, sloping or does it drop
suddenly into deep water? The
guidelines will provide clear expla
nations about what constitutes qual
ity, and offer practical advice on how
to achieve it.
“Our final customers are the
people who use these recreational
resources,” says Dr Fenger. “We
want to send a clear message to them
about what WHO as a health organi
zation recommends as good recre
ational quality.” s
Further details available from Dr Bent Fenger,
WHO European Centre for Environment and
Health, Via Vincenzo Bona 67, 00156 Rome,
Italy.
Photo Credits
Front cover: WHO/M. Holomandaris/CARIKG magazine
Page 3: WHO/M. Halamandaris/CARING magazine;
WHO/A. Badawi
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WORLD HEALTH ORGANIZATION
STUDY GROUP
HOME-BASED AND LONG-TERM CARE
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§
5-10 December 1999
“THE INVISIBLE HEART
CARE AND THE GLOBAL ECONOMY”
Chapter 3
Excerpt from The Human Development Report 1999
Published for the United Nations Development Program (UNDP)
New York
Oxford
Oxford University Press
1999
LTH/HSC/SG/99/2
4
3.
10
CHAPTER 3
The invisible heart—
care and the global economy
Studies of globalization and its impact on peo
ple focus on incomes, employment, education
and other opportunities. Less visible, and often
neglected, is the impact on care and caring
labour—the task of providing for dependants,
kfor children, the sick, the elderly and (do not
forget) all the rest of us, exhausted from the
demands of daily life. Human development is
nourished not only by expanding incomes,
schooling, health, empowerment and a clean
environment but also by care. And the essence
of care is in the human bonds that it creates and
supplies. Care, sometimes referred to as social
reproduction, is also essential for economic
sustainability.
Globalization is putting a squeeze on care
and caring labour. Changes in the way that men
and women use their time put a squeeze on the
time available for care. The fiscal pressures on
the state put a resource squeeze on public
spending on care services. And the wage gap
between the tradable and non-tradable sectors
(puts an incentive squeeze on the supply of care
services in the market. Gender is a major factor
in all these impacts, because women the world
over carry the main responsibility for these
activities, and most of the burden.
In a globally competitive labour .market,
how can we preserve time to care for ourselves
and our families, neighbours and friends? In a
globally competitive economy, how do we find
the resources to provide for those unable to
provide for themselves? And how can societies
distribute the costs and burdens of this work
equitably—between men and women, and
between the state and the family or community,
including the private sector (box 3.1)?
To answer these questions requires an
understanding of what care is, how it is pro
vided, who bears the costs and the burdens and
what the critical paths are to negotiating an
equitable solution. These are little-explored
issues, but an exciting new body of work is
probing them.
Globalization is putting
a squeeze on care
and caring labour
Human development, capabilities
AND CARE
The role of care in the formation of human
capabilities and in human development is fun
damental. Without genuine care and nurturing,
children cannot develop capabilities, and
adults have a hard time maintaining or expand
ing theirs. But the supply of care is not merely
an input into human development. It is also an
output, an intangible yet essential capability—
a factor of human well-being.
Most adults need care in the emotional
sense, even if not in the economic sense of rely
ing on one another. A clear manifestation of
this is the positive effect of social support and
social relationships on life expectancy—at least
as significant as the negative effects of cigarette
smoking, hypertension and lack of physical
exercise. Married adults enjoy lower risks of
mortality than those who are unmarried.
The difference that care makes for child
health and survival is also well documented. A
UNICEF analysis identifies caring as the third
underlying factor in preventing child malnutri
tion, after household food security and access
to water, health care and sanitation facilities. It
is what translates available food and health
resources into healthy growth and develop
ment. For example, risks of malnutrition and
illness depend significandy on whether a child
is breast-fed and how long, at what age it is
given complementary foods and whether it
receives immunizations on schedule. Many
studies show that malnourished children grow
THE INVISIBLE HEART-CARE AND THE GLOBAL ECONOMY
77
faster when they receive verbal and cognitive
stimulation—special attention can encourage a
child in pain to eat.
Another link between human develop
ment and care relates to equity for the
providers of caring labour. These activities are
often identified with women’s unpaid work in
the domestic sector. This is an important
source, but there are others. Not just the fam
ily but the community plays an important role.
So do men, though their contribution is
smaller than women’s in most countries. The
private sector provides domestic service,
BOX 3.1
■
If we are going to compete, let it be in a game of our choosing
Once upon a time the goddesses decided to
hold a competition, a kind of Olympics,
among the nations of the world. This was
not an ordinary race in which the distance
was determined and the winner would be
the runner who took the shortest time, but
a contest to see which society, acting as a
team, could move all its members forward.
When the gun went off, one nation
assumed that the race would not last long.
It urged all its citizens to start running as
quickly as possible. It was every person for
himself. Very soon the young children and
the elderly were left behind, but none of the
fast runners bothered to help them out
because it would have slowed them down.
At first those who were in front were
exhilarated by their success. But as the race
continued some became tired or hurt and
fell by the wayside. Gradually all the run
ners grew exhausted and sick, and there
was no one to replace them. It became clear
that this nation would not win the race.
• Everyone’s attention turned to a second
nation, which adopted a slightly different
strategy. It sent all its young men out ahead
to compete, but required all the women to
come along behind, carrying the children,
the sick and the elderly and caring for the
runners who needed help. The nation’s lead
ers explained to the women that this was a
natural and efficient arrangement from
which everyone could benefit. They pro
vided great incentives for the men to run fast,
and gave them authority over the women.
At first this seemed to work, but the
women found that they could run just as
fast as the men if they were not burdened
with caring for the weak. They began to
Source: Foltxe 1999.
78
argue that the work they were doing
caring for the runners—was just as irripor- '
tant as the running and deserved equal
reward. The men refused to make any
changes. The nation began to waste a great
deal of energy in bargaining and negotia
tion. Gradually it became dear that this
nation, too, was losing the race.. .
So attention turned to a third nation,
which had started out moving quite slowly,
though making steady progress. In this
nation everyone was required both to run
and to take care of those who could hot run,
Both men and women were given inceri-.
rives to compete, to rim as fast as possible, :
but the rules required them all to share-in
carrying the burden of care.
Having agreed to rules that rewarded
both kinds of contribution to the collective 1
effort, people were free to choose their own ■
speed, to find a balance between individual
effort and collective responsibility. This
freedom and equality contributed to their .
solidarity. Of course, it was this nation that .
wontherace. .
. /
Perhaps this is a utopian fairy tale. But
the global economic system tells us that we.
are all in a race. It tells us to hurry up. It tells
us all to worry about our speed. But it does
not tell us how long the race will last—or
what the best long-term strategy is. And it
does not tell us how victory will be defined.
If we are going to compete, let it be a game
of our own choosing. That is, in a nutshell,
the challenge of the new global order: how
to define a world economy that preserves the
advantages of market competition, but
establishes strict limits and rules that prevent
competition from taking a destructive turn.
teaching, nursing and similar services. The
public sector also provides many services in
these areas (figure 3.1).
But in almost all societies the gender divi
sion of labour hands the responsibility for
caring labour to women, much of it without
remuneration—in the family or as voluntary
activity in the community. Human Develop
ment Report 1995 estimated that women
spend two-thirds of their working hours on
unpaid work (men spend just a fourth), and
most of those hours are for caring work. The
hours are long and the work physically
hard—fetching water and fuel, for exam
ple—especially in rural areas of developing
countries. In Nepal women work 21 more
hours each week than men, and in India, 12
more hours. In Kenya 8- to 14-year-old girls
spend 5 hours more on household chores
than boys. These inequalities in burden are an
important part of the obstacles women face in
their life choices and opportunities.
Women also make up a disproportionate
share of workers in domestic service and in pro
fessions such as child care, teaching, therapy
and nursing. These occupations offer low pay
relative to their requirements for education,
skills and other qualifications—another source
of gender biases in opportunities.
Care—or “tender loving care”
Care can mean a feeling of care, an emotional
involvement or a state of mind. Personal iden
tity and personal contact—especially face-toface contact—are key elements of care services,
involving a sense of connection between the
givers and receivers. The care-giver may be
motivated by affection, altruism or social
norms of obligation. The care-receiver has a
sense of being cared for. These elements are
frequently there even when the care-giver is a
paid employee. Individuals often choose caring
jobs because they are a way to express caring
motives and earn a living at the same time.
The commitment to care for others is usu
ally thought to be altruistic—involving love and
emotional reciprocity. But it is also a social
obligation, socially constructed and enforced
by social norms and rewards. A compelling
example: when a mother gets up for the fifth
HUMAN DEVELOPMENT REPORT 1999
time in the night to soothe her crying child, it is
not necessarily because she gets pleasure from
doing so. She may feel quite irritated. But she
accepts a social obligation to care for her child,
even at some cost to her health or happiness.
The word care often refers to looking after
people who cannot take care of themselves:
children, the sick, the needy, the elderly. But
this misses the fact that even the healthiest and
happiest of adults require a certain amount of
care. Their need for that care may ebb and flow,
but it sometimes comes in tidal waves.
Globalization and care
Economic analysis of care offers three insights
into the impact of globalization on human
development:
• Women’s increased participation in the
labour force and shifts in economic structures
are transforming the ways care services are pro
vided. Needs once provided almost exclusively
by unpaid family labour are now being pur
chased from the market or provided by the
state.
® Increases in the scope and speed of trans
actions are increasing the size of markets,
which are becoming disconnected from local
communities. As market relationships become
less personal, reliance on families as a source of
emotional support tends to increase—just as
they are becoming less stable economically and
demographically.
• Perhaps most important, the expansion of
markets tends to penalize altruism and care.
Both individuals and institutions have been
free-riding on the caring labour that mainly
women provide. Whether women will continue
to provide such labour without fair remunera
tion is another matter.
Globalization is dominated by the expan
sion of markets and rewards profitability and
efficiency. While economic growth reflects
increasing private and public incomes, human
development needs people to provide goods
and services that fall outside the market—such
as care and other unpaid services. A country
can speed the growth of GDP by encouraging
a shift in production from unpaid services such
as care to market commodities. Care thus has
clear analogies to environmental resources,
with the characteristics of a resource outside
the market. But a deficit of care services not
only destroys human development—it also
undermines economic growth.
This may be just what is happening in many
OECD countries today, where there is a short
age of reliable, skilled labour in the midst of
widespread unemployment. And despite uni
versal schooling, there are widespread gaps in
skills. Data from the International Adult Liter
acy Surveys in OECD countries show that
nearly half the population in almost all these
countries score below the level needed to be
trained for a skilled occupation.
The traditional restrictions on women’s
activities once guaranteed that women would
specialize in providing care. Globalization’s
shifts in employment patterns have promoted
and to some extent enforced the participation of
women in wage employment. The supply of
unpaid care services may be reduced, and
daughters, cousins or nieces may have to take on
more of the work. Nonetheless, women in most
countries continue to carry the “double bur
den” of care services—ending up exhausted.
A challenge for human development is to
find the incentives and rewards that ensure the
supply of services—from the family, the com
munity, the state and the market—all recogniz
ing the need for gender equality and
distributing the burdens and costs of care fairly
(boxes 3.2 and 3.3).
Noble. But trends are moving in the oppo
site direction. In OECD countries the problem
is that globalization has pulled back on state
services and pushed more to private services.
Many social commentators protest the ensuing
deterioration in quality.
In the transition economies of Eastern
Europe and the CIS these trends have been
dramatic, contributing to the huge human
costs of the transition. The dismantling and
weakening of the welfare state have meant cuts
and deterioration in services in health and
education—across the board—contributing
to the deteriorating human outcomes. Life
expectancy was lower in 1995 than in 1989 in
7 of 18 ceuntries—falling as much as five years
since 1987. Enrolment in kindergarten
declined dramatically—falling from 64% to
36% of 3- to 6-year-olds in Lithuania between
THE INVISIBLE HEART—CARE AND THE GLOBAL ECONOMY
FIGURE 3.1
Four sources of caring labour
Women's unpaid
work
+
Men's unpaid
work
+
Private
market services
+
Public
services
Source: Human Development Report Office.
7'
1989 and 1995, and from 69% to 54% in Rus
sia. Responsibility for pre-primary education
was transferred from the state to parents, with
enormous consequences for mothers of chil
dren this age.
Care and market rewards
Care produces goods
with widespread
benefits for those who
do not pay for them
The market gives almost no rewards for care.
Much of it is unpaid—most of it provided by
women, some by men. The market also penal
izes individuals who spend time in these
activities, which take time away from invest
ing in skills for paid work or from doing paid
work.
Care services are also provided in the
market, usually underremunerated. What
explains the financial penalty for doing caring
work? Gender bias is one factor. A second is
the intrinsic reward people get from helping
others, allowing employers to fill jobs at
lower pay. A third is that people feel queasy
about putting a price on something as sacred
as care.
And global economic competition has
tended to reinforce these trends, as the wage gap
increases between the tradable and non-tradable
sectors. Wages for teaching, domestic service
and other caring work have stagnated—or even
fallen—in the industrial countries.
■■■
80X3-2
'
•• ' '
'■
Globalization leads to the feminization of labour—
■
.
but the outcome is mixed
Many empirical studies now allow analysis the work is volatile—with contracts moving
of how shifts in trade, patterns affect with small changes in costs or trade
employment. A study, covering 165 coun- regulations.
tries from 1985 to 1990. concludes that'
Globalization has also been assoaated;
greater trade openness increases women’s with home work, tele-work and part-time
share ofpaid employment,Further analysis work. In the United Kingdom, the share of
ofplant-level data from Colombia and from workers with unconventional work, arTurkey—both with rapid export growth-- rangements rose frqm’17% in 1965 to 40%.
shows that firms producing for export in 1991.In 1985 the shares of such work.
employ more female workers, often in arrangements were up to 15% in Japan,
skilled functions,
33% in the Republic of Korea and 50% in,
But increasing participation has not Mexico, Peru and Sri Lanka, And . in
always meant less discrimination. Women Greece and Portugal women constitute
constitute a large share of workers in infor- 90% of the home workers. This is a mixed
mal subcontracting, often in the garment ■ blessing,Informal work arrangements can
industry—at low wages and under poor . accommodate women’s care obligations in .
conditions. Highly competitive interna- the family. But such jobs are often precaritional markets in garments also mean that ous and podrly paid.
Source: Ozler 1999.
80
Care produces goods with social externali
ties—widespread benefits for those who dcnot
pay for them. It creates human and social
capital—the next generation, workers with
human and social skills who can be relied on,
who are good citizens. But mothers cannot
demand a fee from employers who hire their
children. This care will be underproduced and
overexploited unless non-market institutions
ensure that everyone shares the burden of pro
viding it. The traditional patriarchal family, and
gender biases in society that limit opportunities
for women outside the role of wife and mother,
have been the traditional way to solve this prob
lem. But this is obviously inequitable, and no
solution at all.
Redistributing the costs and
RESPONSIBILITIES OF CARE—
TO FAMILY, STATE AND CORPORATION
Where do the effects of globalization fit in the
larger conflicts over the distribution of the costs
of care? Consider a mother who devotes much
time and energy to enhancing her children’s
capabilities and a country that devotes much of
its national budget to family welfare. In the
short run both are at a competitive disadvan
tage: they devote fewer resources to directly
productive activities. But in the long run their
position depends on their ability to claim some
share of the economic benefits produced by the
next generation.
The family today is a small welfare state.
Women invest time and energy in children—
essentially a “family public good”. They pay
most of the costs—while other family members
claim a greater share of the benefits. What they
do is far less transferable outside the family
than investments in a career. The resulting loss
of bargaining power can mean less consump
tion or leisure time for women, even if they
remain married and enjoy some of their hus
band’s market income.
Public spending on children is modest
compared with that by parents. Take public
spending in the United States, about 38 per
cent of all spending. Over the past 30 years the
elderly in the United States have received far
more than the young for a simple reason—the
elderly have more votes than parents with chil
HUMAN DEVELOPMENT REPORT 1999
dren. Studies in Western and Eastern Euro
pean countries show similar biases against
children. Parents who invest in the next gen
eration of workers are not explicitly rewarded
for their efforts. Their efforts are socially
important but economically unproductive.
For much of the past 200 years nations
have exercised a lot of control over the pro
duction of care services such as education,
health and provision for dependants. The
analogy of the family to the state is clear. Both
institutions demand commitment to the wel
fare of the collective rather than the individual.
But on the negative side, both institutions can
generate oppressive hierarchies that interfere
with the development of human capabilities.
Take a multinational corporation, tired of
the frustrations of negotiating taxation and
regulation with host governments, that buys a
small island, writes a constitution and
announces a new country—Corporation
Nation. A citizen automatically receives a
highly paid job. Sounds good, but some
restrictions apply. Individuals must have
advanced educational credentials, be physi
cally and emotionally healthy, have no chil
dren and be under the age of 60. They do not
have to emigrate but can work from their
country over the Internet. And they immedi
ately lose their new citizenship if they require
retraining, become seriously ill, acquire chil
dren or reach the age of 60.
Corporation Nation can free-ride on the
human capabilities of its citizen workers
without paying for their production or their
maintenance when ill or old. It can offer high
wages to attract the best workers from
around the world without threatening its
profitability. Footloose capital of the global
ized economy weakens the connections
between corporations and communities, and
the obligations to citizens. Why then would
multinational firms remain in countries that
tax them to support the production of human
capabilities when they can go elsewhere and
free-ride? They will remain for a while, out of
habit and loyalty. But the ones that jump first
to take advantage of new opportunities will
win the race if the finish line is defined by
maximizing the short-term value of market
output.
The challenge of care in
THE GLOBAL ECONOMY
How can societies design new arrangements for
care in the global economy—to make sure that
it is not squeezed out?
Many fear that there is no alternative to the
traditional model of the patriarchal household
in which women shoulder much of the respon
sibility through unpaid work. The resurgence
of religious fundamentalism around the world
testifies to the anxieties about changing tradi
tional patriarchal relationships that have
ensured a supply of caring labour. Many social
conservatives fear that globalization fuels mar
ket-based individualism at the expense of
BOX 3.3
More paid work doesn’t reduce unpaid work
Women are responsible for most unpaid
care work—a social norm slow to change. A
review of time-use surveys in Human
Development Report 1995 showed a gen■ eral trend to greater gender equality in
unpaid work in the OECD countries, but
. no equalization in developing countries and
a deterioration in the transition economies
of Eastern Europe and the CIS.
Bangladesh had one of the largest
increases in the share of women participat
ing in the labour force—from 5% in 1965 to
42% in 1995. This has been important for
export growth, with women as the main
workers in the garment industry. But women
still spend many hours in unpaid work. A
survey ofmen and.wqmen working in formal
urban manufacturing activities shows that
women put in on average 31hoursaweekin
unpaid work—cooking, looking after chil
dren, collecting fuel, food and water (box
table 33). Men put in 14 hours in activities
such as house repair. Workers in the infor
mal sector show similar patterns. '
Women in Eastern Europe and the
CIS spend more hours in paid employ
ment than those in most other countries.
But the gender disparity in sharing the
burden of unpaid work remains stark, and
it is worsening under the economic dislo
cations of the transition. In Bulgaria
men’s total work burden was 15% less
than women’s in 1977 but 17% less in
1988. Women increased their share of
both paid and unpaid work-in 1977 men
did 52% as much household work as
women, but in 1988 only 48% as much. In
Moldova women work 73.5 hours each
week.
In OECD countries men’s contribution
to unpaid work has been increasing. But a
woman who works full time still does a lot of
unpaid work. Once she has a child, she can
expect to devote 3.3 more hours a day to
unpaid household work. Married women
who are employed and have children under
15 carry the heaviest work burden—almost
11 hours a day.
BOX TABLE 33
Time spent in paid and unpaid work in Bangladesh, 1995
(hours per week)
• Unpaid work
'
Paid employment
Total
'
.
' '
Formal sector
workers
Men
Women
informal sector
workers
Men
Women
14
53
67
14
■23
37
: 31
.56
87
24
21
45
Wee; Zohir 1998; UNDP 1995.
THE INVISIBLE HEART-CARE AND THE GLOBAL ECONOMY
81
social commitments to family and community.
A consistent theme of religious fundamental
ism worldwide: re-establish rules that restrict
women’s rights for fear that women will aban
don caring responsibilities.
At the other end of the spectrum is market
provision of care—but often the people who
need care cannot afford to pay for it. And finally
there is state provision. But the search for effi
ciency in today’s global economy imposes a
“market discipline” that is at variance with qual
ity. Cost-minimizing standards drive down qual
ity in schools, hospitals and child-care centres.
So public services alone are not a total answer,
though state support must be a big part of it.
In all this, the challenge is to strike a balance
between individual rights and social obligations
of care. Competitive market societies emphasize
values that encourage individualism—and say
little about obligations and commitment to the
family and community. The extreme responses
of the patriarchal backlash and the marketization of care require far less effort and negotiation
than the democratic response, which requires
•
BOX 3.4
.
... .
.
serious thinking about how to enforce responsi
bilities for care in the community.
So the first step must be to challenge social
norms—to build commitment of both men and
women to their responsibilities for caring
■labour. Societies—through public and corpo
rate policy—then need to acknowledge care as
a priority human need that they have a social
obligation to foster.
A clear policy path is to support incentives
and rewards for caring work, both paid and
unpaid, to increase its supply and quality. This
does not mean sending women back to the tra
ditional role of housewife and mother, closing
off other opportunities. It means sharing
unpaid care services between men and women.
reducing men’s paid work time and increasing
their time on family care. And it means increas
ing the supply of state-supported care services
Nordic countries have a long tradition of suck
approaches, which give public recognition anc
payment for care, rewarding family commit
ment but without reinforcing traditional gen
der roles (box 3.4).
•
Support for men’s child-care responsibilities in Western Europe
Although several countries in Western Europe
have. encouraged gender-neutral familyoriented work policies, in 1995 only 5% of the
male workforce in the European Union (EU)
worked part time, and only 5% of fathers took
paternity leave. Men often cite their work envi
ronment as a constraint when explaining their
reluctance to make full use of parental and pater
nal leave rights or to work part-time to care for a
child. Private sector employers in particular are
seen as unsupportive of such arrangements. Tra
ditionally it has been women who have had to
move into part-time labour or take a career break
after the birth of a child. EU Commissioner for
Employment and Social Affairs Padraig Flynn
has stated that “even where there are policy
instruments aimed at breaking down the gender
imbalance in caring... the assumption that car
ing is the responsibility of women persists.”
'Denmark. About 65% of men in the labour
force work 30-39 hours .a week,'30% work
more and 5% less; 69% of women work 30-39 .
hours, 11% work more and 20%. work less. In
1987 men spent 10 hours a week in unpaid.
work, women 21 hours; in 1997 men spent 13
hours in unpaid work, and women 18. ’
Germany. A third of women work less than 35
hours a week; only 2-3% of men do so.
Italy. Married women with children spend 7.5
hours each day in care work, men 1.5 hours.
Netherlands. Women spend twice as much
time in unpaid work at home as men (women 32
hours, men 16). But women who work more
than 30 hours a week spend only 18 hours in
unpaid housework, compared with 19 hours for.
their husbands.
Spain. Women spend seven times as many
hours doing domestic work as men..
Time use
Paternal and parental leave
Austria. Men spend an average of 70% of their
Denmark. Fathers are allowed a 2-week pater
time in paid labour, 30% in unpaid; women
spend an average of 30% of their time in paid
labour, 70% in unpaid. Women make up 98%
of part-time employees.
nal leave for the birth or adoption of a child.
They can also use the last 10 weeks of maternity
leave (10% of fathers do this). And there is a 4week extension for fathers only.
Finland. Fathers may take 6-18-days ofpater- '
naileave, and 158 days of parental leave'caribe .
shared after maternity leave ends' (parental
leave is used by only 3% of fathers) One parent ’
can take unpaid leave until the child is three.’;’’
-And parents are allowed 2-4 days a yearto care
for a sick child,,:,’.-; y
Italy:.During the child’s first year a 6-month
parental leave canbe.taken after matefnity'lehye''
ends (at30% pay)
' ,
,v Norway. Employees may take par'entai leave
for 42 weeks (at 100% pay) of 52 weeks'.fat 80%;r
pay). Fathers, must use at least 4. weeks of the ;
parental leave; otherwise that period is lost.
Parents may also combine their Idavewith part- ;
time work. Employees are allowed 10-15 days
each year to care for a sick child, single parents
20-30 days.
'■< ■ '
Sweden. Employees are allowed 10 days’
paternal leave for the birth or adoption of a
child, 450 days’ parental leave (at'80%'pay).'.
One parent, usually the father, has an absolute
right to one month (at 85% pay). Parents have
the right to a 25% reduction in their work
hours until a child is eight; child care is a legal
right.
ioira.-Flynn 1998; EU Networt 1998.
82
HUMAN DEVELOPMENT REPORT 199
Citizens could be given tax credits for con
tributing care services that develop long-term
relationships between individuals. And this
model could be extended further. For exam
ple, many young adults benefit from public
support for higher education. They could
repay the costs through mandatory national
service that takes some responsibility for chil
dren and other dependants in their commu
nity. The care services they could provide
would be at least as valuable as military service,
and they could develop important skills as well
as reinforce the value of care.
Policies to foster more caring labour
appear unproductive or cosdy only to those
who define them as narrowly contributing to
GDP or short-term profit. The erosion of fam
ily and community solidarity imposes enor
mous costs reflected in inefficient and
unsuccessful education efforts, high crime
rates and a social atmosphere of anxiety and
resentment. The nurturing of human capabili
ties has always been difficult and expensive. In
the past it was assured by a gender division of
labour based on the subordination of women.
Today, however, the cost of providing caring
labour should be confronted explicitly and
distributed fairly—between men and women,
and among the state, the family or community
and the employer.
THE INVISIBLE HEART—CARE AND THE GLOBAL ECONOMY
Octo 17 4 3 •• H
WORLD HEALTH ORGANIZATION
STUDY GROUP
HOME-BASED AND LONG-TERM CARE
Ma’ale Hahamisha, Israel
§
5-10 December 1999
“STRENGTHENING FAMILY-BASED CARE
FOR FRAIL ELDERS”
LESSONS FROM U.S. AND U.K RESEARCH
Patricia G. Archbold
Barbara J. Stewart
School of Nursing
Oregon Health Sciences University
3181 SW Sam Jackson Park Road
Portland, Oregon 97201, USA
LTH/HSC/SG/99/1
STRENGTHENING FAMILY-BASED CARE
FOR FRAIL ELDERS
LESSONS FROM U.S. AND U.K. RESEARCH
Patricia G. Archbold
Barbara J. Stewart
School of Nursing
Oregon Health Sciences University
3181 SW Sam Jackson Park Road
Portland, OR 97201
Patricia Archbold, RN, DNSc, FAAN, and Barbara Stewart, PhD, are
Professors at the School of Nursing, Oregon Health Sciences University and
Adjunct Investigators at the Center for Health Research at Kaiser Permanente.
An earlier version of this paper was published as a chapter in a book:
Archbold PG, Stewart BJ (1996) “The nature of the family caregiving role and
nursing interventions for caregiving families”, in E.A.Swanson and T. TrippReimer (Eds.). Advances in Gerontological Nursing, (pp. 133-156). New York:
Springer.
This paper was developed to address, in part, a recommendation
identified in the Paper to the WHO Cabinet (WHO, 1999) entitled “HomeBased and Long-Term Care”. Specifically, this paper contributes to the
evidence base related to home care by reviewing research from the US and UK
on family care for frail elders. Two categories of research are reviewed: 1)
evaluations of interventions to improve family care in the home that could be
adapted to other settings, and 2) descriptive reports about the nature of family
care for frail elders that can lay the groundwork for the development of
intervention strategies as yet untested. This paper assumes that home care for
elders is inherently a public health issue and that strategies to assist and prepare
persons to provide home care can be employed at a district level through
existing structures such as public health nurses.
In the last two decades, two trends have interacted to increase the
salience and visibility of home care for elders. One is the rapid increase in the
absolute number and relative percentage of elders globally. The second is
reliance on home care as a method for reducing hospital utilization. Both
trends have increased the demands placed on family units.
Background
The family is the major provider of long-term and medically related
services to elders in most countries. Home care by family members is
increasingly prevalent in industrialized countries. For example, in 1996, nearly
one in four US households contained at least one person who had provided
unpaid assistance to a relative or friend aged 50 of older (National Allliance for
Caregiving and the American Association for Retired Persons, 1997).
Provision of home care by family members can be very labor-intensive
and long in duration. In the US, about half of the family caregivers for elders
have been providing unpaid assistance for one to four years, and another quarter
have been providing assistance for five years or more. Eighty percent of family
caregivers provide unpaid assistance seven days a week and spend an average
of four extra hours per day—more than a half time job—on family care tasks
(Stone et al., 1987). Estimates indicate that the average care costs incurred by
families of dementia patients were $4,564 for a three-month period, with 71%
of the costs for unpaid labor (Stommel, Collins, and Given, 1994).
Family care to elders is undergoing unprecedented expansion. In 1950,
in the US, the “parent-support” ratio (the number of persons 85 years old and
over, divided by the number of persons 50 to 64 years old, times 100) was
three. By 1993, the parent-support ratio had tripled to ten. By 2050, it is
2
projected to triple again, to 29. Having living parents who are 85 and over will
become commonplace in just over 50 years. Clearly, this dramatic increase in
the parent-support ratio means that the effectiveness of relying on families as
the mainstay of home care for frail elders must be examined in setting social
policy (Boaz and Hu, 1997). In the meantime, we need to find ways to support
the family in its home care efforts.
Typically, families take on home care responsibilities with little or no
preparation from health care professionals. Home care by family members who
are unprepared for and unsupported in their care has been linked to higher acute
care utilization and costs for the elder (Anderson, 1990; Berry and Evans,
1985/86). Despite the health care system’s increasing reliance on the family as
the provider of home care, researchers have not addressed the capacity of the
family to respond to these expectations, or looked at variations in the quality of
family care. Family care for frail elders is sometimes “hidden” from view until
a problem of significant magnitude triggers contact with the health care or
social service systems (Phillips, Morrison, Steffi, Chae, Cromwell, and Russell,
1995).
Provision of home care to frail elders has been found satisfying,
meaningful and rewarding by family caregivers (Farran, 1997; Fredman, Daly,
and Lazur, 1995; Kramer, 1997; Miller and Lawton, 1997). However, it has
also been linked to caregiver stress and role strain (Given and Given, 1991;
Pearlin et al., 1990) and to negative health outcomes (Dura, Haywood-Niler and
Keicolt-Glaser, 1990), including depression (Schulz et al., 1995) and prolonged
grief following the death of the elder (Bass and Bowman, 1990). Families vary
in their responses to providing home care.
Some families do not have
difficulty, while others do. Further, the same family can have difficulty at one
time but not at another time (Archbold and Stewart, 1987). Among families
experiencing difficulty in family care, the areas of difficulty vary considerably.
Some families find providing personal care very hard, while others find that
easy but have difficulty because of the impact of caregiving on other roles.
Families in similar care situations also reported different levels of rewards of
caregiving (Archbold and Stewart, 1988).
Interventions for Elders and Their Family Caregivers
In this background paper we have chosen to describe in detail those
intervention studies that we think are particularly relevant for districts and
countries wishing to support and improve the quality of home care. We have
limited the review to research that includes outcomes for family caregivers. We
have grouped the interventions into seven types: psycho-educational, respite,
health services, comprehensive interdisciplinary home care, transitional care,
telephone, and support groups.
3
work six hours per week (one hour per day) with the patient in the programme.
Experimental families (n = 25) and comparison dyads (n = 28 placebo and n =
25 wait list controls) participated in the study for a period of nine months. Care
recipients in the wait list control declined on the cognitive and behavioural
outcomes, and the experimental group maintained baseline by the nine-month
post-treatment testing. Care recipients in the experimental group actually
exhibited cognitive improvements at the three-month post-treatment testing.
Effectiveness of Psycho-Educational Interventions
Despite the limitations of psycho-educational interventions, they appear
to be effective in reducing strain and depression in some family caregivers.
Knight et al. (1993) conducted a meta-analysis of interventions for caregivers,
including ten controlled studies of psycho-educational interventions that
attempted to change emotional distress in caregivers; emotional distress
included subjective caregiver burden and emotional dysphoria (e.g., depression,
anxiety, hostility). They reported average effect sizes for group interventions
as .15 for burden (5 studies, 95% confidence interval [CI] = -.43 to .73) and .31
for emotional dysphoria (7 studies, 95% CI = -.38 to 1.00). The average effect
sizes for individual interventions were .41 for burden (5 studies, 95% CI = -.04
to .86) and .58 for emotional dysphoria (3 studies, 95% CI = -.17 to 1.33).
Thus, on the average, the group interventions had small effect sizes and the
individual interventions had moderate effect sizes, with a greater effect on
emotional dysphoria than on subjective caregiver burden in both group and
individual interventions. The wide confidence intervals also reflect the degree
to which intervention effectiveness varied across studies, ranging from large.
Positive-effect sizes to small, negative-effect sizes. When effect sizes reported
by Knight and colleagues are summarized by the randomization status of the
studies, the results on effectiveness are less definitive; the median effect size in
studies not fully randomized was .73 (range = .03 to 1.03), whereas the median
effect size in studies where caregivers were randomly assigned to conditions
was only .16 (range = -.22 to .66). Despite mixed results, we believe that
psycho-educational interventions should be included as part of home care
interventions and used when the caregiver has identified a lack of skill in care
activities, high strain or negative affect as a problem.
Respite Studies
Respite care is a method of providing relief to the caregiver from the
burden and strain of home care activities. It includes such interventions as day
care, adult day health, and in-home respite. In some cases, respite involves the
temporary admission of the elder to a hospital or long-term care facility
overnight or for a longer period. With the exception of two studies (Lawton,
Brody, and Saperstein, 1989; Montgomery and Borgatta, 1989), studies of
respite care have not used true experimental designs. In Montgomery and
5
Borgatta's study, 94 caregivers received respite only; 89 caregivers received
respite plus education, a family consultant, and a support group; 85 caregivers
formed the control group. While the findings of Montgomery and Borgatta are
encouraging regarding the beneficial effects of respite in reducing subjective
burden (effect sizes = .74 and .75), the results by Lawton and colleagues
(Lawton et al., 1989) are not as promising with regard to burden (effect size =
.08), perhaps because the comparison group received high levels of respite from
other community sources. However, families with respite care (n = 317) in
Lawton's study maintained the patient with Alzheimer's disease in the
community an average of 22 days longer than families in the control group (n =
315). Because previous research suggests that respite can be beneficial to
families, it is one strategy that should be included in any home care programme.
Comprehensive Home Health Care
The classic experiments in providing comprehensive interdisciplinary
home health care for very frail elders are by Zimmer and colleagues (1985) and
Hughes and colleagues (1990) and, for families of persons with AD, by Mohide
and colleagues (1990). In these studies, in-home services were usually 6-12
months in duration and included nursing, social work, and medical
assessments; skilled nursing care; care planning; 24-hour telephone support;
individualized teaching; support groups; and respite care to relieve caregivers
from the strain of family care activities. The results were promising—patients
who received services had significantly fewer hospitalizations, nursing home
admissions, and outpatient visits than controls (Zimmer) and caregivers
reported greater satisfaction with care (Zimmer and Hughes). However, the
Zimmer, Hughes and Mohide samples were too small (Zimmer: n = 70
experimental, n = 76 control; Hughes: n = 119 experimental, n = 114 control;
Mohide: n = 30 experimental, n = 30 control) to obtain significant differences
on cost (Zimmer and Hughes) and caregiver emotional response (Mohide).
Such comprehensive home health programmes have been found to be beneficial
for frail elders with moderate to severe heart failure (Ekman et al., 1998) and
cancer (McCorkle, 1988).
Transitional Care
One critical time in home care is the period following an acute illness
and hospitalization. Transitional care by nurse specialists was successful in
producing beneficial outcomes in elders who were discharged from the hospital
(Naylor et al., 1994). The total sample included 276 older patients (n =142
with medical diagnoses, and n = 134 with surgical diagnoses) and 125
caregivers. The transitional care administered to those people randomized to the
intervention group (n = 140 patients and 74 caregivers) involved a
comprehensive assessment by the nurse of the functional status of the older
person as well as the primary caregiver’s post-discharge needs. Most care was
6
provided in the hospital and involved at least two visits by the nurse specialist
during the hospitalization. Li addition, the intervention included the availability
of a nurse specialist by phone during and after the hospitalization. Further, the
nurse initiated at least two telephone contacts to the patient within the first two
weeks after discharge. For patients having medical diagnoses, the intervention
group exhibited significantly fewer re-hospitalizations, shorter duration of re
hospitalizations, and smaller charges for re-hospitalizations than the control
group. Differences were not found between the intervention and control
patients with surgical diagnoses. This study indicates the value in placing
nurses with advanced practice skills in a position to provide transitional care
after an elder is hospitalized.
Telephone Advice and Monitoring
Two types of telephone interventions—telephone advice lines and
telephone monitoring— have been used with success in a variety of health care
arenas. Telephone advice lines through which families can receive timely
responses to their health and home care questions from a health provider
familiar with their situation have been used in hospice care since its inception
and with frail elders and their families (Schler, Granadillo, and Vargas, 1985).
Telephone monitoring in which a health professional makes systematic
assessments and, when needed, recommends interventions, has been used
successfully in a broad range of health care situations (e.g., Gortner et al., 1988;
Savage and Grap, 1999). In some of the interventions described earlier (e.g.,
Naylor, 1994; Zimmer et al., 1985), the availability of telephone advice lines
and/or telephone monitoring was included in the system of care. At this point,
we believe that evidence supports the institution of telephone monitoring and
support systems for frail elders and their caregivers, and would encourage
health care delivery systems to include phone advice in their service plans.
Support Groups
We chose to include a section on support groups because they are by far
the most accessible intervention for caregivers in the US, especially caregivers
for persons with Alzheimer’s disease. These groups vary considerably in
purpose and nature, and rigorous evaluation of their effects is difficult because
people self-select into them when they are ready thus creating difficulties for
randomizing to experimental and control conditions. The distinction between
psycho-educational interventions and support-group interventions is blurred,
because most psycho-educational groups provide support and most support
groups provide some education; however, we distinguish psycho-educational
groups from support groups by their more systematic educational focus. Most
evaluations of support groups have been based on anecdotal comments from
participants.
Gonyea (1991), however, examined systematically the
7
relationship between participation in a support group and the caregiver’s sense
of well-being. She concluded that although there were statistically significant
(p < .05) Pearson correlations between support group participation and the three
dependent variables of objective burden, subjective burden, and morale, the
significant rs were small, with absolute values ranging from .10 to .19. Further,
in multiple regression analyses, the strongest predictors of caregiver well-being
were caregiver and elder characteristics. Because of the availability of support
groups, providers may want to recommend them to family caregivers who
express a need to interact with people who share a common family care
experience. This recommendation should be made with the recognition,
however, that the beneficial effects of support groups for elder caregivers have
yet to be demonstrated empirically.
Distinguishing Features of Family Home Care Interventions
We would like to highlight some of the main strengths and limitations of
different types of interventions, in terms of their relevance for home care. Two
strengths of the psycho-educational interventions are that they are the most fully
evaluated of the family care interventions and they are often targeted to specific
family care problems. The comprehensive interdisciplinary interventions have
long-term contact with the family as one important advantage; such sustained
contact allows for monitoring of transitions and for the development of a
therapeutic relationship with families. These comprehensive home health care
interventions also have the advantage of an interdisciplinary approach to care
and care planning that is tailored to the impaired older individuals and their
families, but exactly how those interventions differed from usual care, except
for there being more care, is not well described. In contrast, the interventions
evaluated by the Quayhagen and Mohide research teams were described in
much more detail. While promising, these three studies used small sample
sizes and need to be evaluated in larger intervention trials before affirming their
effectiveness.
In comparing the various types of family care interventions it is clear that
the underlying goals of the interventions vary widely. For example, the goals of
psycho-educational interventions are mainly to provide information, teach
problem-solving skills, and help caregivers deal with their negative responses
to family care (e.g., burden, depression). The goal of respite is to provide relief
from everyday family care. The goals of support groups are to provide
opportunities to obtain support from, and give support to, other caregivers who
share the common experience of family care. The goals of most comprehensive
interventions, transitional care, and telephone interventions are to improve the
well-being of the impaired elders by augmenting care, often around times of
health transitions, and include the goal of improving the way in which
caregivers perform their family care role.
8
Most family caregivers want to do a good job in family care. Thus, they
may be especially open to receiving assistance regarding the care they give.
Home care interventions that focus attention on the way in which care is
delivered by the family caregivers may be particularly helpful to elders and
acceptable to families.
The Family Care Role
In this section we summarize results of descriptive, correlational and
longitudinal research on the nature of the family care role that hold promise for
home care interventions. Home health care providers intervene to help
caregivers reduce burden, strain or depression and also to help family
caregivers improve their ability to carry out the family care role. The nature of
the family care role includes: (a) the type and amount of family care activities
that are done, (b) the way in which the care is provided, and the quality of the
care, and (c) transitions in the care provided.
In our opinion, the nature of the family care role is one of the most salient
variables for home care interventions. The health care provider most often in
contact with families in the community are nurses—themselves skilled
caregivers— who possess knowledge that is useful for family caregivers.
Nurses in many settings have contact with elders and their family caregivers
during times of health transitions; times when caregivers may feel unprepared
for a new aspect of the family care role.
Type and Amount of Family Care Activities
In the last decade, findings from research have helped us understand the
underlying purposes and meanings of the family care role to caregivers (e.g.,
Albert, 1991, Bowers, 1987). Bowers (1987) identified five categories of
family care activities reported by 31 offspring caregivers of impaired elders
including: anticipatory family care (behaviours or decisions based on possible
needs of the parent), preventive family care (activities engaged in to prevent
illness, injury, complications or deterioration in the parent), supervisory family
care (activities such as arranging for, checking on, setting up), instrumental care
(hands-on family care), and protective family care (protect the parent from
threats to his or her self esteem). These findings could serve as the basis for
new home care interventions; for example, health systems could offer courses
for potential caregivers providing information about the range of activities that
might be involved in future family care and sources of support and help for
these activities.
Albert (1991) reported on how family caregivers think about the tasks
they perform. In his study, he treated family care tasks as a cognitive domain,
9
asking caregivers to specify “what sorts of things they do regularly for their
parent”, then eliciting judgments from them of similarities in tasks using a card
sort. Using multidimensional scaling, Albert found that caregivers “think about
the tasks they perform using three cross-cutting sets of distinctions: the type of
impairment giving rise to the task (physical vs. cognitive-emotional limitation);
where the task is performed (within the household vs. outside, involving
others); and whether the task enhances parental autonomy or responds to a
parent’s incompetence” (p. 72). Caregivers did not categorize tasks according
to the extent they were burdensome. Albert concluded that caregivers have an
organized lay or folk understanding of their home care activities that sometimes
differs and sometimes coincides with the view of the clinician or researcher. It
is important, therefore, to try to understand the family care role from the
caregiver’s view.
While evidence suggests that there are many commonalities in family
home care activities across illness categories (Kirschling, Stewart, and
Archbold, 1994), it is also important to understand how family care differs
across these categories. In all disease categories, caregivers provide help with
personal care, transportation, housekeeping and emotional support. On the
other hand, researchers have identified important and clinically relevant
differences in the nature of the family care role such as pain management in
cancer (Given and Given, 1994), managing behaviour problems in dementia
(Pearlin et al., 1990), and assistance because of slowness in moving in
Parkinson’s disease (Stewart et al., 1993).
The Wav in Which Care Is Provided and The Quality Of Care
Currently, we have a great deal of information about what activities
caregivers do, but not a lot of information about the way caregivers do these
activities (Biegel et al., 1991). Intervention planning has been hampered
because of the lack of systematic information describing what caregivers try,
what works, and what does not work. Cartwright and colleagues (1994)
described ways in which caregivers report using enrichment processes to
enhance family care; the two main types of enrichment processes identified
were customary routines (e.g., bedtime rituals) and innovative routine breakers
(e.g., enjoying a special dessert). Gilliss and Belza (1992) described ways in
which caregivers provide comfort to people who have had open-heart surgery.
Comfort measures included: helping the patients get up and out of chairs, beds,
couches, and providing and positioning pillows while the patient is sitting up or
lying down. Harvath (1994) described strategies used by caregivers to manage
dementia-related behaviour problems, including such strategies as going along,
putting off, and guiding.
In contrast to looking at task-specific family care, health care providers
may also benefit from understanding how caregivers organize the totality of the
role they need to perform. Nkongho and Archbold (1996) found that African
10
American caregivers engaged in a process of “working out systems” of care.
These systems facilitated family home care by creating routines of care that
attended to the needs of the older person and other family members and to the
work roles of the caregiver. Caregivers reported that it took time to work out a
system, and that systems had to be modified based on changes in the health
status of the elder or other family members.
At this point, there is no standard measure of the quality of family care in
the home. Work in the area to date has produced tools to detect poor quality
care (e.g., neglect and abuse) (Phillips et al., 1990a, 1990b), but not to measure
the positive aspects of quality. Clinical determination of poor quality care is
confounded by legal issues (e.g., assignment of blame). Because a main goal of
health systems may be to improve the quality of care provided by families, we
think it is very important to develop measures of the quality of family care that
are sensitive to the effects of interventions. Further, although there is some
research linking amount of care provided to burden and strain (Oberst et al.,
1989), little research exists about the association between the family care role
variables of how care is provided and the quality of care and such responses to
family care as burden, strain, rewards and depression.
Transitions in the Care Provided
In a longitudinal study of family care to 103 post-hospitalized elders, one
quarter of caregivers interviewed at six weeks after the discharge reported that
as time went on, family care had become somewhat or much more difficult for
them, indicating difficulty in ongoing family care transitions (Archbold and
Stewart, 1988). Between six weeks and nine months after hospital discharge,
3% of the caregivers died and 16% of the elders died. In the year after entry to
the study, more than 60% of the elders were re-hospitalized-28% were
hospitalized once, 22% were hospitalized two or three times, and 11% were
hospitalized four times or more. These findings illustrate the magnitude and
frequency of transitions that occur in family care. Bull (1992) found that in the
transition from hospital to home care, caregivers worried about: (a) learning
new skills needed to manage the medical condition, (b) modifying the
environment, and (c) changing roles or functions within the family unit.
Caregivers of older persons recently discharged from the hospital reported
that they used multiple sources of information in learning to provide care,
including talking with professionals such as doctors, nurses and social workers
(69%), using a trial and error approach (59%), talking with friends or relatives
(53%), reading books and articles (37%), and a previous job taking care of a
sick or disabled person (15%) (Stewart et al., 1993). Of these information
sources, caregivers reported learning the most about how to take care of the
elder’s physical needs and how to find out about and set up services for the
elder from health professionals.
In sharp contrast, however, health
professionals were one of the two poorest sources of information about taking
11
care of the elder’s emotional needs and handling the stress of family care.
These findings suggest that health professionals may not be addressing
caregivers’ needs to learn how to handle the elder’s emotional problems or the
stress of family care-two important components of the family care role.
Specific disease categories and trajectories have been linked to transitions
within home care. Given and Given (1994), for example, describe the process
of shifting caregiver role responsibilities as the person undergoing cancer
treatment is more or less able to perform their normal and illness-related roles.
The model presented by these authors suggests that the following transitions to,
and within, family care may occur: (a) transition to the acute, diagnosis period,
(b) transitions to and across adjuvant therapies (chemotherapy, radiation,
hormone), and (c) transition to palliative care. Even within one of the treatment
categories (radiation), there may be multiple shifts required in the family
caregiver role because of the patient’s experience of physical (e.g., fatigue) and
psychological effects of the treatment (Oberst et al., 1989).
In acute conditions, the family care role changes with the progression of
the disease, the effects of treatment, and the rate of recovery. For example,
Gilliss and Belza (1992) delineate changes in the priority goal of care and
predominant caregiver work types for each week following cardiac surgery.
Initially, the caregiver’s goal is managing the illness, and the predominant work
types are comfort and monitoring. In the second week, the goal shifts to
managing everyday life, and predominant work types are functional and
monitoring. Similar shifts in priority goals and work types continue through the
fifth post-operative week. Preliminary evidence from the Parkinson’s Spouses
Study indicates that as this chronic disease progresses, caregivers do more of
almost every type of family care activity, even those that one might assume are
part of a regular spousal role, such as sitting and spending time with one’s
spouse (Stewart et al., 1993).
Such findings suggest that when caregivers experience transitions, they
are sometimes faced with issues for which they are unprepared. We think that
transition points may be times when caregivers are especially open to nursing
interventions. Interventions such as Naylor's (1990) may be particularly useful
at such times.
Creating Partnerships With Family Caregivers
Changes in health care financing in many industrialized countries,
including the US and UK, create incentives for providing care in the least
expensive setting—outside hospitals and long-term care institutions. These
changes shift the responsibility of care from the health system to the family or
other informal provider. In light of these changes, it will be important for
health care providers to consider families as partners in the provision of health
care to frail elders, and to develop innovative ways in which to collaborate with
12
families in this endeavor.
Descriptive research has provided a basis for understanding of how
family members create partnerships to manage chronic illness (Corbin and
Strauss, 1988) and how family caregivers view their relationships with nursing
home staff (Duncan and Morgan, 1994).
Recently, nurses and other
professionals have experimented with innovative strategies for developing
partnerships with family caregivers (Harvath et al., 1994) focused on blending
local (family) and cosmopolitan (health care provider) knowledge in developing
and tailoring intervention strategies for family-identified care issues.
Conclusions
In this paper we have argued that health systems have an important role in
providing services to family caregivers and that community and public health
nurses are in an excellent position to provide these educational and support
services.
Finally, based on descriptive and correlational studies of family care,
and a pilot study of nursing interventions to support family caregivers in the
home (Archbold et al., 1995), we recommend the following strategies to
strengthen family care supports.
1. Establish systems for systematically assessing family care. Systematic
assessment of the family care situation is needed to identify family strengths
and family care issues known to be associated with caregiver role strain. Issues
identified through assessment may include unpreparedness and lack of skill for
specific care activities, unpredictability in the care routine, low enrichment, low
mutuality, caregiver role strain, and caregiver and elder health problems.
2. Train health care personnel to focus interventions on the family rather
than an individual patient/client. The management of chronic illness requires
the cooperative efforts of involved family members. Such an approach
enhances the health status and satisfaction of both the elder and family
caregiver.
3. Train health care personnel to work together with families to blend
family and provider knowledge.
Resolution of family care issues is
facilitated by families and health care providers working together to blend their
knowledge to identify issues and generate strategies to solve them. Family
involvement in generating strategies to solve issues is more likely to lead to
success than imposition of strategies by health care providers.
4. Recognize that complex family care issues may require multiple
intervention strategies tailored to the family. Working in partnership, family
members and the health provider can implement and evaluate multiple
strategies that are tailored to the specific family situation until the family care
13
issue is resolved. Interventions are tailored based on elder, family and cultural
characteristics, and family preferences
5. Set up systems to detect problematic transitions in family care. The
final principle is detecting problematic transitions in family care over time.
Transitions occur for many reasons, including illness or death of the elder or
caregiver, a change in the family care environment or the level of support
available to the family. Methods to detect and respond to transitions in family
care include access for the family to a provider familiar with their situation and
periodic monitoring of families for change.
14
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16
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18
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19
ANNEX 1
Guidelines for Development of
Framework for Implementation of
Community-based and In-Home Programmes
for Care of Older Persons
I.
Introduction
Old age perse is not necessarily accompanied by serious illness, disability and
dependence, Advanced age does howet cr mean an increased vulnerability to a
range of potentially disabling conditions. A significant minority of older
persons will experience chronic disabling illness at some time. The public and
private health services available generally to the community may be
inappropriate and insufficient to provide the necessary sen ices to such an older
person and Lhcir family. Care of older persons in the community who exhibit
frailty, chronic illness or disability beyond the capability of immediate family
and other informal support arrangements to satisfactorily cope with calls for a
system of formal in-home assessment, management, rehabilitation and long
term care aimed at maximizing the older persons independence and avoiding
unnecessary institutionalization
These guidelines propose a scries of considerations that should govern the
development of an effective national framework for the implementation of such
programmes.
A comprehensive approach to implementation of community-based, in-home
care programmes must consider both national policy and local organizational
and service issues.
2.
National policy on long term care
2.1
It is important for any community-based services provided by
government, non-profit organizations or die private sector to be planned and
implemented in the context of a comprehensive national system of long-term
care for older persons.
GUIDELINES FOR NATIONAL POLICIES AND PROGRAMME DEVELOPMENT FOR HEALTH OF OLDER PERSONS
49
2.2
It is most common for such systems to be devised for the advice of the
government by a formally established and appropriately structured top level
national advisory council.
2.3
The structure of such an advisory council should reflect the multisectoral
and multidisciplinary nature of the task and the necessary involvement of all
levels of government in partnership with nongovernmental organizations, the
community and families.
2.4
One of the first tasks of such an advisory body is to confirm the
justification for formulation of national policy and establishment of a national
system of long term care by reference to the demography, epidemiology, health
and social care needs of older persons in an ageing population and the potential
impact of ageing on the quality of life, health and well -being of older persons
themselves, their families, society and the implications for national
development.
2.5
Another task of the adv isory body is to set forth, for government adoption,
the basic principles that should underpin the provision of a long term care
system for older persons. Such principles must be drawn up in the context of
each country's political, social and cultural context but as a minimum should
encompass the rights of older persons to access sen ices that: are suitable to
their assessed needs, provide for personal choice, arc comprehensive and
coordinated, and provide high quality, effective and efficient services.
2.6
A further critical consideration at the outset is to establish the appropriate
nature and sources of funding to ensure sustainable long-term care. Here again,
an appropriate funding arrangement possibly incorporating elements of public
funding, social insurance and user payment in various combinations must be
devised taking into account broader national considerations.
3.
Loci of responsibility for long-term care of older persons
3.1
A comprehensive long-term care system providing community-based
in-home care is inev itably a complex arrangement involving health and social
welfare bodies, government authorities and agencies, non-profit and private
organizations, community groups, families and older persons and their
organizations. Such a system also must interact with other major related
national programmes including health and hospital care services, and social
welfare programmes including income security provisions where these are in
place.
GUIDE UNESFOR NAI ION Al POIICIES AND PROGRAMME DEVELOPMENT f OR HEAITH O • Q>0££ PERSONS
Consequently it is essential for the mandates and specific role and
responsibilities of participating sectors, agencies, services and units to
be defined to av oid dispute, overlap and confusion in practice.
3.2
To implement a national system a responsible lead agency should be
designated and provided with tire necessary resources. The need for multisectoral
involvement and wide community consultation should be acknowledged.
3.3
The active involvement of non-profit and private agencies in addition to
the government should be sought to ensure a comprehensive and coordinated
approach to providing care
4.
Identification of needs and establishment of norms for
level ofprovision
4.1
Historically the establishment of levels of provision of care for older persons
has generally been arbitrary and based on ad hoc consideration of the services
provided in the past as a result of demand and supply forces rather than any
rational approach. The determination of needs is a complex process and many
countries have now instituted more formal and structured processes for
determining needs of the community and establishing norms for provision of
long-term care. The definition of needs and the identification of the
characteristics, numbers and location of target populations for long term-care
can be identified through:
• analysis of existing census information, data collections, past sun cys
and studies of older persons and their carers
• community consultations with all 'stakeholders' involved in long-term
care of older persons including older people themselves and their
families
• the conduct of purposely designed new national and local studies and
surveys.
4.2
Through these and other methods national nonns can be formulated that
provide a basis for planning and also for controlling tire future provision of
long-term care services and the balance between different fonns of provisions.
For example using these approaches the Japanese authorities estimated that
about 1.5% of their population aged 65 to 69 years were in need of long term
care rising to 11.5% for those aged 80 to 84 and 24% for those aged 85 years
and over. Such figures when derived can be analysed in conjunction with
demographic projections to identify future requirements for care.
GUIDELINES FOR NATIONAL POLICIES AND PROGRAMME DEVELOPMENT FOR HEALTH OF OLDER PERSONS
51
4.3
Studies throughout the world have identified the family, especially female
children of older persons, as the main source of long term care. Both older
persons and their family members in may studies have expressed':! preference
for in-home care provided principally by family members rather than
institutional care. The burden on family care givers needs to be recognized and
this too can be systematically identified and measured so the need to provide
support to sustain the ability of families to continue this role can be taken into
account.
4.4
It seems likely that tire level of need for long-term care by gender, age and
social circumstances will mostly be very similar from country to countrv
However different social, cultural and environmental circumstances will
prevail Also, variation in existing arrangements and provisions as well as
differing attitudes and expectations means that each country must establish its
own appropriate norms and be prepared to review these periodically as
circumstances and experiences change over time.
5.
Review of existing systems, services and programmes
5.1
Prior to any major development of community-based long-term care for
older persons a comprehensive review of existing programmes and services
should be undertaken in order to establish the baseline situation.
5.2
The following questions among others should be addressed in such a
review:
• What arc lite existing sectors, groups, units, organizations and agencies
involved in the provision of community-based services for older
persons?
• What are the specific programmes and services currently provided?
“ What are the criteria for assessing older persons for provisions of
services?
• What are the financial arrangements for funding and payment for
services provided?
• What arc the arrangements for coordination of services provided to
individuals and what arc the existing relationships and linkages between
various service providers?
5.3
Based on the finding of such a review an assessment of the existing
deficiencies and gaps in service provision should then be made as a basis for
planning and future development.
GUIDELINES FOR NATIONAL POLICIES AND PROGRAMME DEVELOPMENT FOR HEALTH OF OLDER PERSONS
52
6.
Definition of community-based services to be provided
6.1
The range and scojx: of community-based services provided to older persons
and their carers should substantially be defined by the needs analysis carried
out nationally as set out above. There are however a number of basic services
that may be provided in any community-based programme for older persons.
These include the following:
In-home services including:
• assessment
■ home help services (basic housekeeping, cleaning and home duties
assistance)
• delivered meals
■ home nursing
“ assistance with bathing
• personal care
• in-home respite care
" household shopping
• home alterations
• laundry services (especially for incontinent persons)
• certain specialist services such as incontinence support, dementia
support and mobility assistance
• medical assessment and care
Day care services
• assessment
• meals
• bathing and grooming
• recreations
• physical activities
• nursing care
• special dementia care
6.2 The above in-home and day care services may be linked to community
rehabilitation programmes that provide active rehabilitative services including
medical, nursing, allied health and assistive devices services aimed at restoration
and maintenance of function for disabled older persons.
Linkages should also be established with hospital-based services and with
institutional long term care facilities particularly to ensure a continuity of care
as people may move from one mode of care service to another.
GUIDELINES FOR NATIONAL POLICIES AND PROGRAMME DEVELOPMENT FOR HEALTH OF OLDER PERSONS
53
In addition the types of sendees identified above may be linked to broader
preventative and health promotivc activities that may include identification of
'at risk' individuals, screening, health education and health promotion
programmes that may also be directed at well older persons.
Apart from direct care provisions community programmes may extend into
wider activities aimed at maintaining the activity and productivity of older
community dwelling adults in such programmes as older volunteer services,
self help, foster grandparenting schemes and local income generating schemes
for older persons.
6.3
It should be stressed that the above are indicative only and the precise
activities that are included in particular home-care programmes will be
governed by many factors that should be taken into account in national and
local planning and development.
7.
Organizational structures
7.1 As noted above (he level and range of organizations involved in the
provision of long-term care for older persons and especially for communitybasedetr .
be q.: '■ implex. In addition government instrumentalities
may vary according to the size, political and structural organizations of
government in each country. The precise role should be defined for each level
viz. national, provincial and local levels of government where they exist. In
general, national government will be involved primarily in policy, national
guidelines and standards and in funding while provincial and local
government may be involved more directly in provision of services.
7.2 A very common form of structure in provision of community-based care
for older persons is where non-profit organizations arc subsidized by
government to provide services. The type of NGO involved may vary and the
level and range of services provided by individual organizations will also vary
considerably. In these circumstances government have an important role in
ensuring comprehensive coverage and in monitoring and enforcing basic
standards and quality of care.
7.3 Many countries at present do not have clearly articulated national policies
and funding arrangements and subsidy provisions arc not managed systemati
cally. While the requirements for community-based care for older persons is
small and provision is relatively patchy this situation may tend to prevail. As
demand inevitably increases, there becomes an urgent need to systematically
approach the issues from a national and local perspective and the sooner action
is taken by government to put in place the appropriate policies, enact necessary
GUIDELINES FOR NATIONAL POLICIES AND PROGRAMME DEVELOPMENT FOR HEALTH OF OLDER PERSONS
54
.
legislation and plan systematically the better placed any national and
community will be to cope with the ageing of its population and tire needs of
tire community for these services in the future.
7.4 In circumstances where provision of community-based services remain
limited and the national policy and organizational frameworks outlined above
have y et to be developed there is a valid ease for demonstration programmes at
local level to act both as a preparatory exercise to meet future demand and to
help catalyse the progress towards more comprehensive services in the future.
Tire experience of rapidly ageing societies in the Western Pacific Region such
as Japan, Hong Kong (China) and Singapore has been that it is better to put the
necessary structures for comprehensive and coordinated national provision of
long term care for older persons in place in advance of the urgent need for such
sen ices as the increase in proportion and numbers of the older population even
tually demand
8.
Assessment
8.1
Especially in a long-term care system provided by a substantial subsidy
from national government and or long-term care insurance a systematic
approach must be taken to the identification (and certification) of individual
need. A fair and objective system of professional assessment within prescribed
standards for certification is necessary to ensure the most appropriate
application of limited resources and to maximize the efficiency and effectiveness
of the sen ices pres ided. Even if the control of government funded or subsidized
services is not a consideration assessment is essential to establish need and to
ensure the provision of quality of care.
8.2
Assessment in formal sense has been defined as: “A multidimensional,
usually inter-disciplinary, diagnostic process used to quantify an elderly
individual's medical, psy chosocial and functional capabilities and problems with
the intention of arriving at a comprehensive plan for therapy and long term
follow-up”.
8.3
An essential component of assessment to determine need is involvement
of the older persons themseh cs and their carcr(s). Ultimately , the assessment
procedure and subsequent provision of care involve the wishes of the older
person to whom care is to be provided and they should be enabled to make
those decisions with the assistance of the people who arc making the formal
assessment of their need
GUIDELINES FOR NATIONAL POLICIES AND PROGRAMME DEVELOPMENT fOR HEALTH OF OLDER PERSONS
55
8.4
'Die level and sophistication of assessment will depend to a considerable
extent on the nature of tire organizations and the services for which the
individual assessment is being undertaken. It should be recognized however
that assessment is a very central process in provision of quality services to
older persons and as such is a powerful element in influencing their quality of
care and indeed their quality of life and well-being. Wherever possible
assessment arrangements should be coordinated and comprehensive and
multiple assessments by many agencies should be assiduously avoided through
coordinated care arrangements.
8.5
Comprehensive assessment of an older person seen as in need of community
support should incorporate all the following elements Though the degree of
depth to which each factor is pursued will depend on the nature of die assessment
and individual circumstances:
• Demographics
• Social support
- ADIJ1ADL
■ Nutritional Status
• Mental Health Status - mood & cognition
• Sleep
• Health related behaviours
" Medical history
• Medication
• System Review
• Physical examination & pcrfonnancc-bascd functional assessment
• Financial circumstances
• Psychosocial rclationships'clder abuse
• Carcgivcr(s)
• Physical environment including home itself
• Conununity resources
Other specialist assessment such as diagnostic and laboratory testing may be
undertaken as dictated by the specific health and medical circumstances of the
individual and the judgement of their medical care adviser.
8.6
Assessment procedures and documentation must be established to include
these elements and others that may be necessary for particular programmes.
This comprehensive approach to assessment serves a number of key functions
including:
•
•
. ..
Allocation of scarce resources on basis of demonstrated need
Matching of needs to correct care options
?*T|ONAL POLICIES^AND PROGRAMME DEVELOPMENT FOR HEALTH OF OLDER PISONS
Providing data base for:
planning individual programmes of care,
needs-based planning,
identification of gaps in service,
evaluation, and
meeting reporting requirements of authorities.
9.
Coordination of care
9.1
'With development of community-based care services for older persons it
has become apparent from the experience of many countries that, as programmes
arc developed and expanded frequently under differing auspices older people
and their carers may be faced with a bewildering array of different programmes
and multiple organizations. In addition many programmes in these
circumstances will have individual mechanisms for care assessment.
9.2
A major problem with the provision of multiple programmes in the
community is the potential for overlap, duplication, even unproductive
competition, and sometimes conflicting provision of specific services to
individuals.
9.3
A comprehensive system of provision of community-based services needs
to be supported by a systematic approach to assessment in tire first instance
followed by an organized method of developing a care plan tailored to
indiv ideal needs and dev eloped in consultation with the older person and their
informal carer
9.4
Once an appropriate care plan has been agreed it is necessary to ensure
that care arrangements are managed efficiently and arc periodically reviewed.
Assessment should be seen in this arrangement as an ongoing process that helps
monitor the older persons' changing circumstances and needs and make provi
sion for adjustment of any care plan according to any change in circumstances.
10.
Quality assurance
10.1
All community -based services for older persons should be supported by
a system of continuous quality management.
10.2 Outcome standards should be established for all services provided and a
system of monitoring and improving quality of care should be instituted.
GUIDdltKS fOR NATIONAI f OllClES ANO pgOGRAMME OEVEIOPMENI fOR HEAUH Of OlOER PER,5-°^S-
.... ____ n........-2—______ ____ _
57
II.
Human resources development
11.1 All personnel working in community-based programmes should receive
appropriate basic training and be given the opportunity of continuing education
to maintain knowledge and skills.
11.2
Training opportunities should also be extended to volunteer personnel.
11.3
Training should also be made available to prepare and help infonnal
carers to more effectively carry out their functions in providing ongoing
care and assistance in the home.
12.
Evaluation and planning
12.1 The introduction of new scrriccs especially as a part of
demonstration programmes should incorporate built-in plans for evaluation at
the outset.
12.2
Evaluation is essential to test the efficacy and the efficiency of
community-based interr entions and care and to assist in the determination of
the wider application of the sen ices and programmes developed on a trial
basis.
12.3 Evaluations may have both a summativc purpose (designed to test and
report on tire extent to which a service or programme has achier cd the
objectives set for it) and formative purpose (designed to pror ide guidance on
the further development and directions of a service or programme).
13.
Research and development
13.1 Conununity-based care for older persons is in many circumstances in an
early stage of development. It is important to provide the necessary conceptual
and factual underpinning of programmes and services being provided
Systematic collection of data and its scientific analysis is essential to support
the formulation of conununity needs and to measure the impact and outcomes
of services provided.
GUIDELINES FOR NATIONAL POLICIES AND PROGRAMME DEVELOPMENT FOR HEALTH OF OLDER PERSONS
58
13.2
The ongoing development of community-care sendees for older persons
should be guided by information obtained through evaluation as mentioned
above and through a systematic approach to epidemiological and health
systems (operational) research in the field.
13.3
Cross-national and international collaborative efforts in research should
be encouraged so that the experience of other countries that may be at different
levels of development in terms of their community-based services for older
persons can share experience, technical expertise and findings to mutual
benefit.
GUIDELINES FOR NATIONAL POLICIES AND PROGRAMME DEVELOPMENT FOR HEALTH OF OLDER PERSONS
59
LTH/HSC/SG/99.4-I, Rev. I
WORLD HEALTH ORGANIZATION
ORGANISATION MONDIALE DE LA SANTE
Study Group on Home-Based and Long-Term Care
Ma’ale Hahamisha, Israel, 5-10 December 1999
7 December 1999
PROVISIONAL LIST OF PARTICIPANTS
AFRO:
Guinea Bissau
Dr Maria da Conceitno Lopes Ribeiro, Directrice du Centre de Sante de Ciele
-Bissau,
Ministere de la Sante et des Affaires Sociales, C.P. 50, Bissau, Republique
Guinee-Bissau. Tel: +245 201107, Fax: + 245 201179, E-M Error IBookmark not
defined.
Kenya
Dr Dan Kaseje, C.O., Executive Director, CHAK, and Director, Tropical Institute of
Community Health and Development in Africa, P O Box 30690, Nairobi, Kenya.
Tel +254 2 441 920, Fax +254 2 440306, E-M Error (Bookmark not defined.
AMRO/PAHO:
Peru
Dr Jos1 L Aguilar Olano, Laboratorio de Immunodiagnostico, Universidad Peruana
Cayetano Heredia, Box 4314, Lima 100, Peru. Tel +51 1 482 2557,
Fax +51 1 482 2610, Cell +51 1 992 5786, Home Tel +51 1 275 6904
E-M Error IBookmark not defined.
Canada
Ms Betty Havens, Professor and Senior Scholar, Department of Community Health
Sciences, University of Manitoba, SI 10B—750 Bannatyne Ave.,
Winnipeg, MB R3E OW3, Canada. Tel +1 204 789 3427, Fax +1 204 789 3905,
E-M Error iBookmark not defined.
EMRO:
Palestine
Dr Hikmat Ajjuri
Director General, Palestine Council of Health, P O Box 51681, Jerusalem. Israel.
Tel +972 2 627 6001, Fax +972 2 627 4059, E-M Error '.Bookmark not defined.
EURO:
Israel
Dr Jack Habib, Director
JDC Brookdale Institute of Gerontology and Fluman Development
JDC Hill, P O Box 13087, Jerusalem 91130, isranl.
Tel +972 2 655 7400, Tel. Direct: +972 2 655 7444, Fax +972 2 563 5851,
E-M Error 'Bookmark not defined.
United Kingdom
Professor Deborah A. Flennesey
Developing Health Care, 12 The Close, Union Road, Bridge, Canterbury,
Kent CT4 5NJ, Royaume-Uni de Grande Bretagne et dTrlande du Nord.
Tel/Fax +44 1227 831 842, E-M Error iBookmark not defined.
SEARO:
India
Dr Mohan K. Isaac, Professor & Plead, Department of Psychiatry
National Institute of Mental Health & Neurosciences, Post Bag No. 2900, Bangalore,
560 029, Inde. Tel +91 80 664 2121, ext. 2253, Fax +91 80 663 1830
E-M: Error iBookmark not defined.
WPRO:
Republic of Korea
Dr Euisook Kim, Director, Nursing Policy Research Institute, and Professor,
Yonsei University College of Nursing, CPO 8044, Seoul, R’publique de Core.
Tel +82 2 361 8139, Fax, +82 2 393 3727, E-M: euisook906@yumc.yonsei.ac.kr
Temporary address until end February 2000: Apt #102, S K M Apt, 23 Soi Soonvijai
1, New Petchburi Rd, Bangkok 10320, Thailand. Tel +662 318 9157,
Fax, +662 412 8415, E-M: freki@mahidol.ac.th
Cambodia
Dr Youk Sambath, Deputy Director of Budget & Finance Department, Health Sector
Reform Project Accountant, Ministry of Health Cambodia, 151-153 Kampuchea Krom
Blv, Phnom Penh City, Cambodge. Tel +855 23 880406, Fax +855 23 880407,
E-M Error iBookmark not defined.
LTH/HSC/SG/99.4-1, Rev. 1
2
Representatives of WHO Regional Offfices
AFRO
Dr James Mwanzia, Acting Regional Adviser/District Health Systems
The World Health Organization, Regional Office for Africa (AFRO)
Parirenyatwa Hospital, P.O. Box BE 773, Harare, Zimbabwe.
Tel +263 407 69 51 or 470 74 93, Fax +263 479 01 46 or 479 12 14
E-M: Error !Bookmark not defined.
SEARO
Dr Duangvadee Sungkliobol, Regional Adviser for Nursing and Midwifery
The World Health Organization, Regional Office for South-East Asia
(SEARO), World Health House, IP Estate, Ring Road, New Delhi 1 10 002,
India. Tel +91 11 331 7804, Ext 322, Fax +91 11 331 8607,
E-M Error IBookmark not defined.
WPRO
Ms Kathleen Fritsch , Nurse Educator/Administrator in Fiji
c/o The Regional Director, The World Health Organization
Regional Office for the Western Pacific (WPRO)
P.O. Box 2932,1000 Manila, Philippiines.
Tel +632 528.80.01, Fax +632 521.10.36 or 536.02.79
E-M: Error iBookmark not defined.
World Health Organization
Dr Miriam J. Hirschfeld, (Secretary)
Special Adviser to Executive Director, Home Based and Long-Term Care,
Social Change and Mental Health LTH/HSC, The World Health Organization,
Avenue Appia 20, Room V-220, 1211 Genuve 27, Switzerland. Tel +41 22 791 2507,
Fax +41 22 791 4839, E-M Error IBookmark not defined.
Ms Jenny Brodsky, (Temporary Adviser)
JDC Brookdale Institute of Gerontology and Human Development, JDC Hill,
P. O. Box 13087, Jerusalem, 91130, Israel. Tel +972 2 655 7400,
Tel. Direct: +972 2 655 7459, Fax +972 2 635851, E-M: Error IBookmark not
defined.
Dr Naeema Al-Gasseer, Senior Nursing and Midwifery Scientist
Organization of Health Services Delivery, Evidence and Information for Policy,
OSD/EIP, The World Health Organization, Avenue Appia 20, Room 5014,
1211 Genuve 27, Switzerland. Tel +41 22 791 2325, Fax +41 22 791 47 47,
E-M Error IBookmark not defined.
Dr Irene Hoskins, Senior Officer
Ageing and Health, Social Change and Mental Health AHE/HSC
The World Health Organization, Avenue Appia 20, Room V-221, 1211 Genuve 27
Switzerland. Tel +41 22 791 3486, Fax +41 22 791 4839, E-M Error IBookmark
not defined.
LTH/HSC/SG/99.4-1, Rev. 1
3
Mrs Linda Burgess, (Technical Assistant)
Home Based and Long-Tenn Care, Social Change and Mental Health LTH/HSC
The World Health Organization, Avenue Appia 20, Room V-222, 1211 Genuve 27,
Switzerland. Tel +41 22 791 2446, Fax +41 22 791 4839, E-M Error iBookmark
not defined.
Ms Helena Mbele-Mbong (Technical Assistant)
Nursing and Midwifery, Department of Organization of Health Services Delivery,
The World Health Organization, Avenue Appia 20, Room 5016, 1211 Geneva 27,
Switzerland. Tel: + 41 22 791 3747, Fax:’+ 41 22 791 4747,
E-M: Error (Bookmark not defined.
Observers
Gillian Biscoe, 622 Sandy Bay Road, Sandy Bay, Tasmania, Australia.
Tel> + 61 3 6225 4710, Fax: + 61 3 6225 0740, E-M: Error iBookmark
not defined..
Dr Mark Clarfield, Chief, Division of Geriatrics, Ministry of Health, P.O.
Box 1176, Jerusalem 91010, Israel. Tel. +972 2 568 1254.
Ms Ilana Mizrahi, Researcher, JDC Brookdale Institute of Gerontology
and Human Development, JDC Hill, PO Box 13087, Jerusalem 91130,
Israel.
Tel: + 972 2 655 7480, E-M: Error iBookmark not defined..
Dr Yitzhak Sever, Director, Division of General Medicine, Coordinator
for WHO Affairs in the Division of International Relations, Focal point
of WHO for health systems and delivery of health services, Ministry of
Health, POB 1176, Jerusalem 93591, Israel. Tel: +972 2 568 1274/8, Fax:
+ 072 2 672 5821.
Dr Rebecca Adams Stockler, Professor emerita, Department of Nursing,
Tel Aviv University, Ramat Aviv, Tel Aviv, Israel.
Dr Tamar Krulik, Department of Nursing, Tel Aviv Univeristy, Ramat
Aviv, Israel. Tel: +972 3 640 9497, Fax: +972 3 640 9496, E-M: Error!
Bookmark not defined..
Mr Uzi Manor, Director, International Organization Division, Ministry
for Foreign Affairs, Jerusalem, Israel.
LTH/HSC/SG/99.4-1, Rev. 1
4
Dr Iris Rasooly, Head, Community Services, Division of Geriatrics,
Ministry of Health, Israel. Tel: +972 2 5681255, Fax: + 972 2 672 5811,
E-M: Error 'Bookmark not defined..
LTH/HSC/SG/99.4-1, Rev. 1
5
LTH/HSC/SGAVD3-1
WORLD HEALTH ORGANIZATION
ORGANISATION MONDIALE DE LA SANTE
Study Group Home Based And Long Term Care
Ma’ale Hachamisha, Israel, 5-10 December 1999
30 August 1999
PROVISIONAL PROGRAMME
1.
Sunday
5 December 1999
5:00-6:00
6:00-8:00
2.
Monday
6 December 1999
9:00-9:30
9:30-10:30
10:30-11:00
11:00-12:30
Opening
Overview
Review of Study Group Objectives and mode of work
Refreshment
Discussion on elements and scope of home care including
necessary basic resource availability in the home.
12:30-1:30
Lunch
1:30-3:00
Overview of home care initiatives in the WHO Regions
AFRO
AMRO
EMRO
Refreshment
Overview of home care initiatives in the WHO Regions
EURO
SEARO
WPRO
3:00-3:30
3:30-5:00
3.
Registration
Informal Get-together and exchange of views
Tuesday
7 December 1999
9:00-9:30
9:30-10:30
10:30-11:00
11:00-12:30
Review of previous day’s work
Sectoral and inter-sectoral policies on home care
Refreshment
Discussion on implications for countries at different levels of
development and different epidemiological/demographic
profiles
12:30-1:30
Lunch
LTH/HSC/SG/WD3-2
1:30-3:00
3:00-3:30
3:30-5:00
4.
Wednesday
8 December 1999
9:00-9:30
9:30-10:30
10:30-11:00
11:00-12:30
Review of previous day’s work
Organization/management of health services, basic material
resources and human resources (formal and informal)
Refreshment
Discussion on implications for countries at different levels of
development and different epidemiological/demographic
profiles
12:30-1:30
Lunch
1:30-3:00
Organization/management of health services, basic material
resources and human resources (formal and informal)
Refreshment
Discussion on implications for countries at different levels of
development and different epidemiological/demographic
profiles
3:00-3:30
3:30-5:00
5.
Financing of home care
Refreshment
Discussion on implications for countries at different levels of
development and different epidemiological/demographic
profiles
Thursday
9 December 1999
9:00-9:30
9:30-10:30
10:30-11:00
11:00-12:30
Review of previous day’s work
Home Care and the Life Cycle: Review implications for
policies and financing of home care
Refreshment
Discussion on implications for countries at different levels of
development and different epidemiological/demographic
profiles
12:30- 1:30
Lunch
1:30-3:00
Home Care and the Life Cycle: Review Implications for
organization/management of health services, basic material
resources and human resources (formal and informal)
Refreshment
Discussion on implications for countries at different levels of
development and different epidemiological/demographic
profiles
3:00-3:30
3:30-5:00
LTH/HSC/SGAVD3-3
6.
Friday
10 December 1999
10:30-11:00
11:00-12:30
Review of previous day’s work
Discussions and recommendations in relation to countries at
different levels of development and different epidemiological
/demographic profiles
Refreshment
Discussions and recommendations, continued
12:30-1:30
Lunch
1:30-3:00
3:00-3:30
3:30-4:30
Discussions and recommendations, continued
Refreshment
Approval of Recommendations and Outline of Study Group
Report
Closing
9:00-9:30
9:30-10:30
4:30-5:00
WORLD
HEALTH
ORGANIZATION
Telephone central/Exchange:
Direct:
fi
ORGANISATION MONDIALE DE LA SANTE
791. 21.11
791
With the compliments
ofthe
Director-General
Avec les compliments
Dr Mohan K. Issac
Professor & Head, Department of Psychiatry
National Institute of Mental Health &
Neurosciences
Post Bag No. 2900, Bangalore 560 029
Inde
Dear Dr Issac,
du
Directeur general
and
Dr Miriam Hirschfeld
Special Adviser to the Executive Director
Social Change and Mental Health
3
November 1999
Please find initial background documentation
for the Study Group on Home Based and
Long-Term Care to be held 5-10 December
1999 in Ma'ale Hahamisha, Israel.
CH-1211 GENEVA 27-SWITZERLAND Tclcgr.: UNIS ANTE-GENEVA Telex: 415416 OMS Fax 791.07.46 CH-1211 GENEVE 27-SUISSE TcSlegr.: UNISANTE-GENEVE
LTH/HSC/SG/99.1-1
WORLD HEALTH ORGANIZATION
ORGANISATION MONDIALE DE LA SANTE
Study Group Home Based And Long Term Care
Ma’ale Hahamisha, Israel, 5-10 December 1999
5 November 1999
PROVISIONAL AGENDA
1.
Opening of Meeting, Executive Director’s Speech
2.
Adoption of Agenda
3.
Review of Study Group Objectives and Mode of Work
3.1
3.2
4.
Sectoral and inter-sectoral policies on home care
4.1
5.
Discussion on implications for countries at different levels of development
and different epidemiological/demographic profiles
Organization /management of health services
5.1
5.2
6.
Discussion on elements and scope of home care
Overview of home care initiatives in WHO Regions
Discussion on basic material resources and human resources (formal and
informal)
Discussion on implications for countries at different levels of development
and different epidemiological/demographic profiles
Home Care and the Life cycle: Review of implications for policies and financing of
home care.
6.1
Discussion on implications for countries at different levels of development
and different epidemiological/demographic profiles
7.
Recommendations
7.1
Discussion and recommendations in relation to countries at different levels of
development and different epidemiological/demographic profiles
7.2
Approval of Recommendations and Outline of Study Group Report.
8.
Closing Speech
LTH/HSC/SG/99/List of Working Documents
WORLD HEALTH ORGANIZATION
ORGANISATION MONDIALE DE LA SANTE
Study Group Home Based And Long Term Care
Ma’ale Hahamisha, Israel, 5-10 December 1999
5 November 1999
LIST OF STUDY GROUP WORKING DOCUMENTS
LTH/HSC/SG//99-WD
List of Working Documents
LTH/HSC/SG//99/1-1
Provisional Terms of Reference
LTH/HSC/SG//99/2-1
Provisional Agenda
LTH/HSC/SG//99/3-1/3-3
Provisional Programme
LTH/HSC/SG//99/4-1/4-3
Provisional List of Participants
COM H
LTI l/HSC/SG/99/List of Working Documents, Rev, ]
WORLD HEALTH ORGANIZATION
ORGANISATION MONDIALE DE LA SANTE
Study Group on Home-Based and Long-Term Care
Ma’ale Hahamislia, Israel, 5-10 December 1999
7 December 1999
LIST OF STUDY GROUP WORKING DOCUMENTS
LTH/HSC/SG//99, Rev.l
List of Working Documents
LTH/HSC/SG//99.1-1
Terms of Reference
LTH/HSC/SG//99.2-1
Provisional Agenda
LTH/HSC/SG//99.3-1
Provisional Programme
LTH/HSC/SG//99.4-1, Rev.l Provisional List of Participants
LTH/HSC/SG/99/1
Archbold PG and Stewart BJ. Strengthening family-based care
for frail elders: lessons from U.S. and U.K. research.
LTH/HSC/SG/99/2
The invisible heart - care and the global economy. In: The
Human development report 1999, chapter 3. New York,
Oxford University Press, Published for the United Nations
Development Program, 1999.
LTH/HSC/SG/99/3
Health care is homeward bound. World health. July-August
1994, No. 4.
LTH/HSC/SG/99/4
Issues in home care services. Issues in informal care. In: Social
Policy Studies, No. 19, Caringforfrail elderly people, policies
in evolution, chapters 4 and 5. Paris, Organisation for
Economic Co-operation and Development, 1996.
LTH/HSC/SG/99/5
Home-based long-term care. Paper to Cabinet, Social Change
and Mental Health. World Health Organization, 25 May 1999.
-X LTH/HSC/SG/99/6
Confronting AIDS: public priorities in a global epidemic.
Washington DC, The International Bank for Reconstruction
LTH/HSC7SG/99.3-2
and Development and The World Bank, 1997 (A World Bank
policy research report).
LTH/HSC/SG/99/7
Sungkliobol D. Home care initiatives in the WHO South-East
Asia Region.
LTH/HSC/SG/99/8
Fritsch K. Western Pacific Region overview of work in progress
and major concerns on home-based and long-term care
(expanded version [copy without cover]).
LTH/HSC/SG/99/9
Home care issues - AMRO-PAHO.
LTH/HSC/SG/99/10
Mwanzia IN. Review of regional experiences and major
concerns on home-based and long-term care in the African
Region.
WHO/HSC/LTH/99.1
Flavens B. Home-based and long-term care; home are issues at
the approach of the 21st century from a World Health
Organization perspective: an annotated bibliography. Geneva,
World Health Organization, 1999 (unpublished document).
WHO/HSC/LTH/99.2
Havens B. Home-based and long-term care: home care issues
and evidence. Geneva, World Health Organization, 1999
(unpublished document).
ISSA/CONF/BRAT/99
Scheil-Adlung X. Health: new requirements for long-term care.
Conference paper, International Social Security Association:
“Demographic trends and globalization: Challenges for social
security”. Bratislava, Slovak Republic, 14-15 October 1999.
Annex 1: Guidelines for development of framework for
implementation of community-based and in-home programmes
for care of older persons. In: Guidelines for national policies
and programme development for health of older persons in the
Western Pacific Region. Manila, World Health Organization
Western Pacific Region, 1998.
-
Aging in developing countries: source materials and highlights
from the literature. Jerusalem, JDC-Brookdale Institute,
December 1999.
LTH/HSC/SG/99/List of Working Documents, Rev. 1
2
■; ' ,y. Ageing and Health Programme
: World Health Organization
Towards
an International Consensus
* on Policy for Long-Term Care
of the Ageing
V.’ m/hSC/AHE/00.1
Distr.: General
Orig.: English
. Memorial Fund, 2000
© Copyright World Health Organization and the Milban ‘
Qrganization (WHO), and all
This document is not a formal publication of the World Hea oiwever, be freely reviewed,
rights are reserved by the Organization. The document rna^Il not f°r sa e nor or usc in
abstracted, reproduced and translated, in part or in whole
conjunction with commercial purposes.
responsibility of those
The views expressed in documents by named authors are so
authors.
Ageing and Health Programme
World Health Organization
WHO/HSC/AHE/OO. 1
Milbank Memorial Fund
Towards
an International Consensus
on Policyfor Long-Term Care
ofthe Ageing
Distr.: General
Orig.: English
Table ofContents
3
Foreword
Hp|^“’ '-^K_,
5
Rationale
6
Definition ofLong-Term Care
7
Priority Issuesfor Long-Term Care and Guiding Principles for Policy
’ --- J
-'
7 Issue 1. Personal and Public Values
16
8
Issue 2. Private- and Public-Sector Roles and Responsibilities
9
Issue 3- Public Education
10
Issue 4. Caregiver Roles, Responsibilities, and Rights
12
Issue 5- Infrastructure: LTC Systemsfor Provision ofSocial and Health Care Services
13
Issue 6. Income Security and Financing LTC Systems and Services
14
Issue 7. Current and Future Technologies
15
Issue 8. Research, Data Collection, and Strategic Analysis
Invitation to Comment on the Guiding Principles
inside back cover
2
Acknowledgments
Foreword
This report describes initial actions in devising an international consensus on policy
for long-term care for frail elderly persons. The report is the work of policy makers
and experts from 11 countries, convened by the Ageing and Health Programme of
the World Health Organization (WHO) and the Milbank Memorial Fund. The
Ageing and Health Programme’s main aim is to promote principles that can ensure
the attainment of the highest possible quality of life in older age for the largest
possible number of people. The Fund is an endowed philanthropic foundation,
established in New York in 1905, that works with decision makers in the public and
private sectors on significant issues in health policy. Persons who participated in
writing this report are identified in the Acknowledgments.
The report describes principles to inform policies for sustainable programs in long
term care that are consistent with the priorities of individual countries, whether
industrialized or developing. The Director-General of WHO, Dr. Gro Harlem
Brundtland, addressed the theme of this report when she launched the
International Day of Older Persons in October 1999. “Older persons,” she said,
“who are in need of care are the ones who most need...leadership in developing
right and affordable policies to ensure dignity and quality of life.”
The members of the group that prepared this report emphasize that it is a first,
incomplete step toward an international consensus on guiding principles for policy.
On their behalf, we invite readers of this report to comment on it and particularlv
to offer principles and issues for inclusion in future editions. Comments can be
addressed to either WHO or the Fund, either by mail, fax, or e-mail, as listed on the
back cover of the report.
Daniel M. Fox
President
Milbank Memorial Fund
Alexandre Kalache
Chief, Ageing and Health Programme
World Health Organization
3
Preamble
Recognizing the Universal Declaration of Human Rights, the Vienna International
Plan of Action on Ageing (IPAA), the United Nations (UN) Principles for Older
Persons, and subsequent international research and police efforts, the Ageing and
Health Programme of the World Health Organization (WHO) and the Milbank
Memorial Fund (MMF) agree that a consensus is emerging among international
policy makers concerning the provision of long-term care for older persons in need.
This coincides with the UN International Year of Older Persons 1999 and
underscores the relevance of its theme, “towards a society for all ages.” Within this
framework, a conference in July 1998, jointly convened by WHO and MMF in
Divonne les Bains, France, resulted in an agreement between the two organizations
to prepare a consensus statement that would initiate the development of a coherent
international policy on long-term care.
Seventeen years have passed since the World Assembly on Ageing adopted the
IPAA, which was subsequently endorsed by the UN General Assembly. As the first
international policy document on ageing to be adopted by consensus, the plan has
guided the formulation and enactment of policies and programmes worldwide. It
was designed to strengthen the capacities of governments and civil society to deal
with the dependency needs of ageing populations while also promoting older people
as vital resources for societies. The IPAA is an important part of a series of policy
documents, including the UN Principles for Older Persons adopted in 1991,
developed by the international community with the aim of promoting lifelong
development and improving the quality of life of all older persons.
The International Long-Term-Care Initiative builds upon the foundations of the
IPAA and the UN Principles for Older Persons. The concerns of older persons who
need long-term care are the focus of this document, which encourages regional and
international cooperation to secure older persons’ independence, participation, care,
self-fulfillment, and dignity.
In particular, this joint WHO/MMF initiative addresses two areas of concern: the
importance of institutional arrangements for continued lifelong development, and
the sustenance and care of older persons who require long-term care. An older
person requiring long-term care should be
able to live with dignity while maintaining
the highest level of functioning, regardless of
The meeting participants ofthe International Long-Termthe setting in which care is provided. In
Care Initiative believe, at a minimum, that policies must
addition, the initiative recognizes that the
address thefollowing issues:
considerable physical, psychological,
► personal and public values;
economic, and social toll exacted from family
caregivers should be addressed. Attention to
► private- andpublic-sector roles and responsibilities;
the improvement of existing institutions
► public information and education;
must be paralleled by consideration of the
► provision offormal and informal care, which includes
situation of individual caregivers and care
training both formal and informal caregivers;
recipients.
► an infrastructure oflong-term-care (LTC) systems to
provide social and health care services;
► income security and LTCfinancing;
► current andfuture technolog)’;
► research, data collection, and strategic analysis;
► quality assurance, designed to satisfy both care
recipients and caregivers.
The Internationa] Long-Term-Care Initiative
framework document defines long-term care,
lists the most critical issues, and outlines the
guiding principles for policy development.
Rationale
Although current health care promotion and prevention practices have been
devised with the goal of producing a healthier older population, long-term care for
frail and/or disabled elderly people will always be needed. In the United States, for
example, the probability of LTC institutionalization sometime during a person's
lifetime is 17% for persons aged 65 to 74 years, but rises to 60% for those older
than 85 years. In Norway, 25% of people 80 years of age and older are in nursing
homes. In a comparison of ten developed countries, between 2% and 5% of elderly
people (65 years of age and older) reside in nursing homes.1 There are not enough
available data to permit comparison with the situation in developing countries.
In addition to the social and demographic shifts that are compelling many countries
to reform their LTC policies, rising health care costs and gender inequity issues, as
well as changing family and work, patterns, are compounding the need to readdress
and rethink future LTC provision.
An international statement on care should
provide a manageable strategic framework
for developing policy' and implementing
sustainable programmes that are consistent
with the policies of individual governments.
Information on policies and programmes in
developing countries is scarce; many' of
these countries rely on the experiences.
both positive and negative, of developed
countries when formulating their policies.
Each country' or community' trill have to
extract what they need from the document
and adapt the suggested policies and
programmes in accordance with their own
priorities and capacities.
It is not enough to measure institutional
care alone, as the extended family' is often
the primary provider of care to persons
with chronic diseases and disabilities.
Although it is difficult to calculate future
LTC needs, the substantial recent increases in life expectancy’ in old age, which are
projected to continue, may lead to increasing demand for supportive services and
programmes for older persons and their family caregivers. The extent of the
demand, however, will depend on the outcomes of current and future health
promotion and public health practices and their impact on disability-free life
expectancy.
Few governments have implemented a comprehensive LTC policy' for older persons
or their family caregivers. However, many countries have established channels of
national, state, provincial, and/or private responsibility for the LTC needs of older
adults and, in some instances, their informal caregivers. Some products of their
concern are income security' programmes, medical care and/or medical insurance,
mixtures of public and private LTC policies, and housing policies. Specificallv
needed are plans for home care, respite care, institutional care, and sheltered
housing arrangements.
Participants at the Divonne les Bains conference agreed to focus on the needs and
particular circumstances of older persons requiring care, their informal and formal
caregivers, and LTC systems.
1 Ribbe, MW, et al. Nursing homes in 10 nations: a comparison between countries and settings.
Age and Ageing, 1987, 26-S2:3-12.
Definition ofLong-Term Care
Long-term care is the system of activities undertaken by informal caregivers (family,
friends, and/or neighbours) and/or professionals (health, social, and others) to
ensure that a person who is not
fully capable of self-care can
maintain the highest possible
quality of life, according to his or
her individual preferences, with the
greatest possible degree of
independence, autonomy,
participation, personal fulfillment,
and human dignity.
An older person’s need for LTC is
influenced by declining physical,
mental, and/or cognitive functional
capacities. Although the tendency is
for progressive loss of capacity with
increasing age, there is evidence, at
least from some countries, that
disability rates among older persons
are decreasing and that declines or losses are not irreversible. Some older persons
can recuperate from loss and reclaim lost functional capacities. Therefore, duration
and type of care needs are often indeterminate and will require individually tailored
responses.
Important elements ofLTC include, but are not limited to.
thefollowing:
► maintenance of involvement in community, social,
andfamily life;
► environmental adaptations in bousing and assistive
devices to compensatefor diminishedfunction;
► assessment and evaluation ofsocial and health care
status, resulting in explicit care plans andfollow-up by
appropriate professionals and paraprofessionals;
► programmes to reduce disability orpreventfurther
deterioration through risk-reduction measures and
quality assurance;
► care in an institutional or residential setting when
necessary;
► provision for recognizing and meeting spiritual,
emotional, andpsychological needs;
► palliative care and bereavement support as necessary
and appropriate;
► support forfamily, friends, and other informal
caregivers;
► supportive services and care provided by culturally
sensitive professionals and paraprofessionals.
6
Older people who require LTC should also
have access to other services, such as acute
medical and mental health care, along with
financial, social, and legal support.
Concomitantly, their informal caregivers
should have access to supportive services,
which may include information and
assistance in securing help, caregiving
training, and respite.
Priority Issuesfor Long-Term Care
and Guiding Principlesfor Policy
This initiative incorporates broad issues and general principles for consideration
that are believed to reflect universal and fundamental human values. A coordinated
approach to policies that address LTC recognizes the interconnectedness of all
aspects of the ageing process and of the context within which an older person lives.
It is recognized, however, that integrating these areas into a broader framework of
policies and programmes of action will pose a significant challenge. Comprehensive
reforms may begin, necessarily, with smaller, carefully conceived, and incremental
improvements in LTC. This section presents guiding principles for comprehensive
LTC policies that address the needs of older persons who require these services.
Issue 1. Personal and Public Values
Because of the increasingly diverse nature of contemporary society, many
communities around the world will be forced to respond to the differential LTC
requirements of older persons and their families within their current and future
resources. The interpretation and expression of chronic disease and disability may
differ within cultures or regions, yet some basic tenets are universal. The
corresponding need for care and assistance and the approaches to dividing the
responsibility for providing this care among the individual, the family, and the
larger society vary widely.
GUIDING PRINCIPLE 1. With due attention to
the appropriate balance of private and public
responsibilities, each community should be able
to determine objectively the level and kind of
assistance required by an older person in need of
care or by family members providing this care.
The subsequent eligibility and payment for this
assistance must also be addressed. Accordingly,
the following points are essential:
► recognition of fundamental basic standards;
► acknowledgment that diversity originating in
culture, gender, ethnicity, unique regional
setting, language, and other factors all play a
role in shaping LTC needs and in defining
appropriate supportive resources and
interventions;
► assurance that care is of a high quality and is
offered by culturally sensitive providers;
► clarification of the values and aspirations,
roles, and responsibilities of individuals and
families as defined by their particular social
context, within the larger society, and in
relation to their own government;
► reconciliation of the differences between these
groups, and in the process, stressing the focus
on the individual and the family.
Issue 2. Private- and Public-Sector Roles and
Responsibilities
Although some countries regard their systems of providing LTC as satisfactory,2
some do not have adequate systems, and all countries have policy concerns. The
respective roles and responsibilities of everyone involved in LTC need clarification.
Any reform or development of LTC provision or police must be accomplished by
adopting a systematic and orderly approach, in which the primary stakeholders
take responsibility for identifying needs and incorporating reforms. Families,
individuals, civil society, national, state, provincial, and/or local government, non
profit organizations, and for-profit organizations are the main stakeholders. This
collaboration will be necessary to ensure continued development and sustained
reforms. Legislation must be enacted to structure and direct these efforts.
GUIDING PRINCIPLE 2. Evidence of successes from the private and public
sectors would provide a framework for developing and implementing LTC
policies and programmes. Towards such an end, it is important to pursue a
national consensus that encompasses the following goals:
► stimulation of collaboration and partnerships between the private and
public sectors that involve each level of government, civil society, and the
non-profit and for-profit sectors;
► clear definitions of the roles and responsibilities of the private and public
sectors in order to achieve these ends:
- create public programmes that provide the foundation for private
sector support and cooperation,
- assure the development of measures to provide the necessary supply
of supportive resources for older people in need of LTC and similar
support for their family caregivers by the public and/or private sectors,
- identify and assign specific responsibilities for assuring quality of care.
2 Organisation for Economic Co-operation and Development. Maintaining prosperity in an ageing
society. Paris, 1998.
Issue 3- Public Education
Effectively implementing policy changes requires building an understanding,
informed public. Certainly, (he values of the affected individual(s) and their
communities should be ascertained. Community-wide understanding of the needs,
realities, and choices pertaining to LTC is also essential if individuals and families
arc to plan for, receive, and provide supportive assistance. Strategies for educating
the public should use credible resources to disseminate information in informal and
formal settings.
GUIDING PRINCIPLE 3. Successful policy change requires an
understanding, informed public and group of professionals. All efforts to
inform and educate should be sensitive to issues of age, gender, and culture.
9
Issue 4. Caregiver Roles, Responsibilities, and Rights
Despite the declines in disability rates among older persons that have been recently
observed in some developed countries, a growing aged population will, of itself,
increase future needs. In addition, there is now more emphasis on enabling older
persons to remain in their own homes. Long-term-care needs will continue to grow
under the following projected circumstances:
► the family structure continues to evolve;
► geographic mobility becomes more pronounced;
► worker-to-retiree dependency' ratios rise;
► the population of virtually all countries rapidlv ages.
All these issues trill be particularly important in the developing world, where ETC
has traditionally been provided by the families alone and where competition for
scarce resources is intense.
Formal Caregivers
An LTC system that provides continuous,
comprehensive services must include the following
measures;
► specialized training and education for formal
caregivers;
► linked clinical, social, and public health services;
► standards of care for health care professionals and
paraprofessionals:
- establishing standards of care where absent;
- monitoring adherence to standards of care and
compatibility with an individual’s desires;
► multisectoral arrangements for integrated,
transportable provision of care.
Health and social care personnel working within LTC
systems must be equipped to deliver a comprehensive
range of home, community, and institutional services.
Integration of service provision xrill be an important
component of LTC policies.
10
Informal Caregivers
Throughout the world, family members still provide the largest proportion of LTC.
In light of that reality, LTC systems should support, not replace, current informal
caregivers. Provisions for specialized training and support for informal caregivers
can enhance family solidarity and minimize the vulnerability of older people in
need of care. Existing community education
institutions, respite care services, and support
groups should be utilized in preparing and
supporting these caregivers.
National policies should take into account
workers with responsibilities for the care or
support of family. Historically, the fact that
these caregivers have not been reimbursed for
providing services has kept the costs of LTC
low. Inequalities in opportunity and treatment
may threaten the economic and social security
of informal caregivers, both men and women.
Unfortunately, gender divisions continue in the
labor market and in caregiving, as the bulk of
informal care of older persons in need has
traditionally been provided by women. Men
and women, with or without family
dependents, should have the full ability to
prepare for, enter, participate in, or advance
economic activity. Informal caregiving services should be recompensed with benefits
and/or entitlements, so that all caregivers can exercise their right to free choice of
employment and fulfill their needs within their society’s terms and conditions of
employment and retirement.
GUIDING PRINCIPLE 4. Public policies must be designed to address the
need for caregivers; to define their roles, responsibilities, and rights; and to
respond to the challenges they face, either formally (in the case of
professionals and paraprofessionals) or informally (when services are
performed by family, volunteers, neighbours, or nongovernmental
organizations). Future caregiving will require new and/or reformed models of
formal and informal systems of care and systems for supporting caregivers.
Support for informal caregivers could come in the form of social security'
coverage, training, respite care, visiting nurse services, and/or lump sum
disbursements to cover costs, to name a few examples.
11
Issue 5. Infrastructure: LTC Systemsfor Provision of
Social and Health Care Services
Before decisions can be made regarding the future direction of policy, the current
infrastructure and systems will have to be evaluated. A LTC system should offer a
repertoire of services to all older persons requiring care. A system that facilitates an
individual’s entry, exit, and re-entry according to his or her changing needs and
circumstances would be ideal.
A comprehensive and continuous care provision plan would contain the following
necessary elements:
► equity of access;
► scope of benefits and services;
► eligibility for coverage;
► entry points to care;
► links to and between health and social systems:
► adequacy of the infrastructure, including its ability to handle issues related to
certain critical areas:
- the workforce (including employee education, training and certification
processes),
- programmes and facilities,
— information systems for assessments, clinical decisions, care coordination,
and programme development,
- the organizational capacity to respond to change and reorganize,
- integration and sustainability of services,
- standards and mechanisms for evaluating quality and satisfaction.
GUIDING PRINCIPLE 5. All older people in need
of care should have access to LTC services
regardless of age, gender, or income. A person’s
level of need and duration of care should be
determined at the time of entry into the system
and then regularly updated. New policy mandates
must be carefully shaped in order to avoid
fragmentation of care provision, to address service
gaps, and to construct a seamless system of care.
12
Issue 6. Income Security and Financing ofLTC Systems
and Services
In general, cost-containment policies in health care are forcing the re-evaluation
of LTC policy. Current investment in ETC provision is inadequate in many
countries, with the result that many existing services and systems are being strained
by the increased demand. The rising financial demands placed on society require
innovative responses and cooperation between private and public sources to secure
budgetary funding.
Public education, housing, and health care will require varied solutions to ensure
adequacy:
► financial support methods that balance public, private, and individual
obligations;
► revenue sources at each level of government;
► acceptable payment and cost-containment mechanisms;
► budgetary flexibility that links health and social care with other related budgets;
► fair and equitable solutions to the treatment of individual income and assets;
► funding sources based on social solidarity schemes.
A verage Life Expectancy at Birth
for Both Sexes in the World Regions
Africa
I Asia
Latin America/tbe Caribbean
Europe
A North America
Source: US, The Population Prospectus. 1998 up-date
GUIDING PRINCIPLE 6. Creating and
supporting a system for providing care
services will require a balanced approach
that utilizes both public and private
financial support. Similarly; policies
should find fair and equitable means and
payment mechanisms to secure or
maintain economic security for older
persons who need care.
Issue 7. Current and Future Technology
Bolh existing and new technologies will contribute significantly to future care
provision. When these technologies are also cost effective, every means should be
used to incorporate them into the existing system of care as rapidly as possible.
Policy makers should consider adopting the following measures:
► facilitating the use of existing technolog}7;
► assessing new and developing technolog}7;
► encouraging and rewarding the development, dissemination, and use of assistive
devices and new technolog}7.
GUIDING PRINCIPLE 7. Optimizing the
use of current technolog}7 and
incorporating new, appropriate
technologies wall be crucial for the health
of future LTC systems.
14
Issue 8. Research, Data Collection, and Strategic Analysis
Studies of LTC provision and systems will form a crucial foundation for evaluating
outcomes and promoting further policy development.
A clear mandate for investigation will assist researchers to achieve certain goals:
► setting research priorities;
► assessing the usefulness of existing research;
► attracting resources for research;
► initiating research projects;
► applying research findings to policy development;
► balancing clinical, epidemiological, and social science research methods and
findings.
I
GUIDING PRINCIPLE 8. Research should
be planned to assess and monitor reforms
in LTC provision and systems. This
research should focus on effective
implementation and outcomes. The rapid
growth of the elderly population worldwide
adds to the importance of encouraging
research on interventions that prevent or
delay the onset of disabilities.
Invitation to Comment on the Guiding Principles
The working group for the International Long-Term-Care limitative presents this
document as an initial framework for the development of global policies regarding
the provision of ETC. The group is committed to sharing the central messages of
this initiative with governments, institutions, communities, and individuals. The
initial intended audience comprises decision-makers for health and social policy
from the public and private sectors. An interactive World Wide Web site will be
dedicated to this initiative, which will assist in translating actions into practice and
in expanding the audience to include professionals, direct service providers,
advocates, and consumers. We expect that this resource will provide a forum for
ongoing, rapidly expanding, and timely communication. The goal of this Web site
is to facilitate global interaction, communication, and collaboration while
simultaneously advancing the priorities for action in LTC.
Although the circumstances of older persons were the impetus for this initiative, we
do not mean to minimize the situation of younger persons with health problems or
physical or intellectual disabilities, nor do we intend to overlook the need for
policies to address the problems faced by these populations. Certainly, they require
attention and, in the future, this
document could be used to incorporate
all ages within comprehensive LTC
policies. Many aspects of LTC are not
age specific, such as similarities in care
needs, services, and facilities. A
comprehensive policy that is part of a
general health care strategy would reap
many benefits: for example, it would
help to minimize competition for
limited funding and would cut down
service overlap while strengthening the
prospects for intergenerational LTC
facilities. Yet, at this time, the urgent
needs of older persons merit the specific
focus on this population.
At a broader level, countries and regions
will experience similar needs, but each
locality will establish its own priorities
for work and policy development,
depending on its own particular expressed needs. Countries may choose to begin at
different or multiple points of entry, for example, by strengthening district-level
capacity, supporting informal caregivers, or increasing national capacity through
policy development. National governments and nongovernmental organizations are
urged to use this International Long-Term-Care Initiative to cultivate and sponsor
networks for LTC provision within and between countries. The working group of
this initiative entrusts the World Health Organization and the Milbank Memorial
Fund to promote alliances, enable developed and developing countries to
implement the recommendations for action, and introduce sustainable reforms.
16
Acknowledgments
The following persons participated in meetings to plan this report and/or reviewed
it in draft. They are listed in the positions they held at the time of their
participation.
Kathleen S. Andersen, Senior Program Officer, Milbank Memorial Fund, New
York; Ken Black, Programme Associate, Ageing and Health Programme, World
Health Organization, Geneva; Jo Ivey Boufford, Dean, Robert F. Wagner Graduate
School of Public Service, New York University, New York; June Crown, Chairman
Designate, Age Concern England, London; Charles J. Fahey, Program Officer,
Milbank Memorial Fund, New York; Kathleen M. Foley, Chief, Pain Service,
Department of Neurology, Memorial Sloan-Kettering Cancer Center, New York;
Gloria M. Gutman, Professor and Director, Gerontology Research Centre, Diploma
and Masters Program, Simon Fraser University at Harbour Centre, Vancouver; Jack
Habib, Director, JDC-Brookdale Institute of Gerontology and Human
Development, Jerusalem; Peter Hicks, Co-ordinator, Policy' Implications of Ageing,
OECD Directorate for Education, Employment, Labour and Social Affairs, Paris;
Irene Hoskins, Programme Officer, Ageing and Health Programme, World Health
Organization, Geneva; Ursula M. Karsch, Pontificia Universidade Catolica de Sao
Paulo, Sao Paulo; Kimmo Leppo, Ministry of Social Affairs and Health, Helsinki;
Jose M. Martin-Moreno, Director, Escuela Nacional de Sanidad, Institute de Salud
Carlos 111, Madrid; Otto Christian Roe, Project
Manager, Norwegian Board of Health, Oslo; Jeanette
C. Takamura, Assistant Secretary for Aging, U.S.
Department of Health and Human Services,
Washington, D.C.; Noriyasu Watanabe, Professor of
Social Security Laws and Pensions, Faculty of
Sociology', Edogawa University, Nagareyama City; Liz
Wolstenholme, Head of Continuing Health Care,
National Health Service Executive, London.
Special credit is given to Paul Kowal, Programme
Officer, Ageing and Health Programme, World Health
Organization (WHO/AHE) fordrafting this
document and for maintaining regular correspondence
with all other contributors.
Ingrid Keller, Sheel M. Pandya (WHO/AHE) and Jeff
Edelstein (Milbank Memorial Fund) were
instrumental in assisting in the final stages of this
production.
Photo Credits
Front cover and page 1: Digital Stock; page 2: Gilbert
Awekofwa/HelpAge International; page 4: PhotoDisc;
page 5: WHO/PAHO; page 6: PhotoDisc; page 7:
WHO/PAHO; page 8: P. J. Griffiths/Magnum Photos.
Inc.; page 9: Barney' Bruno/Magnum Photos, Inc., WHO/PAHO; page 10:
PhotoDisc; page 11: WHO/PAHO, page 12: Digital Stock; pages 14 and 15:
PhotoDisc; page 16: WHO/PAHO; inside back cover: Digital Stock; back cover:
PhotoDisc.
Design: Marilyn Langfeld
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