WHO DOCUMENTATION ON AGEING
Item
- Title
- WHO DOCUMENTATION ON AGEING
- extracted text
-
RF_GER_3_SUDHA
WHO/DG/SP/93
Check against delivery
Launching of the Global Movement for Active Ageing
and the International Day of Older Persons
Statement by
Dr Gro Harlem Brundtland
Director-General
Geneva, 2 October 1999
World Health Organization
WHO/DG/SP/93
Dr Gro Harlem Brundtland
Director-General
World Health Organization
Launching of the Global Movement for Active Ageing
and the International Day of Older Persons
Geneva, 2 October, 1999
Vladimir Petrovsky,
Mary Robinson,
Guy-Olivier Segond,
Excellencies,
Dear guests and friends,
It is a great privilege and pleasure for me to be here today on the occasion of the International Day of
Older Persons and the UN Open Day.
For the entire history of the United Nations, Geneva has been its host. This relationship is so old and
close that one rarely thinks about the one without the other. Thousands of UN employees, past and
present, have enjoyed the hospitality of the Swiss-Romands and the beauty of the city. Millions of
others have fond memories from visits to this city while they attended meetings at the UN. It is a small
but heartfelt gesture for us to open up our doors and show you how this large family of organizations
works.
Almost exactly one year ago, I spoke in this Assembly Hall. Together with many of you in this
audience and on this podium today, we launched the International Year of Older Persons 1999.
Much has been said during this past year about the ageing of the global population. So you know very
well that rapid population ageing is triggered when people live longer and longer, and fewer and fewer
children are being bom.
Population ageing is occurring not just in the industrialized countries but also in virtually the whole of
the developing world. Today, 60% of people over 60 live in developing countries and in 25 years that
proportion will exceed 75%.
There have been many shrill voices warning of a “Grey Dawn”, of the breakdown of welfare and
health systems under the weight of this new wave of elder persons, too old to work and too ill to
manage on their own. We are headed for a catastrophe, some of these prophets warn.
Such potential trends are of course of great concern to the World Health Organization. If our health
systems are under threat of breaking down in the decades to follow, we all need to do something about
it. And what have we done?
We have arranged a walk.
Since the sun rose over the Pacific Ocean more than twenty hours ago, millions of people - old and
young alike - have walked together, in New Zealand, in the Philippines, in Tanzania and in almost
every country in-between.
What we have seen here at the Palais des Nations this morning is our contribution to what is to my
knowledge the biggest health promotion event by and for older people ever held. It has been called
“the Global Embrace”, and it is exactly what its name implies: a 24-hour walk and health promotion
event, as well as a celebration, starting in the Pacific and continuing around the world through
makes the difference
In a society for all ages
Active Ageing makes the difference
n 1999, during the International Year of Older Persons,
WHO launched a new campaign highlighting the benefits
of Active Ageing. This was in perfect harmony with the
slogan for the International Year “Towards a Society or All
Ages” as Active Ageing highlights the importance of social
integration and health throughout the life course.
The campaign started on World Health Day 1999 when Dr Gro
Harlem Brundtland, Director General of WHO, stated “there is
much the individual can do to remain active and healthy in later
life. The right life style, involvement in family and society and a
supportive environment
for older age all preserve
well being. Policies that
reduce social inequalities
and poverty are essential
to complement
individual efforts
towards Active Ageing.”
The Active Ageing
campaign culminated
in a “Global Embrace”
on 2 October 1999
which consisted of a
chain of celebrations
and walks circling
the globe during a
24-hour period.
The Global Embrace aimed to:
♦
inspire, inform, and promote health
♦
provide enjoyment to all generations
♦
draw attention to the public health benefits of
Active Ageing.
The Global Embrace:
♦
linked local project leaders to a global
community from all over the world
♦
mobilised volunteers and funding at the local
level
♦
served as the launch of the Global
Movement for Active Ageing, a new WHO
initiative, to ensure that the momentum of 1999
will continue in the new century.
Achievements of the Global Embrace:
Well over one million people in 97 countries in both the
developing and the developed world participated.
Organisers in developing countries responded with particular
enthusiasm as little attention had previously been given to
health promotion for older people.
“The Global Embrace
1999 was an event
Trivandrum will never
forget”
Jothydev K„
Trivandrum, India
New partnerships were forged: service providers and
medical centres linked with clubs and associations of older
people, multisectoral NGOs linked with local government.
In addition to walks and celebrations, the events offered:
blood pressure screenings, eye examinations and practical
advice on nutrition and physical activities.
Many older people with disabilities participated highlighting
that Active Ageing applies to all, including those that
experience functional limitations.
“Older people are a human
treasure and a precious
capital for our countries and
our cultures.”
Broad-based coalitions of international NGOs participated
(e.g. HelpAge International, Rotary International,
International Sports for All Association, International
Council of Nurses, International Osteoporosis Foundation,
International Federation of Medical Students’ Associations
and others) disseminating news about the Global Embrace
to their national affiliates.
The media played an important role in the
Global Embrace
Ministry of Health, Chad
According to a survey evaluating the outcome of the Global
Embrace, eighty-four percent of the events had media
coverage in local and national radio, TV and newspapers.
The Internet was used extensively to reach a global public.
An interactive Website was opened for a 24-hour period
which allowed participating cities to report “live” on their
events.
The Global Embrace 2000
Aou are invited to join the Global Embrace 2000,
a walk event and a celebration for Active Ageing
on Sunday, 1 October 2000.
By walking and celebrating with young and old, the Global
Embrace 2000 affirms the importance of staying active and
healthy. Health at older ages concerns everyone. Healthy older
people are a resource to their communities and families.
We urge cities, organisations and individuals all around the
world to join the Global Embrace 2000 and to encircle the
globe on 1 October, the International Day of Older Persons. It
is your contributions, ideas and cultural perspectives, that will
make this event unique. The growing numbers of older persons
in the world’s population in the 21st century should be
celebrated as an achievement for all of
humanity.
Local partnerships for Active
Ageing are key for planning and
implementing a successful event.
Now is the time to build networks
based on local priorities in the area of
ageing. Walking, dancing, gymnastics and
other activities that promote health can all be
part of your event. See our Website for starting your
media campaign. It also contains other useful tools,
including the Active Ageing logo which you may
wish to use for your promotional materials.
“We stretched, we walked
and we talked. All are
eager to repeat the event in
2000”
Barbara Forbes & Jacqueline Goffaux,
Nashville, USA
“Let us take steps forward
into the next century,
towards a happy and
healthy
ageing society”
1999 Global Embrace participants,
Nagano, Japan
The Global Movement for Active Ageing
Do you want to know more about Active Ageing? Are you
interested in the latest research results or in what your
colleagues — researchers, practitioners and community
activists — are doing in various parts of the world? The Ageing
and Health Programme of WHO maintains a database of
organisations interested in promoting information on Active
Ageing programmes. It is also collecting information about
project outcomes, new research and innovative policies on
Active Ageing. The data will be made available on the Website.
Tell us about your projects and join our network.
“It was very stormy and
rainy in the Netherlands
but over 10,000 walkers
participated in the Global
Embrace 1999”
Dutch Committee international Year of
Older Persons, Netherlands
Join us by registering through our Internet site or
return the attached response coupon by mail.
Ageing and Health, World Health Organization
20, avenue Appia, 1211 Geneva 27, Switzerland
Phone: +41 22 791 3486 Fax: +41 22 791 4839
E-mail: activeageing@who.ch
http://www.who.int/ageing/global_movement
0
“We inspired people of
different ages.”
Heini Parkkunen,
Turku, Finland
WHO/MSD/HPS/MDP/OO.4
English only
Distr.: General
Healthy Ageing Adults with
Intellectual
Disabilities
Biobehavioural Issues
International Association
for the Scientific Study of
Intellectual Disabilities
WHO Global
Movement for
Active Ageing
Department of Mental Health
and Substance Dependence
World Health Organization
Healthy Ageing - Adults with Intellectual Disabilities
Biobehavioural Issues
Authors
L.
Thorpe(Canada)
P. Davidson (USA)
M.
Janicki (USA)
This report has been prepared by the Aging Special Interest Research Group of the International
Association for the Scientific Study of Intellectual Disabilities (IASSID) in collaboration with
the Department of Mental Health and Substance Dependence and The Programme on Ageing and
Health, World Health Organization, Geneva and all rights are reserved by the above mentioned
organization. The document may, however, be freely reviewed, abstracted, reproduced or
translated in part, but not for sale or use in conjunction with commercial purposes. It may also
be reproduced in full by non-commercial entities for information or for educational purposes with
prior permission from WHO/IASSID. The document is likely to be available in other languages
also. For more information on this document, please visit the following websites:
http://www.iassid.wisc.edu/SIRGAID-Publications.htm and http://www.who.int/mental_health,
or write to:
Department of Mental Health and
Substance Dependence
(attention: Dr S. Saxena)
World Health Organization
20 Avenue Appia
CH-1211 Geneva 27
IASSID AGING SIRG
Secretariat
c/o 31 Nottingham Way South
Clifton Park
New York 12065-1713
USA
or E-Mail: sirgaid@aol.com
Acknowledgements
This report was developed primarily with input from: N. Bouras (UK), K. Drummond (UK), S. Moss (UK), K.
Bishop (USA), V. Prasher (UK), D. Burt (UK), N. Shupf (USA), G. Weber (Austria), S. Vicari (Italy), A. Dalton
(USA), J. Jacobson (USA), K. Wang (Taiwan), P. Ladrigan (USA), C.M. Henderson (USA), H. San Nicolas (Guam),
K. Hauser (USA) and secondarily from delegates present at the 10th International Roundtable on Ageing and
Intellectual Disabilities, World Health Organization, Geneva, Switzerland, April 20-23, 1999. This document was
developed initially in draft form in 1998 by L. Thorpe and P. Davidson after the 9th International Roundtable on
Ageing and Intellectual Disabilities in Cambridge, England. It was then circulated to Aging SIRG working group
members and selected others for commentary and amendments. The amended document became part of the working
drafts circulated to delegates at the 10th International Roundtable on Ageing and Intellectual Disabilities in Geneva
in 1999, and was discussed and amended further at the meeting. A set of summative broad goals was developed by
the group and appears in this paper, which itself became part of the comprehensive WHO document on ageing and
intellectual disability (WHO, 2000). The primary goal of this paper is to organize information on biobehavioural
issues in older people with intellectual disabilities, and to present broad summative goals to direct further work in
this area. These are included within the text and at the end of this document.
Partial support for the preparation of this report and the 1999 10lh International Roundtable on Ageing and
Intellectual Disabilities was provided by grant 1R13 AG15754-01 from the National Institute on Aging (Bethesda,
Maryland, USA) to M. Janicki (PI).
Also acknowledged is active involvement of WHO, through its Department of Mental Health and Substance
Dependence (specially Dr Rex Billington and Dr S. Saxena), and The Programme on Ageing and Health in preparing
and printing this report.
Suggested Citation
Thorpe, L., Davidson, P., & Janicki, M.P. (2000). Healthy Ageing - Adults with Intellectual Disabilities:
Biobehavioural Issues. Geneva, Switzerland: World Health Organization.
Report Series
World Health Organization (2000). Healthy Ageing - Adults with Intellectual Disabilities: Summative Report.
Geneva: Switzerland: World Health Organization (WHO/MSD/HPS/MDP/OO.3).
Thorpe, L„ Davidson, P., Janicki, M.P., & Working Group. (2000). Healthy Ageing - Adults with Intellectual
Disabilities:
Biobehavioural
Issues.
Geneva,
Switzerland:
World
Health
Organization
(WHO/MSD/HPS/MDP/OO.4).
Evenhuis, H., Henderson, C.M., Beange, H., Lennox, N., Chicoine, B., & Working Group. (2000). Healthy Ageing
- Adults with Intellectual Disabilities: Physical Health Issues. Geneva, Switzerland: World Health Organization
(WHO/MSD/HPS/MDP/OO.5).
Walsh, P.N., Heller, T., Schupf, N., van Schrojenstein Lantman-de Valk, H., & Working Group. (2000). Healthy
Ageing - Adults with Intellectual Disabilities: Women's Health and Related Issues. Geneva, Switzerland: World
Health Organization (WHO/MSD/HPS/MDP/OO.6).
Hogg J , Lucchino, R., Wang, K„ Janicki, M.P., & Working Group (2000). Healthy Ageing - Adults with
Intellectual Disabilities: Ageing & Social Policy.
Geneva: Switzerland: World Health Organization
(WHO/MSD/HPS/MDP/00.7).
Healthy Ageing - Adults with Intellectual Disabilities: Biobchavioural Issues
1- Background
In nations with established market economies,
most adults with intellectual disabilities who
live past their third decade are likely to
survive into old age, and experience the
normal ageing process. As in the general
elderly population, in spite of gradual declines
in a variety of domains, they can still have
active and varied lifestyles with an excellent
quality of life. Age associated, functional
declines must be separated from specific
losses due to physical illness, dementia,
depression, sensory loss, and social and
environmental factors.
The interaction
between biological, psychological and social
aspects of ageing remains the most important
factor in the functional outcome of a person
with intellectual disabilities.
Very little empirical data exists about normal
psychological functioning developmental
processes throughout the life-span in people
with intellectual disabilities. Seltzer (1993)
presents the best model, linking behavioural,
cognitive and affective outcomes to the
negotiation of developmental tasks of ageing
in the context of a variety of interacting
individual, social and environmental
antecedent conditions, such as intellectual
ability, social competence, personality,
physical condition, environment and learning
history. Every person has his/her own
individual set of antecedent conditions, and
has different opportunities to successfully
negotiate the developmental tasks of ageing.
Goal 1 To improve the understanding of normal
psychological functioning throughout
the life-span of people with intellectual
disabilities
People with intellectual disabilities in general
have restricted social roles and more limited
WHO/MSD/HPS /MDP/00.4
Page 1
social networks, and thus fewer opportunities
to experience and learn from some of the tasks
commonly experienced by those without
intellectual disabilities, particularly those who
have spent considerable time in more
restricted institutional environments. Mid to
older life changes such as bereavement may
thus have a greater impact, and with a greater
likelihood of adverse functional outcome.
The acceptance of mortality for example,
which is an integral part of ageing in people
without intellectual disability, is often
hindered by a lack of exposure to rituals such
as funerals in an attempt to shield the person
from unpleasant events.
Furthermore, the magnitude of individual
adverse reactions to stressors may be
accelerated because of cognitive impairment
(pre-existing and/or degenerative, as in the
dementias), poor self-esteem and poor
perception of self-competence due to repeated
adverse life experiences over the life-span,
and poor social support.
Goal
2.
2
To improve knowledge and
awareness of age-related
stressors and their impact on
older people with intellectual
disabilities
Mental and behavioural disorders
For the purpose of this paper we have defined
mental disorders as disorders that can be
classified into diagnostic systems such as the
ICD10. Biological, psychological and social
factors disorders may all contribute to their
expression. Behavioural disorders on the
other hand are patterns of maladaptive
behaviors (usually as perceived by an
informant) that interfere with typical life
functioning. They may be related to another
mental disorder in the individual, biological
vulnerability, longstanding learned behaviors,
Healthy Ageing - Adults with Intellectual Disabiiities: Biobehavioural Issues
WHO/MSD/HPS/MDP/OO.4
Page 2
or a mismatch between environmental
expectations and resources with the
individual’s capabilities and wishes: for
example, a behavioural problem such as
wandering in a demented person may be
maladaptive if the individual lives in an open
facility close to a busy highway, but
contribute to the maintenance of physical
abilities in a well-designed dementia unit due
to regular exercise.
Major mental disorders, although less
common than behavioural disorders, are still
fairly frequent in elderly people with
intellectual disabilities. Day and Jancar
(1994) reviewed this topic and found an
overall prevalence of about 10%. Some
disorders such as dementia increase with age,
which is particularly noticeable in those with
Down Syndrome (DS). As in the general
elderly population, psychotic disorders also
increase with age, but are less frequent than
mood and anxiety disorders. Interestingly,
due to “differential mortality” or the tendency
for healthier people to live longer, older
cohorts may actually be healthier in many
domains than younger cohorts (Janicki,
Dalton, Davidson & Henderson, 1999), and
show greater functional abilities than the
young until the oldest ages.
Most studies find that, compared to the
general population, behavioural disorders are
more common in people with intellectual
disabilities at all stages of the life span. There
seems to be an association with age mostly in
those individuals that have dementing
disorders (Moss & Patel, 1995).
3.
Etiology
Social,
cultural,
environmental
and
developmental factors and stressors have
significant impact on the expression of both
psychiatric and behavioural disorders in older
people with intellectual disabilities (Day &
Jancar, 1994). Stressors may be multiple,
and include separation from or death of a
parent, loneliness and sudden relocation.
Unfortunately, little is known about
quantifying these influences on age-related
changes in persons with intellectual
disabilities. However, the general consensus
of clinicians in the field is that all perceived
symptoms need to be evaluated in a broad
context, and not necessarily attributed to one
individualized factor but explored as part of a
complex interaction of the individual with the
environment.
Goal
3
To understand and appreciate
the
social,
cultural
environmental
and
developmental context of
behaviors and their functions
in
older
people
with
intellectual disabilities
Biological contributions to mental and
behavioural disorders are also important, and
often increase with age. Examples include
sensory loss and dementia in DS, feeding
abnormalities in those with cerebral palsy due
to reflux, and a variety of other behavioural
changes related to chronic medical illnesses
(Lantman de Valk et al., 1998; Davidson et
al., 1995). Of course, genetic risk factors for
the major mental illnesses such as
schizophrenia or bipolar disorders continue to
be present in old age as in the general
population, and specific behavioural clusters
associated with developmental syndromes
may persist from younger years into old age.
4.
Detection and assessment of mental
disorders
Major mental disorders in older people with
intellectual disabilities may have considerable
negative impact on cognitive, affective and
general functioning as well as on the quality
of life of the person. It is important therefore
to detect and optimally treat these, especially
treatable disorders such as depression.
However, diagnosis is already more difficult
in older people in general due to higher rates
Healthy Ageing - Adults with Intellectual Disabilities: Biobehavioural Issues
WHO/MSD/HPS /MDP/00.4
Page 3
of comorbidity, polypharmacy and a reduced
tendency to voice psychological compared to
phy sical complaints, and this is magnified in
the intellectual disabilities group, particularly
in the most disabled segment. The presence
of seizure disorders and their treatments
additionally complicates the assessment of
mental functioning, although this may be
more pronounced in younger age groups that
tend to be more multiply disabled. Other
challenges in the intellectual disabilities group
include communication barriers, baseline
behavioural abnormalities (secondary to brain
abnormalities, learned maladaptive behaviors,
and environmental deprivation) overlapping
with core mental illness symptomatology, and
more florid stress related decompensation.
Health care providers that are not familiar
with intellectual disabilities have difficulty
making accurate mental health assessments,
yet carers that are most able to report changes
in the usual functioning generally do not have
the necessary knowledge of mental disorders.
Unfortunately, in most parts of the world
there are few specialists with both intellectual
disabilities and psychogeriatric expertise that
would be able to bridge that gap. Cultural
perspectives on normative behavior may
further color how seemingly "deviant"
behavior, which may be attributable to
intellectual disabilities, may be perceived.
Tests and assessment instruments are often
not available in local languages.
In many cases the combination of the above
individual, environmental and care system
difficulties leads to a lack of differentiation
between mental illness and intellectual
disability, with both over and under diagnosis
of mental illness, each of which can lead to
adverse consequences. Although florid and
disruptive behaviors are likely to come to the
attention of mental health services, milder
symptoms such as early depression and
cognitive impairment may be missed, whereas
there may be an overdiagnosis of disorders
like schizophrenia due to the diagnosticians’
unfamiliarity with the presentation of older
people with intellectual disabilities and stress
decompensation, for example.
Ideally, assessment of biobehavioural issues
involves interviewing the person as well as
their carers, and exploring the environment as
a potential contributor to the symptoms.
Interactions between the older person’s
cognitive, affective and general functional
abilities with the environment and care system
must be explored. Frequencies of symptoms
and
possible
correlation
to
other
environmental events can be analyzed by
charting identified behaviors and symptoms.
A thorough medical evaluation, including
visual and auditory assessments should
precede a final mental health diagnosis.
Screening instruments exist for various mental
disorders in intellectual disabilities, but must
be
developmentally
and
culturally
appropriate. General instruments include the
Psychopathology Instrument for Mentally
Retarded Adults (PIMRA; Matson), and the
Reiss screen (Reiss, 1987). The Mini-PASADD (Prosser et al., 1997) and the PASS
ADD Checklist (Moss et al., 1998) have been
developed specifically to improve case
recognition in this population.
These
instruments are not sufficiently specific or
sensitive to make a diagnosis, but are useful to
indicate the need to obtain further mental
health assessment.
Instruments designed for specific disorders,
such as the Beck Depression Inventory (Beck,
Ward, Mendelson, 1961) and the Zung SelfRating Depression Scale (Zung, 1965) have
been adapted and simplified for use in
intellectual disabilities by Kazdin and
associates (Kazdin, Matson, Senatore, 1983).
These, as well as others such as the Hamilton
Rating Scale for Depression (Hamilton, 1960)
have been used successfully to assess
depression in people with intellectual
disabilities and mental disorders.
Healthy Ageing - Adults with Intellectual Disabilities: Biobehaviourai Issues
WHO/MSD/HPS/MDP/OO.4
Page 4
The diagnosis of dementia in intellectual
disabilities has been discussed at length, as
people with DS are at very high risk of
developing this. The instruments used in the
general population are difficult to use due to
floor effects, and furthermore, baseline
abilities in intellectual disabilities are so
varied that only repeated measures over time
are likely to result in an accurate assessment
of dementia. It is suggested that behavioural
measures should be repeated at set intervals
after age 40 in DS, and after age 50 in others
with intellectual disabilities to detect
functional changes, which can then be further
evaluated clinically. The IASSID/AAMR
practice guidelines give more detail on
assessment and care management in dementia
(Janicki et al, 1996).
Auxiliary diagnostic tools such as
computerized tomography (CT), positron
emission tomography (PET), single photon
emission computerized tomography (SPECT)
and magnetic resonance imageing (MRI) may
be helpful diagnostically, and might
eventually become more routinely used, at
least in developed nations.
Goal
4
To improve the detection and
holistic assessment of mental
disorders such as depression,
anxiety and dementia in older
people
with
intellectual
disabilities.
Goal
5
To increase mental health
knowledge and skills in
professionals, carers and
families of older people with
intellectual disabilities.
5.
Interventions
Interventions in general must incorporate the
best information from two separate bodies of
evidence; the mental health-intellectual
disability (dual-diagnosis) literature, and the
psychogeriatric literature. Data from the
psychogeriatric literature is important as it
considers physical and mental changes
developing longitudinally with the ageing
process.
Data from
the mental
health-intellectual disability literature is
important because it identifies issues specific
to or more prevalent in people with
intellectual disabilities, and focuses on
interventions that have particular use in this
area. Both fields are now starting to address
the role of autonomy and choice-making by
adults in the development and treatment of
mental health symptoms.
Ideally, interventions for behavioural and
mental disorders should first consider
prevention: primary,
i.e., strategies
implemented to prevent all occurrence of the
problem; secondary, i.e., early treatment of a
problem to prevent its full expression; and
tertiary, i.e., strategies to minimize functional
impairment due to the problem once firmly
established. (It should be remembered that
the “problem” referred to is not necessarily
only directly related to the older person with
an intellectual disability, but is really the
interaction of multiple variables as described
earlier, culminating in the perception of their
being a “problem” by some person, usually in
the care system or the community.)
Primary prevention strategies for behavioural
and mental disorders are not comprehensively
understood, but some issues are known to be
associated with a reduced prevalence.
Decreased use of large congregate care such
as institutions reduces the frequency of a
variety of maladaptive behaviors, infectious
diseases as well as polypharmacy, which is
responsible for many other secondary adverse
effects. Increased work on communication
skills and identification of sensory deficits
often reduces the development of maladaptive
behaviors such as aggression, and increases
adaptive behavior. Increased availability of
Healthy Ageing - Adults with Intellectual Disabilities: Biobehavioural Issues
WHO/MSD/HPS /MDP/00.4
Page 5
rewarding activities, and increased provision
for autonomous choice making in various
domains is also associated with positive
behavioural outcomes, although systematic
studies are difficult to perform. Humane,
non-abusive living environments sensitive to
the needs of their older residents with
intellectual disabilities are likely also to foster
reduced development of maladaptive
behaviors. Finally, staff that are trained to
understand and deal with the emotional needs
and stresses of their residents will better
provide
an
emotionally
supportive
environment that will minimize the
occurrence of challenging behaviors or the
perception of the person as “a problem.”
Primary prevention of the major mental
disorders such as schizophrenia is less likely,
as there is a large biological and genetic
component to most of these. However, the
recurrence of individual episodes of illness
can be minimized by reducing stressors if
possible, providing sensitive support for
those that do occur, and ensuring appropriate
medication use.
Goal
6
To
develop
living
environments
that
are
responsive to the mental
health needs of older people
with intellectual disabilities.
Secondary prevention of mental and
behavioural disorders involves appropriate
early detection, assessment and treatment of
the designated problem, by careful
involvement of biological, psychological and
social interventions. It is crucial to involve
the persons themselves, staff, family and
community in the holistic treatment planning
process, and provide sufficient training to
allow carers to continue therapeutic
interventions
after
any
professional
involvement has ended. Modifications may
need to be made to the home and work
environment and/or staff approaches to the
person. Needs that may be expressed in a
maladaptive behavioural way must be met
more productively, and alternate expressions
taught. Supportive therapy, individual or
group behavioural therapy, family therapy and
social skills training might all be of help, as
might be the involvement of spiritual elders or
healers, depending on the cultural milieu.
Unfortunately, there are too few clinicians,
even in the developed world, who have the
skills to undertake psychotherapy for
individuals with intellectual disabilities. There
are fewer still who are aware of the
psychological issues related to functional
decline, grief secondary to loss of family or
friends, and other life changes that take place
as people age.
Pharmacotherapy is most often used in the
most severe, potentially harmful behavioural
syndromes or in the more biologically driven
mental disorders, and must be tailored to age
related
vulnerability.
Medication
pharmacokinetics, including drug volume of
distribution,
protein-binding,
hepatic
metabolism and renal clearance need to be
considered in formulating psychotropic
regimens. Treatment response time often
lengthens with old age, and strange
environments such as inpatient settings may
result in significant stress that makes the
assessment of change difficult. In addition,
some older adults with intellectual disabilities
may be receiving medications for chronic
medical conditions, and the potential for drug
interactions should be carefully considered.
Thorough knowledge of the biomedical state
of each older adult, as well as close
coordination with primary health care
providers, is necessary for the safe
prescription of psychotropic medications.
Adverse effects such as sedation, increased
confusion, constipation, postural instability,
falls, incontinence, weight gain, sex steroid
dysregulation and other endocrinologic or
metabolic effects, impairments of epilepsy
management, and movement disorders must
be minimized.
WHO/MSD/HPS/MDP/OO.4
Page 6
Healthy Ageing - Adults
There must always be the awareness of risk
and benefit calculations that require detailed
knowledge of the specific adverse effects and
drug interactions of each particular agent.
The potential for acute and long term adverse
effects should be determined and discussed
with adults and carers at the time of initial
prescription and during regularly scheduled
psychotropic medication reviews.
Tertiary prevention, or the treatment of
established disorders with the goal of
minimizing further functional disabilities,
becomes more important with the increasing
age of the person. Although older people, as
do young people, have the right to safe,
effective treatment, at times the ageing
process has brought about so many changes
that a realistic goal becomes modified from
cure to maximization of overall psychosocial
outcomes. The maintenance of mobility, the
preservation of meaningful social interaction,
and the maximizing of cognitive and affective
functioning becomes paramount. Possible
hazards and unpleasant side effects of
treatments must balance the reasonable
likelihood of positive response, resulting in
difficult end-of-life decision making for the
person and significant caring others.
Goal
6.
7
To promote mental health and
minimize negative outcome of
mental health problems in
older people with intellectual
disabilities
Service provision
Formal services that specifically provide
mental health care to older people with
intellectual disabilities are minimal to non
existent throughout the world.
Service
provision needs to be adapted to best deal
with the local cultural and health care
environment, and this is very variable. In
some areas basic life necessities, let alone
mental health delivery to the general
with Intellectual Disabilities: Biobehavioural Issues
population are not yet available, and the
disabled population is often last to benefit
when this does come about. The primary
need may be basic supports in these areas,
whereas in other more privileged areas
sophisticated education about the assessment
and treatment of behavioural and mental
disorders to care providers may be a
reasonable goal.
An overriding goal,
however, in the development of any of these
diverse services is to include the acceptance
of basic principles.
These include
maintenance of respect for the individual and
their families, involvement of the person’s
own needs and wishes in any treatment plan,
and finally development of treatment plans
that are minimally restrictive, culturally
sensitive, and that foster the growth and
autonomy of the person. All treatment
programs should be broadly based with
biological,
psychological
and
social
components.
Goal
8
To increase mental health
services and supports in their
own communities for older
people
with
intellectual
disabilities.
G°al
9
To collaborate with older
people
with
intellectual
disabilities and their support
system
in
developing
culturally sensitive, humane,
and least restrictive mental
health interventions with an
integrated bio-psycho-social
orientation.
Healthy Ageing - Adults with Intellectual Disabilities: Biobchavioural Issues
7.
Quality of life issues
During the past decade there has been
increasing concern regarding the outcomes of
treatment and involvement in intellectual
disability sendees in the assessment of the
social value of services. A similar shift has
also occurred in other sectors, such as child
and adult social services, public health, youth
corrective activities, senior services and
mental health. This type of reorientation in
most sectors represents a substantial change in
how the benefits of human services and other
public or humane enterprises are gauged. The
intended end result is tailoring of the services
and supports to each individual in ways that
encourage and promote the participation of
that particular person with an intellectual
disability in valued social roles. This is
achieved by focusing the benchmarks for
effective services upon outcomes with evident
lifestyle impacts.
These desirable lifestyle impacts are usually
embodied by the expression"quality of life,"
but are informed by philosophical
implications of human and disability rights
developments in many nations. From this
standpoint, the value of professional services
delivered in a high quality manner, the effects
of those services, and the efforts of social
groups, service groups, and advocates are
ascertained with regard to impacts on lifestyle
and related personal and social opportunity.
untoward hindrance on typical activity; (3) A
varied rhythm of life involving preferred
activities and recognition that challenge and
productivity must continue throughout old
age; (4) Participation on a regular and full
basis in the general life of their community
and with friends and acquaintances of one's
preference; and (5) An increased and
well-established
social
network
of
acquaintances, friends and valued social
amenities.
With increasing age, gerontological research
has validated the expected belief that
engagement and minimization of life stressors
have preventive value and can lead to
prolonged life and stable health status. Life
factors that provide for sound nutrition, access
to valued activities, safe and pleasant
domicile, and intellectual challenge can
minimize stress, organic or environmentally
derived psychopathology and reactive
behaviors. A quality old age among persons
with intellectual disabilities will be based on
the same factors that provides for a quality old
age among other persons.
Goal
8.
Valued outcomes that serve as a basis for
demonstrating the social value of intellectual
disability services, but which may vary in
their particulars within different cultures, may
include: (1) Increased practical, leisure, or life
enhancing skills, such as those involved in
making choices between alternative activities,
and those which allow a person to access
community opportunities (e.g., work or
retirement activities), including enduring
benefits; (2) Improved or maintained dietary
and general health status that prevents
physical health factors from becoming an
WHO/MSD/HPS /MDP/00.4
Page 7
10
To improve the quality of life in
older people with intellectual
disabilities and mental health
problems
Research
Most research in the area of mental or
behavioural disorders or problems has had
treatment as its focus. Much less has been
done about the causes and risk factors of such
disorders and their prevention. Almost all of
the data available comes from populations of
persons with intellectual disabilities from
nations with established market economies,
where research funding has been most
available and there has been a critical mass of
workers who specialized in this field. For
instance, prevalence data for psychiatric and
WHO/MSD/HPS/MDP/OO.4
Page 8
Healthy Ageing -
behavioural disorders may differ between
nations with established market economies
and developing nations and treatment
outcomes may vary where the cultural ethos
may inhibit referrals and special resources or
services are limited. Improved health status
and prevention in developing nations, the
principal goal of WHO, must depend on
identification of special issues pertaining to
developing nations and application of
techniques that permit information to be
gathered free of cultural or other restraints.
Well-controlled research in mental and
behavioural disorders as they occur in persons
with intellectual disabilities is limited. Most
of the work over the past 30 years addresses
treatment issues; fewer focused on diagnosis
or etiologic factors, or prevention. Only a
small number address basic mechanisms.
These disappointing data probably reflect
several things, including a well-known lack of
a research focus or funding.
As a
consequence, there are limited numbers of
scientists in the field and a lack of
programmatic efforts in research centers
addressing any relevant issue related to
intellectual disabilities. Without specific
attention from health planners and ministerial
level policy makers, as well as a critical mass
of investigators working on a common
problem in programmatic ways, little
converging data can emerge and, quite likely,
few if any major discoveries will appear
quickly.
Promising lines of inquiry relate to both
treatment
strategies
and
biological
determination and regulation of behavior.
Rigorous methodologies are available to
undertake controlled or randomized clinical
trials for behavioural and pharmacologic
interventions. Recent advances in molecular
genetics and neuropharmacology provide new
opportunities for linking severe behavioural
and psychiatric disorders to brain
neurochemistry. The field must move toward
a research focus that includes a better balance
Adults with Intellectual Disabilities: Biobehavioural Issues
of studies of basic mechanisms, translational
and clinical outcome studies.
Goal
9.
11
To develop a research agenda
that will provide evidence
concerning each goal for all
nations.
Conclusions
Ageing issues in older persons with
intellectual disabilities still remain to be
appropriately identified, assessed and
resolved. The complex interaction between
biological, psychological and social aspects is
arguably the most important area of need at
the start of the next millennium. Psychiatric
and behavioural disorder prevalent among
adults with intellectual disabilities may be
both transnational and culture bound. The
prevalent literature is based in the nations
with established market economies where the
longevity of adults with intellectual disability
is more pronounced and has become a
normative phenomenon. To what extent this
same longevity and prevalence of psychiatric
and behavioural disorders is shared among
nations, other than those with established
market economies is unknown.
The analyses in this paper rely heavily on
research results from nations with established
market economies. For developing countries,
sufficient medical systems or well-trained
physicians may be limited. Also, health care
systems in developing countries often do not
sharply distinguish between people with
mental illness and people with intellectual
disabilities. Thus, data from nations with
established market economies may not be
easily translated to social policy in other
countries. From a policy perspective,
developing nations may have to choose
between allocating limited resources to such
practices as diagnosis and treatment of mental
and behavioural disorders in persons with
intellectual disabilities and improving the
Healthy Ageing - Adults with Intellectual Disabilities: Biobehavioural Issues
WHO/MSD/HPS /MDP/00.4
Page 9
nutritional status of the general population,
perhaps preventing some types of intellectual
or developmental disabilities. Establishing
reliable diagnostic practices that might permit
effective treatment and tracking people with
mental illness and people with intellectual
disabilities may require resources beyond the
indigenous capabilities of some developing
nations.
Consistent with the Standard Rules of the
United Nations, if recognition is to be given
to the value of persons with intellectual
disabilities and to the provision of resources
to improve their general health status so that
longevity becomes a norm, nations will also
have to devote resources to aiding in
treatment of mental and behavioural disorders
that impede or distort normal ageing.
However, first nations will need to internalize
beliefs that value human life and the
productivity of persons with intellectual
disabilities. With valued status, resources will
aid in promoting sound practices in
ameliorating psycho-geriatric issues prevalent
in the population. To this end, at minimum,
there should be a core of professionals and
clinicians with specialized training in
intellectual disabilities and all mental health,
psychiatric, or psycho-geriatric professionals
or clinicians should also receive training in
intellectual disabilities. Such training must
stress the differentiation of intellectual
disabilities from mental illnesses. Further,
specialized resource centers need to be
available to which clinicians, families and
other carers can seek information and referral.
Two main aspects to any new service focus on
this subject are - information and the
appropriate training of practitioners.
References
Albee G. (1982). Preventing psychopathology and
promoting human potential. American Psychologist,
37, 1043-1050.
American Psychiatric Association. (1994). Diagnostic
and statistical manual of mental disorders, fourth
edition DSM-IV. Washington, D.C.: Author.
Berg, J.M., Karlinsky, H., and Holland, A.J. (1993)
Alzheimer disease, Down syndrome and their
relationship. Oxford: Oxford University Press.
Cohen, V. & Day, K. (1993). Contemporary
environmentsfor people with dementia. Baltimore: The
John Hopkins University Press.
Cooper, S-A. (1999). Psychiatric disorders in elderly
people with developmental disabilities. In N. Bouras
(ed.), Psychiatric disorders in developmental
disabilities (pp. 212-225) Cambridge: Cambridge
University Press.
Day, K., & Jancar, J. (1994) Mental and physical
health and aging in mental handicap: a review. Journal
ofIntellectual Disability Research, 38, 241-256.
Davidson, P.W., & Janicki, M.P. (1995, Sept).
Behavior problems and health status in older adults
with mental retardation. Paper presented at annual
meeting of European Association of Mental Health and
Mental Retardation, Amsterdam, The Netherlands.
Janicki, M.P., Heller, T., Seltzer, G. & Hogg, J. (1996).
Practice guidelines for the clinical assessment and care
management of Alzheimer's disease and other
dementias among adults with intellectual disability.
Journal of Intellectual Disability Research, 40,
374-382.
Janicki, M.P., Dalton, A.J., Henderson, C.M., &
Davidson, P.W. (1999). Mortality and morbidity
among older adults with intellectual disability: Health
services considerations. Disability and Rehabilitation,
21, 284-294
Moss, S., Patel, P. (1995) Psychiatric symptoms
associated with dementia in older people with learning
disability. British Journal ofPsychiatry, 167, 663-667.
Pastalan, L. & Carson, D. (1970). Spatial behavior: An
overview. In L. Pastalan, & D. Carson. (Eds.), Spatial
behavior of older people. Michigan: University of
Michigan Press.
Patel, P., Goldberg, D.P., & Moss, S.C. (1993).
Psychiatric morbidity in older people with moderate
and severe learning disability (mental retardation).
Part II: The prevalence study. British Journal of
Psychiatry, 163, 481-491.
Prasher, V.P., Chowdhury, T.A., Rowe, B.R., Bain,
S.C. (1997). ApoE 4 and Alzheimer's disease in adults
with Down syndrome. Effects of ApoE genotype on
WHO/MSD/HPS/MDP/OO.4
Page 10
Healthy Ageing - Adults with Intellectual Disabilities: Biobehavioural Issues
age of onset and longevity: Meta-analysis. American
Journal on Mental Retardation, 102, 103-110.
Prasher, V.P. (1999). Adaptive Behavior.
In M.
Janicki and A. Dalton (Eds.). Dementia, Aging and
Intellectual Disabilities: A Handbook (pp. 157-183).
Philadelphia: Brunner-Mazel.
Schapiro, M.B. (1993). Neuroimaging in adults with
Down syndrome. In Berg, J.M., Karlinsky, H., and
Holland, A.J. (Eds). Alzheimer disease, Down
syndrome and their relationship. Oxford: Oxford
University Press.
Seltzer, G.B.(1993) Psychological adjustment in
midlife for persons with mental retardation. In Sutton
E. (ed.), Older adults with developmental disabilities
(pp.157-184) Baltimore, USA: Paul H. Brookes
Publishing Co.
Healthy Ageing - Adults with Intellectual Disabilities: Biobchaviourai Issues
WHO/MSD/HPS /MDP/00.4
Page 11
10.
Future goals developed at the 10,h
International Roundtable on Ageing and
Intellectual Disabilities
1■
To improve the understanding of normal
psychological functioning throughout the
life-span of people with intellectual
disabilities.
2.
To improve knowledge and awareness of
age-related stressors and their impact on
older people with intellectual disabilities.
3.
To understand and appreciate the social,
cultural environmental and developmental
context of behaviors and their functions in
older people with intellectual disabilities.
4.
To improve the detection and holistic
assessment of mental disorders such as
depression, anxiety and dementia in older
people with intellectual disabilities.
5.
To increase mental health knowledge and
skills in professionals, carers and families
of older people with intellectual disabilities
6.
To develop living environments that are
responsive to the mental health needs of
older people with intellectual disabilities.
7.
To promote mental health and minimize
negative outcome of mental health
problems in older people with intellectual
disabilities.
8.
To increase mental health services and
supports in their own communities for older
people with intellectual disabilities.
9.
To collaborate with older people with
intellectual disabilities and their support
system in developing culturally sensitive,
humane, and minimally restrictive mental
health interventions with an integrated bio
psycho-social orientation.
10.
To improve the quality of life in older
people with intellectual disabilities and
mental health problems.
11.
To develop a research agenda that will
provide evidence concerning each goal for
all nations.
Healthy Ageing - Adults with
WHO/MSD/HPS/MDP/OO.7
Page 22
6.3
Health
regions
personnel
in
developing
Health and social service personnel in
developing regions require training and
support in identifying the specific social
support and healthcare needs of older people
with intellectual disabilities. In particular, it
is important to alert staff to the specific
conditions that may affect older people with
intellectual
disabilities
and
ensure
appropriate treatment.
Further, it is
important to expose staff to sound
community support models that enrich older
age and sustain productive ageing.
By
highlighting people with intellectual
disabilities, the pool of personnel who are
both knowledgeable and sympathetic
towards those with intellectual disabilities
and their families may be increased.
Recommendation 20
[Education & Training (6)]
20a Public awareness of the nature and
needs of older people with intellectual
disabilities must be raised through channels
appropriate to the particular society or
culture.
humanitarian aspects of ageing. It urges
research at the local, national, regional and
global levels with a special emphasis on
cross-cultural studies and interdisciplinary
work. Among the research topics identified
four are of particular relevance to health and
social policy:
•
•
•
•
20c
Where a policy of integration with
generic elderly services is being undertake,
part of the preparation should involve staff
training with respect to management of the
process of integration and the nature and
needs of older people with intellectual
disabilities.
the use of skills, expertise,
knowledge and cultural potential of
older people
the postponement of negative
functional consequences of ageing
health and social services for the
ageing as well as studies of co
ordinated programmes
training and education
The specific agendas for research with older
people with intellectual disabilities in each
of these four areas may be derived from the
previous sections 4 to 6. In broad terms,
research is called for into:
•
•
20b
Staff working with people with
intellectual disabilities require training to
respond to age-relate needs.
Intellectual Disabilities: Ageing & Social Policy
•
•
7.0 Research and Evaluation: Scant
Information and the Need for Research
•
The UN International Plan of Action on
Ageing gives high priority to research
related
to
the
developmental
and
•
Structural practices endemic to
developing nations that can more
successfully promote longevity and
healthy ageing of persons with
intellectual disabilities.
Practices that promote successful
and productive ageing of persons
with intellectual disabilties.
Morbidity and mortality studies of
older people with intellectual
disabilities.
The conditions under which the
health and social needs of older
people with intellectual disabilities
can be met within the context of
generic services, and the extent to
which additional specialist provision
is required.
Evaluation of programmes aimed at
maintaining functional abilities and
extending competence in later life.
Factors which lead to increased
inclusiveness or exclusion in society
Healthy Ageing - Adults
with Intellectual Disabilities: Ageing & Social Policy
WHO/MSD/HPS/MDP/OO.7
Page 23
b!lreSPeC' “ b°,h ^-Peers and
mtergenerational solidarity
The educational and training
needs of those providing
services to older people with
intellectual disabilities to
ensure that quality of life is
maintained at the highest
possible level.
Cross-cultural studies that will
ensure common aspects of good
quality provision are identified as
well as specific cultural influences of
significance.
Cultural and economic factors that
support family caregiving.
Recommendation 21
[Research and evaluation (7)\
21a
A detailed programme of research
that takes into account the differing
scientific base and cultural contexts of
developing and developed regions needs to
be formulated.
in which health and social policies can be
improved will benefit from the same support
as that to be offered to their peers without
intellectual disabilities.
9.0 References
1.
2.
3.
4.
5.
6.
21b
The research and informational
needs of developing countries should be
defined and the technical and economic
requirements worked out in order to ensure
that workers in developed countries can
assist in meeting these goals.
7.
8.0 Future Action
8.
The LW International Plan of Action on
Ageing describes in some detail the role of
international and regional co-operation with
respect to implementation of the plan. This
encompasses direct assistance - both
technical and financial - co-operative
research and the exchange of information
and experience. A wide range of agencies
and mechanisms for such co-operation are
indicated. It is hoped that in raising the
profile of older people with intellectual
disabilities in this and the accompanying
WHO documents, consideration of the ways
9.
10.
11.
United Nations, International Plan of Action
on Ageing. 1998, United Nations/Division for
Social Policy and Development: New York.
Kinsella, K. and Y.J. Gist, Older Workers,
Retirement and Pensions: A comparative
international chartbook. 1995, Washington
DC: Bureau of the Census.
Miles, M., Mental retardation and service
development:
Bengal and Bangladesh.
Behinderung und Dritte Welt, 1997. 8(1): p.
25-32.
Yacob, M., A. Bashira, K. Tareen, K.H.
Gustarson, R. Nazir, F. Jalil, U. VonDoben,
and H. Femgren, Severe mental retardation in
2 to 24-months-old children in Lahore,
Pakistan: A prospective cohort study. Acta
Paediatrica, 1995. 84: p. 267-272.
McConkey, R. and B. O’Toole, Towards the
new millennium, in Innovations in Developing
Countries for People with Disabilities, B.
O’Toole and R. McConkey, Editors. 1995,
Lisieux Hall: Chorley, Lancs, p. 3-14.
O’Toole, B., Mobilizing communities in
Guyana, in Innovations in Developing
Countries for People with Disabilities, B.
O’Toole and R. McConkey, Editors. 1995,
Lisieux Hall: Chorley, Lancs, p. 85-104.
Neufeldt, A., Self-directed employment and
economic
independence
in
low-income
countries, in Innovations in Developing
Countries for People with Disabilities, B.
O’Toole and R. McConkey, Editors. 1995,
Lisieux Hall: Chorley, Lancs, p. 161-182.
Hogg, J., S. Moss, and D. Cooke, Ageing and
Mental Handicap. 1988, London: Croom
Helm.
Wieland, H., Geistig behinderte Menschen im
Alter: Theoretische und empirische Beitrage
zu
Hirer
Lebenssituation
in
der
Bundesrepublik Deutschland, in Osterreich
und in der Schweiz. 1987, Heidelberg: Ed
Schindele.
Dupont, A., M. Vaeth, and P. Videbech,
Mortality, life expectancy, and causes of death
of mildly mentally retarded in Denmark.
Upsala Journal of Medical Sciences, 1987. 44
(Supp): p. 76-82.
Reboul, H., P. Comte, M.-C. Jeantet, and J.
Rio, Les Handicapes Mentaux Vieillissant: A
la
recherche
de
solutions
adaptees,
individuelles, collectives. ND, Vanves: Centre
Technique
National
D'Etudes
et
de
Adults with Intellectual Disabilities: Ageing & Soeial Policy
Healthy Ageing - Adults
WHO/MSD/HPS/MDP/OO.7
Page 24
12.
13.
14.
15.
16.
17.
18.
19.
20.
21.
22.
23.
24.
25.
Recherches sur les Handicaps et les Inadaptations
Maaskant. M.A., Mental Handicap ana
Ageing. 1993, Dwingeloo: Kavanah.
Mulcahy, M. and A. Reynolds, Census oj
Mental Handicap in the Republic of Ireland.
1984, Dublin: Medico-Social Research Board.
Janicki, M.P., Aging and new challenge.
Mental Retardation, 1988. 26: p. 177-180.
Janicki, M., A. Dalton, M. Henderson, and r.
Davidson, Mortality and morbidity amoung
older adults with intellectual disabilities:
Health services considerations Disability and
Rehabilitation, in press.
Ashman, A.F., J.N. Suttie, and J. Bramley,
Employment, retirement and elderly persons
with an intellectual disability. Journal of
Intellectual Disability Research, 1995. 39: p.
107-115.
Eyman, R.K., T.L. Call, and J.F. White,
Mortality of elderly mentally retarded persons
in
California.
Journal
of
Applied
Gerontology, 1989. 8: p. 203-215.
Eyman, R.K., T. Call, and J.F. White, Life
expectancy of persons with Down syndrome.
American Journal of Mental Retardation,
1991.95: p. 603-612.
Haveman, M.J., M.A. Maaskant, and F.
Sturmans, Older Dutch institutionalized
residents with and without Down syndrome:
Comparisons of mortality and morbidity
trends and motor/social functioning. Australia
and New Zealand Journal of Developmental
Disabilities, 1989. 15: p. 241-255.
Eyman, R.K., H.J. Grossman, G. Tarjan, and
C.R. Miller, Life expectancy and mental
retardation. 1987, Washington DC: American
Association on Mental Retardation.
Zigman, W.B., G.B. Seltzer, M. Adlin, and
W.P. Silverman, Physical, behavioral, and
mental health changes associated with aging,
in Aging and developmental disabilities:
Challenges for the 1990s, M.P. Janicki and
M.M. Seltzer, Editors. 1991, Special Interest
Group on Aging, American Association on
Mental Retardation: Washington DC. p 5275.
Lianta, D., An Indonesian perspective, in
Aging and Developmental Disabilities:
Perspectives from nine countries, S. Moss,
Editor. 1992, University of New HampshireDurham NH. p. 53-58.
Khatleli, P., L. Mariga, L. Pachaka, and S.
Stubbs, Schools for All: National planning in
Lesotho, in Innovations in Developing
Countries for People with Disabilities, B.
O’Toole and R. McConkey, Editors. 1995
Lisieux Hall: Chorley, Lancs, p. 135-160.
Saunders, C. and S. Miles, The Uses and
Abuses of Surveys in Service Development
Planning for the Disabled: The case of
Lesotho. 1990, London: SCF.
J
Heller, T. and A. Factor, Permanency
planning among Black and White family
caregivers of older adults with mental
retardation. Mental Retardation, 1988 26- n
203-208.
'
26.
27.
Heller T R. Markwardt, L. Rowitz, and B.
Farber Adaptation of Hispanic families to a
member with mental retardation. American
Journal on Mental Retardation, 1994. 99: p.
289-300.
, .
. .
Moss
S
Conclusion, tn Aging and
Developmental Disabilities: Perspectives from
nine countries, S. Moss, Editor. 1992,
University of New Hampshire: Durham NH.
Wellh Health Planning Forum, Protocol for
28.
Investment in Health Gain, Mental Handicap
(Learning Disabilities). 1992, Welsh Office:
Van^'schrojenstein Lantman-de Valk, H.M.,
29.
30.
31.
32.
33.
34.
35.
36.
37.
38.
M. Van den Akker, M.A. Maaskant, M.J.
Haveman, H.F. Urlings, A.G. Kessels, and
H.F. Crebolder, Prevalence and incidence of
health problems in people with intellectual
disability. Journal of Intellectual Disability
Research, 1997b. 41: p. 42-51.
Patterson, C. and L.W. Chambers, Preventive
health care. Lancet, 1995. 345: p. 1611-1615.
Kerr, M., F. Dunstan, and A. Thapar, Attitudes
of general practitioners to caring for people
with learning disability. British Journal of
General Practice, 1996. 46: p. 92-94.
Van Schrojenstein Lantman-de Valk, H.M.,
J.F. Metsemakers, M.J. Soomers-Turlings,
M.J. Haveman, and H.F. Crebolder, People
with intellectual disability in general practice:
case definition and case finding. Journal of
Intellectual Disability Research, 1997a. 41: p.
373-379.
Minihan, P.M., D.H. Dean, and C.M. Lyons,
Providing Care to Patients with Mental
Retardation: A survey of physicians in the
State of Maine. 1990, Joint Community Health
Project: Boston MA.
Kane, R.L. and R.A. Kane, Healthcare for
older people: Organizational and policy
issues, in Handbook of Ageing and Social
Sciences, R.H. Binstock and L.K. George,
Editors. 1990, Academic Press: New York. p.
415-437.
Emerson, E. and C. Hatton, Moving Out: The
impact of relocation from hospital to
community on the quality of life ofpeople with
learning disabilities. 1994, London: HMSO.
Strauss, D., R. Shavelle, A. Baumeister, and
T.W. Anderson, Mortality in persons with
developmental disabilities after transfer into
community care. American Journal on Mental
Retardation, 1998. 102: p. 569-581.
Heller, T., Residential relocation and
rea^lons of elderly retarded persons, in Aging
and developmental disabilities: Issues and
qtproaches,
M.P.
Janicki
and
H.M.
Wisniewski,
Editors.
1985
Brookes:
Baltimore MD.
Conroy, J.W. and M. Adler, Mortality among
Pennhurst Class members, 1978 to 1989: A
380
Menta* Retardation- 1998- 36: p-
0
Ageing . Ad.,,,
Dh<bfc A8t.ni *
WHO/MSD/HPS/MDP/OO.7
Page 25
39.
40.
41.
42.
43.
44.
45.
46.
47.
48.
49.
50.
51.
52.
Maaskant, M.A., M. Van den Akker, A.G H
Kessels,
MJ.
Haveman,
H.M.
Van
Schrojenstein Lantman-de Valk, and HF J
Yri™8,s’ Care dependence and activities of
daily living in relation to ageing: Results of a
longitudinal study. Journal of Intellectual
Disability Research, 1996: p. 535-543
Devenny, D.A., W.P. Silverman, A.L. Hill E
Jenkins, E.A. Seren, and K.E. Wisniewski,
Normal ageing in adults with Down's
syndrome: A longitudinal study. Journal of
Intellectual Disability Research, 1996 40- n
209-221.
’ P’
Janicki, M.P, T. Heller, G. Seltzer, and J.
Hogg, Practice Guidelines for the clinical
assessment
and care management of
Alzheimer and other dementias among adults
with mental retardation. 1995, Washington,
DC: American Association on Mental
Retardation.
Rimmer, J.H., D. Braddock, and B. Marks,
Health characteristics and behaviours of
adults with mental retardation residing in
three living arrangements. Research in
Developmental Disabilities, 1995. 16: p. 489499.
Turner, S. and S.C. Moss, The health needs of
adults with learning disabilities and the
Health of the Nation Strategy. Journal of
Intellectual Disability Research, 1996. 40: p.
438-450.
Siddell, M., Health in old age: Myth, mystery
and management. 1995, Chichester: Wiley.
WHO, Alma Ata 1978 Primary Health Care, .
1978, WHO: Geneva.
Hong, J. and M.M. Seltzer, The psychological
consequences
of multiple
roles:
The
nonnormative case. Journal of Health and
Social Behavior, 1995. 36: p. 386-98.
Walker, C. and A. Walker, Uncertain Futures:
People with learning difficulties and their
ageing family carers. 1998, Brighton: Pavilion
Press.
Sutton, E., T. Heller, H.L. Stems, A. Factor,
and A. Miklos, Person Centered Planning for
Later Life: A curriculum for adults with
mental retardation. 1994, Chicago: University
of Illinois, Akron OH.
Hogg, J., Leisure and intellectual disability:
The perspective of ageing. Journal of Practical
Approaches to Developmental Handicap,
1994. 18: p. 13-16.
Campos, M., Developing livelihoods, in
Innovations in Developing Countries for
People with Disabilities, B. O’Toole and R.
McConkey, Editors. 1965, Lisieux Hall:
Chorley, Lancs, p. 71 -84.
Seltzer, M.M. and M.W. Krauss, Aging and
Mental Retardation: Extending the continuum.
1987, Washington DC: American Association
on Mental Retardation.
Laughlin, C. and P.D. Cotton, Efficacy of a
pre-retirement planning intervention for
ageing individuals with mental retardation.
53.
Journal of Intellectual Disability Research,
1994. 38: p. 317-328.
Heller, T., A.B. Miller, and A. Factor.
Environmental characteristics of residential
settings and well-being of adults with
intellectual disabilities. in International
Association for the Scientific Study of
Intellectual Disabilities. 1998. Cambridge,
England, March 1998.
Bengston, V., C. Rosenthal, and L. Burton,
Families
and
aging:
Diversity
and
heterogeneity, in Handbook of Aging and
Social Sciences, R.H. Binstock and L.K.
George, Editors. 1990, Academic Press:
London, p. 263-287.
LePore, P. and M. Janicki, The Wit to Win:
How to integrate older persons with
developmental disabilities into community
aging programs (3rd rev). 1997, Albany NY:
New York State Office of Mental Retardation
& Developmental Disabilities.
Janicki, M.P., Building the Future: Planning
and Community Development in Aging and
Developmental Disabilities: Second edition.
1993, Albany NY: New York State Office of
Mental
Retardation
&
Developmental
Disabilities.
Inclusion International. Extending Lives Extending Opportunities: Report of Inclusion
International’s Open Project Group on Needs
and Appropriate Supports for Ageing People
with Mental Handicap/Intellectual Disability.
1998.
Ferney-Voltaire, France: Inclusion
International.
Rowe, J.W., and Kahn, R.L. Successful
Aging. 1998. New York: Pantheon Books.
World Health Organization
Ageing and Health Programme
The Role of Physical Activity
in Healthy Ageing
WHO/HPR/AHE/98.2
WHO/HPR/AHE/98.2
English only
Distr: General
Doc.: physact.pro
13.7.98
U
This document is not a formal publication of the World Health Organization (WHO)
and all rights are reserved by the Organization. The document may, however, be freely reviewed,
abstracted, reproduced and translated, in part or in whole, but not for sale nor for us
in conjunction with commercial purposes.
The views expressed in documents by named authors are solely the responsibility of those authors.
TABLE OF CONTENTS
1.
AGEING
2.
AGEING AND FUNCTIONAL HEALTH
3.
4.
5.
6.
7.
1
1
FUNCTIONAL HEALTH IN EVERYDAY LIFE
3.1
Coping with the everyday
3.2
Experiences of coping in everyday life
3.3
Social implications of maintaining functional ability
3
3
3
3
PHYSICAL ACTIVITY AND ITS BENEFITS FOR AGEING PEOPLE
RESEARCH EVIDENCE ON THE BENEFITS
Introduction
5.1
Mobility
5.2
Cardiovascular disease
5.3
Osteoporosis
5.4
Falls
5.5
Glucose metabolism (diabetes)
PHYSICAL ACTIVITY AND MENTAL HEALTH
Introduction
6.1
Depressive symptoms
6.2
Anxiety
4
4
4
5
6
6
6
7
7
7
8
9
WHAT KIND OF PHYSICAL ACTIVITY?
10
8.
WALKING
10
9.
HOW TO ENCOURAGE PHYSICAL ACTIVITY IN DAILY LIFE
11
10.
LIFE AS A PROJECT
10.1
What kind of exercise?
12
13
REFERENCES
14
The Role of Physical Activity in Healthy Ageing
1-
AGEING
Ageing is an integral, natural part of life. The way in which we grow old and experience
this process, our health and functional ability all depend not only on our genetic makeup,
but also (and importantly) on what we have done during our lives; on what sort of things
we have encountered in the course of our lifetime; on how and where we have lived our
lives. Lifespan is defined as the maximum survival potential for a particular species. In
human beings, the lifespan is thought to be about 110 to 115 years (Matteson 1997). Life
expectancy, then, is defined as the average observed years of life from birth or any stated
age.
Despite recent developments, the basic biological mechanisms involved in the ageing
process remain largely unknown. What we do know is that:
1)
ageing is common to all members of any given species;
2)
ageing is progressive; and
3)
ageing involves deleterious mechanisms that affect our capacity to perform a
number of functions.
Ageing is a highly complex and variable phenomenon. Not only do organisms of the
same species age at different rates, but the rate of ageing varies within the single
organism of any given species. The reasons for this are not fully known. Some theorists
argue that individuals are bom with a particular amount of vitality - the ability to sustain
life - which continually diminishes with advancing age. Environmental factors also
mediate the length of life and time of death (Dychtwald 1986).
With the process of ageing, most organs undergo a decline in functional capacity and in
their ability to maintain homeostasis. Ageing is a slow but dynamic process which
involves many internal and external influences, including genetic programming and phy
sical and social environments (Matteson 1997). Ageing is a lifelong process. It is multi
dimensional and multidirectional in the sense that there is variability in the rate and di
rection of change (gains and losses) in different characteristics for each individual and
between individuals. Each period of life is important. Thus it follows that ageing should
be viewed from a life course perspective.
2.
AGEING AND FUNCTIONAL HEALTH
With the continuing growth of elderly populations in modem societies, it has become a
matter of increasing urgency to look for ways to maintain and improve the functional
abilities of ageing people, to help them cope independently in the community and
ultimately, to raise the quality of their lives. The incidence of many chronic illnesses and
disabilities increases with age. In Jyvaskyla, Finland, among those aged 75 and over,
only about one-tenth has no clinically diagnosed disease (Laukkanen et al 1997).
However, people adapt: almost half of these elderly people describe their own health as
good. Usually people assess their health status by comparing it with that of their peers,
so self-reported health assessment may be described as "age-adjusted". Disability-free
life expectancy varies between countries and cultures. The health of older people should
not and cannot be examined simply from the vantage-point of disease prevalence or the
absence of illness. Even when they do have illnesses, large numbers of older people feel
WHO/HPR/AHE/98.2
physact.pro
perfectly healthy because the illnesses do not have major adverse effects on their
everyday lives.
Research on ageing has traditionally been concerned with health, but recently the
concept of functional capacity has also been attracting growing attention. Although the
significance of function in health and illness has long been appreciated, it was not until
the 1950s that its importance was recognized as the numbers of older and disabled per
sons grew and the prevalence of chronic disease increased (Katz and Stround 1989). The
importance of function was affirmed by the US Commission on Chronic Illness and the
World Health Organization, which fostered the development of a scientific base for
measuring functional status. Further theoretical research and instrument development
examined key constructs of functional health: activities of daily living (ADL),
instrumental activities of daily living (IADL) and psychological and social variables.
The functional ability of elderly people is crucial to how well they cope with activities of
daily living, which in turn affects their quality of life.
Functional status can be defined as a person's ability to perform the activities necessary
to ensure well-being. It is often conceptualized as the integration of three domains of
function: biological, psychological (cognitive and affective), and social. Thus, functional
assessment is derived from a model which observes how the interrelationship of these
domains contributes to overall behaviour and function. In older persons, adaptive res
ponses to stressors in each of these domains assume increasing importance. Although
developmental and ageing processes can cause wide variations, measures of physical
health attempt to ascertain overall health and fitness levels. Commonly-used indicators
of physical health include diagnoses and conditions present, symptoms, handicaps,
categories of drugs taken, severity of illness, and quantification of medical services
utilized - for example, number of hospital days per year, or days unable to perform usual
activities per year (Kane and Kane 1981, Kane 1984). Self-ratings of health and
disability may also be included in such measures. Scales of functional status address
activities of daily living (bathing, dressing, feeding, transfers, continence and ambulation) and those instrumental activities of daily living (housekeeping, shopping, taking
medicines, using transportation, using the telephone, cooking and managing money)
which are usually necessary for independent living.
Functional competence has also been defined as the degree of ease with which
individuals think, feel, act, or behave in congruence with their environment and the
expenditure of energy. Functional health has also been associated with quality of self
maintenance, quality of role activity, intellectual status, emotional status, social activity
and attitudes towards the world and self.
Health and functional ability are crucially important to the quality of people's social
lives: level of functional ability determines the extent to which they can cope
independently in the community, participate in events, visit other people make use of
the services and facilities provided by organizations and society, and generally enrich
their own lives and those of the people closest to them.
J
Population groups within the same country often remain divided by significant
disparities in morbidity, mortality and functional ability. The research evidence indicates
that length of education is a major factor in determining health disparities between
»
WHO/HPR/AHE/98.2
physact.pro___________
population groups. Education, in its turn, is closely linked to income, life-styles, work,
working conditions, housing conditions, and opportunities at large. A major determinant
of people's life chances is their financial situation.
3.
3.1
FUNCTIONAL HEALTH IN EVERYDAY LIFE
Coping with the everyday
Assessment of functional ability often includes an evaluation of the individual's ability to
carry out various activities of daily living. The ADL scales that have been developed
over the past few decades now have a more or less standardized content and format con
sisting of items relating to Physical Activities of Daily Living (ADL), and Instrumental
Activities of Daily Living (IADL). The former address various self-care activities such
as eating, dressing, personal hygiene, and moving about in and outside the house (Katz
et al 1963, Kane and Kane 1981,Wiener et al 1990), while IADL functions are related to
household management, running errands outside the home, use of public transport,
cooking meals, etc. (Lawton and Brody 1969, Fillenbaum 1985, Laukkanen et al 1994).
The research evidence indicates that almost all home-dwelling people aged 75-80 can
cope with ADL. Problems occur more frequently with IADL tasks. The "cultural"
differences in coping with everyday activities are most clearly reflected in the
differences between men and women's abilities to perform everyday chores (Laukkanen
et al 1994). Rogers and Miller (1997) suggest that it may be possible to limit the number
of ADL questions to a 3-item index. The basic activities would then be walking across a
room, dressing and bathing.
3.2
Experiences of coping in everyday life
Coping in everyday life is an integral part of measuring functional health. One of the
clearest indicators of lowered functional health is a sense of fatigue (Avlund 1995).
Researchers have pointed out that it is important to take this feeling seriously and
respond accordingly. People should talk to health care staff about fatigue, especially if it
persists without an obvious explanation, as it may be a sign of illness or the onset of
decline in functional health.
3.3
Social implications of maintaining functional ability
Every community of human individuals involves, by definition, different kinds of
relationships which bind people together both within and across generations.
Autonomy is frequently cited as something that helps improve quality of life. The debate
on autonomy has tended to emphasize independence, the ability to cope alone, of people
having control over their lives (Heikkinen 1997). Although dependence is a possibility at
any point in life - and it can be short-term or long-term, partial or overwhelming - every
thing converges on the maintenance and/or improvement of functional ability, on the
individual being instrumental in improving his own quality of life. Independence is
important for everyone but so, given human societal structures, is interdependence. In
"ageing well", perhaps the best goal that can be set is to look after oneself and others.
An important part of this is safeguarding functional ability and health (Heikkinen 1997).
WHO/HPR/AHE/98.2
physact.pro
4.
PHYSICAL ACTIVITY AND ITS BENEFITS FOR AGEING PEOPLE
An international consensus statement regarding physical activity, fitness and health
(Bouchard et al 1994) identifies six areas affected by physiological effort: body shape,
bone strength, muscular strength, skeletal flexibility, motor fitness and metabolic fitness.
Additional areas that benefit from physical activity are cognitive function, mental health
and social adjustment. Exercise has been defined as a regular, patterned time activity
pursued to achieve desirable fitness outcomes, such as an improved level of general
health or physical performance (Bouchard and Shephard 1994). Fontane (1996)
describes physical activity as a continuum of physical behaviour: 1) activities of daily
living; 2) instrumental activities of daily living; 3) general activity and exercise; 4)
fitness exercise and 5) exercise training. Those who start physical exercise early in life
tend to continue it later. So what a person does with leisure seems to shape and develop
leisure itself (Mobily 1987, Mobily et al 1991, Mobily et al 1993). In 1995, a WHO
expert group underlined the positive health effects of physical exercise by saying that
physical inactivity is an unnecessary waste of human resources. A passive, mainly
sedentary lifestyle, the expert group pointed out, is known to be an important risk factor
for poor health and reduced functional ability.
The lowered level of physical activity and the growing number of chronic illnesses that
often follow with increasing age, frequently create a vicious circle: illnesses and related
disabilities reduce the level of physical activity, which in turn has adverse effects on
functional ability and exacerbates the disabilities caused by the illnesses. A greater
degree of physical activity can help to prevent many of the negative effects ageing has
on functional ability and health. Physical activity is also the best way to break the
vicious circle and move on to a path of progressive improvement. This, ultimately, helps
elderly people to and increases their independence.
The benefits to be gained from sensible physical exercise considerably outweigh the
potentially adverse effects. These benefits include improved functional ability, health
and quality of life, with a corresponding decrease in costs of health care, both for the
individual and for society at large. Physical activity involves no immediate drawbacks,
although excessively intensive exercise may cause injuries and/or illness and subsequent
costs. This kind of cost-benefit analysis provides a useful basis for evaluating
campaigns that encourage physical activity as a path to better health.
5.
RESEARCH EVIDENCE ON THE BENEFITS
Introduction
The research results indicate that as well as increasing muscle capacity physical activity
can help to improve stamina, balancejoint mobility, flexibility, agility’ walking soeed
and overall physical coordination. Physical activity also has favourable effects on
metabolism, the regulation of blood pressure, and the prevention of excessive weight
gain. Furthermore, there is epidemiological evidence that regular vigorous exercise is
related to a decreased risk of cardiovascular diseases, osteoporosis, diabetes and some
forms of cancer
°
dUlllc
WHO/HPR/AHE/98.2
physact.pro
5.1
Mobility
One of the most crucial factors determining functional capacity is mobility. As the
musculoskeletal system deteriorates with increasing age, mobility problems increase.
This is one of the most significant changes that adversely affects the ability of older
people to cope independently in their communities and to have contacts with other
people. Impaired mobility also greatly increases the need for different kinds of services.
The capacity of the human body to make use of muscle strength peaks between ages 20
and 30 and from there on steadily declines with age, most significantly between ages 50
and 60. In a recent study, some 30% of men and 50% of women aged 65-74 years did
not have sufficient muscle strength to lift 50% of their weight (Ashton 1993). At age 70,
males are usually capable of exerting about 80 % and women around 65 % of the
maximum muscle strength of young people aged 20. These changes are the result of a
reduction in the size and number of muscle cells. Leg muscle strength is particularly
important in walking, negotiating stairs and maintaining general mobility. Stair
climbing is one way in which leg muscle strength can easily be improved. Any similar
type of exercise will sooner or later have a positive effect on the quality of everyday life.
Buchner and de Lateur (1991) argue that there is a threshold relationship between
muscle strength and certain functional abilities such as the ability to climb stairs. This
means that normally, adults have much more strength than is needed to perform basic
daily activities. Thus, if policy makers, when trying to assess reductions in mobility,
depend upon people recognizing their own functional limitations, the amount of
impaired mobility in the population as a whole (including older people) is likely
systematically to be underestimated.
The first age-related changes that can affect mobility are anthropometric changes. Crosssectional studies have shown that stature and range of motion in the joints tend to
decline with age (Schultz 1992). People between 65 and 74 years of age are
approximately 3 per cent shorter than people between 18 and 24: this is thought to be
due primarily to the shortening of intervertebral disc spaces and associated kyphosis.
Cross-sectional studies of differences in joint range of motion have shown a general
decrease with advancing age among healthy elderly people, although the amount of
decline varies substantially with the group of individuals studied and the joint measures.
In addition to age-related changes in anthropometries, joint range of motion and
strength, age-related decline in postural balance, gait and ability to transfer from one
surface to another may underlie reduced physical mobility. Extensive studies of agerelated changes in postural balance show age-related decrements in the sensory-motor
systems that underlie postural control, even in the absence of awareness of difficulty.
Gait disturbances have been documented extensively among older people, including
shorter step and stride length and decreased ankle extension and pelvic rotation.
However, it is controversial whether these changes are due to a normal ageing process or
whether they are pathological changes accompanying old age. Gait speed is related to
aerobic capacity (Cunningham et al. 1982), muscle strength (Bassey et al. 1988),
presence of other chronic diseases (Bendall et al. 1989), ability to rise from a chair
(Friedman et al. 1988) and cognition (Visser 1983). Recently Tinetti and colleagues
(1994) began research on confidence in mobility as a factor that may independently
affect mobility.
WHO/HPR/AHE/98.2
physact.pro
There are also some findings which indicate that difficulties in moving about in °ors
and outdoors, reduced walking speed and reduced muscle strength all were associate
with an increased risk of death during the five-year follow-up period (Laukkanen et al
1995).
5.2
Cardiovascular disease
Cardiovascular disease is the leading cause of death in many countries. There are several
risk-factors associated with atherosclerotic heart disease such as smoking, obesity and
high blood pressure. There is strong epidemiological evidence that regular vigorous
physical activity is related to a decreased risk of cardiovascular disease (Kannel and
Sorlie 1979; Kottke, Puska, Salonen et al 1985; Barry 1986; Donahue, Abbot, Reed et al
1988; Berlin and Colditz 1990). The contribution of exercise to reducing morbidity and
mortality is apparent in many ways:, positive changes can be seen, for instance, in
cardiovascular efficiency, blood lipids, blood pressure and thrombotic tendency.
5.3
Osteoporosis
Loss of bone mineral density, and the directly-related increased risk of bone fracture
(Cheng et al 1997), has considerable socioeconomic implications in western societies.
Age-related osteoporosis begins at around age 40 and continues for the rest of the
individual's life-span. Because of their more dramatic hormonal changes, osteoporosis is
more common in women than in men. Exercise has a role in treating osteoporosis. The
general trend of most published study findings is so consistent that the use of weight
bearing exercise is considered a standard treatment for osteoporosis (Krolner et al 1983;
Chow et al 1987). The role of exercise in prevention of osteoporosis is less clear,
however (Elward and Larson 1992). Findings from existing studies are compromised by
the lack of control for diet, weight and behavioural changes. There are also limitations in
measurement techniques (Elward and Larson 1992). It seems likely that exercise does
not strengthen all types and locations of bone but rather affects those areas actually used
during the exercise.
5.4
Falls
Exercise can also help to reduce the frequency of falls, which are a major cause of
broken bones and which predict difficulties not only in activities of daily living but also
in the whole life (Rivara et al 1997). Falls more frequently have more serious
consequences for elderly people than for those who are younger. It is estimated that
every person aged over 65 suffers at least one fall each year, while the number of falls
among those of 85 years and over is about eight times greater than in the age group 6569. About one-third of those who fall suffer fractures as a consequence. Cheng et al
(1994) showed that falls are common among elderly people, but it can be assumed that
only those persons who have low BMD values frequently develops fractures. A fall was
the main reason for fractures in the age-group studied (75 and 80 year-old men and
women). Evidence is increasing that factors other than osteoporosis are important in the
pathogenesis of common fractures. Ninety per cent of hip fractures in elderly people
seem to be the result of falls (Grisso, Kelsey, Strom et al 1991).
H p
Dargent-Molina et al (1996) maintain that factors such as muscle strength, neuro
WHO/HPR/AHE/98.2
physact.pro
muscular coordination, postural stability, steadiness of gait and the structural properties
of bone all influence fall frequency. Referring also to Tinetti et al (1988) and Nevitt et al
(1989), they stated that performance-related measurements of physical capacity
(particularly measurements of balance and gait impairments) are strong predictors of risk
of falling among elderly individuals. The findings further suggested that neuromuscular
impairment may play two distinct roles in the occurrence of hip fractures: it may not
only increase the risk of falling but also influence an individual's speed, coordination and
protective responses during a fall. Another important finding was that visual impairment
is an independent risk for hip fracture. These findings suggest that intervention
programmes to prevent hip fractures should target both fall-related factors and the
maintenance of bone mass (Dargent-Molina et al 1996).
In everyday life, the combination of reaction speed, coordination and strength is the key
factor in carrying out tasks. Rivara et al (1997) mention that the most important risk
factors for falls and fall-related injuries among older people are a history of one or more
prior falls, cognitive impairment, a low body-mass index, female sex, general frailty, use
of diuretics, use of psychotropic drugs and hazards in the home. In their review article
related to physical exercise, they mention weight-bearing exercise, physical exercise
combined with balance training and multimodal programmes (Province et al 1995;
Tinetti et al 1994) as being effective preventive measures.
Limitations in joint range of motion often mean that ageing individuals have to give up a
number of activities.
5.5
Glucose metabolism (diabetes)
Type II (maturity-onset) diabetes usually occurs after the age of 40 and is strongly
associated with obesity (Ashton 1993). Glucose tolerance deteriorates with increasing
age. Regular moderate exercise appears to reduce the risk of developing Type II diabetes
in both normal and obese middle-aged people (Ashton 1993). Later-stage diabetes is
associated with many disorders (such as blindness and neuropathy which can lead to the
amputation of extremities), each of which has its own substantial impact on function and
quality of life. It is known that exercise improves the physiological control of glucose
metabolism and evidence does exist which suggests that regular aerobic exercise of at
least 30 minutes' duration three or more times a week offers potential benefits to those
elderly people with glucose intolerance or overt diabetes (Harris 1984; Tonino 1989).
6.
PHYSICAL ACTIVITY AND MENTAL HEALTH
Introduction
The connections between physical activity and mental health have been studied quite
extensively in young and middle-aged people, but not in older people. Physical activity
is most typically described in terms of a specific type of physical exercise. Most work in
this field to date has taken the form of intervention studies aimed at preventing or
resolving mental health problems by means of exercise programmes. At the population
level there has been very little research on the possible effects on mental health of
lifelong regular exercise.
WHO/HPR/AHE/98.2
phygact.pro
The focus of earlier research was on the indirect effects of physical exercise. Most
studies found a positive correlation between exercise and mental health, albeit an
ambiguous one: it is not known which influences the other or in what direction the
influence operates. Furthermore, the correlation is not normally particularly strong, nor
does it not show up in all studies. The most common positive effects of physical exercise
on mental health are reduced depression and anxiety, better tolerance of stress and
improved self-esteem (Brannon & Feist 1992).
The research evidence on the connection between physical activity and mental health is
not conclusive as far as the intensity of this connection is concerned. Some researchers
maintain that the evidence points at a causal link between physical exercise and mental
health (e.g. Brannon & Feist 1992), while others indicate that they have only been able
to demonstrate that there is a correlation (e.g. Sime 1990). In most cases, the evidence
does not warrant conclusions of a causal link: the effects have been short-term and have
not necessarily shown any connection to physical exercise. According to Berger (1989),
the mental health benefits of physical activity are equally wide-ranging among both
older and younger people. From the gerontological research and studies carried out in
the field of physical education, it may be inferred that regular physical activity and
exercise help to maintain and improve the functional ability, health and mental well
being of older people (Ruuskanen & Ruoppila 1995).
Ojanen (1994) proposed a number of hypotheses with regard to the connections between
physical activity and mental health. Although his studies focused on young and
working-age people, it is possible to extract from Ojanen's work research hypotheses
that concern elderly people as well and take into account physical activity as a whole.
Follow-up research is now needed at population level to establish exactly how physical
activity and mental health are connected to each other. A simple intervention study
within a selected sample is not enough to test the hypotheses and obtain relevant data at
the population level.
A baseline assumption which can be made about the connections between physical
activity and mental health in elderly populations is that physical activity as a whole and
taking physical exercise are associated with mental health. Mental problems have
adverse effects on the level of physical activity: on the other hand, moderate regular
physical activity may reduce the emergence or existence of mental problems. The
intensity and regularity of physical activity is connected with mental health. Health and
functional ability, as well as socio-economic factors, influence the connections between
physical activity and mental health (McAuley & Rudolph 1995; Clark 1996).
6.1
Depressive symptoms
A connection between physical exercise and depression has been reported both for
young and middle-aged people (Brown 1990; Brannon & Feist 1992; Ojanen 1994McAuley & Rudolph 1995) and for older people (Berger 1989; O'Connor et al. 1993Ruuskanen & Ruoppila 1995). Despite their various shortcomings, these studies
generally support the conclusion that physical activity and exercise reduce depression
Although people who exercise frequently suffer from depression less often than others it
has been impossible to establish the direction of the causal link. Regular aerobic exercise
shows the clearest connection with reduced depression. According to Brown (1990)
WHO/HPR/AHE/98.2
physact.pro
physical activity may be used to help prevent or alleviate mild or moderate depression.
There also seems to be a link between a low level of physical activity and high
depression scores, but no causal connection has been established. O'Connor et al. (1993)
suggest that physical activity may reduce depression through a cognitive rather than a
social mechanism, meaning that elderly people who can cope independently with
physical activities by virtue of an exercise programme, for instance, will see their selfesteem and confidence increase, which in turn may also contribute to reducing
depression.
6.2
Anxiety
Physical exercise has been successfully prescribed as a treatment for anxiety (Berger
1989; Brown 1990; Brannon & Feist 1992; Ojanen 1994). At the same time as it reduces
anxiety and muscle tension, exercise helps to reduce and prevent stress. The best remedy
for stress is regular physical activity (Brannon & Feist 1992), while for anxiety it is
aerobic exercise (Ojanen 1994). Brannon and Feist (1992) suggest that aerobic exercise
is most effective in the treatment of state anxiety but may also help with trait anxiety.
There are connections between physical activity and mental health in areas other than
those discussed above, but they have not been researched in any depth. These areas
include improved self-esteem and self-confidence, greater overall life-satisfaction and
general well-being (Berger 1989; Brannon & Feist 1992; Morris 1992; Ruuskanen &
Ruoppila 1995; US Department of Health and Human Services 1996). No clear
connection has been established with psychotic disorders (Ojanen 1994). Tuson and
Sinyor (1993) observe that change in mood is predicted by self-perceived meaning of
physical exercise and other physical activity, as well as by the duration of exercise taken.
Positive expectations, commitment and the conviction that physical activity has
beneficial effects, all strengthen the favourable impact exercising has on mental health
(Ojanen 1994). It seems that continuous, intensive physical exercise is the most effective
(Kaplan et al. 1993; Ojanen 1994; Shephard 1994; Clark 1996). The longer the
individual has exercised, the stronger the link between physical activity and mental
health (McAuley & Rudolph 1995). In elderly people, moderately intense physical
activity is usually sufficient to maintain physical and mental capacity, although Clark
(1996) argues that three-quarters of elderly people in the United States do not take
regular moderate exercise. Follow-up studies in Jyvaskyla (Oinonen et al. 1997;
Hirvensalo et al. (1998) found that one-third of the elderly population goes for walks
several times a week. A high level of participation in other forms of exercise such as
callisthenics, cross-country skiing and swimming was also reported. It seems that people
who most need physical exercise are precisely those for whom participation is most
difficult. The positive effects of physical exercise on mental health may be undermined
by adverse environmental factors as well as by excessively intensive exercise (Berger
1989).
In the light of the latest research results, it seems that physical exercise and other forms
of physical activity are the most significant means whereby individuals can influence
their own health and functional ability, and accordingly maintain a high quality of life
into old age.
WHO/HPR/AHE/98.2
phyaact.pro
10
7.
WHAT KIND OF PHYSICAL ACTIVITY?
Any form of physical exercise is suitable for anyone at any age, provided that it is not
excessive in terms of general or local stress loads. The structures and functions of the
human body usually adapt to the loads imposed upon them, whether these increase or
decrease. When exercise is discontinued and the stress loads disappear, the changes
created in the body will also disappear. This applies to all the effects of physical
exercise, although the rate at which they disappear varies considerably from a few hours
to months. The results achieved can be maintained even if the duration is reduced,
provided that the intensity of training remains at the same level.
Age is not, in itself, an obstacle to physical exercise. Indeed, exercise can contribute to
positive changes and increase physical performance in older people just as it does in
younger people. Improvements in muscular strength are particularly interesting. For
example, training can help to improve consideraly the strength of the lower limbs within
a matter of months (Fiatarone 1990). The most crucial issue is the extent to which
physical activity can be incorporated into ageing people's lifestyle.
It is known from earlier research that the most common form of physical activity for
older people is walking: for example, around two-thirds of the elderly population in
Jyvaskyla, Finland regularly go for walks. Around one-third does callisthenic exercises
at home. It seems that both these forms of exercise remain popular as people get older: it
is only in the age group over 80 that the number of people engaging in these activities
clearly begin to decline. Cross-country skiing, cycling and swimming are comparatively
rare forms of physical exercise for older people, even in Nordic countries. Factors which
influence the level of involvement include culture, age cohort, income level, and the
availability of public services (Heikkinen et al 1990).
Many older people enjoy different forms of so-called utility exercise such as gardening
and other outdoor jobs around the house. It is also quite common for older people to
decide to walk to the shops or do their errands on foot, simply in order to get some
exercise and fresh air. Men engage in heavy keep-fit exercise more often than
women,but otherwise there are no major differences between men and women.
8.
WALKING
Walking is the most natural, the most "everyday" form of movement human beings
undertake. It starts very early in life and continues , for the most part, until the very end.
It is an activity common to everyone except the seriously disabled or the very frail
(Morris and Hardman 1997). No special skills and/or equipment are required. Walking is
convenient and may be included in occupational and domestic routines. It is self
regulated in intensity, duration and frequency and, having a low ground impact, is
inherently safe (Morris and Hardman 1997).
Walking is a year-round, readily repeatable, self-reinforcing, habit-forming activity and
the main option for increasing physical activity in the sedentary population (Morris and
Hardman 1997). For ageing and elderly people, walking is an ideal way to start
exercising more. A low level of walking is the major factor in the current widesoread
waste of potential for health and well-being that is due to physical inactivity
WHO/HPR/AHE/98.2
physact.pro
The reason for walking is usually the need to get from place A to place B to do an
errand, but it can also be to clear the brain. Walking is such a natural way of moving that
it is not even perceived as a separate activity, unless problems occur (Morris and
Hardman 1997).
A normal middle-aged person should not be aware of any major physical changes, but
around the age of 50 it becomes desirable to set goals for maintaining the physical self:
for instance, consciousness of posture, speed of movement, sprightliness, and weight.
As individuals begin to grow older and their levels of physical activity begin to decline,
their bodies begin to regress. Pain, illness or an injury may also affect the permanence of
physical skills. Ageing in itself changes the way people move: they begin to walk more
slowly, posture may change, stride gets shorter. Walking is an all-encompassing activity
which requires not only muscle strength but also balance, a skill learned very early in
life. During a walk, as in other forms of aerobic exercise which use the body’s large
muscles (e.g. swimming or cycling), there are important changes in cardiovascular and
respiratory functions. Controlled trials involving both men and women have shown that
fast walking (i.e.at faster than normal pace) improves fitness.
Even though walking is the most common method of getting about, it also offers a
variety of ways - such as walking with someone else or walking in demonstration for a
common cause - to break loose from everyday routines.
Fitness gains from walking are particularly valuable for elderly people and
proportionately can be as significant as those benefits enjoyed by younger age groups.
Leg muscle strength (which has already been mentioned on several occasions in this
paper) is particularly important in minimizing immobility, thus in turn contributing to the
maintenance of independence in older people. Weakness makes it difficult to support
bodyweight and stand up from a low chair or toilet seat, to climb stairs or mount a bus.
The importance of observing an older person's gait cannot be overemphasized. Direct
observation of walking gives the health care professionals useful screening data about
mental status, muscle strength, joint range of motion, motor planning skills, ability to
concentrate, sitting and standing balance and potential to rehabilitation.
The scope of people’s existence is directly related to how much and in what way they
engage in physical activity (Heikkinen 1995). Not only does mobility favour contact
with other people; it is the best guarantee of retaining independence and being able to
cope.
9.
HOW TO ENCOURAGE PHYSICAL ACTIVITY IN DAILY LIFE
Earlier in the history of humankind, mobility was an essential part of survival: hunting
for food, avoiding dangers, self-defence - all involved and required movement. Today,
most daily activities have been delegated to machines: the length of the stride required
today is shorter than it used to be, the amount of strength required in hands and arms is
less. A number of things which previously obliged people to go out - shopping or
paying bills, for example - can today be done from the comfort of the home. There are
fewer things in everyday life which necessitate physical activity. However, since it is
WHO/HPR/AHE/98.2
phygact.pro
12
recognized that some activity is nonetheless necessary, some people try to meet this need
through organized exercise. This sort of "artificial" activity does not appeal to all. Some
people feel it is awkward and not worth the trouble; others feel they do not have the time
to spare.
10.
LIFE AS A PROJECT
Most people’s lives are oriented towards the future (Merleau-Ponty 1962,Heikkinen
1995). In a normal life course, the future perspective is one of ageing. Ageing is often
marked by concerns about independence, coping, health and functional ability.
Sometimes such concerns lead to situations in which everyday life is increasingly
structured within a medical framework. This in turn may become a source of anxiety.
Individuals are always bound to a certain extent by the conditions of their lives and
environments. The degree to which they succeed depends largely on functional ability.
The better their functional health, the greater their functional freedom within the
confines of their life-situations. There is no doubt that physical activity is a crucial factor
in maintaining functional health throughout the life span.
It is important to become conscious of the messages that the body sends. As mentioned
in the discussion on walking, people do not normally pay attention to their bodies. With
increasing age, however, more ailments and pains begin to make themselves felt, even if
the individual is not actually ill. This is a sign that functional health has started to
deteriorate. In this situation, everyday actions, and life in general, become increasingly
difficult (Heikkinen 1995). However, by moving more than previously and by
exercising, it is possible to induce positive changes. Such changes can help to reinforce
people’s belief in the value of continued physical activity for maintaining well-being.
Individuals need to register both negative and positive experiences, as this helps
maintain a mental balance and eventually facilitates adaptation to the changes that
inevitably occur with time.
The key to maintaining physical activity and functional ability lies within each
individual, although immediate surroundings, significant others and family also play a
crucial role in creating and maintaining a positive, active approach to life. People can
resort to past experiences for inspiration, to push themselves forward both mentally and
physically. It is not easy to develop effective strategies to promote exercise or physical
activity in ageing people. Shephard (1986) has shown that the idea of "training" is
difficult for elderly people to appreciate, and may even be intimidating. The benefits of
exercise may be easier to accept if ageing people can perceive them, for instance, in
terms of having more or better time with loved ones or not being dependent on others in
later life.
The way in which people experience their bodies is also a cultural phenomenon bound
to a particular cultural context. In many cultures the training of the body is recognized as
crucially important to mental pursuits as well. The Western tradition, which makes a
distinction between the physical and the mental, complicates the natural relationship
between these two planes of human existence.
"
WHO/HPR/AHE/98,2
physact.pro
10.1
What kind of exercise?
Physical activity and exercise should meet the individual's current needs. It is important
that health care personnel explain why it is necessary, useful or beneficial to engage in
physical exercise. Initially it may be very difficult to convince older people to adopt
more mobile and active ways of life. They may need to be persuaded that age is no
obstacle to physical activity and that the more they invest in maintaining their capacity to
move, the more they will enjoy physical independence and interaction with others.
Practical examples can be used to illustrate the daily possibilities for increasing physical
activity - e.g. climbing the stairs instead of taking the lift - and highlighting the concrete
benefits that this will have. Another good way to encourage exercise is to find forms of
physical activity that have interested the individual earlier in life. In the presence of a
specific problem such as an illness, it must be explained why certain types of physical
activity are recommended, while others - which may be too demanding - should be
avoided. Ageing well - to which physical activity can make a substantial contribution - is
a challenge that brings its own rewards to those who are prepared to face it.
WHO/HPR/AHE/98.2
physact.pro
References
Ashton D. Exercise, health benefits and risks. European Occupational Health
Series No. 7 (WHO). Printed by Villadsen & Christensen, Copenhagen 1993
Avlund K. Maling af funktionsevne fra 70- til 75-ars-alderen. En opf01gningsunderspgelse af 1914-populationen i Glostrup fra 1984 til 1989. Afdeling For Social
Medicin Kpbenhavns Universitet. Befolkningsunders0gelseme i Glostrup. Foreningen af
Danske Laegestuderendes Forlag Kpbenhavn 1995
Barry H.C. Exercise prescription for the elderly. Geriatrics 34: 155, 1986
Bassey E.J., Bendall M.J. and Pearson M. Muscle strength in the triceps surae and
objectively measured customary walking activity in men and women over 65 years of
age. Clin Sci 74: 85-89, 1988.
Bendall M.J., Bassey E.J. and Pearson M.B. Factors affecting walking speed of
elderly people. Age Ageing 18: 327-332, 1989
Berger B.G. The role of physical activity in the life quality of older adults. In: Spirduso
W.W. & Eckert H.M. (eds.), Physical activity and aging. American Academy of
Physical Education Papers 22. Human Kinetics Books, Kansas City 1989
Berlin J.A., Golditz G.A. A meta-analysis of physical activity in the prevention of
coronary heart disease. Am J Epidemiol 132: 612, 1990
Bouchard C. and Shephard R.J. Physical activity, fitness, and health: The model and key
concepts. In C. Bouchard, R.J. Shephard, & T. Stephens (eds.), Physical activity, fitness,
and health: International Proceedings and consensus statement. Champaign, IL: Human
Kinetics Publishers, 1994
Bouchard C., Shephard R.J. and Stephens T. (eds.) Physical activity, fitness, and health:
International proceedings and consensus statement. Champaign, IL: Human Kinetics
Publishers, 1994
Brannon L. and Feist J. Health psychology. An introduction to behavior and
health. Wadsworth Publishing Company, Belmont, 1992
Brown D.R. Exercise, fitness, and mental health. In: Bouchard C., Shephard R J
Stephens T., Sutton J.R., McPherson B.D. (eds.), Exercise, fitness, and health a’
consensus of current knowledge, pp. 607-626. Human Kinetics Publishers, Champaign
Buchner D.M. and de Lateur B.J. The importance of skeletal muscle strength to ohvsical
function in older adults. Ann Behav Med 13: 3: 91-98, 1991
F
Cheng S., Suominen H„ Era P. and Heikkinen E. Bone density of the calcaneus and
fractures in 75- and 80-year-old men and women. Osteoporosis Int 4: 48-54 1994
WHO/HPR/AHE/98.2
physact.pro
15
Cheng S., Suominen H, Sakari-Rantala R., Laukkanen P., Avikainen V. and
Heikkinen E. Calcaneal bone mineral density predicts fracture occurrence: A five-year
follow-up study in elderly people. Journal of Bone and Mineral Research 12: 7: 10751082, 1997
Chow R. et al. Effect of two randomised exercise programmes on bone mass of healthy
post-menopausal women. British Medical Journal 295, 1441-1444,1987
Clark D.O. Age, socioeconomic status, and exercise self-efficacy. The Gerontologist 36:
2: 157-164, 1996
Cunningham D.A. et al. Exercise training and the speed of self-selected walking pace in
retirement. Can J Aging 5: 19, 1986
Dargent-Molina P., Favier F., Grandjean H., Baudoin C., Schott A.M., Hausherr E.,
Meunier P.J., B reart G., for EPIDOS Group. Fall-related factors and risk of hip fracture:
the EPIDOS prospective study. Lancet 348: 145-49, 1996
Donahue R.P., Abbott R.D., Reed D.M. et. al. Physical activity and coronary heart
disease in middle-aged men: The Honolulu Heart Program. Am J Public Health 78: 683,
1988
Dychtwald K. (ed.) Wellness and health promotion for the elderly. Rockville.
MD. Aspen Publications, 1986
Elward K.E. and Larson E.B. Beneficts of exercise for older adults. Clinics in Geriatric
Medicine 8: 35-50, 1992
Fiatarone M.A., Marks E.C., Ryan N.D. et al. High-intensity strength training in
nonagenarians. JAMA 263: 3029-34, 1990
Fillenbaum, G.G. Screening the elderly: A brief instrumental activity of daily
living measure. J Am Geriatr Soc 33: 698-706, 1985
Fontane P. E. Exercise, fitness, and feeling well. American Behavioral Scientist 39: 3:
288-305, January, 1996
Friedman P.J., Richmond D.E. and Baskett J.J. A prospective trial of serial gait
speed as a measure of rehabilitation in the elderly. Age Ageing 17: 227-235, 1988
Grisso J., Kelsey J., Strom B. et al. Risk factors for falls as a cause of hip fracture in
women. N Engl J Med 324: 1326-31, 1991
Harris M.I. Prevalence of noninsulin dependent diabetes and impaired glucose tolerance.
In: National Diabetes Data Group: Diabetes in America: Diabetes Data Compiled 1984.
DHHS Publication No (NIH) 85-1468. Washington, DC, Department of Health and
Human Services, 1985, VI-I
16
WHO/HPR/AHE/98.2
___________ physact.pro
Heikkinen E., Heikkinen R-L., Kauppinen M., Laukkanen P., Ruoppila I. and
Suutama T. lakkaiden henkiloiden toimintakyky. Ikivihreat-projekti. Osa I, Sosiaali- ja
terveysministerio, suunnitteluosasto, julkaisuja 1990:1, Helsinki 1990
Heikkinen R-L. Engagement in physical activity among 80-year-old narrators. In:
Toward healthy aging - International perspectives, Part 2. Psychology, motivation and
programs. Volume IV: Physical activity, aging and sports, pp. 309-313. (eds.) Hanis S„
Heikkinen E„ Hanis W.S. Center for the Study of Aging, Albany, New York 1995
Heikkinen R-L. lakkaiden autonomia. Gerontologia 2: 159-164, 1997
Hirvensalo M., Lampinen P., Rantanen T. Physical exercise in old age. An eight-year
follow-up study on involvement, motives and obstacles among persons aged 65-84 year.
Journal of Aging and Physical Activity 6: 157-168, 1998
Kane R.A. and Kane R.L. Assessing the elderly: A practical guide to measurement.
Lexington M.A.: Lexington Books, 1981.
Kane R.A. Instruments to assess functional status. In Cassel, C. and Walsh J.
eds.) Geriatric Medicine Vol 11. New York. Springer-Verlag, pp. 132-140, 1984
Kannel W.B. and Sorlie P. Some health benefits of physical activity. Arch Intern Med
139:857,1979
Kaplan G.A., Strawbridge W.J., Camacho T. and Cohen R.D. Factors associated with
change in physical functioning in the elderly: A six-year prospective study. Journal of
Aging and Health 5: 1, 140-153, 1993
Katz S., Ford A.B., Moskowitz R.W., Jackson B.A. and Jaffee M.W. Studies of
illness in the aged. The index of ADL: A standardized measure of biological and
psychological function. Journal of the American Medical Association, 185: 914-919,
1963
Katz S. and Stroud M.W. Functional assessment in geriatrics: A review of progress and
directions. J Am Geriatr Soc 37: 267-271, 1989
Kottke T.E., Puska P., Salonen J.T. et al. Projected effects of high-risk versus
population-based prevention strategies in coronary heart disease. Am J Epidemiol 121:
697,1985
Krolner B. et al. Physical exercise as prophylaxis against involutional vertebral
boneloss: a controlled trial. Clinical Science 64: 541-546, 1983
Laukkanen P., Era P., Heikkinen R-L., Suutama T., Kauppinen M. and Heikkinen E.
Factors related to carrying out everyday activities among elderly people aged 80. Aging
Clinical and Experimental Research 6: 433-443, 1994
Laukkanen P, Heikkinen E, Kauppinen M. Muscle strength and mobility as predictors of
survival in 75—84-year-old people. Age and Ageing 24: 468-473, 1995
WHO/HPR/AHE/98.2
physact.pro
17
Laukkanen P., Sakari-Rantala R., Kauppinen M. and Heikkinen E. Morbidity and
disability in 75- and 80-year-old men and women. A five-year follow-up. Functional
capacity and health of elderly people - the Evergreen project. Heikkinen E., Heikkinen
R-L., Ruoppila I. (eds.) Scandinavian Journal of Social Medicine Suppl. 53, pp. 79-100,
1997
Lawton M.P. and Brody E. Assessment of older people: Self-maintaining and
instrumental activities of daily living. The Gerontologist 9: 179-186, 1969
Matteson M.A. Biological theories of aging in gerontological nursing concepts and
practice 2, pp. 158-171. Mary Ann Matteson Eleanor S., Me Connell Ardianne Dill
Linton. W.B. Saunders Company, London 1997
McAuley E. and Rudolph D. Physical activity, aging, and psychological well-being.
Journal of Aging and Physical Activity 3: 67-96, 1995
Merleau-Ponty M. The phenomenology of perception (translated by C. Smith).
Routledge & Kegan Paul, London 1962 (original publication 1945)
Mobily K.E. Leisure, lifestyle, and life span. In: R.D. MacNeil & M.L. Teague
(Eds.) Aging and leisure: Vitality in later life, pp. 155-180. Englewood Cliffs, NJ:
Prentice Hall, 1987
Mobily K.E., Lemke J.H. and Gisin G.J. The idea of leisure repertoire. Journal of
Applied Gerontology 10: 208-223, 1991
Mobily K.E., Lemke J.H., Ostiguy L.J., Woodard R.J., Griffee T.J. and Pickens C.C.
Leisure repertoire in a sample of midwestem elderly. The case for exercise. Journal of
Leisure Research 25: 84-99, 1993
Morris D.C. Sports Activity's influence on life satisfaction of the elderly. In: Harris S.,
Harris R., Harris W.S. (eds.), Physical activity, aging and sports. Volume II: Practice,
program and policy, pp. 75-82. The Center for the Study of Aging, New York 1992
Morris J.N. and Hardman A.E. Walking to health. Sports Med 23: 5: 306-332,
May 1997
Nevitt M.C., Cummings S.R., Kidd S., Black D. Risk factors for recunent nonsyncopal
falls: a prospective study. JAMA 261: 2663-68, 1989
O'Connor P.J., Aenchbacher III, Dishman R.K. Physical activity and depression in the
elderly. Journal of Aging and Physical Activity 1:34-58, 1993
Oinonen M-L., Heikkinen E., Huovinen E., Huovinen P., Kannas S., Lampinen P. and
Ruuskanen J. lakkaiden liikunnan edistaminen kuntatasolla. Liikuntainterventiot
IKTVIHREAT-projektissa. Jyvaskylan sosiaali-ja terveyspalvelukeskuksen julkaisuja
4/1997, Jyvaskyla 1997
18
WHO/HPR/AHE/98.2
phyaact.pro
Ojanen M. Liikunta ja psyykkinen hyvinvointi. Liikuntatieteellisen seuran moniste 19,
Helsinki 1994
Province M.A., Hadley E.C., Hornbrook M.C. et al. The effects of exercise on
falls in elderly patients: a preplanned meta-analysis of the FICSIT Trials: Frailty and
Injuries: Cooperative Studies of Intervention Techniques. JAMA 273: 1341-7, 1995
Rivara F.P., Grossman D.C. and Cummngs P. Medical progress: Injury prevention
(second of two parts) (Review Article) N Eng J Med 337: 9: 613-8, 1997
Rodgers W. and Miller B. A comparative analysis of ADL questions in surveys of older
people. The Journal of Gerontology, Series B, vol. 52 B (Special Issue), 21-36, 1997
Ruuskanen J. and Ruoppila I. Physical activity and psychological well-being
among people aged 65 to 84 years. Age and Ageing 24: 292-296, 1995
Schultz A.B. Mobility impairment in the elderly: Challenges for biomechanics
research. J Biomechanics 25: 519-528, 1992
Shephard R.J. Physical training for the elderly. Clin Sports Medicine 5: 515, 1986
Shephard R.J. Physical activity and aging. Second edition. Aspen Publishers,
Rockville 1987
Shephard R.J. Determinants of exercise in people aged 65 years and older.
In: Dishman R.K. (ed.). Advances in exercise adherence. Human Kinetics Publishers,
Champaign 1994
Sime W.E. Discussion: Exercise, fitness, and mental health. A consensus of
current knowledge (pp. 627-633). Human Kinetics Publishers, Champaign 1990
Tinetti M.E., Speechley M., Ginter S.F. Risk factors for falls among elderly persons
living in the community. N Engl J Med 319 :1701-07, 1988
Tinetti M.E., Mendes de Leon D. and Baker D.I. Fear of falling, and fall-related efficacy
in relationship to functioning among community-living elders. J Gerontol Med Sci 49:
M140-M147, 1994
Tonino R.P. Effect of physical training on the insulin resistance of aging. Am J Physiol
256: E352, 1989
Tuson K.M. and Sinyor D. On the affective benefits of acute aerobic exercise: Taking
stock after twenty years of research. In: Seraganian P. (ed.) Exercise psychology: The
influence of physical exercise on psychological processes. John Wiley & Sons, New
York 1993
U.S. Department of Health and Human Services: Physical activity and health. A Report
of the Surgeon General. U.S. Department of Health and Human Services, Centers for
Disease Control and Prevention, National Center for Chronic Disease Prevention and
Health Promotion, Atlanta 1996
WHO/HPR/AHE/98.2
physact.pro___________
Visser H. Gait and balance in senile dementia of the Alzheimer's type. Age Ageing 12:
296-301, 1983
Wiener J.M., Hanley R.J., Clark R. and Van Nostrand J.F. Measuring the activities of
daily living: Comparisons across national surveys. Journal of Gerontology: Social
Sciences, 45: S229-S237, 1990
19
Ageing and Health Programme
World Health Organization
20, Avenue Appia
CH-1211 Geneva 27
(Switzerland)
Direct fax: +41-22 791-48-39
Direct telephone: +41-22 791-34-04
or 791-34-05
Geneva, 1998
$ Ageing and Health Programme
AGEING IN AFRICA
prepared for WHO by Dr Nana Apt, University of Ghana
AGEING IN AFRICA
prepared for WHO
by
Dr Nana Apt
Centre for Social Policy Studies
Faculty of Social Studies
University of Ghana, Legon
WORLD HEALTH ORGANIZATION
GENEVA
1997
This document is not a formal publication of the World Health Organization (WHO)
and all rights are reserved by the Organization. The document may, however, be freely reviewed,
abstracted, reproduced and translated, in part or in whole, but not for sale nor for use
in conjunction with commercial purposes.
The views expressed in documents by named authors are solely the responsibility of those authors.
TABLE OF CONTENTS
1.
INTRODUCTION: KEY CONCEPTUAL CONSIDERATIONS..................... 1
2.
DEMOGRAPHIC CHANGE AND OTHER SPECIFIC DEMOGRAPHIC
CONSIDERATIONS: THE AFRICAN SITUATION....................................... 2
2.1
Migration and urbanisation:
Table 1: The Total Elderly Population and percentage of World Population
by Gender and Region.
2.2
The ageing population:
2.3
Natality and mortality:
2.4
Rural segregation:
Table 2: Estimated and Projected Urban/Rural Distribution of African
Population Aged 60 Years and over in 1980 and 2000 (in
thousands).
3.
CRISIS AND ADJUSTMENT: AFRICA’S ECONOMIC CONTEXT AND
ITS IMPLICATIONS FOR OLDER PERSONS..............................................6
4.
TRADITION AND CHANGE: THE AFRICAN SOCIAL CULTURAL
CONTEXT.......................................................................................................... 9
5.
PRIORITY AREAS FOR ACTION:............................................................... 14
5.1
Women:
5.2
Elderly refugees:
5.3
The AIDS Pandemic:
6.
SUGGESTED POLICY ACTIONS................................................................. 12
6.1
Research needs, information gaps and advocacy.
6.2
Africa’s need for an intergenerational approach to social welfare.
6.3
Ageing makes a women’s world: the gender approach
6.4
Developing an indigenous approach to ageing: training requirements.
REFERENCES:............................................................................................................ 15
APPENDICES
Doc:WHO
1-
16.1.97
INTRODUCTION: KEY CONCEPTUAL CONSIDERATIONS
Aging may be defined as the survival of a growing number of people who have
completed the traditional adult role of making a living and child rearing. At this stage, there
is a substantial change in an individual’s capacity to contribute to the work and protection
of the group. In biological terms, however, aging may refer to the increasing inability of
a person’s body to maintain itself and to perform its operations as it once did (Vatuk, 1980).
There are many theories which attempt to explain the why and when of aging. The social
psychological literature of aging depict two general view points with regards to optimum
patterns of aging. Both views are based on the observation that as people grow older, their
behavior changes, their activities become curtailed and the extent of their social interactions
decrease (Cumming and Henry, 1961). The activity theory of Havinghurst (1968) and others
whilst disagreeing with the ‘disengagement theory’ stress the inevitable changes in biology
and health. In their view, the decreased social interaction that characterises old age results
from the withdrawal of society from the aged person and that the decrease in interaction
proceeds against the desires of most aging persons. Although they lack consensus as to
which if any, theory of aging is best defined, certain factors are generally agreed upon to
play a role in determining how long a person can expect to live and at what crucial period
a person can be thought of as having aged. Factors such as activity level, social roles and
social attitude are prominent. It is generally accepted that in old age, the loss and decline
be it physiological, psychological, economic or social are greater than at any other stage in
a person’s life. Such losses, however, are not always due to biological factors but might also
be due to social, economic and environmental and cultural factors (Derricourt and Miller,
1992). Aging therefore can best be understood when viewed as a continuous process of
progressive change in all structures and functions of the body: the impact of such changes
on a person’s quality of life is largely dependent on the social and cultural milieu (Ageing
International, 1995). Precisely, these set of issues were discussed at the African expert
meeting on aging in Senegal (ICSG, 1985) and the African Gerontological Society (AGES)
in Ghana in 1995.
’Aging involves not only losses but also gains’
(ICSG, 1985)
In writing this report we keep in mind the definition which best describes those
segments of the population beyond their middle years of life encompassing several stages of
lifespan with a vast range of differences. However as cross national age data has become
more available, researchers have had to use chronological age to provide an operational
definition of old age (Pilai and Abane, 1995; International Federation of Ageing, 1985). Thus
statistical definition of old age has come to be recognised as the official retirement age of a
given country, which in Africa ranges from 55 -65 years of age. This defined category is
incongruent with African life experience for in Africa only a small percentage of people are
engaged in the formal sector with appropriate retirement provisions. Other than the Republic
of South Africa and Namibia where there are operative whole sale old age retirement
arrangements, there is nothing like "retirement" from work for the vast majority of aging
Africans who work in the informal sector except at the age at which age or ill health makes
it impossible to be active.
On the other hand many an old African sees aging as work related (Apt, 1996: Apt
et al, 1995). Inability to work appears to be the cut off point to aging: ’I am old, I can no
Doc:WHO
-2-
16.1.97
longer work on my farm ’or I am now useless I can no longer wor as u
.
e
message is repeated again and again in African surveys of older persons ( arzi»
)•
Many Africans societies generally recognise distinct age stages to whic are ascn e ro es
and patterns of human activities. These are: childhood, adolescence, adulthood and old age.
To these age categories are ascribed specific roles and responsibilities, defining and limiting
the nature of inter-connecting rules and with differential role expectations. The Akans
(Ghana) for example, perceive aging from a biological perspective, beginning from
adolescence through parenthood and advancing with grand-parenthood status (Apt van Ham,
1989; Apt, 1996). Thus in many African societies, the timing of social role transitions such
as becoming a parent, grandparent and losing the ability to reproduce are used as a mark of
old age (Tout, 1989; 1990).
Traditional African words used to describe an old man or an old woman are neither
demeaning nor derogative. Literal translations of old age in many African languages define
it synonymously with wisdom. Common expressions in West African languages like ‘elder’
‘he or she who knows’ ‘he or she who has vision’ and simple addresses like ‘grandpa’
‘grandma’ even to the non-kin older person, clearly reveal the respect and honour accorded
to old age in traditional Africa. The Malians for example perceive the tree as a symbol of
old age; a mighty tree with deep spreading roots which cling to the ground with its shade
giving branches of leaves spreading high to the sky. This same symbolism is reflected in
Zimbabwe’s Ndebede people’s reference to the elderly as "shade of the children" (Cox and
Mberia, 1977). Furthermore, the symbolism in the languages of Africa painstakingly codify
the aging process and accords old people a place in the daily life of family and community.
In the social life of a family, everybody recognizably contributes; no one is left out.
This document examines the aging experience in Africa. It provides a description of the
demographic context in which the people of Africa experience aging. The document further
examines the aging experience in the African modem environment, the effect of culture
contact and the emerging patterns of attitudes and behaviors relative to the elderly. The
report contrasts the modern experience of aging in Africa with the traditional experience
within the framework of the African value systems which give credence to the place and role
of the elderly in the social environment.
2.
DEMOGRAPHIC CHANGE AND OTHER SPECIFIC
CONSIDERATIONS: THE AFRICAN SITUATION.
DEMOGRAPHIC
Demographic aging of the African population can better be appreciated if the factors
most relevant to the aging process in the continent are placed on a global context first.
Following Hauser and Duncan (1959:31) demography may be defined as the study of the
size, territorial distribution and composition of population, changes therein and the
components of such change which may be defined as natality, mortality, territorial movement
and social mobility". With the exception perhaps of natality, demographJ smdTes
aged population have been conducted along all these dimensions OnAfL
dies of
findings of these investigations relates to the increasing St Sn t. !
^7
terms of the aged population in many if no, all of th ounces of
United Nations (United Nations, 1990) may be used to Utast am mt
? .’±"1
were, across the world, approximately 158 million people who were fiS*’
\96° ""t
in 1980, the number was estimated at 258 million, an increase of63 pt “ett"''" Tte
0’
Doc:WHO
-3-
16.1.97
population 65 years and over is estimated to have increased by approximately 140 million
in the following 14 years, much of such increase took place in the poorer nations of the
world.
Migration and urbanisation:
Migration and urbanisation have both separately and jointly been assessed as contributing
to the destabilization of the traditional African values that in the past sustained elderly people
in a closely knit age integrated society (Vatuk, 1996; AGES, 1995). Africa has a long
history of migration within countries and across borders within the continent. Although subSaharan Africa even now is overwhelmingly rural, the rapidity with which populations mostly
young people are moving from rural areas into towns and cities surpasses all else in the
history of the developed world. Young people with some education move in large numbers
from the rural areas to towns and cities in search of opportunities for earning a good income.
2.1
Table 1:
The Total Elderly Population and percentage of World Population by Gender
and Region
Region
Total Population 60 & over
Africa
Total
Male
Female
North America
Total
Male
South America
Total
Male
Female
Asia
Total
Male
Female
Oceania
Total
Male
Female
Source: United Nations, 1990
Percentage
18,825,313
10,149,311
8,676,002
6.1
8,446,002
4,486,336
8.9
20,738,538
3,960,606
11,076,726
8.0
199,567,198
97,763,881
101,803,317
6.1
268,081
128,233
139,848
7.2
Doc:WHO
16.1.97
-4-
Linked to migration is urbanisation. Between 1970 and 1982, African urban
populations on the average grew by almost 6 percent a year, more than twice the overall rate
of population (Goliber, 1985). In 1960, about 11 percent of the African population lived in
urban areas and 22 years later the population had nearly doubled to about 21 percent. In this
year, only seven cities in the African region had more than half a million residents but by
1980, the figure was up to 35 of which nine were in Nigeria alone. Along with rapid growth
of towns and cities, the development of single dominant metropolitan areas is another
characteristic feature of the regions urbanisation. Thus in 1980, in West Africa, 50 percent
of Togo’s urban population were concentrated in the capital, Lome, 57 percent of Kenya’s
urban population could be found in Nairobi and 50 percent of Zimbabwe’s in Harare, the
capital (Goliber, op cit). Migration creates emotional distance between family members
particularly between the young and the old. While most migrants in Africa attempt to do
the best of their ability to fulfil their filial duties to parents left behind, many older people
suffer material hardships as well as physical and social deficits due to the absence of
younger generation. Besides, the burden of agriculture is left to the very old. The problems
facing older persons whose children have migrated are similar to those facing others in the
community who are childless or whose children are unable or unwilling to provide support
and care (Vatuk, 1996). Policy frameworks for supportive measures should encompass both
these categories of older persons who bear the burden of infrastructural deficits (the need to
carry water, fetch firewood, dispose of refuse, transport household provisions in the absence
of affordable motorised transport) without the support of compensating social relations for
undertaking these tasks (Grieco, Apt and Turner, 1996).
2.2
The aging population:
Although sub- Saharan Africa’s elderly population is not as large in size as in other
regions of the world, it must still be considered as a potential cause of concern since the
largest increase in the number of elderly in the world between 1980 and 2000 will occur in
Asia and Africa. The number of Africans 60 years and over will grow from 22.9 million
in 1980 to 101.9 million in 2025. (See Appendix 2). This is an increase by a factor of 4.4
whereas,the elderly population in developed countries will increase by a factor of only 2 1
(Habte-Gabr et al, 1987).
The proportion of Africa’s elderly population 65 years and over on average stands at
about 3.0 per cent. It is the lowest of any world region. Nevertheless the proportion of the
age group 65 years and older is expected to increase enormously by 2025. Thus during the
last two decades of the twentieth century, sub-Saharan Africa’s elderly population will
increase by about 82 percent and between 2000 and 2020, it is expected to increase by 93
percent (Adamchak, 1989). The most rapid growth is expected in Western and Northern
Africa whose elderly populations are projected to increase by a factor of nearly 5 between
1980 and 2025. In Western Africa, the Ivory Coast’s older population is expected to
increase by a factor of 5.4 and Cape Verde by a factor of 5.3 during this period Of relative
importance to note is the fact that the numbers of the very old in Africa is also expected to
grow at a very fast rate. Consequently, between 1980-2025 the 75 years and over age grouo
will increase by 434 percent in East Africa, 385 percent in Middle Africa 427 nercent in
Northern Africa and 526 percent in Western Africa. Nigeria, in West Africa will be among
the countries in Africa that will experience very large increases in this group
feature
of the Africa
region is that
me age Another
range ofunique
U years
and under
(See Apices
1 &almost
3? half nf
i •
■ £
•
Doc: WHO
16.1.97
-5-
Kenya, more than half of the population is in the age range of under 15 years. This is in
contrast to the developed world where just under a quarter of the population are in that age
category. The implication of this discussion is that for nearly all African countries the
elderly population is statistically insignificant whereas it is youth which constitutes the bulk
of dependency. The youthful character of the African population results in the demand for
an exceptionally large share of development resources to meet the immediate needs of the
young. Education for instance commands about 25 to 35 percent of recurrent government
expenditures in many African countries and little part of such education expenditures are
allocated to the educational needs of the old despite the clear existence of their lifetime
education requirements in societies which are under dramatic change through the processes
of modernisation and communication technology developments.
Natality and mortality:
The combination of natality and mortality profiles in Africa result in the elderly
constituting a low percentage of the total population. Africa has the world’s highest crude
birthrate at 46.0 births per thousand which is double the average world crude birthrate.
Almost all countries of Western Africa, have birth rates over 45 and total fertility rates over
6. In Eastern Africa, the estimated birth rate in 1984 for Kenya was 55 and the current
estimated fertility rate for women in Kenya average 8.1 birth per woman over the course of
her reproductive years. On the other hand, the crude deathrate in Africa is the world’s
highest and life expectancy at birth (around 49 years in 1990) consequently the lowest.
These features explain why the proportion of the older age is low in Africa. As Africa’s
substantial declines in fertility and birthrate is expected to make an impact on the region’s
age structure as a whole only after the year 2000, the proportion of the young age group (014) will remain almost constant at about 44 percent between 1980 and 2000 and drop to 34
percent by 2025 while the working age group (15-59) accounting for an almost stable 50
percent of the total population in this period will jump to 59 percent by 2025 (United Nations
1985, 105-106).
2.3
Rural segregation:
A large proportion of the elderly people in Africa live and work in the rural areas.
Table 2 provides comparative numbers of urban and rural elderly in Africa (1980 to 2000).
By the year 2020, rural segregation will become a fact and the elder segment of the
population will be concentrated primarily in rural areas. By then, approximately 64 percent
of Africa’s elderly will live in areas defined as rural (United Nations, 1982).
2.4
Table 2:
Estimated and Projected Urban/Rural Distribution of African Population Aged
60 Years and Over in 1980 and 2000 (in thousands)
1980
Males Females
2000
Males Females
Africa
Urban
Rural
Source: United Nations, 1985
2,480
8,014
2,947
9,495
6,852
12,795
8,200
14,881
Doc:WHO
-6-
16.1.97
In summary, the aging process in Africa will get underway at the turn of the century, in
the sense that the population as a whole will be getting older only after 2025. By the
beginning of the century the ageing trend will become manifest in the increasing re ative
weight of the elderly segment of the population as a result of the decline in both crude birth
and death rates anticipated in all African countries. By the year 2000, expectation of life at
birth in African countries is expected to reach a range between 55 -65 years. The fact that
more people in African countries will be reaching the age of 60 years and having reached
that age, live longer than in former times, has a host of economic and social implications for
policy planning, a fact that African governments cannot ignore (Apt and Grieco, 1994).
3.
CRISIS AND ADJUSTMENT: AFRICA’S ECONOMIC CONTEXT AND ITS
IMPLICATIONS FOR OLDER PERSONS
African countries are hard hit by economic crisis and face a number of daunting
problems. Notable among these is the mounting debt burdens and the threat of economic
stagnation and decline. The rapid population growth of 3.0 percent per annum and an
economic growth rate of 2 percent per annum has resulted in inadequate financial resources
for socio-economic development. Other aspects of the crisis lie outside the sphere of this
macro-economic environment. War, civil strife, disease and widespread environmental
degradation have had a devastating effect. In an effort to combat these problems, African
countries have adopted economic reform policies that include structural adjustment
programmes that entail cut backs in national expenditures in particular to the basic services
that include health and education. The cumulative effect has been a rapid deterioration of
education and health and other social services in Africa. Starting with the 1980s, there has
been a reversal of the progress made in basic education and health maintenance in the 1960s
and 1970s.
At the beginning of the 1980s Africa’s external debt stood at less than $50 billion. In
1991 Africa’s debt burden was estimated at over 300 billion dollars. During this same
period, investment fell from 25 percent to only 15 percent of Gross Domestic Product
(GDP). Africa’s debt burden is in itself the most serious constraint on realising the goals of
Education and Health for All. Whilst the bulk of policy attention has been on simple debt
forgiveness, there is a need for some part of such debt forgiveness to be converted into
investment in social expenditure (Voices from African Women, 1996) These situations are
cause for concern and deserve close attention by African nations, as they constrain efforts
to meet the basic needs of people in the region, and most particularly vulnerable grouns such
as the elderly.
6 F
There are widespread unemployment and under-employment in Africa In Eastern
Africa, countries like Kenya and Burundi, for example, have about 30 percent'rural workers
under-employed. In 1993, the Economic Commission for Africa (ECA) esS Z 40
M
Doc:WHO
16.1.97
percent of sub-Saharan Africa’s entire labour force - about 64 million workers - is affected
by rural unemployment. In the urban areas there are large numbers of workers in poorly
paid jobs for which a majority are over-qualified and a number of urban workers are forced
to make their living through the streets of Africa’s capital cities and large towns selling small
items, carrying loads and shining shoes. All these factors affect cost and standard of living
and are worth considering in Africa in view of young people having to care for themselves,
their own children and their elderly relations. Supporting elderly relations in the urban
environment is no easy task for populations who find their main source of livelihood in the
poorly remunerated activities of Africa’s informal sector.
Africa’s economic circumstances require the older person to remain economically
active until a greater age than his or her counterpart in the West. The working old of Africa
are a routine and widespread feature of economic life. In urban West Africa, the reduction
in an older women’s physical strength does not signal the end of her economic activity: she
simply moves her place of trading from the market to the doorstep of her family home
(Grieco, Apt and Turner, 1996). Equally, in the rural areas, older women typically continue
to farm until great age (Apt, 1996). The same economic circumstances which necessitate the
continued economic activity of the older person in Africa also restrict the access of the
majority of Africa’s older persons to credit and other micro finance facilities. Little attention
has been paid to, and no provision made for, appropriate micro-finance facilities for the older
person which permit their continued economic activity on a more secure and remunerative
base (Grieco and Apt, 1996).
4.
TRADITION AND CHANGE: THE AFRICAN SOCIAL CULTURAL CONTEXT.
For a long time, the myth has prevailed that the extended family in Africa, with its
structures and patterns of family solidarity and blood ties would render the problems of aging
virtually insignificant. But Africa, like the rest of the world is growing old and the increase
in numbers of aging people resident on the continent who will require care in order to
achieve an acceptable quality of life is occurring at the same time as the traditional welfare
system, the extended family has begun to disintegrate. The social forces of African societies
have been affected by internal and external forces of change. New ideas have impinged upon
African systems and ways of doing things and people moving from rural to urban areas in
search of better life have had drastic consequences on the family structure and intergenerational supports. Urbanisation and the modernisation of economies have placed great
strains on the extended family system and the signs are that this traditional welfare system
will no longer offer the elderly the customary social protection they had previously enjoyed.
Changes in population, in age and sex differentials, in birth and death rates, in morbidity
pattern, and in fertility rates have and will continue to have repercussions on the place and
the role of the older person in African societies.
Until recently, the social arrangements of traditional Africa were, in the main viewed
simply as a barrier to economic development: the imperative was for modem social
behaviour and values as the necessary pathway to economic success. In this overly simple
tale of what was required for the future of Africa, the positive economic functions of the
African family system were forgotten. Nevertheless, the African extended family system
operated as a social welfare system, a social welfare system which had been hidden from
history by intellectual and colonial stereotyping which viewed the traditional in any form
whatsoever as a barrier to economic and social progress. A consequence of this cultural
16.1.97
Doc:WHO
-8-
blindness has been the failure to realise that the destruction of traditional relationships will
result in the destruction of the operating welfare system.
The family has been the cornerstone of social welfare arrangements in Africa;
contemporary policy making must recognise this legacy and seek to incorpora e i in e
development of the national social welfare programmes which are increasing y ecoming
necessary as Africa experiences a social welfare crisis.
With regard to the structure of the extended family and its role as a social welfare
agency, the current orthodoxy is that family size should be drastically reduced within the
developing countries. However, this understanding fails to appreciate that where the family
is the major social welfare agency a reduction in family size necessarily reduces the number
of social linkages to sources of material support. Put simply, the larger the family the greater
the probability that one member of the family will find a source of income generating
employment other things being equal. To advocate a reduction in family size where there
is little chance of receiving social welfare support from any other agency is problematic.
This relationship between family size and access to avenues of social support has received
little consideration. Yet the implications of larger family size in terms of social support are
clear: more members means more labour and more labour means greater flexibility in terms
of meeting the need for personal care of both younger and older members of the family.
Extended families are better at caring for the elderly and are necessary to the caring for the
elderly in contexts where public social welfare arrangements are not available.
Whereas in rural areas the elderly live with their kin, in urban areas of Africa the
elderly are beginning to live separately from their offspring (Apt, 1996). Separate
accommodation for older and younger generations breaks with the traditional
intergenerational arrangements of Africa in which the old not only received but also provided
substantial services to the household. The autonomy or independence of the older person was
embedded in the patterns of interdependence which existed between the old, the child bearing
and young generations. In Africa, such interdependence takes many forms: ritual obligations,
inheritance structures, economic linkages, personal and child care, all enter the pattern of
exchange between the generations within the framework of the household, the kin system and
community. In traditional Ghanaian society, the old were greatly valued for their role in
symbolic life - the old were central to the performance of religious and social rituals. In
many African communities, historically, the elderly had control over critical household assets
which preserved their social and economic inclusion in the set of multi-generational
exchanges of the extended household. The control over ancestral property, ancestral lands
and socially sanctioned control over the labour and marriage of children (Apt 1995) all
enabled the elderly to protect their welfare. It was out of these patterns of interdependence
that the centrality and autonomy of the older person was constructed. Modern developments
such as legislative reform of inheritance customs designed to produce social equity weaken
the ability of the elderly to make the same strategic use of inheritance options in’ensuring
that their daily welfare is taken care of (World Bank, 1994).
8
The monetising or modernising of African society can, if left to itself nroduce a
fundamental alteration in these relationships of interdependence between the generations A
reduction in the mutual interdependence of the generations of African society reduces’the
very resources which older Africans frequently need to shape their ind™ /
th®
autonomy. Perceptions of the traditional and sacred as inappropriate to mo P.endence and
FEivpiidie io monetised, modem
ft)
Jl
Doc:WHO
-9-
16.1.97
society cut at the very heart of the customary resources of the older person. Similarly longer
life expectancies associated with the modernising of society produce an aging society - a
society in which great age is no longer an infrequent event and therefore no longer a scarce
resource. It is the scarce resource which achieves the status of the sacred or valued: in a
society with increasing numbers of older persons, great age is less likely to be valued and,
in as far as it is associated with diminished economic and social functions, it is increasingly
likely to be viewed as both a societal and familial burden.
In this context, it is important that policy makers carefully consider how to preserve
and extend the life of existing indigenous inter-generational patterns of social exchange. To
summarise, traditionally the older person was seen as occupying a clear productive role
within the household and community an important component of which was the ceremonial
and symbolic function: currently, this particular role is subject to erosion.
5.
PRIORITY AREAS FOR ACTION:
Women:
The single most important demographic fact about aging is that the aging society is a
female society. Women in most parts of the world are the survivors of the century although
only a hundred years ago many died in childbirth. Due to improved medical science and
preventive medicine, life expectancy of women is now about 10 percent greater than that of
men, a trend which is becoming visible even in the less developed regions of the world.
5.1
Longevity in itself is not necessarily desirable for women. The fact that a woman may
live longer does not in any case indicate that a woman is healthier than a man or that the
woman has a more qualitative existence. As a matter of fact extra years can disadvantage
women. Older men by comparison are more frequently cared for by a wife. In African
societies often by wives much younger. The phenomenon of female longevity definitely
has implications for policy planning and social service delivery to the elderly. Besides, the
imbalance in members between the sexes among the elderly population in the world has very
serious social and psychological implications, namely, the presence in the population of a
large number of single females who are in the main, widows.
The impoverishment of Africa means the deterioration of living conditions particularly
of women who in major regions of the continent, bear the triple responsibility of raising a
family, working to bring home income and upholding community structures. Generations
of African women are assigned to the role of homemaker from a very young to a very old
age. Mothers and their daughters have been entirely responsible for the care of the home
and the preparation of food. In rural areas the latter entails carrying of water, growing and
purchasing of food and the provision of fuel. Even in old age, women must continue to be
economically productive until they are physically or mentally incapacitated and unable to
continue their homemaker’s tasks. Africa is the region where the largest number of old
people are forced by economic and family circumstances to work well beyond the age of
sixty five (Brown, 1984; Okraku, 1985). ILO studies of labour force participation of older
persons across the world (1993) shows that in at least 20 African countries, between 74 and
91 percent of persons 65 and over continue to work. Many of these older workers are
women. The problems of survival that they face leave them little opportunity to develop
energies of their own for qualitative living.
Doc:WHO
-10-
16.1.97
In the African region, the poor health status of elderly women begins in childhood,
continues throughout her life and is culturally inspired. Inequality among male and female
children is widespread in Africa. Occupational socialisation begins very early for girls: Girls
must work with mothers and boys can play but boys need their energy so they must eat more
and so on and so forth - with girls frequently leaving school to work in order to pay for the
education of their brothers. Some girls must go through the agony of circumcision with all
that it entails in terms of health, for the sexual benefits of their future partners. Many girls
enter the reproductive age without the physical and social maturity needed for the task of
child bearing and parenthood.
Some girls are forced into marriages with partners three to four times their age and
reluctantly become parents. Others in fact are married off even before they are born.
Besides, the girl child who survives the drudgery and the pain of infancy must still face the
challenge posed by long term implications of the risk factors a woman faces especially in a
developing region like Africa. Existing and emerging factors such as maternal anaemia and
malnutrition, drug abuse, sexually transmitted diseases most especially now, HIV infection
and AIDS and of course repeated pregnancies which threaten women’s health are all
widespread in Africa. There are many health concerns which are specific to women and
which are age specific. For example, vaginal infections, infertility, cancers of the
reproductive organs and fibroids, to name a few have a direct effect on women’s morbidity
and mortality levels and have increasingly cumulative effects on elderly African women’s
already weakened health through excessive child childbearing. The environment where men
are preferenced over women in the allocation of resources and where women carry a greater
burden of tasks than men has its consequence for the health status of older women.
Throughout their life time they have poor access to resources with the cumulative effect that
in their old age they have insufficient resources for a decent quality of life: their task
overload throughout their life also takes its toll on their health.
Many elderly African women need to work physically harder to survive after their
childbearing and childrearing years and after they become widowed and/or divorced. While
older men in Africa can expect to receive care and attention from wives, the female cannot
hope for similar attention from a husband since she is most likely to outlive them or end up
divorced. Yet elderly women in Africa have more health problems (Pappoe et al ,1990),
and much of it is stress related (Apt, 1994). The health of older women can be directly
affected by her circumstances as indeed they do in Africa: the pressures of bereavement and
widowhood rites, childlessness, reduced income, poor housing and many other adverse and
hostile cultural practices which affect older women’s self-esteem and self image. The health
problems of the older African woman is linked especially to economic insecurity and social
rejection often as a witch after many years of hard work to cushion her family. An area of
concern therefore is marriage norms and unfavourable cultural practices against women.
Effective solutions tailored to their situations, interests and needs should be designed in
collaboration with them. Elderly women in the region contribute to their own welfare as
well to that of their households well into their 70s or longer (Khasiani, 1991). As Africa’s
development implementers consider the best and the most efficient options of providing care
for the current and future generations of older women, it is important to note that assistance
should be provided in ways which show sensitivity to the different capacities and needs of
older women. Recognition that women in Africa are both receivers and providers of care
will lead to more meaningful programmes.
Doc:WHO
-11-
16.1.97
Over the last two decades attempts have been made by many African governments to
raise the quality of life for women. While no doubt some progress has been made in certain
key areas in many countries (most specifically in Ghana and Uganda), structural relationships
of inequality between men and women (manifested in labour markets and in political
structures as well as in households) woefully lag behind. There is the need for African
governments to rethink ‘development’ in a broader framework which enables women to be
fully integrated in economic, political and social decision-making processes, to enable a
healthy survival of women. Here we infer that participation in economic, political, cultural
and community life is closely related to maintenance of the health and self-esteem of older
women. While physical disabilities are often cited as the primary reason for decreased
quality of life in old age, it is increasingly apparent that many factors, such as mental health,
retirement policies, social expectations and family structure, have a great impact on whether
older individuals are able to maintain a productive and meaningful place in society. The
improvement of the quality of life for older women therefore can only be achieved through
the understanding of the relationships among biology of aging, age related conditions and
social characteristics.
Presently in Africa, many women in old age are already afflicted with chronic
conditions or will develop them in the near future. But many women continue to function
in spite of chronic conditions in supportive roles themselves.
*
83 year old widowed Akan (Ghana):
.... I also look after my daughters’ children when I am healthy. (Apt et al, 1995).
Older women provide very important services such as health experience, social knowledge
and child care. Many act as economic anchors holding the fort while young parents work
or even adding through unpaid work to the household budgets of the young as illustrated by
the voices of the following Ghanaian women traders (Apt et al, 1995).
* 67 year old married Ewe trader:
......I help my daughters by doing the cooking while they are away from home and take
care of their children.
* 62 year old divorced Nzema trader:
......I also take care of her (daughter) children for her and do some of the cooking.
To summarise, the relationship between gender and aging is of particular significance
in Africa and social policy development whether by donors or governments must explicitly
concern themselves with this issue.
5.2
Elderly refugees:
Africa has experienced an unprecedented proliferation of tensions arising from new
ideologies of African governments, greed and political mismanagement, social and ethnic
discrimination and terror tactics of dictators (Blavo, 1995). These and economic hardships
have caused millions of Africans to flee their countries and presently African refugees top
the list in the world. Elderly persons have special difficulties coping with the hazardous and
stressful journeys and are overwhelmed with the process of adjustment to new life. Many
who choose to remain behind suffer much hardship as there is hardly anyone left young
Doc:WHO
-12-
16.1.97
enough to cultivate food and provide care and protection. To be a refugee is distressing
enough but to be an elderly refugee is double agony, the most tragic fate imaginable (Blavo,
ibid). Their problems are principally social and emotional, rather than material although the
latter may also be present (Vatuk,1996). Their plight needs special attention. Of particular
importance is the need to target older persons in refugee circumstances for help in adjustment
to the new situation, reconcile them to their losses and enable them to revitalise their
traditional knowledge and cultural resources to help build family and community and retain
continuity in the past (Blavo,ibid; Vatuk, ibid).
The AIDS Pandemic:
AIDS deserve special attention because failure to control the epidemic will result in
very costly consequences in the future for society and especially the elderly. Currently,
WHO estimates that about 14 million people are infected with the virus worldwide and more
than 8 million of these infested cases are estimated to be in sub- Saharan Africa. Of the
700,000 AIDS cases that have been officially reported worldwide, 250,000 have come from
the Africa region. It is estimated that one in forty adults in sub-Saharan Africa is already
infected and in certain cities of Africa, the prevalence of infection is as high as one in three
(Antwi,1995). AIDS, because it affects mainly people in economically productive adult years
has enormous implications for the elderly family member. Many elderly people will lose
their economic support with the death of their adult children and as well many grandparents
will be left burdened with the care and maintenance of young children. A classical example
is to be found at Kakuutu country in Uganda, close to the Northern Tanzania border post at
Mutukula where estimates indicate a gloomy situation with almost half the adult population
being said to have died of AIDS related causes. District statistics for 1994 put the total
number of orphaned children at 60,000 but aid workers put current estimates to be close to
100,000 as the epidermic continues to take its toll (Ojulu, 1996). Many of these orphans
prefer to stay with their families who no doubt will be older than their parents. AIDS has
further implications with regard to health of the elderly themselves due to added stresses as
heads of households and ill health of infected adult children, the cost of health care which
will also have to be borne by the elderly. In Tanzania, clinicians estimate that on the
average, an HIV infected adult suffers 17.5 episodes of HIV related illness prior to death.
5.3
SUGGESTED POLICY ACTIONS.
The list of policy actions that need to be taken in respect of aging and Africa is a
lengthy one, with many local specificities requiring to be addressed nation by nation and
region by region: here our intention is to provide a broad indication of the first and foremost
steps to be taken to address aging and Africa in a progressive and appropriate way.
6.
6.1
Research needs, information gaps and advocacy.
There are many gaps in the existing information on aging and Africa As Mamo
(1996) notes:
"Perhaps the greatest obstacle facing developing countries with respect to planning
for ageing is the general lack of a ’culture for research’ which is applicable to other
areas of planning and policy making. Not only are funds generally lacking but
whenever resources are made available, there is a general tendency across manv
countries....to consider research as superfluous and wasteful "
?
Doc:WHO
-13-
16.1.97
He suggests that a more holistic approach to understanding the demands of an aging society
is necessary:
Several areas of research deserve to attain higher priority in order that a more
general view of aging can be sought. Such themes as attitudes to aging (which tend
to evolve continuously); family structures, individual roles and expectations; life
quality of older persons; and subjective well being tend to be neglected areas. These
themes and others relating to a more holistic approach, as opposed to the more
subject-limited traditional topics for research, address the inter-relationship between
economy, community and family networks and assess more broadly the contributions
of the various partners of care. Qualitative as well as quantitative approaches need to
be adopted and incorporated together."
(Mamo, 1996)
The resource constraints experienced in Africa make it imperative that networks of
policy makers and researchers be formed to develop continental policies on aging. Networks
are key to reducing research costs and to ensuring the efficient and inexpensive transmission
of new policy approaches and developments.
Africa’s need for an intergenerational approach to social welfare.
The traditional form of African society was strongly intergenerational in its
functioning. The resource base of Africa precludes the possibility of government operating
as the primary or even a substantial funding agency for the social welfare of the elderly in
the near future. Correspondingly, responsibility for the welfare of the older African person
will either be located with kin or with older persons themselves or some mix of the two. It
is therefore appropriate that policy makers and professionals undertake the development of
inter-generational social policies which integrate and not isolate the old. Tax breaks for those
taking care of their older relatives, housing designs which permit multi-generational living,
social facilities which can be used as meeting places or clubs by the older person: each of
these simple measures could play its part in sustaining the environment condusive to inter
generational solidarity.
6.2
In giving specific consideration to Africa, it must be recognised that older persons
will continue for the foreseeable future to be economically active until a late age and that this
requires an appropriate micro-financial structure. Already in Africa alternative models exist
for providing for older persons welfare by extending to them access to the financial services
which enhance profitability of economic activities: in Shama in Ghana, older women have
got together to obtain finance from an outside agency to recapitalise their trading activities
and those of others in their community. They were not looking for grants but an opportunity
to gain the capital to strengthen their own and their community’s economic activity. They
have been successful and generated an African model which can usefully be adopted
elsewhere. Supporting the elderly in economic activity permits the older person to continue
in the inter-generational social exchange which is customary in Africa.
Most importantly the formal education system should incorporate the older person in
the training of the young. Older persons could participate in the education of the young by
imparting traditional skills within the schoolroom. This would be consistent with tradition and
would contribute towards the continued social and self esteem of the elderly, self esteem
which has very real health benefits.
Doc:WHO
-14-
16.1.97
Aging makes a women’s world: the gender approach.
There is a growing recognition of the gender dimension of aging amongst policy
makers but the drawing up and implementing of policies which resolve the pro ems as been
much slower. There are many options which could be considered; three key ones are.
a)
Given the smaller life time access to financial resources experienced by women,
programmes for the recapitalising of older women so as to enable them to continue in
economic activities such as trading should be considered. Micro finance programmes rarely
consider the specific needs of the older woman within their framework: this should be
corrected.
b)
There is a need for specific attention to be paid to the particular health needs of older
women. For example, reproductive health campaigns normally exclude older women but
should not: health education should be provided on a life long basis.
c)
Knowing that it is women who are likely to end up unresourced and unpartnered at
the older cohorts, it is important that support networks which provide sociability
opportunities for the partnerless cohorts be developed. Providing meeting places for older
women and ensuring the political empowerment of elderly women in community decision
processes are key actions which can be taken.
6.3
Developing an indigenous approach to aging: training requirements.
Traditionally in many African communities, elderly women played a key role in the
initiation rites of girls. Although there is now widespread recognition that many of the
particular practices adopted are harmful both to women’s health and self-esteem, traditionally
this was a source of great honour. In many communities where harmful initiation rites are
practiced, the barrier toward better and safer reproductive health for women is located with
these esteemed female elders. In order to retain this esteem and change towards safer
practices, there is a need to produce modern viable substitute rites which incorporate these
women. For example, these elders can be exposed to and trained in knowledge on AIDS;
be assisted in developing a ritualised form which allows for the effective transmission of this
knowledge (and in so doing preserving the basis of their esteem); and be encouraged to
impart within this ritual arrangement modern health knowledge. In case this seems far
fetched, it is already the case that such training of traditional healers on aids is already taking
place in a number of locations in Africa.
6.4
Within the modem sector, there is a need for the training of professionals in
gerontological knowledge. Nurses, doctors, social workers, housing officers and other
welfare personnel need to be better informed on gerontology in general and the specific
features of aging in Africa and in their locality.
Finally, there is a need for cross-African cooperation and interaction on gerontological
training: the exchange of personnel concerned with the aging issue between institutions and
countries, the sharing of training programmes amongst countries, the development of African
training materials, each of these measures would make a contribution to filling the current
policy void.
6
If Africa’s tradition of respect for age is not to disappear, then policy makers and
bellowed1 toTenerate^complacln^Eeal number^ToSS Africans P^0™ Sh°UlddnOt
ac,ion is needed now- ■"™
Doc-.WHO
-15-
16.1.97
References:
Adamchak, D.J. (1989) ’Population aging in sub-Saharan Africa: the effects of development
on elderly.’ Population and Environment, 10 (3): 162-176.
AGES (1995) Effective response to aging in Africa by the year 2000: AGES workshop
report. African Gerontological Society: Accra, Ghana
Antwi, P. (1995) ’ The Aids dilemma: effect on older family members.’ in AGES (1995)
Effective response to aging in Africa by the year 2000: AGES workshop report. African
Gerontological Society: Accra, Ghana
Apt, N.A. (1994) The situation of elderly women in Ghana. Report to the United
Nations. United Nations: New York.
Apt, N.A. (1996) Coping with old age in a changing Africa. Avebury: Aidershot.
Apt, N.A. and Grieco, M.S. (1994) ’Urbanisation, caring for elderly people and the
changing African family: the challenges to social policy.’ International Social Security
Review, Vol. 47 3-4/94 pp
111-122
Apt, N.A. Koomson, J., Williams, N. and Grieco, M.S. ’Family, finance and doorstep
trading: the social and economic wellbeing of elderly Ghanaian female traders.’ Southern
African Journal of Gerontology, 4 (2) 17-24.
Blavo, E. Q. (1995) ’The refugee problem in Africa: the impact on the aged.’ in AGES
(1995) Effective response to aging in Africa by the year 2000: AGES workshop report.
African Gerontological Society: Accra, Ghana
Brown, C.K. (1984) Improving the social protection of the ageing population in Ghana.
Monograph. Institute of Statistical Social and Economic Research, University of Ghana,
Legon.
Cox, F. M. and Mberia,N. U. (1977) Aging in a changing society: A Kenyan experience.
International federation on Aging. New York.
Cumming and Henry, (1961) Growing Old. Basic Books Inc. New York.
Derricourt, N. and Miller, C. (1992) ’Empowering older people: an urgent task in an ageing
world’, Community Development Journal, Vol. 27 No 2 pp 117-121.
Goliber, T. J. (1985) Sub-Saharan Africa: population pressures on development.
Population Reference Bureau (40(1) Washington. DC.
Grieco, M.S. and Apt, N.A. (1996) ’Interdependence and independence: averting the poverty
of older persons in an ageing world.’ United Nations Bulletin on Ageing, Winter issue.
Doc:WHO
-16-
16.1.97
Grieco. M.S., Apt, N.A. and Turner, J. (1996) At Christmas and on rainy days:
transport, travel and the female traders of Accra. Avebury: Aidershot.
Habte-Gabr, E., Blum, N.S. and Smith, I. (1987) ’The elderly in Africa’, Journal of
Applied Gerontology, 6 (2) 163-182
Hauser and Duncan (1959) The study of population: an inventory and appraisal.
University of Chicago press, Chicago.
Havinghurst, R.J. Neurgarten, B.L. & Tobin, S.S. (1968) ‘Disengagement and patterns of
aging’ in B.L. Neurgarten (Ed) Middle age and aging pp 161-172, University of Chicago
Press, Chicago.
ICSG (1985) Recommendations adopted by the African Conference on Gerontology.
International Centre for Social Gerontology: Paris
International Federation on Ageing, (1985) Women and aging around the world. IFA:
Washington D.C.
International Labour Organisation (1993) World labour report 2. Geneva.
Kalache, A. (1986) ’Ageing in developing countries: are we meeting the challenge’. Health
and Planning 1/2
Khasiani, S. (1991) ’Elderly women in Eastern Africa’ in Hoskins, I. (Ed.) Elderly women
as beneficiaries and contributors to development: international perspectives. AARP:
Washington, D.C.
Mamo, J. (1996) ’Research and training: infrastructural support for ageing in developing
countries’, in Meeting the challenges of ageing populations in the developing world.
United Nations Institute on Aging, Malta.
Marzi, H. (1994) ’Old age in Rwanda: A problem?’ BOLD, Vol. 5, No.l pp 3-7
Ojulu, E. (1996) Grappling with the orphans of Kakuuto. The New Vision (Ugandan
Press) September 14.
Okraku, I.O. (1985) A study of Ghanaian public service pensioners. Report presented to
XHIth International Congress of Gerontology, New York.
Pilai, V.K. and Abane, A.M. (1995) ’The dilemma of aging in developing countries: a
demographic portrait’ in Ingman, S. et al. (Eds) An aging population, an aging planet and
a sustainable future. Texas Institute for Research on Aging, University of North Texas
ppl35-145
Tout, K. (1989) Ageing in developing countries. Oxford University Press.
Doc : WHO
-17-
16.1.97
Tout, K. (1990) The aging dimension in refugee policy: a perspective from developing
nations. Ageing International 17: 16-23
United Nations, (1982) United Nations Year Book Vol. 36 UN Publications Sales No.
E.85.1.1
United Nations (1985) The world aging situation: strategies and policies. United Nations:
New York, pp 105-106
United Nations, (1990) Demographic year book. United Nations: New York
Vatuk, S. (1980) "Withdrawal and disengagement as a cultural response to Aging in India."
pp 126-148 in Aging in culture and society edited by Christine L Fry. Brooklyn, New
York.
0
Vatuk, S. (1996) in Meeting the challenges of ageing populations in developing countries.
Final Report. International Institute on Ageing, United Nations, Malta.
Voices from African Women (1996) Experts on our own development needs: participants in
our future. Recommendations. World Bank sponsored workshop held at the Centre for Social
Policy Studies, University of Ghana, Legon, 1996
World Bank, (1994) Averting the old age crisis. World Bank: Washington, D.C.
APPENDIX I
ESTIMATED AND PROJECTED POPULATION IN THE
MAIN FUNCTIONAL AGE GROUPS OF TOTAL
POPULATION IN AFRICA, 1980, 2000 AND 2025
( Percentage of total population)
Africa
Eastern
Middle
Northern
Southern
Western
Africa
Africa
Africa
Africa
Africa
1980
0-14
44.9
45.8
43.5
43.2
42.1
46.4
15 - 59
50.2
49.4
51.3
51.5
51.6
49.3
60 and over
4.9
4.7
5.2
5.3
6.3
4.3
0-14
43.9
46.0
43.4
39.1
41.0
46.1
15 - 59
51.1
49.4
51.4
55.0
52.6
49.5
60 and over
5.0
4.6
5.2
5.9
6.4
4.4
2000
2025
0-14
34.1
36.3
34.7
28.4
32.1
35.7
15 - 59
59.2
58.0
58.7
62.4
59.8
58.6
60 an over
6.6
5.7
6.6
9.2
8.1
5.7
Source:
Demographic indicators of Countries: Estimates and
Projections as Assessed in 1980 (United Nations
Publication. Sales No. E. 82. XIII.5)
1
APPENDIX
II
PROJECTED GROWTH IN 60+ POPULATION (IN THOUSANDS)
1980
2000
2025
Overall
factor
of
change
Africa
22,934
42,726
101.962
4.4
Eastern Africa
Middle Africa
6,320
2,756
11,495
4,783
27,215
10,631
4.3
3.9
Northern Africa
Southern Africa
5,763
2,086
10,918
3,680
27,164
8,124
4.7
3.9
Western Africa
6,011
11,851
28,829
4.7
852,885
1,541,702
3.3
Total African
469 ,982
Absolute increase in 1980-2025 period (60+ population)
Africa
79.0 million
Eastern Africa
20.9 million
Middle Africa
7.9 million
Northern Africa
Southern Africa
21.4 million
6.0 million
Western Africa
22.8 million
Source:
Demographic Indicators of Countries: Estimates and
Projections as assessed in 1980 - Document
ST/ESA/SER.A/82, United Nations, 1982.
Appendix II shows the rapid increases in number of persons aged 60
and over projected for the period 1980 - 2025.
2
APPENDIX
III
estimated and projected population of all ages and
POPULATION AGED 60 AND OVER, FOR REGIONS AND
COUNTRIES OF AFRICA, 1980, 2000 AND 2025.
Africa
A. Total Population
B . Population 60years
and over________
1980
2000
2025
1980
2000
2025
496 982
852 885
1 541 702
22 934
42 726
101 962
133 501 250 029
Eastern Africa
477 919
6 320
11 495
27 215
4 241
358
7 207
620
13 310
1 016
228
16
824
73
468
466
54 666
37 138
93 633
82 343
1 336
724
378
29
2 440
1 319
9 742
6 162
15 208
12 014
26 438
Malawi
472
253
913
492
1 799
1 247
Mauritius b/
Mozambique
959
1 248
60
10 473
18 701
36 260
567
104
994
264
2 116
Reunion
525
4 797
685
9 333
825
Rwanda
19 566
31
218
63
398
162
970
13 418
51 888
285
660
402
1 148
723
2 973
14 726
63 598
21 777
28 435
894
247
326
1 649
485
648
3 859
1 213
1 680
162 170
23 643
2 756
353
548
4 783
615
847
10 631
1 323
1 725
a/
Burundi
Comoros
Ethiopia
Kenya
Madagascar
31
16
4 637
Somalia
13 201
Uganda
United Republic
17 934
of Tanzania
5 766
Zambia
7 396
Zimbabwe
7 156
25 396
34 031
11 276
Middle Africa
r/
Angola
53 093
7 078
91 445
12 376
Cameroun
8 444
13 937
22 997
1 568
23 421
3
5 766
3 497
Central African
Republic
2 294
3 914
7 399
127
201
398
Chad
4 455
7 063
12 195
259
392
785
Congo
1 537
83
147
313
2 717
5 204
Equatorial
Guinea
363
616
1 129
24
37
73
Gabon
548
754
1 172
51
68
108
Zaire
28 291
49 982
87 935
1 306
2 472
5 895
Northern
Africa d/
109 017 186 160
295 916
5 763
10 918
27 164
18 919
62 880
94 933
1 029
2 384
1 693
4 635
4 621
11 025
Algeria
Egypt
Libyan Arab
Jamahiriya
41 963
37 041
64 421
2 978
6 077
10 934
112
288
763
Morocco
20 296
36 509
59 297
984
1 921
5 135
Sudan
18 371
32 328
54 435
870
1 641
3 863
Tunisia
6 354
9 556
13 072
379
728
1 721
Southern
Africa
32 998
57 981
100 553
2 086
3 680
8 124
Botswana
807
1 597
3 432
35
51
161
Lesotho
1 341
2 222
3 732
90
144
297
Namibia
1 009
1 822
3 266
54
98
226
South Africa 29 285
51 320
88 260
1 881
3 336
7 326
Western
Africa e/
28 829
141 372
267 271
505 144
6 011
11 851
Benin
3 530
6 756
13 927
160
300
714
Burkina Faso
6 908
11 895
20 465
330
576
1 293
Cape Verde
324
427
824
18
35
95
Gambia
603
1 046
1 970
28
50
112
Ghana
11 679
22 348
42 007
524
999
2 465
Guinea
5 014
GuineaBissau
w
8 823
16 841
247
454
979
573
839
1 432
42
61
103
Ivory Coast
8 034
14 775
26 727
272
743
1 681
Liberia
1 967
4 002
7 897
82
166
439
Mali
6 940
12 620
24 979
313
561
1 298
Mauritania
1 634
3 022
6 074
73
129
326
Niger
5 318
10 045
20 516
227
405
982
Nigeria
77 082
149 965
285 479
3 117
6 361
16 053
Senegal
5 661
9 747
16 771
270
471
1 060
Sierra Leone
3 474
6 090
10 675
185
319
707
Togo
2 625
4 844
8 854
121
226
540
Source:
Demographic Indicators of Countries
Note: Figures for individual countries may not add to subregional
totals as the population of additional territories may be included
in the totals
a/
b/
c/
d/
e/
Including British Indian Ocean Territory,
Seychelles.
Including Agalega, Rodriques and St. Brandon.
Including Sao Tame and Principe.
Including Western Sahara.
Including /St. Helena.
•
5
Djibouti
and
Direct Fax: + 41-22 791-48-39
Direct telephone: + 41-22 791-34-04
WHO/MSD/HPS/MDP/OO.5
English only
Distr.: General
Healthy Ageing Adults with
Intellectual
Disabilities
Physical Health Issues
International Association
for the Scientific Study of
Intellectual Disabilities
WHO Global
Movement for
Active Ageing
Department of Mental Health
and Substance Dependence
World Health Organization
Healthy Ageing - Adults with Intellectual Disabilities
Physical Health Issues
Authors
Heleen Evenhuis
C. Michael Henderson
Helen Beange
Nicholas Lennox
Brian Chicoine
This report has been prepared by the Aging Special Interest Research Group of the International
Association for the Scientific Study of Intellectual Disabilities (IASSID) in collaboration with
the Department of Mental Health and Substance Dependence and The Programme on Ageing and
Health, World Health Organization, Geneva and all rights are reserved by the above mentioned
organization. The document may, however, be freely reviewed, abstracted, reproduced or
translated in part, but not for sale or use in conjunction with commercial purposes. It may also
be reproduced in full by non-commercial entities for information or for educational purposes with
prior permission from WHO/IASSID. The document is likely to be available in other languages
also. For more information on this document, please visit the following websites:
http://www.iassid.wisc.edu/SIRGAID-Publications.htm and http://www.who.int/mental health,
or write to:
Department of Mental Health and
Substance Dependence
(attention: Dr S. Saxena)
World Health Organization.
20 Avenue Appia
CH-1211 Geneva 27
IASSID AGING SIRG
Secretariat
c/o 31 Nottingham Way South
Clifton Park
New York 12065-1713
USA
or E-Mail: sirgaid@aol.com
Acknowledgements
This report was initially developed at the 3rd International Roundtable on Health Issues in Manchester England.
It was then circulated to both Health Issues and Aging SIRG working group members and selected others for
commentary and amendments. The amended document became part of the working drafts circulated to delegates
at the 10* International Roundtable on Ageing and Intellectual Disabilities in Geneva in 1999, and was discussed
and amended further at this meeting. A set of summative broad goals was developed by the group and appears in
this paper, which itself became part of the comprehensive WHO document on ageing and intellectual disability
(WHO, 2000). The primary goal of this paper is to organize information on physical health issues in older people
with intellectual disabilities, and to present broad summative goals to direct further work in this area.
Partial support for the preparation of this report and the 1999 10* International Roundtable on Ageing and
Intellectual Disabilities was provided by grant 1R13 AG15754-01 from the National Institute on Aging (Bethesda,
Maryland, USA) to M. Janicki (PI).
Also acknowledged is active involvement of WHO, through its Department of Mental Health and Substance
Dependence (specially Dr Rex Billington and Dr S. Saxena), and The Programme on Ageing and Health in
preparing and printing this report.
Suggested Citation
Evenhuis, H., Henderson, C.M., Beange, H., Lennox, N., & Chicoine, B. (2000). Healthy Ageing - Adults with
Intellectual Disabilities: Physical Health Issues. Geneva, Switzerland: World Health Organization.
Report Series
World Health Organization (2000). Healthy Ageing - Adults with Intellectual Disabilities: Summative Report.
Geneva: Switzerland: World Health Organization (WHO/MSD/HPS/MDP/00.3).
Thorpe, L., Davidson, P., Janicki, M.P., & Working Group. (2000). Healthy Ageing - Adults with Intellectual
Disabilities: Biobehavioural Issues. Geneva, Switzerland: World Health Organization
(WHO/MSD/HPS/MDP/OO.4).
Evenhuis, H., Henderson, C.M., Beange, H., Lennox, N., Chicoine, B., & Working Group. (2000). Healthy
Ageing - Adults with Intellectual Disabilities: Physical Health Issues. Geneva, Switzerland: World Health
Organization (WHO/MSD/HPS/MDP/OO.5).
Walsh, P.N., Heller, T., Schupf, N., van Schrojenstein Lantman-de Valk, H., & Working Group. (2000).
Healthy Ageing - Adults with Intellectual Disabilities: Women's Health and Related Issues. Geneva,
Switzerland: World Health Organization (WHO/MSD/HPS/MDP/00.6).
Hogg, J-, Lucchino, R., Wang, K., Janicki, M.P., & Working Group (2000). Healthy Ageing - Adults with
Intellectual Disabilities: Ageing & Social Policy. Geneva: Switzerland: World Health Organization
(WHO/MSD/HPS/MDP/OO.7).
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
1.
Introduction: A lifespan, developmental
perspective on healthy ageing and
intellectual disability
The majority of people, including
people with intellectual disability, live in the
world’s less developed countries. Because of
the paucity of information regarding the
health status and needs of persons with
intellectual disabilities in less developed
countries, it is hard to make universal
statements regarding “healthy ageing” for
people with an intellectual disability. The
highest priorities for the majority of people
with intellectual disabilities in all countries
are likely to include basic health care,
adequate nutrition and housing, education,
civil rights, and political, social and economic
stability. An international perspective on
healthy ageing for persons with intellectual
disabilities must acknowledge that the
available literature largely reflects the
experiences of clinicians and researchers in
industrialized countries. Nelson and Crocker
in 1978 called for affiliations between
academic developmental physicians and
physicians serving persons with intellectual
disabilities in large institutions. A current
high priority should be the development of
alliances between policy makers, advocacy
groups, physicians, educators and other
professionals serving people with intellectual
disabilities in
less
developed
and
industrialized countries (for an example, see
Helm, Crocker & Rubin, 1999).
Recommendation 1
To develop a worldwide perspective on
healthy
ageing
and
intellectual
disabilities through affiliations between
interested parties in industrialized and
developing countries that promote
WHO/MSD/HPS/MDP/OO.5
Page 1
advocacy, trans-cultural and costeffective clinical practices, research, and
the exchange of information and
expertise.
Although there is more information
regarding the health status of people with
intellectual disabilities in industrialized
countries, it remains difficult to make general
statements regarding strategies for healthy
ageing. Large, industrialized countries- such
as the USA- may exhibit profound regional
differences in the prevalence rates for
intellectual disabilities (MMWR, 1996).
These differences reflect socioeconomic
factors, differences in the definition of
intellectual disabilities, and case-finding
techniques (Schrojenstein Lantman-de Valk,
1997). People with intellectual disabilities
constitute a heterogenous population. The
“two group” model is an attempt to point out
that people with mild cognitive impairment
may have different etiologies and clinical
issues than people with more severe cognitive
impairment (who may be more likely to have
associated syndromic conditions and other
developmental disabilities) (Capute &
Accardo, 1990). Furthermore, industrialized
countries exhibit variations in the way that
health care and other services are organized
and delivered to people with (and without) an
intellectual disability, and these pre-existing
differences in service delivery have an impact
on the relevance of specific strategies to
promote healthy ageing.
Industrialized countries are witnessing an
increase in the longevity of adults with an
intellectual disability (Janicki et al, 1999). As
more people with intellectual disabilities
attain older age, it is important to note that
excess functional impairment, morbidity, and
even mortality can result from the
WHO/MSD/HPS/MDP/OO.5
Page 2
Healthy Ageing-Adults with Intellectual Disabilities: Physical Health Issues
consequences of early age-onset conditions,
through their long-term progression or their
interactions with older age-onset conditions.
An example of the potential consequences of
long-term progression is the high incidence of
esophageal reflux in children with cerebral
palsy and severe motoric compromise. If
childhood-onset esophagitis is not identified
and treated, it can lead to high rates of
esophageal stricture or cancer in adulthood
(Roberts et al, 1986; Bohmer et al 1996,
1997a,b; Cook, 1997). An example of the
interaction of early-age onset and later-age
onset conditions is, in persons with Down
syndrome, the superimposition of adult-onset
sensorineural hearing loss on childhoodacquired conductive hearing loss resulting
from inadequately treated middle ear
infections (Evenhuis, 1995a,b). The long-term
consequences of therapeutic interventions also
need to be considered- examples are
movement disorders that may result from the
prolonged use of neuroleptic medications
(Haag, Ruther & Hippius, 1992; Wojcieszek,
1998), and bone mineralization disease that
may occur secondary to the chronic use of
certain anticonvulsants (Bikie, 1996; Phillips,
1998). Although more research needs to be
done, it is apparent that healthy ageing for
people with an intellectual disability requires
a dynamic, lifespan clinical approach.
Recommendation 2
Health care providers caring for people
with intellectual disabilities of all ages
should adopt a lifespan approach that
recognizes
the
progression
or
consequences of specific diseases and
therapeutic interventions.
2.
Special issues in health care, healthy
ageing, and intellectual disability
Research
indicates that
specific
populations of people with intellectual
disabilities have particular health risks. These
populations may be defined by the presence of
specific syndromes (hence termed syndrome
specific), or by the extent of the central
nervous system compromise that has caused
the intellectual disability (leading to
associated developmental disabilities such as
epilepsy, cerebral palsy, and some forms of
visual impairment). In addition, populations
may be defined by their placement within
specific habilitative and residential programs
and access to basic health care services. The
resulting lifestyle and environmental issues
and health promotion/disease prevention
practices may directly cause, or interact with,
hereditary factors, to protect against or confer
specific health risks. Finally, the increased
longevity of persons with intellectual
disabilities in industrialized countries leads to
the definition of populations by chronological
older age- and a subsequent increased risk of
acquiring adult and older-age associated
conditions.
3.
Syndrome-specific conditions
Persons with specific syndromes
constitute a clinically and numerically
important portion of the population with an
intellectual disability. These syndromes can
be caused by toxins, injuries, infections, and
genetic/metabolic disorders which affect the
central nervous system and, in some cases,
other
organ
systems,
during
the
developmental period. Moreover, these effects
can become manifested, and clinically
anticipated, at different stages of the lifespan.
Down syndrome is a relatively common
chromosomal disorder that, in addition to
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
WHO/MSD/HPS/MDP/OO.5
Page 3
causing an intellectual disability, results in a
disease and diabetes arising from morbid
relatively high risk for a number of
obesity (Greenswag, 1987; Lamb & Johnson,
conditions. In the neonatal period, Down
1987). Other syndromes may not be as
syndrome can be associated with congenital
common or easily identifiable as Down
defects of the heart, gastrointestinal tract,
syndrome, Fragile X syndrome, or Pradereyes, and other organs (Pueschel & Pueschel,
Willi syndrome; however, the same principle
.
1992)
Throughout the lifespan, persons with
of knowledge of syndrome-specific issues
Down syndrome manifest higher risks for
may lead to the enhanced functional and
specific
endocrinological
(especially
health status of persons who have them.
hypothyroidism), infectious, dermatologic,
Examples are the deafness and eye
oral health, cardiac, musculoskeletal and other
abnormalities that occur in people with
organ system disorders (Murdoch et al, 1977;
intrauterine toxoplasma, cytomegalovirus
Sare et al, 1978;Dinani & carpenter, 1990;
infections or foetal alcohol syndrome
Pueschel & Pueschel, 1992; Song, Freemantle
(Evenhuis & Nagtzaam, 1998).
& Selicowitz, 1993; Marino & Pueschel,
.
1996)
In addition, they exhibit high rates of
Knowledge of the specific age-related
disorders of the special senses of vision (Pires
health risk factors associated with Down
da Cunha & Belmiro de Castro Moreira,
syndrome and other syndromes can lead to
1996)
and hearing (Strome & Strome, 1992; enhanced prevention or early diagnosis of
potentially impairing conditions and, possibly,
Roizen et al, 1993). Older adults with Down
increased life expectancy. Other relatively
syndrome have an increased risk of the early
common syndromes associated with an
development of age-related visual and hearing
intellectual disability that can have an impact
disorders (Buchanan, 1990; Evenhuis et al,
1992), epilepsy (McVicker, Shanks &
on health status across the lifespan include
McCleeland, 1994) and dementia (Wisniewski
Williams syndrome, Angelman syndrome,
and tuberous sclerosis.
et al, 1985; Lai & Williams, 1989; Evenhuis,
1990; Burt et al, 1995; Zigman et al, 1995;
In addition, prenatal medical practices
Devenny et al, 1996). Adults with Down
(such as the prevention of premature delivery)
syndrome have decreased longevity compared
and the early identification of metabolic
to the general population of people with
syndromes through neonatal screening (such
intellectual disabilities (Janicki et al., 1999).
as those that detect phenylketonuria or
Fragile X syndrome is the most common
congenital hypothyroidism) have already led
inherited disorder associated with an
to treatments that can prevent or mitigate
intellectual disability. People with Fragile X
intellectual disabilities. Genetic counseling
syndrome exhibit relatively high rates of
also helps to prevent inherited disorders that
mitral valve prolapse (Loehr et al, 1986;
are associated with intellectual disabilities. In
Sreeram et al, 1989), musculoskeletal
the future, the field of biomolecular genetics
disorders (Davids, Hagerman & Eilert, 1990),
may provide further advances in the
early female menopause (Conway et al, 1998;
prevention or treatment of intellectual
Murray et al, 1998), epilepsy (Ribacoba et al,
disabilities and other impairments that are
1995) and visual impairments (Maino et al,
caused by genetic/metabolic syndromes.
1991). Adults with Prader-Willi syndrome
are prone to high rates of cardiovascular
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
WHO/MSD/HPS/MDP/OO.5
Page 4
Recommendation 3
Children presenting with intellectual
disabilities should have thorough
diagnostic searches for etiologies and
syndromes to optimize their current and
future health care.
4. Associated developmental disabilities
arising from central nervous system
compromise
A significant number of persons with
intellectual disabilities do not have specific
syndromes,
but
exhibit
associated
developmental disabilities that reflect central
nervous system compromise. These associated
developmental disabilities may result in both
primaiy and secondary diseases or
impairments; they constitute a large
component of mortality during childhood
(Boyle, Decoufle & Holmgreen, 1994). An
important example is cerebral palsy (Rosen &
Dickinson, 1992). Children and adults with
intellectual disabilities and cerebral palsy with
severe motoric and functional impairments
have decreased life expectancies compared to
the general population (Evans, Evans &
Alberman, 1990; Crichton, Mackinnon &
White, 1995; Strauss & Shavelie, 1998;
Strauss, Shavelie & Anderson, 1998). In
addition to these motoric impairments that can
adversely affect speech, mobility, and
survival, children with intellectual disabilities
and cerebral palsy present with high rates of
strabismus and cerebral visual impairment
(Schenk-Rootlieb et al, 1992; Erkkila,
Lindberg & Kallio, 1996) and bladder
dysfunction (Boone, 1998). Spasticity may
require medical or neurosurgical treatment to
alleviate pain, prevent deformities, and
enhance function (Russman & Romness,
1998); orthopedic surgery may also be
required (Renshaw et al, 1996). Children and
adults with intellectual disabilities and
cerebral palsy also exhibit a high risk for a
number of secondary disorders. Upper
gastrointestinal dysmotility, resulting in
dysphagia, esophageal reflux and gastric
emptying disorders, may lead to dental
erosion, esophagitis, anemia, feeding
problems, aspiration and pneumonia (indeed,
respiratory disease is the leading cause of
death in people with cerebral palsy and severe
motoric impairments) (Reilly & Skuse, 1992;
Arvedson et al, 1994; Mirrett et al, 1994;
Rogers et al, 1994; Bohmer et al, 1997b,
Shaw, Wetherill & Smith, 1998). People with
intellectual disabilities and cerebral palsy are
also prone to lower gastrointestinal
dysmotility; this may cause constipation and
fecal impaction (Cathels & Reddihough,
,
1993)
and death due to bowel obstruction and
intestinal perforation (Jancar & Speller,
.
1994)
Bone
demineralization
with
consequent fractures and decubitus ulcers may
occur secondary to long-standing immobility
and nutritional deficiencies (Brunner &
Doderlein, 1996; Wagemans et al, 1998).
Children and adults with cerebral palsy and
severe or multiple impairing conditions
require multidisciplinary care (Lowes &
Gries, 1998). In later life, the chronic
abnormalities of muscle tone may lead to
chronic myofascial pain, hip and back
deformities (including degenerative vertebral
spine disease that may cause myelopathy);
worsening bowel and bladder function is also
seen (Harada et al, 1996; Mikawa Y,
Watanabe R & Shikata J, 1997;Turk et al,
1997; Saito et al, 1998). The optimization of
function and survival for people with cerebral
palsy throughout life depends on the
anticipation and identification, and prevention
or treatment, of both primary and secondary
disorders.
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
People with intellectual disabilities and
epilepsy have other health risks. Children with
intellectual disabilities and intractable
epilepsy present with higher rates of cerebral
palsy, visual impairment, and severe cognitive
impairments (Steffenberg et al, 1995). In
addition to the risk of status epilepticus
(which is more common in children with co
existing neuro-impairments such as cerebral
palsy), epilepsy is associated with injuries
such as fractures (Desai, Ribbans & Taylor,
1996; Jancar & Jancar, 1998). People with
intellectual disabilities and epilepsy have an
increased mortality due to sudden death,
aspiration episodes, and pneumonia (Forsgren
et al, 1996). Unrecognized or inadequately
treated seizures can impair cognitive function
(Aldenkamp, 1997). Epilepsy syndromes
associated with an intellectual disability
(Dulac & N’Guyen, 1993: Ohtsuka, 1998)
may prove difficult to treat and lead to a
worsening of seizure control (Udani et al,
1993; Branford, 1998) and progressive
cognitive impairment (Oka et al, 1997).
However, some people with an intellectual
disability and epilepsy exhibit a remission of
the epilepsy in later life- the need for
anticonvulsant medication needs to be
regularly reappraised (Goulden et al, 1991;
Brodtkorb, 1994). A
coordinated and
comprehensive approach to the management
of epilepsy in people with intellectual
disabilities may result in optimal management
(Coulter, 1997)- health care service models do
not always foster this type of approach.
Other
examples
of
associated
developmental disabilities that can result from
central nervous system compromise, with
obvious health status and functional
repercussions, include autism, mental health
issues, and some disorders of vision.
WHO/MSD/HPS/MDP/OO.5
PagcS
Recommendation 4
Persons presenting with an intellectual
disability should have expert care to
identify
and
treat
associated
developmental disabilities such as
cerebral palsy, epilepsy, autism, and
disorders of vision.
5. Conditions related to lifestyle and
environment and health promotion/disease
prevention practices
Industrialized countries have varying
habilitative and residential philosophies and
practices for persons with intellectual
disabilities. In the North America, Australia,
and in many European countries, governments
have implemented measures to close large
publically -operated institutions and move
residents into a variety of small community
based settings. Other countries have opted to
modify the institutional model. In addition,
countries exhibit wide variation in
expenditures for supports and services for
people with intellectual disabilities (for USA,
see Braddock et al, 1998). It is important to
note that, throughout the industrialized world,
many people with intellectual disabilities have
experienced or continue to experience
placement in large institutions. Previous or
current residence in large institutions place
many people with intellectual disabilities at
risk for past or present exposure to a number
of infectious diseases, including tuberculosis
(Lemaitre et al, 1996), hepatitis B (Hayashi et
al, 1989; Stehr-Green et al, 1992; Cramp et al,
1996), and Helicobacter pylori (Bohmer et al,
.
1997)
WHO/MSD/HPS/MDP/OO.5
Page 6
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
Recommendation 5
People with intellectual disabilities with
current or previous histories of life in
large institutions should be evaluated for
evidence of infectious diseases such as
tuberculosis,
hepatitis
B,
and
Helicobacter pylori.
As people with intellectual disabilities,
particularly those with milder cognitive
impairments, are offered more lifestyle
choices, there is the potential that some of
these choices may result in a higher potential
for risky behaviors and conditions that result
from the lifestyle choices, or the interaction of
lifestyle and hereditary factors. People with
intellectual disabilities living in the
community may engage in tobacco use
(Burtner et al, 1995; Hymowitz et al, 1997;
Tracey and Hoskin, 1997), other substance
abuse (Westermeyer, Phaobtong & Neider,
1988; Moore & Posgrove, 1991; Christian &
Poling, 1997), violent behavior (Pack,
Wallander & Brown, 1998), and high-risk
sexual activity (Cambridge, 1996). Behavioral
factors of people with intellectual disabilities
and their carers contribute to the high rates of
peridontal disease noted in people with
intellectual disabilities (Beange, McElduff &
Baker, 1995; Lucchese & Checchi, 1998;
Scott, Marsh & Stokes, 1998). A sedentary
lifestyle, with consequent risks of
deconditioning, obesity, (and diseases related
to obesity including coronary artery disease,
hypertension and diabetes) has been noted in
people with intellectual disabilities in a
variety of residential settings (Rimmer,
Braddock & Marks, 1995; Beange, McElduff
& Baker, 1995; Fujiura, Fitzsimmons, Marks
& Chicoine, 1997). For people with
intellectual disabilities, targeting lifestyle
issues (Turner & Moss, 1996) may result in
substantial gains in longevity and older-age
quality of life and functional capability.
Special programs that target healthy behaviors
such as safe sex practices (Ager & Littler,
,
1998)
avoidance of tobacco and other
harmful substances (Tracy & Hosken, 1997),
good oral hygeine (Nicolaci & Tesini, 1992),
optimal exercise and dietary habits (Pitetti,
Rimmer & Femhall, 1993, Golden & Hatcher,
,
1997)
and fire safety education (Janicki &
Jacobson, 1985; MacEachron & Krauss,
1985), need continued development.
Recommendation 6
People with intellectual disabilities, and
their carers, need to receive appropriate
and ongoing education regarding healthy
living practices in areas such as nutrition,
exercise, oral hygeine, safety practices,
and the avoidance of risky behaviors
such as substance abuse and unprotected
or multiple partner sexual activity.
Presently, however, there is no research
to suggest that preventative health practices
that are recommended for the general
population, throughout the lifespan, should be
withheld from people with intellectual
disabilities. Standard immunization schedules
and age-appropriate screening protocols for
conditions such as dental disease, sensory
impairments, various forms of cancer (with
the possible exception of PAP smears in
women who have no history of sexual
activity), glaucoma, hyperlipidemia, and
hypertension, should be offered to people with
intellectual disabilities.
Recommendation 7
People with intellectual disabilities
should receive the same array of lifespan
preventative health practices as those
offered to the general population.
Health} Ageing - Adults with Intellectual Disabilities: Physical Health Issues
6.
Older age-related conditions
A number of recent studies have
addressed the health status of middle-age and
older adults with intellectual disabilities.
These studies vary in methodology, and
include longitudinal residence carers surveys
(Anderson, 1993), interviews with subjects
with intellectual disabilities and their carers
(Cooper, 1998), carers interviews combined
with medical chart reviews (Kapell et al,
,
1998)
health status questionnaires of
physicians providing care to subjects (Hand,
1994), questionnaires of direct care staff and
physicians (Schrojenstein Lantman-de Valk et
al, 1997), comprehensive medical assessment
of subjects by a developmental physician
(Beange, McElduff & Baker, 1995), and
comprehensive and longitudinal assessment of
subjects by a developmental physician
(Evenhuis, 1995a,b; Evenhuis, 1997a). Only
one of these studies attempted to identify
subjects who were not previously registered
or residing within the intellectual disabilities
service system, resulting in a 15% segment of
the older population with an intellectual
disability (Hand, 1994). It is significant that
the study that utilized comprehensive medical
assessment by a developmental physician (of
subjects who were being managed by
community-based primary care physicians)
uncovered a high number of previously
undiagnosed conditions (Beange, McElduff &
Baker, 1995). The cumulative research
suggests that older adults with intellectual
disabilities have rates of common adult and
older age-related conditions that are
comparable to or even higher than that of the
general population (Minihan & Dean, 1990;
Anderson, 1993; Hand, 1994; Beange,
McElduff & Baker, 1995; Evenhuis, 1997:
Schrojenstein Lantman-de Valk et al 1997;
Kapell et al, 1998; Cooper, 1998). For many
people with intellectual disabilities, the risk of
a variety of chronic diseases that are acquired
WHO/MSD/HPS/MDP/OO.5
Page 7
during adulthood, and that are associated with
older-age morbidity or functional impairment,
reflects the same interplay between hereditary
predisposition and environment that is present
in other older persons. However, as discussed
above, factors related to syndromes,
associated developmental disabilities, and
lifestye and environmental issues, may
account for higher rates, compared to the
population without intellectual disabilities, for
a number of conditions. Previously noted
examples include obesity, dental disease,
gastroesophageal reflux and esophagitis,
constipation, and deaths due to bowel
obstruction and intestinal perforation and
gastrointestinal cancer. Other examples
include non-atherosclerotic heart disease
(Kapell et al, 1998; Cooper, 1998), mobility
impairment (Kearny, Krishnan & Londhe,
1993; Evenhuis, 1997), thyroid disease
(Kapell et al, 1998), osteoporosis (Center,
Beange & McElduff, 1998) psychotropic drug
polypharmacy (Tu, 1979; Gowdy, Zarfas &
Phipps, 1987; Schrojenstein Lantman-de Valk
et al, 1997), and deaths due to pneumonia
(O’Brien, Tate & Zaharia, 1991; Janicki et al,
.
1999)
Recommendation 8
Health care providers serving older
adults with intellectual disabilities should
recognize that adult and older-age onset
medical conditions are common in this
population, and may require a high index
of suspicion for clinical diagnosis.
Sensory impairments appear to constitute
an area of special vulnerability for older
adults with intellectual disabilities (Warberg
M & Rattleff J, 1992;Wilson & Haire, 1992;
Schrojenstein Lantman-de Valk et al, 1997).
Although causes of visual and hearing loss
may be present in rates similar to those in the
general population (presbyacusis, cataract,
WHO/MSD/HPS/MDP/OO.5
Page S
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
presbyopia, macular degeneration, glaucoma,
diabetic retinopathy), the resulting impairment
may be more severe because of pre-existing,
childhood onset visual and auditory pathology
(Schrojenstein Lantman de-Valk et al, 1994;
Evenhuis, 1995a,b).
Functional decline in older adults with
intellectual disabilities warrants careful
evaluation; a decline in functional status
should not be peremptorily attributed to
behavioral issues or dementia (Prasher &
Chung, 1996; Burt et al, 1998).
Comprehensive evaluations of older adults
presenting with changes in state or functional
decline and intellectual disabilities have
yielded high rates of (often-concurrent)
treatable conditions. Examples include
affective disorders, sensory impairments,
delirium, and undiagnosed medical conditions
(Evenhuis, 1997b; Evenhuis, 1999; Thorpe,
1999; Chicoine, McGuire & Rubin, 1999;
Henderson et al, in press). It is important to
note that, because of communication
difficulties, medical and mental health
disorders may present atypically. Even people
with an intellectual disability and dementia
may have a relatively high burden of treatable
medical conditions that may have an additive
effect on disability (Cooper, 1999). The
reversal of functional decline should be
sought for people with intellectual disabilities
of all ages, and not solely for functional or
quality of life issues- severe functional
impairment is related to decreased life
expectancy in people with intellectual
disabilities of all ages (Eyman et al, 1990).
Recommendation 9
Functional decline in older adults with
intellectual disabilities warrants careful
medical evaluation; undiagnosed mental
health and medical conditions can have
atypical presentations in people with
limited language capabilities. Regular
screening for visual and hearing
impairments should be implemented for
people with intellectual disabilities
during the childhood and late-adulthood
years.
7.
Barriers to health care services in
healthy ageing and intellectual disabilities
In theory, people with intellectual
disabilities living in industrialized countries
have equal access to essential health care
services. As mentioned previously, countries
(and regions within countries) vary in their
models of health care delivery for people with
intellectual disabilities. However, it is worth
noting the general barriers that exist in
providing care to people with intellectual
disabilities (see Seltzer & Luchterhand, 1994),
although the significance of these barriers
may vary by region and type of health care
system. It is important that health care
providers and policy makers acknowledge that
many people with intellectual disabilities have
special needs that may require modification of
standard health care practices and service
models.
Communication difficulties arising from
intellectual disabilities or associated motor
impairments can serve as barriers to accurate
medical evaluation. The medical history, in
many cases, is derived from carers
observations. In these cases, the health care
provider is dependent on the verbal or written
reports of carers that know the patient. People
with intellectual disabilities can benefit from
the training of carers in health-related issuesparticularly basic assessment skills (Crocker
& Yankauer, 1987). There is evidence that, in
places where deinstitutionalization has led to
placement of people with intellectual
disabilities in the community, health care has
deteriorated because carers were not familiar
with the individuals (Linaker & Nottestadd,
1998). Carers need to be able to recognize
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
signs of distress in persons with severe
cognitive
impairment
(LaChapelle,
Hadjistawropoulos & Craig, in press); at the
same time, individuals who have potential
communication skills need to be educated in
the effective communication of pain or
distress (Bromley, Emerson & Caine, 1998).
In addition, unresolved concerns about
informed consent for or refusal of health
services may, at times, prove to be a barrier
for some people with intellectual disabilities
(O’Donnell, 1994). Even in optimal
circumstances- when the ill person with an
intellectual disability is accompanied by
knowledgeable carers- informant-based
medical history taking takes time. Concepts of
health care productivity need to be altered
when considering the population of people
with intellectual disabilities and significant
communication difficulties.
Physical barriers may constitute a
problem for many persons with intellectual
disabilities and other disabling conditions.
Older women with cerebral palsy, with and
without an intellectual disability, have
reported difficulties obtaining dental and
gynecologic care because of accessibility
problems (Turk et al, 1997). Health care
facilities should be easily accessible to
persons with an intellectual disability who
may have a variety of physical and sensory
impairments.
Behavioral issues constitute another
potential barrier. Persons with intellectual
disabilities may have difficulty cooperating
with examinations and procedures. Health
care providers need to be educated regarding
the confusion, fear, and frustration that many
people with intellectual disabilities may
experience when they access health care
services. Again, more time may be necessary
to reassure someone with an intellectual
disability. Habilitative programs or health
WHO/MSD/HPS/MDP/OO.5
Page 9
care providers should address the issue of
health care- not just in terms of healthy living,
but also by increasing understanding and
confidence in using health services (McRae,
1997; Lunsky, 1999). Protocols for safe
conscious sedation may be helpful for some
people with an intellectual disability. In other
cases, general anesthesia may be necessary to
enable safe and thorough health maintenance
exams and procedures. Behavioral issues can
also play an important role in successful acute
rehabilitation after disease, insults or injury.
Also, teaching persons with an intellectual
disability how to use assistive or prosthetic
devices, such as canes, walkers, wheelchairs,
braces, dentures, eyeglasses and hearing aids,
may require more time and special techniques.
For many people with intellectual
disabilities, the most important barrier to
effective medical care is case complexity.
People with intellectual disabilities may
access a variety of medical subspecialists,
dentists, audiologists, mental health providers,
and other health care professionals. Case
management is crucial for the optimal
utilization of health care services for people
with intellectual disabilities who have
complex needs requiring multidisciplinary
expertise (Walsh, Kastner & Criscione, 1997).
It is worth noting that, in some countries
or states, health care rationing or
reimbursement schedules may constitute
barriers to basic health services. In addition,
administrators and policy makers need to
understand that, in some cases, clinically
indicated and relatively expensive techniques
and expertise may prove cost-effective in the
long-term.
Recommendation 10
Health care providers and policy makers
need to eliminate attitudinal, architectural
WHO/MSD/HPS/MDP/OO.5
Page 10
Healthy Ageing - Adults
and health care reimbursement barriers that
interfere with the provision of high quality
health services for people with intellectual
disabilities.
Recommendation 11
Carers need training in assessing and
communicating the basic health status of
the adults with intellectual disabilities.
Recommendation 12
Health care case management should be
available to adults with intellectual
disabilities who have complex needs.
8. The role of the physician in healthy
ageing and intellectual disabilities: Primary
care and developmental physicians
Physicians can play a pivotal role in the
functional attainments and quality of life of
many persons with intellectual disabilities.
However, successful habilitation and
community placement may depend on the
prevention or identification of a variety of
health issues. Accordingly, the physician is
one member of a health care team. Other
important team members include nurses,
audiologists, nutritionists, dentists, mental
health specialists,
and rehabilitation
specialists. An interdisciplinary approach may
be required for a number of health issues,
including visual and hearing impairment
(Evenhuis, 1995a,b), swallowing disorders
(Kennedy et al, 1997), urinary incontinence
(Bradley, Ferris & Barr, 1995), dental care
(Editorial, 1998), and geriatric assessment
(Carlsen et al, 1994).
Many adults with intellectual disabilities
do not need special medical attention. It is
important for primary care physicians to
recognize that, in general, adults and older
persons with an intellectual disability have the
with Intellectual Disabilities: Physical Health Issues
same needs for disease prevention, diagnosis,
and treatment as other members of the
population. For routine care, health status can
improve by ensuring regular encounters with
primary care physicians (Martin, Roy &
Wells, 1997), and through "opportunistic”
health assessment at the time of encounters
(Jones & Kerr, 1997). However, some persons
with intellectual disabilities and specific
health risks (because of syndrome-specific
issues, associated developmental disabilities,
and complex neuropsychiatric conditions)
may require regularly scheduled, easily
administered screening protocols (Cohen,
1997; Piachaud, Rohde & Pasupathy, 1998).
It is noted that, in many countries, the
relatively frequent contact between adults and
older persons with an intellectual disability
and primary care physicians based in the
community is a new and largely unplanned
phenomenon
arising
from
the
deinstitutionalization and increased longevity
of persons with intellectual disabilities.
Evidence suggests that community-based
primary care physicians in some regions may
not provide access or have the expertise or
professional back-up to care for people with
intellectual disabilities who have severe or
complex impairments (Strauss & Kastner,
1996; O’Brien & Zahari, 1998; Strauss et al,
1998). Primary care physicians need to be
able to get access to information through a
variety of means: formal consultations,
telephone consultation systems, internet
communication, clinical guidelines, training
seminars, and written materials such as texts
(see Lennox, 1999). In complex cases,
established referral paths to developmental
physicians and other specialists with
intellectual disabilities expertise can be
crucial.
Developmental physicians, trained with
a lifespan approach to developmental
disabilities, can provide valuable expertise to
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
primary care physicians and other health care
providers serving people with intellectual
disabilities. The influence of this specialty can
range from preparing written guidelines and
training programs for primary care physicians
and other health care providers, to providing
formal and informal consultation services for
complex patients. In addition, they can
provide leadership in the area of clinical
research.
Health care providers need evidence
based practice standards (Lennox & Kerr,
1997), similar to the international guidelines
for the screening and diagnosis of visual and
hearing impairments in persons with
intellectual disabilities, recently developed by
the IASSID Special Interest Research Group
on Health Issues (Evenhuis & Nagtzaam,
1998). Comparable standards need to be
developed for other specific interventions,
conditions, diseases, and syndromes. Most
important is a need for leadership to more
fully introduce people with an intellectual
disability of all ages- who comprise a
substantial portion of the human populationinto basic and postgraduate medical
education.
Lastly, there is a need for medical
specialists with interest and expertise in
intellectual
disabilities.
Psychiatrists,
neurologists, physiatrists, otolaryngologists,
ophthalmologists and other specialists with
intellectual disabilities knowledge can be
enormously helpful to colleagues in their own
disciplines, as well as to primary care
specialists and developmental physicians.
Recommendation 13
An interdisciplinary approach is required
for a variety of clinical issues involving
people with intellectual disabilities.
WHO/MSD/HPS/MDP/OO.S
Page 11
Recommendation 14
Health care systems need to provide
educational and clinical practice supports
for primary care physicians caring for
people with intellectual disabilities.
Recommendation 15
The development of the discipline of
lifespan developmental medicine is
necessary to provide medical education,
practice standards, clinical expertise,
research, and professional leadership
regarding the special needs of people
with intellectual disabilities of all ages.
9.
Conclusion: Areas for future research
The development of research to enable
healthy ageing in persons with intellectual
disabilities represents a new and complex
area. Previously mentioned is the need to
provide evidence-based practice standards to
enhance health status, longevity, functional
capability, and quality of life. Other high
priority research areas include:
•The acquisition of additional clinical and
epidemiological knowledge regarding specific
syndromes, with linkages to basic science
research in biomolecular genetics and
metabolism.
•The development of adapted diagnostic and
therapeutic methods for people who have
difficulties
with
cooperation
or
communication.
•The development and evaluation of
interdisciplinary interventions for complicated
conditions (e.g. sensory impairment,
dysphagia, communication, and functional
decline).
WHO/MSD/HPS/MDP/OO.5
Page 12
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
•The development of clinimetric measures in
a number of areas -functional capability,
quality of life, mental health, pain assessment,
and clinical diagnosis- that are sensitive and
specific, easy to administer, and applicable to
persons with a wide range of mental and
physical capabilities.
•The evaluation of clinical guidelinesincluding referral protocols- to support
community-based primary care physicians,
within specific health care systems, to care for
people with intellectual disabilities.
•The evaluation of the applicability of a new
discipline of lifespan developmental medicine
to lead in interdisciplinary care, health care
education, service delivery, and research for
people with intellectual disabilities.
• The development of the knowledge base
regarding the health status and needs of
people with intellectual disabilities living in
less developed countries.
References
Acccardo PJ & Capute, A J
(1990). Mental
retardation. In: AJ Capute, & PJ Accardo, (Eds.)
Developmental Disabilities in Infancy and Childhood,
pp. 431-440, Baltimore: Paul H. Brooks.
Ager J & Littler L (1998). Sexual health for people
with learning disabilities. Nursing Standard 13, 34-9.
Aldencamp AP (1997). Effect of seizures and
epileptiform discharges
on cognitivefunction.
Epilepsia, 38, S52-5.
Anderson DJ (1993). Health issues. In: E. Sutton, AR
Factor, BA Hawkins, T Heller & GB Seltzer (Eds.)
Older Adults with Developmental Disabilities:
Optimizing Choice and Change, pp. 23-60, Baltimore:
Paul H Brooks.
Arvedson J et al (1994). Silent aspiration prominent in
children with dysphagia. Internal Journal Pediatr
Otorhinolaryngol, 28, 173-81.
Beange H, McElduff A & Baker W (1995) Medical
disorders of adults with mental retardation: a
population study. American Journal Mental
Retardation, 99, 595-604.
Bohmer CJM, Niezen-de Boer MC, Klinkenberg-Knol
EC et al. (1996). The prevalence of gastroesophageal
reflux and reflux esophagitis in severely mentally
handicapped. Gastroenterology, 110, A66.
Bohmer CJM, Klinkenberg-Knol EC, Niezen-de Boer
MC & Meuwissen SGM (1997). The age-related
incidences of oesophageal carcinoma in intellectually
disabled individuals in institutes in the Netherlands.
European Journal Gastroenterol, 9, 589-92.
Bohmer JJM, Niezen-de Boer MC, Klinkenberg-Knol
EC et al (1997). Gastro-oesophageal reflux disease in
intellectually disabled individuals: leads for diagnosis
and the effect of omeprazole therapy. American
Journal Gastroenterol, 92, 1475-9.
Bohmer CJM, Klinkenberg-Knol EC, Kuipers EJ et al
(1997). The prevalence of Helicobaster pylori infection
among inhabitants and healthy employees of institutes
for the intellectually disabled. American Journal
Gastroenterol, 92, 1000-4.
Boone TO (1998). The bladder and genitourinary tract
in the cerebral palsies. In G Miller & GD Clark (Eds.)
The Cerebral Palsies: Causes, Consequences and
Management, pp. 299-307, Boston: ButterworthHeinemann.
Boyle CA, Decoufle P & Holmgreen P (1994).
Contribution of developmental disabilities to childhood
mortality in the United States: a multiple cause of death
analysis. Pediatric & Perinatal Epidemiology, 8,41122.
Braddock D, Hemp R, Parish S & Westrich J (1998).
The State ofthe States in Developmental Disabilities 5'1'
Edition. Washington DC: American Association on
Mental Retardation.
Branford, D, Bhaumik S, Duncan F & Collacott RA
(1998). A follow-up study of adults with learning
disabilities and epilepsy. Seizure, 7, 469-72.
Brodtkorb E (1994). The diversity of epilepsy in adults
with severe developmental disabilities: age of onset
and other prognostic factors. Seizure, 3, 277-85.
Bromley J, Emerson E & Caine A (1998). The
development of a self-report measure to assess the
location and intensity of pain in people with
intellectual disabilities. Journal of Intellect Disability
Research, 42, 72-80.
Brunner R & Doderlein L (1996). Pathological
fractures in patients with cerebral palsy. Journal of
Pediatric Orthopedics, 5, 223-4.
Buchanan LH (1990). Early onset of presbyacusis in
Down’s syndrome. Scandin Audiology, 19, 103-10.
Burt DB, Loveland KA, Chen Y, Chuang A, Lewis KR
& Cherry L. (1995). Aging in adults with Down
syndrome: report from a longitudinal study. American
Journal on Mental Retardation, 100, 262-70.
Burt DB, Loveland KA, Primeaux-Hart S, Chen YW,
Phillips, NB, Cleveland, LA, Lewis, KR, Lesser J &
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
Cummings E (1998). Dementia in adults with Down
syndrome: diagnostic challenges. American Journal on
Mental Retardation, 103, 130-45.
Burtner AP, Wakham MD, McNeal DR & Garvey TP
.
(1995)
Tobacco and the institutionalized mentally
retarded: usage choices and ethical considerations.
Special Care in Dentistry, 15, 56-60.
Cambridge P (1996). Men with learning disabilities
who have sex with men in public places: mapping the
needs of services and users in south east London.
Journal ofIntellect Disability Research, 40, 241-251.
Carlsen WR, Galluzzi KE, Forman LF & Cavalieri TA
.
(1994)
Comprehensive
geriatric
assessment:
applications for community-residing, elderly people
with mental retardation/developmental disabilities.
Mental Retardation, 32, 334-40.
Cathels BA & Reddihough DS (1993). The health care
of young adults with cerebral palsy. The Medical
Journal ofAustralia, 15,444-46.
Center J, Beange H & McElduff A (1998). People with
mental retardation have an increased incidence of
osteoporosis: a population study. American Journal on
Mental Retardation 103,19-28.
Chicoine B, McGuire D & Rubin SS (1999). Specialty
Clinic Perspectives. In: MP Janicki & AJ Dalton (Eds.)
Dementia, Aging and Intellectual Disabilities: A
Handbook, pp.278-93, Castletown NY: Hamilton
Printing.
Christian L & Poling A (1997). Drug abuse in persons
with mental retardation: a review. American Journal on
Mental Retardation, 102,126-136.
Cohen WI (1996). Health care guidelines for
individuals with Down syndrome (Down syndrome
preventative medical checklist). Down Syndrome
Quarterly, 1, 1-10.
Conway GS, Payne NN, Webb J, Murray A & Jacobs
PA (1998). Fragile X premutation screening in women
with premature ovarian failure. Human Reproduction,
13, 1184-87.
Cooke LB (1997). Cancer and learning disability.
Journal ofIntellect Disability Research 41,312-6.
Cooper SA (1998). Clinical study of the effects of age
on the physical health of adults with mental
retardation. American Journal on Mental Retardation
106, 582-89.
Cooper, SA (1999). The relationship between
psychiatric and physical health in elderly people with
intellectual disability. Journal of Intellect Disability
Research 43, 54-60.
Couriel JM et al., (1993). Assessment of feeding
problems in neurodevelopmental handicap: a team
approach. Archives of Diseases of Childhood, 69, 60913.
Coulter DL (1997). Comprehensive management of
epilepsy in persons with mental retardation. Epilepsia,
WHO/MSD/HPS/MDP/OO.5
Page 13
38, S24-31.
Cramp ME, Grundy HC, Perinpanayagam RM &
Bamado DE (1996). Seroprevalence of hepatitis B and
C virus in two institutions caring for mentally
handicapped adults. Journal of Royal Society of
Medicine, 89,401-2.
Crocker AC & Yankauer A (1987). Basic issues (in
providing community-based health care). Mental
Retardation, 25, 227-32.
Davids JR, Hagerman RJ & Eilert RE (1990).
Orthopedic aspects of fragile-X syndrome. Journal of
Bone & Joint Surgery, 72, 889-96.
Day KA (1987). The elderly mentally handicapped in
hospital: a clinical study. Journal ofMental Deficiency
Research, 31, 131-46.
Desai KB, Ribbans WJ & Taylor GJ (1996). Incidence
of five common fracture types in an institutional
epileptic population. Injury, 27, 97-100.
Devenny DA, Silverman WP, Hill AL, Jenkins E,
Sersen EA & Wisniewski KE (1996). Normal ageing
in adults with Down’s syndrome: a longitudinal study.
Journal Intellect Disability Research, 40, 208-21.
Dinani S & Carpenter S (1990). Downs syndrome and
thyroid disorder. Journal of Mental Deficiency
Research 34, 187-93.
Dulac O & N’Guyen T (1993). The Lennox-Gastaut
syndrome. Epilepsia, 34, S7-17.
Editorial (1990). Growth and nutrition in children with
cerebral palsy. Lancet, 1253-4.
Editorial (1998). A position paper from the Academy
of Dentistry for Persons with Disabilities. Preservation
of quality oral health services for people with
developmental disabilities. Special Care in Dentistry,
18, 180-2.
Erkkila H, Lindberg L & Kallio AK
(1996).
Strabismus in children with cerebral palsy. Acta
Opththal Scandinavica, 74, 636-8.
Evenhuis HM (1990).The natural history of dementia
in Down’s syndrome. Archives of Neurology, 47, 2637.
Evenhuis HM, Zanten GA van, Brocaar MP &
Roerdinkholder WHM (1992). Hearing loss in middle
age persons with Down syndrome. American Journal
Mental Retardation, 97, 7-56.
Evenhuis HM (1995). Medical aspects of ageing in a
population with intellectual disability: I. Visual
impairment. Journal Intellect Disability Research, 39,
19-26.
Evenhuis HM (1995). Medical aspects of ageing in a
population with intellectual disability: II. Hearing
impairment. Journal Intellect Disability Research, 39,
27-33.
Evenhuis HM (1997). Medical aspects of ageing in a
population with intellectual disability: III. Mobility,
internal conditions and cancer. Journal Intellect
WHO/MSD/HPS/MDP/OO.5
Page 14
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
Disability Research, 41,8-18.
Evenhuis HM, Oostindier MJ, Steffelaar JW &
Coebergh JWW (1996). Incidentie van kanker bij
mensen met een verstandelijke handicap; mogelijk
verhoogd risico op slokdarmkanker (Cancer incidence
in people with intellectual disability: increased risk of
oesophageal cancer?). Ned Tijdschr Geneeskd, 140,
2083-6.
Evenhuis HM, (1997). The natural history of dementia
in ageing people with intellectual disability. Journal of
Intellectual Disabilty Research, 41, 92-6.
Evenhuis HM, Mui M, Lemaire EKG & de Wijs JPM
(1997). Diagnosis of sensory impairment in people
with intellectual disability in general practice. Journal
ofIntellectual Disability Research, 41, 22-9.
Evenhuis HM & Nagtzaam LMD (Eds.), (1998). Early
identification of hearing and visual impairment in
children and adults with an intellectual disability.
IASSID International Consensus Statement. SIRG
Health Issues.
Evenhuis HM (1999). Associated medical aspects. In:
MP Janicki & AJ Dalton (Eds.), Dementia, Aging and
Intellectual Disabilities: A Handbook, pp. 103-118,
Philadelphia: Brunner-Mazel.
Eyman RK, Grossman HJ, Chaney RH & Call TL
(1990). The life expectancy of profoundly handicapped
people with mental retardation. New England Journal
ofMedicine, 323, 584-9.
Forsgren L, Edvinsson SO, Nystrom L & Blomquist
HK (1996). Influence of epilepsy on mortality in
mental retardation: an epidemiologic study. Epilepsia,
31,956-63.
Fujiura GT, Fitzsimmons N, Marks, B & Chicoine, B
(1997). Predictors of BMI among adults with Down
syndrome: the social context of health promotion.
Research in Dev Disabilities, 18, 261-274.
Golden E & Hatcher J (1997). Nutritional knowledge
and obesity of adults in community residences. Mental
Retardation, 35, 177-84.
Goulden KJ, Shinnar S, Koller H, Katz M &
Richardson SA (1991). Epilepsy in children with
mental retardation: a cohort study. Epilepsia, 32, 6907.
Gowdy WC, Zarfas DE & Phipps S (1987). Audit of
psychoactive drug prescriptions in group homes.
Mental Retardation, 25, 331-34.
Greenswag LR (1987). Adults with Prader-Willi
syndrome: a survey of 232 cases. Developmental
Medicine & Child Neurolology, 29, 145-52.
Haag H, Ruther E & Hippius H (1992). Tardive
Dyskinesia. WHO Expert Series on Biological
Psychiatry, Seattle: Hogrefe & Huber.
Hand, JE (1994). Report of a national survey of older
people with lifelong intellectual handicap in New
Zealand. Journal of Intellectual Disability Research,
38, 275-87.
Harada T, Ebara S, Anwar MM, Okawa a, Kajiura I,
Hiroshima K & Ono K (1996). The cervical spine in
athetoid cerebral palsy. A radiologic study of 180
cases. Journal ofBone and Joint Surgery, 78, 613-19.
Hayashi J, Kashiwagi S, Noguchi A, Nkashima K,
Ikematsu H, Kajiyama, W & Nomura H (1989).
Hepatitis b infection among mentally retarded patients
in institutions, Okinawa, Japan. Fukuoka Igaku Zasshi,
80,436-40.
Helm, D., Crocker, A. & Rubin, L. (1999). A case
study in international cooperation for children with
developmental disabilities: The Republic of Armenia.
Abstract ofProceedings: AAMR 123rd Annual Meeting.
May 1999.
Henderson CM, Janicki MP, Ladrigan P & Davidson
PH (In press). Comprehensive adult and geriatric
assessment for persons with ID. Community Supports
for Older Adults with Lifelong Disabilities, Baltimore:
Paul H. Brookes.
Hymowitz N, Jaffe FE, Gupta A & Feuerman M
(1997). Cigarette smoking among patients with mental
retardation and mental illness. Psychiatric Services, 48,
100-2.
Jacobson L (1988). Ophthalmology in mentally
retarded adults. A clinical survey. Acta Ophthalmol,
66:457-62.
Jancar J (1990). Cancer and mental handicap. A further
study (1976-85). British Journal Psychiatry, 156, 5313.
Jancar J & Jancar MP (1998). Age-related fractures in
people with intellectual disability and epilepsy. Journal
of Intellectyual Disability Research, 42, 429-33.
Jancar J & Speller CJ (1994). Fatal intestinal
obstruction in the mentally handicapped. Journal of
Intellect Disability Research, 38, 413-22.
Janicki, MP & Jacobson JW. (1985). Fire safety,
self-preservation, and community residences for
persons with mental retardation. Fire Journal, 79(4),
38-41, 82-86.
Janicki MP, Dalton AJ, Henderson CM & Davidson
PW (1999). Mortality and morbidity among older
adults with intellectual disability: health services
considerations. Disability and Rehabilitation, 21, 284294
Jones RG & Kerr MP (1997). A randomized control
trial of an opportunistic screening tool in primary care
for people with intellectual disability. Journal of
Intellectual Disability Research, 41, 409-15.
Kapell D, Nightengale B, Rodriguez, A, Lee, JH,
Zigman WB & Schupf N (1998).Prevalence of chronic
medical conditions in adults with mental retardation:
comparison with the general population. Mental
Retardation, 36, 269-79.
Kearny GM, Krishnan VHR & Londhe RL. (1993).
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
Characteristics of elderly people with a mental
handicap living in a mental handicap hospital: a
descriptive study. British Journal of Development
Disability.! 6, 31-50.
Kennedy M, McCombie L, Dawes P, McConnell KN
& Dunnigan MG (1997). Nutritional support for
patients with intellectual disability and nutrition and
dysphagia disorders in community care. Journal of
Intellectual Disability Research, 41,430-36.
Lai F & Williams RS (1989). A prospective study of
Alzheimer disease in Down syndrome. Archives of
Neurology, 46, 849-53.
LaChapelle DL, Hadjistavropoulos T & Craig K (In
press). Pain measurement in persons with intellectual
disabilities. The Clinical Journal ofPain.
Lamb AS & Johnson WM (1987). Premature coronary
artery atherosclerosis in a patient with Prader-Willi
syndrome. American Journal Medical Genetics, 28,
873-80.
Lennox, N (Ed.), (1999). Management Guidelines.
People with Developmental and intellectual
Disabilities, Melbourne: Therapeutic Guidelines.
Lemaitre N, Sougakoff W, Coetmeur D, Vaucel J,
Jarlier V & Grosset J (1996). Nosocomial transmission
of tuberculosis among mentally-handicapped patients
in a long-term care facility. Tubercle & Lung Disease,
77,531-6.
Linaker OM & Nottesstad JA (1998). Health and health
services for the mentally retarded before and after the
reform. Tidsskr Nor Laegeforening, 188 (3), 357-61.
Loehr, JP, Synhorst, DP, Wolfe, RR & Hagerman, RJ
(1986). Aortic root dilatation and mitral valve prolapse
in the fragile X syndrome. American Journal of
Medical Genetics, 23, 189-94.
Lowes LP & Greis SM (1998). Role of occupational
therapy, physical therapy, and speech and language
therapy in the lives of children with cerebral palsy. In:
G Miller & GD Clark (Eds.) The Cerebral Palsies:
Causes, Consequences and Management, pp. 333-46,
Boston: Butterworth-Heinemann.
Lucchese C & Checchi L (1998). The oral status in
mentally retarded institutionalized patients. Minerva
Stomatologica 47 (10), 499-502.
Lunsky, Y (1999). Women with developmental
disabilities: collaborative strategies for providing GYN
care. Abstract of Proceedings: AAMR 123rd Annual
Meeting, May 1999.
Maaskant MA & Haveman MJ (1989). Aging
residents in sheltered homes for persons with mental
handicap in the Netherlands. Australia & New Zealand
Journal Development Disabilities, 15,219-30.
Maaskant MA & Haveman MJ (1990). Elderly
residents in Dutch institutions for people with mental
handicap. Journal Mental Deficiency Research, 34,
475-82.
WHO/MSD/HPS/MDP/00.5
Page 15
MacEachron AE & Krauss MW (1985). Self
preservation ability and residential fire emergencies:
replication and criterion-validation study. American
Journal ofMental Deficiency, 90, 107-10.
Maino DM, Wesson M, Schlange D, Cibis G & Maino
JH (1991). Optometric findings in the fragile X
syndrome. Optometry and Visual Science, 68, 634-40.
Marino, B & Pueschel, SM (Eds.), (1996). Heart
Disease in Persons with Down Syndrome. Baltimore:
Paul H. Brooks.
Martin DM, Roy A & Wells MB (1997). Health gain
through health checks: improving access to primary
health care for people with intellectual disability.
Journal ofIntellect Disability Research, 41, 401-408.
McRae D (1997). Health care for women with learning
disabilities. Nursing Times, 93, 58-9.
McVicker RW, Shanks OEO & McClelland RJ (1994).
Prevalence and associated features of epilepsy in adults
with Down’s syndrome. British Journal Psychiatty,
164, 528-32.
Mikawa Y, Watanabe R & Shikata J (1997). Cervical
myelo-radiculopathy in athetoid cerebral palsy.
Archives ofOrthopedics & Trauma Surgery, 116, 11618.
Minihan PH & Dean DH (1990). Meeting the needs for
health services of persons with mental retardation
living in the community. American Journal of Public
Health 80, 1043-48.
Mirrett PL et al (1994). Videofluoroscopic assessment
of dysphagia in children with severe spastic cerebral
palsy. Dysphagia, 9:174-9.
Moore D & Posgrove L (1991). Disabilities,
developmental handicaps, and substance abuse: a
review. Inti Journal of the Addictions 26, 109-23
Morbidity and Mortality Weekly Report (1998). State
specific rates of mental retardation —United States,
1993.45,61-65.
Murdoch JC, Ratcliffe WA, McLarty JC, Rodger JC &
Ratcliffe JG, (1977). Thyroid function in adults with
Down syndrome. Journal Clin Endocrin Metabolism,
44, 153-8.
Murray A, Webb J, Grimley S, Conway G. & Jacobs P.
(1998). Studies of FRAXA and FRAXE in women
with premature ovarian failure. Journal of Medical
Genetics, 35, 637-40.
Nelson RP & Crocker AC (1978). The medical care of
mentally retarded persons in public residential
facilities. New England Journal of Medicine, 299,
1039-44.
Nicolaci AB & Tesini DA (1982). Improvement in the
oral hygeine of institutionalized mentally retarded
individuals through training of direct care staff: a
longitudinal study. Special Care Dentistry, 2,217-21.
O’Brien KF, Tate K & Zaharia ES (1991). Mortality in
a large southeastern facility for persons with mental
WHO/MSD/HPS/MDP/OO.5
Page 16
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
retardation. American Journal on Mental Retardation,
95, 397-403.
O’Brien KF & Zaharia ES (1998). Recent mortality
patterns in California. Mental Retardation, 36, 372-79.
O’Donnell J (1994). Dental care for special needs
individuals: a new barrier to access. Special Care in
Dentistry, 14, 178-79.
Ohtsuka Y (1998). West syndrome and its related
epilepttic syndromes. Epilepsia, 39, 30-7.
Oka E, Sanada S, Asano T & Ishida T (1997). Mental
deterioration in childhood epilepsy. Acta Medica
Okayama, 51, 173-8.
Pack RP, Wallander JL & Brown, D (1998). Health
risk behaviors of African American adolescents with
mild mental retardation: prevalence depends on
measurement method. American Journal on Mental
Retardation, 102, 409-420.
Phillips J (1998). Complications of anticonvulsant
drugs and ketogenic diet. In: J Biller (Ed.) Iatrogenic
Neurology, pp. 397-414), Boston: ButterworthHeinemann.
Piachuad, J, Rohde J & Pasupathy A (1998). Health
screening for people with Down syndrome. Journal of
Intellect Disability Research, 45, 341-45.
Pires da Cunha R & Belmiro de Castro Moreira D
.
(1996)
Ocular findings in Down’s syndrome.
American Journal Ophthalmol, 122, 236-44.
Pittetti KH, Rimmer JH, & Femhall B (1993). Physical
fitness in adults with mental retardation. An overview
of the current research and future directions. Sports
Medicine, 16, 25-56.
Prasher VP & Chung MC (1996). Causes of agerelated decline in adaptive behavior of adults with
Down syndrome: differential diagnosis of dementia.
American Journal on Mental Retardation, 101,175-83.
Pueschel SM & Pueschel JK (Eds.) (1992). Biomedical
Concerns in Persons with Down Syndrome, Baltimore:
Paul H. Brooks.
Reilly S & Skuse D (1992). Characteristics and
management of feeding problems of young children
with cerebral palsy. Devel Med Child Neurol, 34, 37988.
Renshaw TS, Green NE, Griffin PP & Root L (1996).
Cerebral palsy: orthopedic management. Instructional
Course Lectures, 45, 475-90.
Ribacoba MR, Salas PJ, Fernandez TJ & Moral RM
.
(1995)
Fragile X syndrome and epilepsy. Neurologia,
10,70-5.
Rimmer JH, Braddock D & Fujiara G (1994).
Cardiovascular risk factors in adults with mental
retardation. American Journal on Mental Retardation,
98,510-18.
Rimmer JH, Braddock D & Marks B (1995). Health
characteristics and behaviors of adults with mental
retardation residing in three living arrangements.
Research in Developmental Disabilities, 16, 489-99.
Roberts IM, Curtis RL & Madara JL. (1986).
Gastroesophageal reflux and Barrett’s esophagus in
developmentally disabled patients. American Journal
Gastroenterol, 81, 519-23.
Rogers B, Stratton P, Msall M, Champlain M, Koerner
P & Piazza J (1994). Long term morbidity and
management strategies of tracheal aspiration in adults
with severe developmental disabilities. American
Journal on Mental Retardation, 98, 490-98.
Roizen NJ, Wolters C, Nicol T, Biondis TA (1993).
Hearing loss in children with Down syndrome. Journal
Pediatrics, 123, S9-12.
Rosen MG & Dickinson JC (1992). The incidence of
cerebral palsy. American Journal of Obstetrics &
Gynecology, 167,417-23.
Russman
BS
&
Romness
M
(1998).
Neurorehabilitation for the child with cerebral palsy.
In: G Miher & GD Clark (Eds.) The Cerebral Palsies:
Causes, Consequences, and Management, pp. 321-32,
Boston: Butterworth-Heinemann
Saito N, Ebara S, Ohotsuka K, Kumeta H & Takaoka
K (1998). Natural history of scoliosis in spastic
cerebral palsy. Lancet, 351, 1687-92.
Sare Z, Ruvalcaba RHA & Kelley V (1978).
Prevalence of thyroid disorder in Down syndrome.
Clinical Genetics, 14, 154-8.
Schenk-Rootlieb AJ, Nieuwenhuizen O van, Graf Y
van der, Wittebol-Post D & Willemse J (1992). The
prevalence of cerebral visual disturbance in children
with cerebral palsy. Dev Medicine and Child
Neurology, 34, 473-80.
Schrojenstein Lantman-de Valk HM van, Metsemakers
JF, Soomers-Turlings MJ, Haveman MJ & Crebolder
HF (). People with intellectual disability in general
practice: case definition and case finding. Journal
Intellect Disability Research 41, 373-9.
Schrojenstein Lantman-de Valk HMJ van, Haveman
MJ, Maaskant MA & Kessells AG (1994). The need
for assessment of sensory functioning in ageing people
with mental handicap. Journal ofIntellectual Disability
Research, 38, 289-98.
Schrojenstein Lantman-de Valk HMJ van, Akker M
van den, Maaskant MA, Haveman MJ, Urlings HFJ,
Kessels AGH et al (1997). Prevalence and incidence of
health problems in people with intellectual disability.
Journal ofIntellect Disability Research, 41, 42-51.
Scott A, Marsh L & Stokes ML (1998). A survey of
oral health in a population of adults with
developmental disability: comparison with a national
oral health survey of the general population. Australian
Dental Journal, 43, 257-61.
Seltzer G & Luchterhand C (1994). Health and wellbeing of older persons with developmental disabilities:
a clinical review. In MM Seltzer, MW Krauss & MP
WHO/MSD/HPS/MDP/OO.5
Page 16
Healthy Ageing - Adults with Intellectual Disabilities: Physical Heaith Issues
retardation. American Journal on Mental Retardation,
95, 397-403.
O’Brien KF & Zaharia ES (1998). Recent mortality
patterns in California. Mental Retardation, 36, 372-79.
O’Donnell J (1994). Dental care for special needs
individuals: a new barrier to access. Special Care in
Dentistry, 14, 178-79.
Ohtsuka Y (1998). West syndrome and its related
epilepttic syndromes. Epilepsia, 39, 30-7.
Oka E, Sanada S, Asano T & Ishida T (1997). Mental
deterioration in childhood epilepsy. Acta Medica
Okayama, 51, 173-8.
Pack RP, Wallander JL & Brown, D (1998). Health
risk behaviors of African American adolescents with
mild mental retardation: prevalence depends on
measurement method. American Journal on Mental
Retardation, 102, 409-420.
Phillips J (1998). Complications of anticonvulsant
drugs and ketogenic diet. In: J Biller (Ed.) Iatrogenic
Neurology, pp. 397-414), Boston: ButterworthHeinemann.
Piachuad, J, Rohde J & Pasupathy A (1998). Health
screening for people with Down syndrome. Journal of
Intellect Disability Research, 45, 341-45.
Pires da Cunha R & Belmiro de Castro Moreira D
.
(1996)
Ocular findings in Down’s syndrome.
American Journal Ophthalmol, 122, 236-44.
Pittetti KH, Rimmer JH, & Femhall B (1993). Physical
fitness in adults with mental retardation. An overview
of the current research and future directions. Sports
Medicine, 16,25-56.
Prasher VP & Chung MC (1996). Causes of agerelated decline in adaptive behavior of adults with
Down syndrome: differential diagnosis of dementia.
American Journal on Mental Retardation, 101, 175-83.
Pueschel SM & Pueschel JK (Eds.) (1992). Biomedical
Concerns in Persons with Down Syndrome, Baltimore:
Paul H. Brooks.
Reilly S & Skuse D (1992). Characteristics and
management of feeding problems of young children
with cerebral palsy. Devel Med Child Neurol, 34, 37988.
Renshaw TS, Green NE, Griffin PP & Root L (1996).
Cerebral palsy: orthopedic management. Instructional
Course Lectures, 45, 475-90.
Ribacoba MR, Salas PJ, Fernandez TJ & Moral RM
(1995). Fragile X syndrome and epilepsy. Neurologia,
10,70-5.
Rimmer JH, Braddock D & Fujiara G (1994).
Cardiovascular risk factors in adults with mental
retardation. American Journal on Mental Retardation,
98,510-18.
Rimmer JH, Braddock D & Marks B (1995). Health
characteristics and behaviors of adults with mental
retardation residing in three living arrangements.
Research in Developmental Disabilities, 16, 489-99.
Roberts IM, Curtis RL & Madara JL. (1986).
Gastroesophageal reflux and Barrett’s esophagus in
developmentally disabled patients. American Journal
Gastroenterol, 81, 519-23.
Rogers B, Stratton P, Msall M, Champlain M, Koerner
P & Piazza J (1994). Long term morbidity and
management strategies of tracheal aspiration in adults
with severe developmental disabilities. American
Journal-on Mental Retardation, 98, 490-98.
Roizen NJ, Wolters C, Nicol T, Biondis TA (1993).
Hearing loss in children with Down syndrome. Journal
Pediatrics, 123, S9-12.
Rosen MG & Dickinson JC (1992). The incidence of
cerebral palsy. American Journal of Obstetrics &
Gynecology, 167,417-23.
Russman
BS
&
Romness
M
(1998).
Neurorehabilitation for the child with cerebral palsy.
In: G Miller & GD Clark (Eds.) The Cerebral Palsies:
Causes, Consequences, and Management, pp. 321-32,
Boston: Butterworth-Heinemann
Saito N, Ebara S, Ohotsuka K, Kumeta H & Takaoka
K (1998). Natural history of scoliosis in spastic
cerebral palsy. Lancet, 351, 1687-92.
Sare Z, Ruvalcaba RHA & Kelley V (1978).
Prevalence of thyroid disorder in Down syndrome.
Clinical Genetics, 14, 154-8.
Schenk-Rootlieb AJ, Nieuwenhuizen O van, Graf Y
van der, Wittebol-Post D & Willemse J (1992). The
prevalence of cerebral visual disturbance in children
with cerebral palsy. Dev Medicine and Child
Neurology, 34, 473-80.
Schrojenstein Lantman-de Valk HM van, Metsemakers
JF, Soomers-Turlings MJ, Haveman MJ & Crebolder
HF (). People with intellectual disability in general
practice: case definition and case finding. Journal
Intellect Disability Research 41, 373-9.
Schrojenstein Lantman-de Valk HMJ van, Haveman
MJ, Maaskant MA & Kessells AG (1994). The need
for assessment of sensory functioning in ageing people
with mental handicap. Journal ofIntellectual Disability
Research, 38, 289-98.
Schrojenstein Lantman-de Valk HMJ van, Akker M
van den, Maaskant MA, Haveman MJ, Urlings HFJ,
Kessels AGH et al (1997). Prevalence and incidence of
health problems in people with intellectual disability.
Journal ofIntellect Disability Research, 41, 42-51.
Scott A, Marsh L & Stokes ML (1998). A survey of
oral health in a population of adults with
developmental disability: comparison with a national
oral health survey of the general population. Australian
Dental Journal, 43, 257-61.
Seltzer G & Luchterhand C (1994). Health and wellbeing of older persons with developmental disabilities:
a clinical review. In MM Seltzer, MW Krauss & MP
Healthy Ageing - Adults with Intellectual Disabilities: Physical Health Issues
Janicki (Eds.) Life Course Perspectives on Adulthood
and Old Age, pp. 109-141, Washington DC: American
Association on Mental Retardation.
Shaw L, Weatherill S & Smith A (1998). Tooth wear
in children: an investigation of etiologic factors in
children with cerebral palsy and gastroesophageal
reflux. ASDC Journal of Dentistry for Children 65
484-6.
Song F, Freemantle N, Selicowitz M (1993). A five
year longitudinal study of thyroid function in children
with Down syndrome. Developmental and Child
Neurology, 35, 396-401.
Sreeram N, Wren C, Bhate M, Robertson P & Hunter
S (1989). Cardiac abnormalities in the fragile X
syndrome. British Heart Journal, 61, 289-91.
Steffenburg U, Hagberg G, Viggedal G & Kyllerman
M (1995). Active epilepsy in mentally retarded
children.
1.
Prevalence
and
additional
neuroimpairments. Acta Pediatrica, 84, 1147-52.
Stehr-Green P, Wilson N, Miller J & Lawther A
(1991). Risk factors for hepatitis B at a residential
institution for intellectually handicapped persons. NZ
Medical Journal, 105,514-6.
Strauss D & Kastner T (1996). Comparative mortality
of people with developmental disabilities in institutions
and the community. American Journal on Mental
Retardation, 101, 26-40.
Strauss D, Anderson TW, Shavelle R, Sheridan F &
Trenkle S (1998). Causes of death of persons with
developmental disabilities: comparison of institutional
and community residents. Mental Retardation, 36,38691.
Strauss D & Shavelie R (1998). Life expectancy of
adults with cerebral palsy. Dev Medicine & Child
Neurology, 40, 369-75.
Strauss DI, Shavelie RM & Anderson TW (1998). Life
expectancy of children with cerebral palsy. Pediatric
Neurology, 19,243-44.
Strauss DJ, Shavelle RM, Baumeister AA & Anderson
TW (1998). Mortality in persons with developmental
disability after transfer to community care. American
Journal on Mental retardation, 102, 569-581.
Strome SE & Strome M (1992). Down syndrome: an
otolaryngologic perspective. Journal Otolaryngol, 21,
394-7.
Thorpe L (1999). Psychiatric disorders. In: MP Janicki
MP & AJ Dalton AJ (Eds.) Dementia, Aging and
Intellectual Disabilities: A Handbook, pp. 217-230,
Philadelphia: Brunner-Mazel.
Tracy J & Hosken R (1997). The importance of
smoking cessation and preventative health strategies
for people with intellectual disability. Journal of
Intellect Disability Research, 41,416-21.
Tu JB (1979). A survey of psychotropic medication in
mental retardation facilities. Journal of Clinical
WHO/MSD/HPS/MDP/00.5
Page 17
Psychiatry, 40, 125-128.
Turner S & Moss S (1996). The health needs of adults
with learning disabilities and the Health of the Nation
strategy. Journal of Intellect Disability Research, 40,
438-450.
Turk MA, Geremski CA, Rosenbaum PF & Weber RJ
.
(1997)
The health status of women with cerebral
palsy. Archives ofPhysical Medicine & Rehabilitation,
78,310-17.
Udani VP, Dhamidharka V, Nair A & Oka M (1993).
Difficult to control epilepsy in childhood- a long term
study of 123 cases. Indian Pediatrics, 30, 199-206.
Wagemans AMA, Fiolet JFBM, Linden ES van der,
Menheere PPCA (1998). Osteoporosis and intellectual
disability: is there any relation? Journal of Intellect
Disability Research, 42, 370-4.
Walsh KK, Kastner T & Criscione T (1997).
Characteristics of hospitalizations for people with
developmental disabilities: utilization, costs, and
impact of care coordination. American Journal on
Mental Retardation, 100, 505-20.'
Warberg M & Rattleff J (1992). Treatable visual
impairment. A study of 778 consecutive patients with
mental handicap placed in sheltered workshops. In: J
Roosendahl (Ed.) Mental Retardation and Medical
Care, pp. 350-56, Zeist: Uitgeverij Kerkebosch.
Warburg M (1994). Visual impairment among people
with developmental delay. Journal Intellect Disability
Research, 38, 423-32.
Westmeyer J, Phaobtong T & Neider J (1988).
Substance use and abuse among mentally retarded
persons: comparison of patients and a survey
population. American Journal of Drug & Alcohol
Abuse, 14, 109-23.
Wilson DN & Haire A (1990). Health care screening
for people with mental handicap living in the
community. British Medical Journal, 301, 1379-81.
Wilson D & Haire A. (1992). Health care screening for
people with mental handicap in the United Kingdom.
In: J Roosendahl (Ed.) Mental Retardation and
Medical Care, pp. 58-67, Zeist: Uitgeverij Kerkebosch.
Wisniewski KE, Dalton AJ, Crapper-McLachlan DR,
Wen GY, Wisniewski HM (1985), Alzheimer’s disease
in Down’s syndrome: clinicopathologic studies.
Neurology, 35, 957-61.
Wojcieszek J (1998). Drug-induced movement
disorders. In: J Biller (Ed.) Iatrogenic Neurology, pp.
215-230, Boston: Butterworth-Heinemann.
Zigman WB, Schupf N, Sersen E, Silverman W
(1995). Prevalence of dementia in adults with and
without Down syndrome. American Journal on Mental
Retardation, 100,403-12.
Recommendation 1
To develop a worldwide perspective on healthy
ageing and intellectual disabilities through
affiliations between interested parties in
industrialized and developing countries that
promote advocacy, trans-cultural and costeffective clinical practices, research, and the
exchange of information and expertise.
Recommendation 2
Health care providers caring for people with
intellectual disabilities of all ages should adopt a
lifespan approach that recognizes the progression
or consequences of specific diseases and
therapeutic interventions.
Recommendation 3
Children presenting with intellectual disabilities
should have thorough diagnostic searches for
etiologies and syndromes to optimize their
current and future health care.
Recommendation 4
Persons presenting with an intellectual disability
should have expert care to identify and treat
associated developmental disabilities such as
cerebral palsy, epilepsy, autism, and disorders of
vision.
Recommendation 5
People with intellectual disabilities with current
or previous histories of life in large institutions
should be evaluated for evidence of infectious
diseases such as tuberculosis, hepatitis B, and
Helicobacter pylori.
Recommendation 6
People with intellectual disabilities, and their
carers, need to receive appropriate and ongoing
education regarding healthy living practices in
areas such as nutrition, exercise, oral hygeine,
safety practices, and the avoidance of risky
behaviors such as substance abuse and
unprotected or multiple partner sexual activity.
Recommendation 7
People with intellectual disabilities should
receive the same array of lifespan preventative
health practices as those offered to the general
population.
Recommendation 8
Health care providers serving older adults with
intellectual disabilities should recognize that
adult and older-age onset medical conditions are
common in this population, and may require a
high index of suspicion for clinical diagnosis.
Recommendation 9
Functional decline in older adults with
intellectual disabilities warrants careful medical
evaluation; undiagnosed mental health and
medical
conditions
can
have
atypical
presentations in people with limited language
capabilities. Regular screening for visual and
hearing impairments should be implemented for
people with intellectual disabilities during the
childhood and late-adulthood years.
Recommendation 10
Health care providers and policy makers need to
eliminate attitudinal, architectural and health care
reimbursement barriers that interfere with the
provision of high quality health services for
people with intellectual disabilities.
Recommendation 11
Carers need training in assessing and
communicating the basic health status of the
adults with intellectual disabilities.
Recommendation 12
Health care case management should be available
to adults with intellectual disabilities who have
complex needs.
Recommendation 13
An interdisciplinary approach is required for a
variety of clinical issues involving people with
intellectual disabilities.
Recommendation 14
Health care systems need to provide educational
and clinical practice supports for primary care
physicians caring for people with intellectual
disabilities.
Recommendation 15
The development of the discipline of lifespan
developmental medicine is necessary to provide
medical education, practice standards, clinical
expertise, research, and professional leadership
regarding the special needs of people with
intellectual disabilities of all ages.
WHO/MSD/HPS/MDP/OO.6
English only
Distr.: General
Healthy Ageing
Adults with
Intellectual
Disabilities
Women's Health and
Related Issues
International Association
for the Scientific Study of
Intellectual Disabilities
WHO Global
Movement for
Active Ageing
Department of Mental Health
and Substance Dependence
World Health Organization
Healthy Ageing - Adults with Intellectual Disabilities
Women's Health and Related Issues
Authors
P.N. Walsh
T. Heller
N.
Schupf
H. van Schrojenstein Lantman-de Valk
This report has been prepared by the Aging Special Interest Research Group of the International
Association for the Scientific Study of Intellectual Disabilities (IASSID) in collaboration with
the Department of Mental Health and Substance Dependence and The Programme on Ageing and
Health, World Health Organization, Geneva and all rights are reserved by the above mentioned
organization. The document may, however, be freely reviewed, abstracted, reproduced or
translated in part, but not for sale or use in conjunction with commercial purposes. It may also
be reproduced in full by non-commercial entities for information or for educational purposes with
prior permission from WHO/IASSID. The document is likely to be available in other languages
also. For more information on this document, please visit the following websites:
http://www.iassid.wisc.edu/SIRGAID-Publications.htm and http://www.who.int/mental health,
or write to:
Department of Mental Health and
Substance Dependence
(attention: Dr S. Saxena)
World Health Organization
20 Avenue Appia
CH-1211 Geneva 27
IASSID AGING SIRG
Secretariat
c/o 31 Nottingham Way South
Clifton Park
New York 12065-1713
USA
or E-Mail: sirgaid@aol.com
Acknowledgments
Working Group Members: The Report was prepared by a core team composed of Tamar Heller (USA), Nicole
c upf (USA), Henny van Schrojenstein Lantman - de Valk (Netherlands), and Patricia Noonan Walsh (Ireland)
working in collaboration with the following colleagues: Kathie Bishop (USA), Nancy Breitenbach (France), Allison
Brown (USA), Janis Chadsey (USA), Orla Cummins (Ireland), Carol Gill (USA), Loretto Lambe (UK), Barbara
LeRoy (USA), Yona Lunsky (Canada), Michelle McCarthy (UK), Dawna Mughal (USA), Jenny Overeynder
(USA), Pat Reid (New Zealand), Heidi San Nicholas (Guam), Janene Suttie (Australia), and Kuo-yu Wang
(Taiwan). The authors gratefully thank Robert Cummins, Deakin University, Australia, for his careful reading of
an earlier version of this report and his very helpful comments; Marianne Vink for information communicated
personally; and all those contributors who held focus group meetings in a variety of nations (including Australia,
Canada, the United Kingdom, South Africa, and the United States) and who shared the results of these focus group
meetings with us. We are especially grateful to the participants in the Geneva Roundtable in April 1999 for their
advice and support.
This report was developed as a draft and circulated to both Health Issues and Aging SIRG working group members
and selected others for commentary and amendments. The amended document became part of the working drafts
circulated to delegates at the 10th International Roundtable on Ageing and Intellectual Disabilities in Geneva in
1999, and was discussed and amended further at this meeting. A set of summative broad goals was developed by
the group and appears in this paper, which itself became part of the comprehensive WHO document on ageing and
intellectual disability (WHO, 2000). The primary goal of this paper is to organize information .on women’s health
issues in older women with intellectual disabilities, and to present broad summative goals to direct further work in
this area.
Partial support for the preparation of this report and the 1999 10Ih International Roundtable on Aging and
Intellectual Disabilities was provided by grant 1R13 AG15754-01 from the National Institute on Aging (Bethesda,
Maryland, USA) to M. Janicki (PI).
Also acknowledged is active involvement of WHO, through its Department of Mental Health and Substance
Dependence (specially Dr Rex Billington and Dr S. Saxena), and The Programme on Ageing and Health in
preparing and printing this report.
Suggested Citation
Walsh, P.N., Heller, T., Schupf, N., & van Schrojenstein Lantman-de Valk, H. (2000). Healthy Ageing - Adults
with Intellectual Disabilities: Women's Health Issues. Geneva, Switzerland: World Health Organization.
Report Series
World Health Organization (2000). Healthy Ageing - Adults with Intellectual Disabilities: Summative Report.
Geneva: Switzerland: World Health Organization (WHO/MSD/HPS/MDP/OO.3).
Thorpe, L., Davidson, P., Janicki, M.P., & Working Group. (2000). Healthy Ageing - Adults with Intellectual
Disabilities: Biobehavioural Issues. Geneva, Switzerland: World Health Organization
(WHO/MSD/HPS/MDP/OO.4).
Evenhuis, H., Henderson, C.M., Beange, H., Lennox, N., Chicoine, B., & Working Group. (2000). Healthy
Ageing - Adults with Intellectual Disabilities: Physical Health Issues. Geneva, Switzerland: World Health
Organization (WHO/MSD/HPS/MDP/00.5).
Walsh P.N., Heller, T., Schupf, N., van Schrojenstein Lantman-de Valk, H., & Working Group. (2000).
Healthy Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues. Geneva,
Switzerland: World Health Organization (WHO/MSD/HPS/MDP/OO.6).
Hoeg J Lucchino, R., Wang, K., Janicki, M.P., & Working Group (2000). Healthy Ageing - Adults with
Intellectual Disabilities: Ageing & Social Policy. Geneva: Switzerland: World Health Organization
(WHO/MSD/HPS/MDP/OO.7).
Healthy Ageing . Adu.ts with mteHectu.1 Disabilities: Women’s Health and Related Issues
WHO/MSD/HPS/MDP/OO.6
Page 1
1-0 Background
1-1
This report is concerned with issues
which are important for the health of women
with
intellectual
and
developmental
disabilities as they grow older and age. The
specific focus on women's health is in no
manner meant to be dismissive or designed to
minimize concerns related to men’s health
issues. However, it is the position of the SIRG
on ageing that women's health issues have not
received appropriate and sufficient attention,
that women as they age are subject to sexrelated conditions and changes, and that in
many instances the interests and needs of
ageing women and women with disabilities
are overlooked or neglected. Thus, this report
is designed to explore factors related to well
being and quality of life for women, to
examine and define sex-linked differences in
their life experiences and opportunities and to
define their distinctive vulnerabilities including research on health status and access
to health care.
2.0 Women's Health - a Global Perspective
2.1
The human rights of women and girl
children are an integral part of universal
human rights, according to the UN Vienna
Declaration. Ensuring their full and equal
participation in all aspects of life in society,
without discrimination of any kind, is a
priority objective for the international
community. The United Nations Commission
on the Status of Women promotes the well
being and education of the girl child as a
priority for global action in its policy
documents (1998). Further, the UN Standard
Rules identify the availability of suitable
medical and health care as an essential
perquisite if people with disabilities are to
enjoy equal opportunities in the societies
where they live (UN 1994).
2.2
Regional policies have adopted human
rights as the basis for all actions related to the
lives of persons with disabilities. Social
policy within the European Union of 15
countries has replaced traditional care models
of disability with a rights-based model.
Human rights are expressed as equal
opportunities for all citizens, particularly
those with disabilities, to take part fully in all
aspects of everyday life in their own societies
(CEC 1996). A respect for human diversity
should thus inform all aspects of social
planning.
2.3.
The WHO - Global Strategy on the
promotion of women's health falls within this
rights-based framework: The right of all
women to the best attainable standard of
health - as well as their right of access to
adequate health services - has been a primary
consideration of the World Health
Organization (United Nations 1997b: 10)
2.4
There have been dramatic increases in
life expectancy during the 20th century, due
chiefly to tremendous advances in medicine,
public health, science and technology.
However, the quality of human life is as
important as its length - perhaps even more
important. Today, individuals are concerned
about their health expectancy - that is, the
years they can expect to live in good health
(WHO 1997). Inequalities exist, based on sex,
region and social status. The poorest, least
educated people live shorter lives with greater
ill-health. Globally, while life expectancy
increases, disability-free life expectancy seem
to be stabilizing.
2.5
Priority areas for international action
in health should be: a comprehensive chronic
disease control package incorporating
prevention, diagnosis; treatment and
rehabilitation and improved training of health
professionals; fuller application of existing
cost-effective methods of disease detection
and management, a global campaign to
encourage healthy lifestyles; research into
new drugs and vaccines and the genetic
determinants of chronic diseases; and
alleviation of pain, reduction of suffering and
provision of palliative care for those who
cannot be cured (WHO 1997:136).
WHO/MSD/HPS/MDP/OO.6
Page 2
.
....I mobilities: Women’s Health and Related Issues
Healthy Ageing - Adults with Intellectual Disabilities.
3.0 Lifespan Perspective: Ageing and
Health
Recently, more attention has been given to the
personal and social development of girls and
women with developmental disabilities
throughout the lifespan. This approach
attempts to understand their experiences and
their engagement with the tasks considered
appropriate in their family and culture at each
transitional stage - infancy, childhood,
adolescence, early - middle - and late
adulthood, and old age. For example, young
women in many industrialized societies
typically complete formal schooling and/or
vocational training, find employment, achieve
full citizenship and build personal friendships
and intimate relationships. Some may
establish homes and start childbearing.
Women in late adulthood who have been
employed may retire from the active
workforce, attend more to personal interests depending on their income and talents - and
perhaps devote themselves to grandchildren or
other family concerns. And as they age,
women and men increasingly value good
health and the independence and mobility it
brings.
3.1
Populations are ageing. The number of
people aged 65 years and above account for
7% of the world's population: two-thirds
(65%) of those aged 80 and above are female.
Global strategies must take gender differences
into account. A major challenge will be to
develop innovative ways of tackling the
special health and welfare problems of elderly
women (WHO 1997:11). From the
perspective of the WHO, healthy ageing is a
global priority. The need to focus on
promoting health and minimizing dependency
of all older people is a principle of action
common both to more developed countries where 12.6% of the population is elderly - and
to developing countries - where only 4.6% is
elderly (WHO 1995:2).
3.2
Gender and health. The differential
impact of gender on health is not static; rather
it reveals itself as the individual grows and
develops throughout his or her lifespan. Many
risks to health are age-related: Men die earlier,
while women experience greater burdens of
morbidity and disability. Women constitute
the majority of both the carers and the older
users in the health sector. Supporting the
female carers is a key health policy challenge
(WHO 1995:6.1.5).
3.3
UN emphasis. The special situation of
women is highlighted in current programs for
older persons within development planning.
1999 was the International Year of Older
Persons with the theme, "Towards a Society
for All Ages." A society for all ages
recognizes the rights and responsibilities of all
age groups and makes it possible for older
persons to live healthy, productive,
economically secure lives (UN 1997a:
SG/SM/6339 OBV/11).
3.4
Gender is recognized as a determinant
of health. A gender approach to health
includes an analysis of how different social
roles, decision-making power and access to
resources affect health status and access to
health care. The special needs of women and
current inequalities in delivery of health care
are apparent. The WHO has targeted
increasing its efforts towards: (1) advocacy
for women's health and gender-sensitive
approaches to health care delivery and
development of practical tools to achieve this;
promotion of women's health and prevention
of ill-health; (2) making health systems more
responsive to women's needs; (3) policies for
improving gender equality; and (4) ensuring
the participation of women in the design,
implementation and monitoring of health
policies and programs, in WHO and within
countries (WHO 1997:83).
3.5
Health status. Data gathered about the
health of women living in developed nations
indicate that while these women live on
average up to about 80 years, many die
prematurely before the age of 65 due to
accidents or diseases which could largely be
Healthy Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
avoided by healthier living or early detection.
Special health issues are important to women
at different stages of their lives. Eating
disorders have serious consequences for
younger women, adult women confront health
problems related to HIV and AIDS, and
among elderly women, the rising incidence of
osteoporosis has become a chief concern for
women (CEC 1997:8). In contrast, the health
status of adult women in the developing
nations is often compromised, resulting in
shorter life expectancies, greater rates of
illness or disability-related conditions, poorer
nutrition, and a greater incidence of problems
more related to earlier life stages.
3.6
Policy focus on women's health.
Policy-makers may embed the distinctive
health needs of women throughout the
lifespan in national health strategies. For
example, in Ireland, the Department of Health
formed a plan for women's health in
consultation with many individual women and
women's groups throughout the country. The
plan, which is in keeping with WHO targets
for the health of women, recognizes that some
groups of women - those with disabilities, for
example -face particular challenges to
maintaining good health. Lack of information,
lack of access to services and special
difficulties related to advice about sexual and
reproductive health were identified. The Irish
Government document recommends direct
consultation with women who have
disabilities themselves in order to develop
appropriate services (Government of Ireland
1997:63).
4.0 Health, Ageing and Intellectual
Disabilities : Cross-CulturalContexts
4.1
Increased longevity and improved
services of all kinds have led to an
unprecedented growth in the population of
persons with intellectual disabilities. It is
estimated that as many as sixty million
persons in the world may have some level of
intellectual disability (WHO 1997). Older
people with intellectual disability have
WHO/MSD/HPS/MDP/OO.6
Page 3
significant physical health needs (Cooper
1998; van Schrojenstein Lantman-de Valk
1998, inter alia). The health of individual men
and women with disabilities as they grow
older will reflect the social and economic
circumstances shaping their daily experiences.
Their fortunes may be especially at risk
relative to those of their peers or family
members. "It is in situations of dire poverty
that household members are subjected to
neglect, and people with disabilities are
particularly vulnerable (Whyte and Ingstad
1998: 43).
4.2
Access to health care. Informants from
developing, rural or remote regions report that
greater access to health care, information,
proper treatment protocols; and the like,
would all greatly enhance longevity. Many
individuals with more severe disabilities do
not survive the early childhood years. There
may be no surgeons, or no facilities for
neonatal care, and poor health outcomes for
the elderly. In the Pacific region, for example,
diseases such as measles, and dengue fever
may be lethal. Given generally poor access to
health resources, the population of people
with
intellectual and
developmental
disabilities is more likely to be stricken and
affected by threats from disease. Cultural
differences also influence health care across
the lifespan. Local healers and natural
medicines may be a mainstay for a
community. Further, cultures vary in their
understanding of, and attitudes toward, elders,
as well as toward women. Such attitudes may
influence the availability and accessibility of
health care for older women.
4.3
Socioeconomic contexts.
Thus,
healthy ageing does not arise and maintain
itself in a vacuum. Social, political and
economic environments interact with the daily
lives and experiences of individuals in a given
society. Efforts to promote their health and
well being reflect this complex interaction.
The quality of daily life experienced by
individuals both reflects and contributes to the
quality of the society in which they live.
Healthy Ageing - Adu.ts with In.ellectual Di,abilities: Women’s Health and Reiated Issues
WHO/MSD/HPS/MDP/OO.6
Page 4
Providing political environments which foster
healthy social relationships, trust, economic
security, sustainable development and other
factors related to advancing the health and
well-being of citizens has been identified as a
priority for governments. The quality of social
relationships in a society has been
documented as part of health outcomes:
healthier communities with greater social
cohesion produce healthier citizens (Lomas
1997). These and other factors make up a
country's social capital, an essential factor if
states are to achieve the priorities for effective
health promotion which are listed in the
Jakarta Declaration, such as increased
investment in health development particularly
for needy groups (Cox 1997:3).
5.0 Health and Ageing: Women's Health
and Related Issues
5.1
In preparing this report, two key
questions were posed in order to inform those
charged with implementing global, regional
and national health strategies including the
needs of women with intellectual disabilities.
These questions were (1) What is the current
knowledge base about the health of women
with intellectual disabilities across the
lifespan, especially among older women? (2)
What are the practices most effective in
promoting good health and satisfaction with
services among women with intellectual
disabilities?
Three kinds of evidence were used to compile
this report. First, information about global and
regional trends, demographic patterns and
socio-economic indicators were drawn from a
range of policy and research documents
published by bodies such as the World Health
Organization and other groups (Sections 2,3
and 4).
Second, research literature in
scientific publications was reviewed and three
summaries were prepared: these appear in
Sections 6.1,6.2 and 6.3. Third, colleagues in
many countries contributed background
information about local conditions in their
parts of the globe. Qualitative data were
yielded by focus groups and other
consultative meetings of women with
intellectual and developmental disabilities,
their families, advocates and professional
workers in many countries. The themes which
emerged about their experiences of health care
and promotion appear in Section 7.
The final section of this report, Section 8,
includes recommenda-dations for research,
policy and practice.
6.0 Summary Reviews Of Literature
Research summaries related to women's
health and ageing are organized across four
topic areas and appear in the following three
sections. The editors' initials appear in
parentheses. The first section (6.1) reviews
evidence about cancer and sexual health (H.
van S L- de V) and reproductive health (NS).
The second (6.2) focuses on promoting health
among ageing women with intellectual
disabilities (TH), and the third section (6.3)
addresses the social, economic and cultural
contexts of health (PNW).
6.1
Physical Health And Ageing
6.1.1
Menstruation
6.1.1.1
Among women with intellectual
disabilities, the average age at onset of
menarche is similar to that of women in the
general population. Most appear to have
regular menstrual cycles. Recent studies of
gonadal function in women with Down
syndrome have found distributions of age at
menarche and frequencies of women with
regular menses that are much closer to those
found in the general population than had been
presumed from earlier studies (mostly of
institutionalized women). Between 65% and
80% of women with Down syndrome have
regular menstrual cycles, while 15 to 20%
have never menstruated.
6_L1.2 Methodological problems in studies
of hormonal status during menstrual cycles in
Healthy Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
women with Down syndrome and other
intellectual disabilities include small sample
sizes, sampling of only a few cycles, and lack
of control for the stage of menstrual cycle at
which the blood sample was drawn.
Nonetheless, international studies have
generally supported the conclusion that most
cycles show evidence of ovulation and
formation of a corpus luteum, suggesting that
gonadal endocrine function is within normal
ranges in the majority of women with
intellectual disability.
6.1.1.3
Many women with intellectual
disability are treated with psychotropic
medication and/or anti-epileptic drugs
(AEDs). Psychotropic medications can
interfere with a number of hormonal and
metabolic functions. A common finding is
hyperprolactinemia in association with
neuroleptic drug use. Prolonged elevations in
prolactin can lead to declines in follicular
(FSH) and luteinizing hormone (LH) release,
leading to declines in ovarian function.
Reduced gonadal function may lead, in turn,
to menstrual disturbances, including
amenorrhea or infertility and reduced estrogen
release which may increase risk of age-related
disorders associated with reduced estrogen
levels. Seizures and AEDs may also influence
memory and cognition through changes in
neuroendocrine function. Elevated levels of
sex-hormone binding globulin, FSH and LH
have been described and long-term AED
therapy has been associated with primary
gonadal dysfunction and increased risk of
polycystic ovarian syndrome.
6.1.2
Sexual Health
6.1.2.1
Women with intellectual disability
have the same sexual needs and rights and
responsibilities as do other women. However,
care personnel and other carers are not always
adequately educated on this issue and may
seek to limit opportunities for sexual activity.
Older parents may tend to ignore the sexual
needs of their children. In many societies,
general attitudes toward persons with
WHO/MSD/HPS/MDP/OO.6
Pages
disabilities and toward women specifically
may further serve to deny or trivialize sexual
health concerns. Unfortunately, such attitudes
may also carry over to women of older age
and thus deny access to health services related
to gynaecological concerns and functions and
may lead to a dearth of health professionals
who are willing or trained to address
reproductive health issues.
6.1.2.2 People who are sexually active are
prone to sexually transmitted disease (STDs).
Education on symptoms of STDs and early
treatment is necessary to avoid further
transmission and development of late-stage
complications of the infection. Some STDs
are characterized by chronic pelvic pain,
vaginal discharge and abdominal pain, but
other STDs may be present without clinical
manifestations (e.g., 65% of Clamydia
infections). However, even when they are
symptom-free, infected women may transmit
their infections and, untreated, may develop
severe complications. Infection with the HIV
virus and development of AIDS is of special
concern. Currently, in countries from which
information is available, it appears that HIV
in persons with intellectual disability is
mainly spread by men who have sex with
men. However, because many of these men
also have sex with women, heterosexual
spread of HIV may be increasing, following
the pattern seen in the general population.
6.1.2.3 Women with intellectual disabilities
need to be educated about safe sexual
practices. Line drawings or pictures, or other
effective teaching materials, may be helpful in
presenting safe sex precautions and in
initiating discussion about sexual activity in
persons with limited conceptual or verbal
capacities.
Women with intellectual
disabilities may have poor skills in
negotiating safe sex even if they are motivated
to practice safe sex to avoid sexually
transmitted diseases. Women with intellectual
disabilities are subjected to the same power
discrepancies as women in the general, and
requests for safe sexual practices (e.g.,
WHO/MSD/HPS/MDP/OO.6
Page 6
Healthy Ageing - Adults with Intelieetual Disabilities: Women’s Health and Related Issues
condom use) may be difficult to impose.
Furthermore, many women with intellectual
disability have low self esteem, making
negotiations surrounding sexual activity more
difficult. Practical skills may also be a
problem. Many persons with intellectual
disabilities have motor problems which limit
their ability to use condoms effectively, as
well as poor understanding of their proper
use. Sexual education needs to include
practice in condom diaphragm/pill use with
instruction adapted to the capacity of this
population. It is crucial to recognize profound
cultural differences in sensitivity to the
content of such education for women and in
recruiting and preparing care staff and
instructors.
6.1.3
it is reasonable to assume that most adults are
fertile unless they have a disorder that affects
genital organs or brain regions responsible for
hormones that regulate ovarian function. For
example, only a few births to men and women
with Down syndrome have been documented.
In addition, in some countries a majority of
women with intellectual disabilities use some
form of contraception. Oral contraception is
preferred, with low dose combinations of
progestins and estrogens. Depot progesterones
are also widely used as contraceptives. Their
advantage stems from the fact that they need
to be administered only four times a year.
However,
irregular vaginal
bleeding
("spotting") and effects on cholesterol
metabolism that might increase risk for
coronary heart disease need to be considered.
Vulnerability and Protection
6.1.5
6.1.3.1 In addition, both men and women
with intellectual disability are more often
victims of sexual abuse than are persons in the
general population. Most offenders are known
to their victims and may include care
personnel and other carers, family members or
fellow residents who take advantage of the
person's inability to defend themselves or
their lack of knowledge about their sexual
rights. Because of poor communication skills
and lack of knowledge about their rights,
people with intellectual disabilities make also
experience difficulty in telling carers about
the abuse. Such abuse may continue for years
before any signs are given. Education about
sexual abuse should take place in settings
provided by carers who are familiar and
respectful of the person with an intellectual
disability and who can encourage full and
frank discussion about abuse (see: McCarthy
and Thompson 1998).
Therapeutic Amenorrhea
6.1.5.1
Therapeutic amenorrhea may be used
in women with intellectual disability who are
unable to manage menstrual hygiene
effectively or in women who show selfinjurious behavior related to menstruation.
The most common form of therapeutic
amenorrhea is suppression of menstrual cycles
with lynestrenol. In one report, a Finnish
gynaecologist noted that 66% of his patients
with intellectual disabilities had been
prescribed lynestrenol at some time in their
life. Alternatively, endometrial ablation,
abrasion of the inner layer of the uterus, may
be used to suppress menstruation and
establish therapeutic amenorrhea. More
radical procedures, such as hysterectomy
(removal of the uterus) may also be used to
prevent pregnancy. In the past, sterilization
was widely used to prevent pregnancy, often
without the consent of the person with an
intellectual disability. In more developed
6.1.4 Fertility and Contraception
countries, guidelines for sterilization now
require extensive documentation of the
6.1.4.1 In a number of countries, women with medical rationale for the treatment, including
intellectual and developmental disabilities are
documentation
of informed
consent
as likely to marry and to bear children as are
procedures.
their peers. While little research has addressed
fertility in women with intellectual disability,
Healthy Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
6.1.5.2
Endometrial ablation, hysterectomy
and sterilization, while effective, are
irreversible, raising legal and ethical concerns
about these procedures. Determination of the
perceived problems surrounding management
of menstruation and/or fertility should be
medically documented and should be
undertaken as much for the information of the
women herself as for the convenience of the
carer.
WHO/MSD/HPS/MDP/OO.6
Page 7
prevents or delays bone loss when taken
within 5 years of surgical or natural
menopause. Osteoporosis and an increased
risk for fractures was also found in younger
women with intellectual disabilities who had
either hypogonadism, a small body size, or
Down syndrome.
6.1.7.2 Breast Cancer. Risks for breast
cancer and cervical cancer also increase with
age. Whether or not women with intellectual
6.1.6
Menopause
disabilities have the same risk for these
cancers as women in the general population is
6.1.6.1
Very little is known about menopause still being debated, and further research is
in women with intellectual disability. Limited
needed to address this question. Women who
have never been pregnant - including many
studies have reported on the median age at
menopause and no study has systematically
women with intellectual disabilities - may be
at higher risk and thus screening is especially
tracked changes in hormones and ovarian
important
(M.
Vink:
personal
function with age in a large group of women
communication). But screening for these
with intellectual disabilities. Thus, there is
cancers may present special problems. Current
very little information on how decreases in
guidelines for screening for breast cancer
hormones after menopause may affect health
recommend regular mammography in women
and cognitive ability. Studies of menopause
over 50 years of age (every 1 to 2 years).
have found that the median age at menopause
Problems for effective participation in
was 3 to 5 years earlier in women with
screening programs among women with
intellectual disability compared with women
intellectual disability include difficulties in
in the general population. Women with Down
understanding and co-operating with the
syndrome and women with Fragile X appear
procedures, problems of transportation to
to have especially early onset of menopause.
screening sites and, often, musculoskeletal
problems which make accommodation to the
6.1.7
Age-Related Health Problems
mammography machines an uncomfortable
and fearful experience. Most physicians
6.1.7.1
Osteoporosis. Osteoporosis is
experienced with mammography in women
considered to be characteristic of disorders
with intellectual disability emphasize that
that increase after menopause and are related
health
and nursing personnel need to take
to estrogen loss. In addition, long-term use of
sufficient time for women to familiarize
anti-convulsants is a risk factor for
themselves with the machines and with the
osteoporosis. In women with osteoporosis
procedures to participate effectively.
bone mass slowly declines over the years to
However, economic pressures under extant
produce thinner and more porous bones,
proprietary or national health care systems in
which are weaker than normal bones. Post
certain nations may limit the willingness of
menopausal bone loss is associated with wrist
physicians and their staff to provide the
fractures in about 15% of women and with
necessary time and training to achieve
spine fractures in 20-40%. The most serious
successful levels of co-operation. In the
complication of osteopenia is hip fracture,
Netherlands, all women within a municipal
which occurs in 15% of older fair-skinned
administration system are invited by postal
women and causes high rates of morbidity and
code and birth date for breast cancer
mortality. Clinical trials of estrogen and bone
screening, but illiteracy and poor literacy may
density have consistently shown that estrogen
WHO/MSD/HPS/MDP/OO.6
Page 8
Healthy Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
limit participation. In other countries, the
screening program does not include women
who are not able to pay for the procedures. In
general, women with intellectual disabilities
receive fewer opportunities for screening for
breast cancer than do women in the general
population. This may be particularly insidious
in nations that have no systematic screening
procedures as women with intellectual
disabilities may be at particular risk since
most may have limited access to available
health practitioners, and if access is not
available, such screenings may never be
carried out
6.1.7.3 Cervical cancer. Guidelines for
screening for cervical cancer recommend
screening by cervical smear testing once every
2 to 5 years for women between the ages of 30
and 60 years. Sexual activity is associated
with increased risk for cervical cancer, so that
women with intellectual disability who are
have no experience of sexual activity may
possibly be excluded from screening
programs. Poor receptive and expressive
language, discomfort and fear may create
difficulties in achieving co-operation in pelvic
examination and obtaining cervical smears in
some women with intellectual disabilities. In
some nations, lack of available female
physicians may further limit such
examinations as societal mores proscribe such
contact by male physicians. Further, given
sensitivities to genital contact, and lack of
familiarities of such procedures by women
with disabilities under these circumstances, no
such screenings may ever be undertaken in
certain nations, further increasing risk.
the ability of estrogen to prevent coronary
artery disease and prevent the build-up of
some types of cholesterol in the bloodstream.
Other age-related conditions that appear to
occur with increased frequency in women
with intellectual disability are thyroid
problems, sensory impairment, heart rhythm
disorders and musculoskeletal disorders.
6.1.7.5
Alzheimer's disease.
Ovarian
hormones such as estrogen are also important
to maintain brain function in regions of the
brain affected by Alzheimer's disease. Some
scientists have suggested that the loss of
estrogen after menopause may increase risk
for the cognitive declines associated with
Alzheimer's disease, although this is still
controversial. Several studies have found that
women who took estrogen after menopause
had a decreased risk and later age at onset of
Alzheimer’s disease. Epidemiological studies
on the sex-linked prevalence of Alzheimer's
disease are equivocal, with some showing a
higher rate among women with Down
syndrome, and others showing no discernible
patterns between men and women with
intellectual disabilities of other etiologies.
6.1.7.6
Menopause. Women with intellectual
disabilities may have an earlier age of
menopause which may place them at
increased risk for these estrogen-related
disorders. In addition, the frequency of
estrogen or hormone replacement therapy is
much lower in women with intellectual
disabilities than in women in the general
population, so that they do not receive the
same degree of preventive and therapeutic
intervention as women in the general
6.1.7.4 Heart disease. The frequency of heart population.
disease is lower in menstruating women than
in men of the same age, but after menopause
6.1.7.7 Psychiatric illnesses. Older women in
the frequency of heart disease is the same in
general are reported to often experience more
women as in men. Many studies have shown
instances of depression and other life stressorthat the risk of a coronary event is reduced by
related reactive behaviors indicative of
about 50% in postmenopausal women using
psychiatric difficulties. As reported by the
oral estrogen compared with women not
WHO/IASSID’s report on Biobehavioural
taking oral estrogens. It is thought that this
Issues, this is often the case among older
decrease in coronary heart disease is related to
women with intellectual disabilities as well.
Healthy Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
This paper should be accessed for a more
detailed explanation of this problem area.
6.2
Health Promotion
WHO/MSD/HPS/MDP/OO.6
Page 9
intellectual disabilities living in residential
facilities found that women were more likely
than men to have malnutrition or obesity.
Data from the United States tells us that older
adults with intellectual disabilities living at
home exercise less frequently than other older
adults. In addition to the negative effects on
health, the high levels of obesity and the low
levels of physical activity reported among
adults with intellectual disabilities can create
barriers
to
successful
employment,
participation in leisure activities, and
performance of daily living activities. Other
health behaviors, in addition to diet and
exercise, which have been shown to affect
health among the general elderly population,
such as smoking, alcohol use, medication
management, and stress management, have
been rarely studied among women with
intellectual disabilities.
6.2.1
Health care paradigms are expanding
from an historical emphasis on treatment of
disease conditions to a more expansive focus
on health promotion through healthy
lifestyles, preventive health care, and positive
environmental conditions. There is a growing
body ofresearch associating successful ageing
and disease prevention with health behaviors
and environmental conditions. Among women
with disabilities health promoting activities
and settings can lead to enhanced useful
functioning, prevention of secondary
disabling conditions, and an increased quality
of life. Researchers have only recently begun
to explore the conditions promoting optimum
health among older persons with intellectual
disabilities, and even less among women with
intellectual disabilities. In a national survey
conducted in the United States, the most
common chronic health problems noted for
older adults with intellectual disabilities were
high blood pressure, osteoarthritis, and heart
disease. Women with intellectual disabilities
who survive into old age are most likely to die
of heart disease. Older women with
intellectual disabilities, particularly women
who have a lifelong history of anti-epileptic
medicine may be more susceptible to
osteoporosis than the general population.
6.2.3 Access to preventive health care varies
widely by country. Data from the United
States indicates very low levels of health
screenings for older women with intellectual
disabilities, including mammograms, breast
examinations, and pap smears, particularly for
women living in the community. Reasons for
lack of preventive health care include lack of
private insurance, attitudinal barriers of health
care professionals, insufficient health
education, and fear of examinations, and
communication difficulties experienced by
women with intellectual disabilities.
6.2.2
Proper nutrition, exercise, and access
to preventive health care can increase health
and longevity. Yet women with intellectual
disabilities receive less preventive health care
than women generally and have highly
sedentary lifestyles. Among adults with
intellectual disabilities obesity and cholesterol
levels are higher than for the general
population. This is particularly true for
women and for adults living in independently.
Among adults with Down syndrome, a United
States study reported that nearly half of the
women and nearly one third of the men had
morbid obesity. A study of women with
6.2.4 To promote healthy behaviors and
preventive health care among older women
with intellectual disabilities, health education
is needed for the women with intellectual
disabilities and for health professionals.
Women with intellectual disabilities may lack
basic knowledge about their bodies and about
health and ageing. They may be unaware of
how their current lifestyles and behaviors can
have an effect on their overall health and well
being. Also, health professional often do not
communicate effective strategies for health
promotion to women with intellectual
disabilities or their carers.
WHO/MSD/HPS/MDP/OO.6
Page IO
6.3
Healthy Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
The Context Of Healthy Ageing
6.3.1 The socio-economic context - for
example, level of income, employment status
and family circumstances - and also the
cultural environment in which individuals
develop and age influence health outcomes.
Differences in life expectancy, income and
access to health care are conspicuous when
outcomes for women in developing countries
are compared to those in the less developed
countries - where the majority of all persons
with intellectual
and
developmental
disabilities live. While these topics have been
explored among the general population to
some extent, little empirical research is
available concerning women with intellectual
disabilities.
6.3.2 Very few women with intellectual
disabilities marry, even in the more developed
countries, and few will have the opportunity
to experience gender roles which are typical
in their cultural settings. Few bear children.
As a consequence, in later life they lack key
sources of informal support and care. The
importance of the role played by brothers and
sisters in the development and well-being of
adults with intellectual disabilities across the
lifespan has been recognized. Yet the extent
and function of such relationships have only
recently been studied empirically. Women
with intellectual disabilities are also less
likely to become primary family carers,
although increasingly those who become
middle-aged may be called on to care for an
elderly or frail parent who has heretofore
provided care for them. Some questions
remain: for example, can respite care - an
important element in formal care - help to
maintain or promote health and well-being
among women with intellectual disability,
either directly or through its impact on family
members?
6.3.4 While it is recognized that friendships
and social networks contribute to the health
and well-being of women in the general
population, the specific elements of this
contribution in the lives of women with
intellectual disability is less well understood.
Adults with intellectual disability tend to
name significantly fewer individuals and to
have more dense social networks than other
adults. Those who receive formal services
describe social networks filled largely by
members of staff. In addition, their networks
include more family members than friends although men with intellectual disabilities are
likely to include fewer friends. Adults also
tend to name family friends as their own.
While empirical evidence suggests that
adopting multiple social roles may help to
protect women from threats to their well
being, women with intellectual disability are
much less likely to have such varied life
opportunities.
6.3.5
The favorable impact of employment on
the well-being of employees in terms of
income, personal satisfaction, esteem,
friendships and health has been welldocumented in the more developed countries.
Less is known about the impact of
employment status on the health and well
being of adults with intellectual disabilities,
although this has been recognized as an
important area for continued research.
6.3.6
The day-to-day experiences of women
in the workplace, as well as the expectations
of supervisors, employers and co-workers
have been explored in a few recent studies. It
has been reported in Australian and North
American studies that women with intellectual
disabilities in community employment are
more lonely at work than men. Initial findings
of a longitudinal study being carried out in
France (GRADIOM) suggests that staff
members and medical personnel in sheltered
workshops appraise women with intellectual
and developmental disabilities as being old
some years in advance of the men of similar
age with whom they work. Whether this
perception is due to cultural factors or to
differential working conditions or access to
health care has not yet been determined. In
general, the uptake of employment, patterns
Health) Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
WHO/MSD/HPS/MDP/OO.6
Page 11
of occupation, and benefits of employment
among women with intellectual disabilities
across the lifespan have not been investigated
systematically and across cultures.
yet to be determined. Accordingly, there is
little evidence to indicate how their health and
well-being may be promoted through wider
participation in society.
6.3.7
It is not known, for example, whether
in developing countries women with
intellectual disability share in the
"feminization of the work force" trend which
has been apparent in more industrialized
countries, notably among women with
disabilities. Some findings suggest that
patterns of employment and employment
outcomes differ for women with intellectual
disability. Less is known about the
employment experiences of women in
developing countries, where a priority is to
acquire skills so as to contribute to family and thus, their own - livelihood.
7.0 Qualitative Information
This section presents a summary of key issues
identified during a range of focus group data
collections, as well as at a variety of meetings
or consultations carried out with women with
intellectual disabilities, their family members,
advocates and friends. While the procedures
varied slightly, some commonalities emerged
when data from all the groups were explored.
The issues which arose in several different
sites have been blended here, partly to protect
the individuals who offered their assistance so
readily. The findings appear under five
headings selected because they reflect the
6.3.8
While employment may bring benefits emergent concerns of the women informants:
in terms of income, self-esteem and
ageing and disability (7.1), treatment (7.2),
community participation, it may not be
training for professional workers (7.3), health
without hazard. Because of the generally
promotion (7.4), and personal and practical
unskilled nature of the occupations assigned
supports (7.5).
to women with disabilities who may be
7.1 Ageing and Disability
employed, they are more likely to be exposed
to occupational hazards and toxic substances.
Many occupational diseases can be prevented
7.1.1 Determining ones age is often difficult
for persons with limited experiences or with
through improvements to the work
intellectual disabilities. For example, only
environment and reduction of harmful
half of the participants in one group could tell
exposure to toxins and other substances. For
their current age. Thus, self-defining ageing
example, silicosis is common in many dust
over the life course may be a difficult skill.
generating activities such as ceramics
Life course changes, such as acknowledgment
production, prompting a joint 1L-WH0
of the basic physical changes that take place
initiative planned to eliminate this disease.
over time, from baby to girl to teenager to
The long-term impact of these occupational
woman, such as the body growing bigger as a
hazards on the health of women with
person
gets older and girls getting periods as
intellectual or other developmental disabilities
a teenager; concern over changes in family
who are in the labor force has yet to be
relations and issues related to ageing parents
investigated.
as they get older - sometimes mostly sad
6.3.9
Although, it is likely that women with experiences (e.g., grief over death of a loved
one
and negative changes in relationships
intellectual disabilities who have achieved
with family members) can be difficult without
employment in the regular labor force
outside validation. To some persons with
subsequently take a more active part in
intellectual disabilities, "getting old" evokes
society, outcomes for them in terms of greater
notions of becoming sick and dying.
social inclusion - a core social policy within
However, some adults do recognize that not to
the European Community, for example - have
WHO/MSD/HPS/MDP/OO.6
Page 12
Healthy Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
do so depends on a person's health status and
how often she visits the doctor. In many of the
focus groups, there was generally a lack of
appreciation of anything that would be
considered "good" about growing older.
7.1.2 A related perception emerged in one
group, which found that often there is a lack
of self-identification among older women as
being someone with a disability, or a negative
perception of people with disabilities. The
desire to bear a child, but a child without any
disabilities, was apparent for some women.
Another group found that many older women
with intellectual disabilities have previously
been institutionalized for years. They have
grown up with poor diets and a lack of
exercise, thus increasing their risk of
osteoporosis.
7.2
Medical Procedures and Treatment
7.2.1 Giving consent to undergo medical
procedures or treatment raises complex issues
which differ from country to country. Consent
issues for procedures such as a breast biopsy
are a major problem for women who may
have difficulty understanding the procedures
themselves or the relative merits and
disadvantages of a particular form of
treatment. Mental health issues in relation to
sexual abuse of women are still untreated or
under-rated. Alcohol and drug dependence
and disorders such as depression among
women living alone or with their families tend
to be treated as behavioral disorders. As a
result, appropriate treatment is not provided.
There still is a tendency by doctors to apply a
"band-aid" approach - such as prescribing a
calming medication - rather than address the
underlying problems. Equipment for
mammograms and other tests that are
recommended for the general population are
often not suitable for women with physical
disabilities such as spina bifida or for women
with disabilities who are very short in stature,
who have contractions or similar conditions.
Even the examination tables are not accessible
for many women with physical disabilities or
who are afraid of the examination process.
7.2.2
Dental care for women with disabilities
was reported as an issue by a number of
groups. Few dentist offices are accessible and
the equipment is rarely suitably adapted for
adults with physical disabilities. There is also
still a fear of the dental process among many
women. Care personnel report an increase in
swallowing disorders, seizures, asthma,
reflux, and functioning loss in older women.
These phenomena have only been observed
and there is a need for studies to determine
whether these observations accurately reflect
prevalent health conditions. Little is known
about osteoporosis in women with disabilities
and little is known whether certain
medications such as steroids and epilepsy
medications can increase the risk of
osteoporosis. Focus groups report a need for
training on sexually transmitted disease,
especially AIDS.
7.2.3
Complex issues such as estrogen
replacement are still controversial for the
general population of women: it is even more
difficult to determine appropriate treatment
recommendations for individual women.
There is still a tendency to perform possibly
unneeded hysterectomies, sterilizations, and
procedures such as dilatation and curettage
when there is no one to advocate or advise the
woman with a disability. Much of the research
available has been based on populations of
men rather than women - for example, studies
on heart disease. It is difficult to monitor and
advise women with disabilities or to make
decisions about health when the information
is not available. Studies are few that involve
women themselves and the information from
those that are conducted needs to be made
available widely for women with disabilities.
7.2.4
Decisions related to pap smear tests
include an assumption that women who
appear to have been sexually inactive have no
need for tests. And yet, who is to decide
whether the woman has ever been active or
may have been sexually abused in the past?
Healthy Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
The need for information related to HRT hormone replacement therapy - including risk
factors, cost of ongoing treatment, types of
HRT available (e.g., tablets, patches,
implants). Women who have been sterilized at
an early age (parents have been able to give
consent for minors under 18 years of age to
have a hysterectomy) may have different
needs in older age than women who may
choose to be sterilized at a later age.
7.2.5
It is helpful if older women with
intellectual disabilities can recognize the
differences between women and men in terms
of different body parts (including genitalia);
that menstrual periods are something only
women have; and that menopause is a time
when a woman's period stops. Often, older
women do not understand why the menopause
takes place. Others may lack a way to
describe common physical changes that
women experience related to menopausej such
as hot flashes and irritability, or to understand
what is involved taking medication such as
HRT. Generally, women with intellectual
disabilities experience an overall discomfort
about, and reluctance to discuss, traditionally
taboo subjects, such as sexuality, and in
general talking about their own bodies.
WHO/MSD/HPS/MDP/OO.6
Page 13
7.3.2 Training for health professionals, staff
and families on how to better communicate
health issues to women with intellectual
disabilities was urged by a number of groups.
This was defined further as training for health
professionals that will sensitize them to the
concerns expressed by many of the women
with intellectual disabilities (i.e., painful or
uncomfortable exams and procedures) and
how to facilitate more positive health
experiences for them.
7.3.3 There are often many unanswered
questions regarding the purpose of having
medical examinations, such as ophthalmic,
dental and pelvic exams, and mammograms.
Many women reported feeling discomfort or
pain during mammograms or pelvic exams.
They reported being accompanied to
physician visits by care personnel, but often
the care personnel were not helpful in
explaining the physical procedures.
7.3.4 Women in the focus groups noted that
health examinations can be made more
pleasant, by doing such things as controlling
their own behavior (lying still, holding
breath), but many were less certain of how the
physician or other medical personnel might
help. There were mixed reactions on how
physicians treated women: some reported that
7.3 Training for Professionals
physicians and other health professionals were
7.3.1
Physicians and their staff do not often nice to them, while others disagreed.
understand disabilities or have any education
7.4 Health Promotion
on disabling conditions. Community health
professionals may not have experience in
health care and concerns related to people 7.4.1 Focus groups often emphasized the
need for prevention of onset or worsening of
with developmental disabilities in general,
a disease or condition among women with
and older women in particular. The offices
intellectual disabilities. Proactive lifestyle
where medical care is provided are often
changes can provide health benefits for
rushed with little time spent explaining the
women with intellectual disabilities who have
service system, health issues and other
not led healthy lives, even at a later age. The
matters. Many women in the focus groups
systematic use of periodic screening
reported that there is not enough time in the
checklists for women has been found to be of
office preparing women with disabilities for
benefit to general practitioners.
examinations and helping each woman
understand health related issues. Even family
7.4.2 When health services are available,
members are rushed through visits to
women often report that they experience
physicians.
WHO/MSD/HPS/MDP/OO.6
Page 14
Healthy Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
general confusion over what procedures
physicians would do during both regular and
specialized exams, and what was the purpose
the different types of examinations. In some
nations, aid in preparing for medical
examinations is provided by care personnel.
In the United States, for example, such
personnel -often nurses - help to prepare
women for medical examinations and other
treatments This is often the case if the woman
is enrolled in a residential or day services
program. However, it has been noted that if
the woman is living on her own in the
community, there is no one who takes
responsibility for this training or advocacy.
7.4.3 Wellness as a lifestyle was often
discussed. Participation in a exercise regime
and recognition of the importance of regular
exercise for staying healthy as they get older
was an apparent need. Many women knew
that is important to eat the right foods in order
to stay healthy, but were not aware that many
of the foods that they currently eat would not
fit the model of a "healthy" diet. Efforts to
encourage women to understand that smoking
can cause cancer and that it is not a healthy
behavior were recommended. The fact that
older women (and men) with intellectual
disabilities are less likely to engage in active
sports was noted.
anyone to help them negotiate the complex
health system and payment processes.
7.5
Personal and Practical Supports
7.5.1
Women capable of occupation or
employment should be assisted to achieve or
maintain optimal functional and employment
capacity. With regard to employment and
access to health care, women with disabilities
should be able to work without compromising
their entitlement to health services. To help in
manageing work assignments, personal
assistance services should be provided.
7.5.2 Medical services for women with
intellectual disabilities should be provided
consistent with current standards of practice
and such medical services should be sufficient
to achieve their purpose. When income is
used to determine eligibility or degree of
medical service receipt, medical services for
which individuals may be eligible should be
provided at no expense or at minimum on a
sliding fee scale. Further, with regard to
medical services, a patients' bill of rights
which addresses the needs of people with
disabilities should be available. Person
centered, holistic approaches to health care
need to be adopted.
7.5.3
Supports for women with intellectual
disabilities are important so that they might be
encouraged to explore perceptions of
themselves as women and their personal
issues related to sexuality in a way that is
respectful and breaks the apparent "taboo"
surrounding these discussions. They may gain
support, further, by learning ways to
communicate their concerns, including an
understanding that they have the right to
express feelings of discomfort and/or to ask
questions of health professionals. Finally,
women with intellectual disabilities should be
helped to understand more fully and develop
7.4.5 Access to health promotion may be more positive perceptions about being a
constrained if women do not have suitable
women, having a disability, and getting older.
support. Generally, women who are not
affiliated with (service) agencies do not have
7.4.4 Education for women with intellectual
disabilities was recommended, including
topics concerning women's health issues and
general age-related changes, as well as about
specific health issues related to their disability
and/or to ageing. Many of the women
reported watching and/or listening to
television and radio. Given this, it was agreed
that appropriate health information could be
developed utilizing a variety of materials,
including audio-visual and related computerbased multimedia - for example, WEB-TV.
Health) Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
7-5.4 Although some areas on the world are
comfortable exploring the myriad of women's
issues, others are not There are many
important matters related to women's health
care that need to be discussed. One is that
access to health care is often arbitrary. Even
when it is allocated, the requirements of
special groups of women with intellectual
disabilities may be poorly understood, placing
them at a disadvantage. Women with multiple
disabilities may have even less access to
health care than their peers with minimal
disabilities, especially to reproductive health
care. Professionals may have had little contact
with women who have profound disabilities
and little sensitivity to their needs throughout
the lifespan and those of their family carers.
Often, women with physical or multiple
disabilities and their advocates spoke of their
distress when they encountered various
medical investigations and procedures, and
the resulting distress which could prevent
them from receiving appropriate treatment.
7.5.5
Ethical issues related to informed
consent to medical treatment are far from
uniform. Both good and poor practices may
be found in all regions. Advances in
professional training and adequate financial
resources do not guarantee good practice. Too
often, prevalent is the belief that women of
reproductive age should be sterilized routinely
in order to prevent transmission of conditions
giving rise to disabilities.
8.0 Policy and Service Recommendations
A number of recommendations related to
women's health policy and practices in health
and health-related services are proffered:
8.1
Sterilization
In some nations, sterilization is used to
control a woman's sexuality or for the benefit
of carers and not with regard to the woman's
preferences or health. Each nation should
adopt guidelines regarding the sterilization for
women with intellectual disabilities,
WHO/MSD/HPS/MDP/OO.6
Page 15
especially addressing the issue of informed
consent to this procedure. Sterilization should
never be applied as a broad social policy and
without the woman's consent.
8.2
Evaluating Health Status
Service providers should determine how the
health status and health care practices of
parents and carers may be associated with
those of women with intellectual disabilities
so as to evaluate their health needs and plan
appropriate interventions within a family
context.
8.3
Adopting Health Promotion Strategies
Health promotion strategies which recognize
the cultural and social context and which are
sensitive to the needs of women with an
intellectual disability throughout their lives
should be developed in consultation with
them. At the same time, a greater
understanding of age-related changes should
be advanced.
8.4
Training Health Providers
Health care professionals should receive
training in order to deal sensitively and
effectively with women's health needs.
Training should be targeted according to local
conditions. In some countries, primary health
care workers should be trained to offer
essential information and guidance if
physicians or other professionals working in
health care systems are unable to do so.
8.5
Inclusive Communities
Supports for living and working in the
community should take account of the
distinctive characteristics and needs of women
with intellectual disability at different stages
in their lifespan.
WHO/MSD/HPS/MDP/OO.6
Page 16
Healthy Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
9.0 Research Priorities
9.4
Several important areas of research in sexual
and reproductive health are suggested. In
many instances, these inquiries should be
undertaken within the context of large scale
multinational studies.
The area of reproductive health, particular in
regard to what practices may affect women as
they age is virtually untouched in the
literature on women and intellectual
disabilities. An important question is, Are
women with intellectual disabilities more or
less at risk from certain forms of cancer?
More information in needed, such as: How
can women with intellectual disabilities be
guided on making their own choices in having
children and/ or using contraceptives? What
are the rights and responsibilities of guardians
in supporting the choice process?
9.1
Menstruation
This topic has received scant research
attention and many questions remain
unanswered, including: How many women
with
intellectual
disabilities
have
regular/irregular and fertile/infertile menstrual
cycles? How do risk factors such as having
Down syndrome, short stature and
hypogonadism - and maybe other risk factorsinfluence this? To what extent do
anticonvulsants and neuroleptics influence
these?
9.2
Menopause
Life stage related changes affect women with
intellectual disabilities in the same manner as
they do other women. Yet, little research has
been directed toward these critical transition
stages. Many questions remain, such as: How
many women with intellectual disabilities
have an earlier onset of menopause? What are
risk factors for that?
9.3
Sexually Transmitted Diseases
STDs are a public health problem at any age.
Women with intellectual disabilities are no
less vulnerable to them. Yet, research has
been negligent in addressing the particular
issues related to STDs and women with
intellectual disabilities. It is necessary to
know more, for example: What are effective
strategies for educating women with
intellectual disabilities on sexually transmitted
diseases?
9.5
Reproductive Health
Training of Medical Practitioners
In a number of countries, medical personnel
are trained to become specialists in the area of
intellectual disabilities, yet practically none
have emerged as leaders in the area with
regard to women's health. The dearth of
trained practitioners who can serve as leaders
in women's health is an impediment to
realizing many health targets. Universities,
medical training institutions and other settings
should expand their focus in this area,
particularly expanding their research efforts.
There is a need to know more about how to
more effectively deliver services to women
with intellectual disabilities. For example:
What training packages are effective in
educating physicians,
and especially
gynaecologists on the special needs of women
with intellectual disabilities?
9.6
Prevention
What is an appropriate strategy for making
PAP smears in women with intellectual
disabilities? Are there groups of women with
intellectual disabilities who need not to be
invited for this preventive measurement?
What is known about the prevalence or course
of cervical cancer in this population?
Healthy Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
9.7
Disease Impact
Research must help to determine the
incidence and impact of osteoporosis and
osteoarthritis among ageing women with
disabilities, notably in terms of their social
inclusion and general well-being.
9.8
Lifespan Effects
Long-term effects on health should be
investigated among ageing women. How diet
and nutrition of women with disabilities relate
to the incidence of heart disease, and the
interface of longitudinal drug therapy with
lifelong health are two such areas.
9.9
General Life Status
Overall, to date there have been few empirical
studies investigating the impact of their
employment status or levels of social
inclusion on the health and well-being of
women with intellectual disability at different
stages in the lifespan, and across different
social and cultural settings. Further, no
research has been conducted on how to
integrate women's health issues into the
medical practice of nations where women
have a devalued status. This is an important,
if often complex, area for continued research.
9.10
WHO/MSD/HPS/MDP/OO.6
Page 17
First, our understanding of the distinctive
needs, vulnerabilities and sources of well
being for women with intellectual disabilities
must be addressed vigorously. There are
compelling research priorities in the areas of
reproductive and sexual health, and in health
promotion practices, if health strategies
founded on scientific evidence are to be
pursued. Research questions of great
importance to the health and ageing process
among women generally have not been
investigated among women with intellectual
disabilities.
Second, a notable feature of WHO policy is
the direct involvement of women themselves
in informing, shaping and evaluating health
interventions. This report offers examples of
how women with disabilities may be directly
involved as full partners in the formation of
health strategies and interventions, and thus as
contributors to their own well-being as they
age.
Third, it is evident that health resources are
finite. The distinctive health care needs and
also the relatively low socio-economic status
of women with intellectual disabilities must
be understood in order to inform the
allocation, or the re-allocation, of scarce
resources at global level.
Socio-Economic Status and Health
References
Women with an intellectual disability are
generally of low socio-economic status.
Research should be undertaken to determine
the special needs of such women that need to
be met in order for them to achieve an
equivalent level of physical and subjective
well-being to non-disabled women and men
living in similar circumstances.
10.0 Summary
Promoting women’s health across the lifespan
may be seen as part of global strategy. Three
major themes arise in this report.
Adlin M (1993) Health Care Issues. In E. Sutton,
Factor A, Hawkins B, Heller T, Seltzer G (ed) Older
Adults with Developmental Disabilities: Optimizing
Choices and Change (p. 49-60). Baltimore, MD: Paul
Brookes Publishing.
Anderson, D. 1997. Health status and conditions of
older adults with mental retardation. Paper presented at
the Eighth International Roundtable on Aging and
Intellectual Disability, Chicago, April 1997.
Ashman, A. F., Suttie, J.N. and Bramley, J. 1995.
Employment, retirement and elderly persons with an
intellectual disability. Journal ofIntellectual Disability
Reseamh 39 (2), 107-116.
Bell AJ, Bhate MS. 1992. Prevalence of overweight
and obesity in Down syndrome and other mentally
handicapped adults living in the community. Journal
WHO/.MSD/HPS/MDP/00.6
Page 18
Healthy Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
ofIntellectual Disability Research 36, 356-364.
Brown, A. A. & Murphy, L. (1999). Aging with
developmental disabilities; Women's health issues.
Arlington, TX: The Arc of the United States and the
RRTC on Aging with Mental Retardation.
Center J, Beange H & McElduff (1998) A. People with
mental retardation have an increased prevalence of
osteoporosis: a population study. American Journal on
Mental Retardation 103: 11-28.
Commission of the European Communities 1998. A
New European Community Disability Strategy.
Document 98/0216 (CNS). Brussels: CEC.
Commission of the European Communities 1997.
European women=s health can still improve.
Prevention - Progress in Community Public Health,
No.4/11-97. Brussels: DG V, Employment & Social
Affairs.
Cox, Eva (1997). Building Social Capital. Health
Promotion Matters (4), September 1997,1-4. Victoria:
VicHealth (P0 Box 154 Carlton, South Victoria 3053,
Australia).
Elkins TE, Gafford LS, WIks CS. Muram D. Golden
G. (1986). A model clinic for reproductive health
concerns of the mentally handicapped. Obstetrics &
Gynecology, 68, 181-188.
Evenhuis HE, Oostindier MJ, Steffelaar JW &
Ccebergh JWW. (1998). Incidence van kanker bij
mensen met een verstandelijke handicap: mogelijk
verhoogd risisco op slokdarmkankerl Ned Tijdschr
Geneesk 140:2083-6.
Fujiura, G. T., Fitssimmons, N., Marks, B., Chicoine,
B. (1997). Predictors of BMI among adults with Down
syndrome: The social context of health promotion.
Research in Developmental Disabilities, 18, 261-274.
Gerbase, AC, Rowley JT & Mertens TE. (1998).
Global epidemiology of sexually transmitted diseases.
Lancet 361; (suppl Ill) 2A.
Gill C, Kirschner KL, Reis JP. 1995. Health services
for women with disabilities: barriers and portals. In V.
L.O.S.B. Ruzek, Clarke AE (eds) Women=s Health;
Complexities and Differences, 95-111. Columbus,
Ohio: Ohio State University.
Goldstein H. (1988). Menarche, menstruation, sexual
relations and contraception of adolescent females with
Down syndrome. European Journal of Obstetric
Gynecology and Reproductive Biology. 27:343-349.
Government of Ireland. (1997). A Plan for Women’s
Health. Dublin: The Stationery Office.
GRADIOM 1999. Project coordinated by: P. Leroux
Hsiang Y-HH, Berkovitz: GD, Bland GL, Migeon CJ,
Warren AC (1987). Gonadal function in patients with
Down syndrome American Journal of Medical
Genetics, 27:449-458.
Huovinen K'. 1993. Gynecological problems of
mentally retarded women. Acta Obstetrica et
Gynecologia Scandinavia 6:47-80.
Janicki, M.P., Dalton, A.J., Henderson, C.M., &
Davidson, P.W. (1999). Mortality and morbidity
among older adults with intellectual disabilities: Health
services consideration. Disability and Rehabilitation,
21, 284-294.
Kopac, C.A., Fritz, J. and Holt, R. 1996. Availability
and Accessibility of Gynecological and Reproductive
Services for Women with Developmental Disabilities.
Annandale VA: ANCOR (American Network of
Community Options and Resources).
Krauss, M.W., and Seltzer, M.M. 1994. Taking stock:
Expected gains from a life-span perspective on mental
retardation. In: M.M. Seltzer, M.W. Krauss and M.P.
Janicki (eds). Life Course Perspectives on Adulthood
and Old Age. Washington DC: AAMR, pp 213-19.
Krauss, M.W., Seltzer, M.M. and Goodman, S.J. 1992.
Social support networks of adults with mental
retardation who live at home. American Journal on
Mental Retardation 96(4) 432-441.
Levy, J. M., Botuck, S., Levy, P.H., Kramer, M.E. et
al. 1994. Differences in job placements between men
and women with mental retardation. Disability and
Rehabilitation 16(2) 53-57.
Lunsky Y, Reiss S. 1998. Health needs of women with
mental retardation and developmental disabilities.
American Psychologist 63:319.
Mank, D., Cioffi, A., and Yovanoff, P.1997. Analysis
of the typicalness of supported employment jobs,
natural supports and wage and integration outcomes.
Mental Retardation 35(3), 185-197.
McCarthy, M. (1994) Against All Odds: HIV and Safer
Sex Education for Women with Learning Difficulties.
In Doyal, L. et al (eds) AIDS: Setting a Feminist
Agenda. London: Taylor & Francis.
McCarthy, M. (1998) Whose Body Is It Anyway?
Pressures and control for women with learning
disabilities. Disability and Society 13, 4.
McCarthy, M. and Thompson, D. (1994) Sex and staff
training. Brighton: Pavilion. McCarthy, M. and
Thompson, D. (1998) Sex and the 3R's: Rights,
Responsibilities and Risks. Second edition. Brighton:
Pavilion.
McCarthy, M. and Thompson, D. (1994) HIV and
Safer Sex Work with People with Learning
Disabilities. In: A. Craft (ed) Practice Issues in
Sexuality and Learning Disabilities. London:
Routledge.
McCarthy, M. (1997) HIV and Heterosexual Sex. In:
P. Cambridge and H. Brown (eds) HIV and Learning
Disability. Kidderminster: BILD.
O'Toole, B. and McConkey, R. 1995 (eds). Innovations
in Developing Countries for People with Disabilities.
Chorley: Usieux Hall Publications
Rimmer, J.H., Braddock, D., & Fujiura, G. 1993.
Prevalence of obesity in adults with mental retardation:
Implications for health promotion and disease
prevention. Mental Retardation 31, 105-110.
Rimmer, J.H., Braddock, D„ & Marks, B. (1995).
Health characteristics and behaviours of adults with
mental retardation residing in three living
Health) Ageing - Adults with Intellectual Disabilities: Women’s Health and Related Issues
^a"|e™pIltS' ^esearc^ in Developmental Disabilities
Rubin, S.S., Rimmer, J.H., Chicoine, B., Braddock, D.,
& MCGuire, D. E. 1998. Overweight prevalence in
—
♦J
persons with Down syndrome. Mental-Retardation
36(3): 175-181.
Schupf N, Zigman W, Kapell, D, Lee J, Kline J, Levin
B. 1997. Early menopause in women with Down
syndrome. Journal ofIntellectual Disability Research
41. 264-267.
Seltzer, M.M., Krauss, M.W., Walsh, P., Conliffe, C.,
Larson, B., BirkbeckjG., Hong, J. & Choi, S.C. 1995.
Cross-national comparisons of ageing mothers of
adults with intellectual disabilities. Journal of
Intellectual Disability Research 39 (5) 408-418.
Turk MA, Geremski CA, Rosenbaum PF, Weber RJ.
1997. The health status of women with cerebral palsy.
Archives of Physical Medicine and Rehabilitation
78(12 Suppl 5); 210-217.
United Nations 1994. Standard Rules on the
Equalization of Opportunities for People with
Disabilities. New York: United Nations.
United Nations, 1997a. Press Release SG/SM/6339
OBV/11. “Programmes for older persons must be
integral part of development planning, SecretaryGeneral says”. New York: United Nations.
United Nations, 1997b. Women’s Rights the
Responsibility of All. Basic information kit no.2. New
York: United Nations.
United Nations 1998. Commission on the Status of
Women, 42nd session: March 1998. New York: United
Nations.
van Schrojenstein Lantman-de Valk, H.M.J. 1998.
Health Problems in People with Intellectual Disability.
Maastricht Unigraphic.
Whyte, S.R. & Ingstad, B. 1998. Help for people with
disabilities: do cultural differences matter? World
Health Forum 19(1), 42-46. Geneva: WHO.
Wngfield M, Healy DJ, Nicholson A 1994.
Gynecological care for women with intellectual
disability Medical Journal ofAustralia, 160: 536-538.
World Health Organization 1995. Aging and Health. A
Programme Perspective. Geneva: WHO.
WHO 1997. Gender as determinant of health. In: The
World Health Report 1997. Geneva: WHO, p 83.
World Health Organization 1998a. Ageing: the surest
demographic reality of the next century.
World Health (No 2), March-April 1998, 26-27.
Geneva: WHO.
World Health Organization 1998b. The World Health
Report 1998. Geneva: WHO.
Zuhlke C. Thies U. Braulke I. Reis A & Schirew C.
1994. Down syndrome and male fertility: PCR derived
fingerprinting,
serological
and
andrological
investigations. Clinical Genetics.
WHO/MSD/HPS/MDP/OO.6
Page 19
"xcw xo.
'XSIL are^et^png old"
■'■^b' ■'
■• srti
EjiEPING JIEALTliY
Hr.c, .
--:.*
ZEROISE REGULARLY : z.
Fhe amount of Exercise you need is "a little more than youdid yes’■erday",
r
talking is a' 'good exercise, especially if you have not been
excercising regularly'.
You may even try biking, hiking or even swimming.*
Use your■Judgement afoout what pace to sat for yourself.
Listen to your body.
Ask your doctor for advice if your are
P,
unsure.
If you cannot talk while you are exercising because you.cnie
too short of breath, you are probablyfoverdoing it,
Exercise daily or, at 'least, ebe.ry other day,
Relaxed, steady regular.exerdcc- i^. much better than
intermittent exhaustive work out.
You will sooninottoe increased energy, limberness and
firmness,
It. is important to move your Joints,
talking is good for
this purpose, but you can also keepyour Joints supple by flexing
jour arms, shrugging your shoulders or even stretching your legs,
'Such exercise helps prevent stiffness.
3.
‘
Choose yoUT" food from each -of the. following four main
groups every'day /
1,
Fruits and Vegetables - eat four or five servings
everyday.
R, Dairy products - including milk, cheese or ice cream.
2
'
J. Meats - Four to .S''-.
• j;- -Its eg-<.?'alent each
An average servi...... '•
■■ 'vide the equivalent
•
..7,3 follrw'-. ■ ,ro-.'d
?,f meat.
T..-j egg.., one
0/ baked beans or four table spoons of peanut r'.--tera
4. Breads and Cereals, including rice and pr-sta - fibre
from whole grain bread, three to five slices each day, is
highly beneficial.
Concentrate on Calcium intake to promote healthy bones.
Two glasses of milk each day are enough, but three glasses are
better.
If you do not like milk'-the following foods contain
the same amount of Calcium as same amount is in one .glass of
milk.
4
Two slices of cheese, one cup of yogurt, or four table
spoons of skimmed milk powder.
Eat plenty of fibre, whole grain bread is a good fibre
source bran, beans, fruits and vegetables also provide fibre.
C: AVOID AQQIDIWT.S. /
Look for dangers inside and outside.
Make modification
(such as ramps, ratling, supports) if necessary.
If your balance is poor, seek advice from your doctor.
j'se assistive devices such as a Cane or Falker.
Plan your
activities for safely.
If you fail, think about how tt happened and determine how
it could be prevented in the future.
Tell your doctor about it.
Do not go out alone.
Do not rush especially at night and in bad weather.
D: KEEP.JNV0H3D. i
Keep informed about the news.
Make an effort to visit your friends and make new friends.
If you are alone, keep yourself busy in various activities
visit other senior oitit/ens, or visit temples* or visit home f°r
ZPJL A^L 9miM9..0W"
A'JW,ID& £08.
.i f
4“;.Wi£A f&2PU.MX t
Fh& amount of i'x'sretse you need Is ’a little more than j.ou
did yesiertisy".
talking is a good exercise, especially if you have not been
exorcising regularly,
fan may even try St/cing, hiking or even swimming,
Use your judgement about whai pace io sat for yourself,
Lleten la your body,
Ask your doctor for advice if your are
unsure,
if you cannot talk while you are exercising because you &ro
too short of breath, you are probably overdoing it,
fxerotee daily ort at leasts every other day,
aslaaedt steady regular oxerotas la ^uoh better than
Iriteraliient s^haust^vo aork out,
YOU mil aoon^ioiloe increased energy, limberness and
firaheeS,
it is iiA^ortant to w©uk} your joints,
talking is good for
tfiia fnir^ooo, but you o,m also keapyour Joints supple by fleeing
your wwsi shrugging your anouldors or even atretohtng your legs
'Suah 'etsoralse helps prevent stlffnesa,
^Aj-i^ i
choose yotir food Tnom oaoh of the foldomng four main
groups every ddy i
h fruits and ^gotables - eat four or /tee servings
eVirydapi,
&dlry pnodUOtb » including mlhi OhOeoO or iOS OrOOn,
2
- 2 -
J. Meats - Four to Mia: ounce of meat or Its equivalent each
An average serving is three ounce,
day,
The following food
provide the equivalent of three ounce of meat.
Two eggs, one
cup of baked beans or four table spoons of peanut butter,
4, Dreads and Cereals, including rice and pasta - fibre
from whole grain bread, three to five slices each da\, is
highly beneficial.
Concentrate on Calcium intake to promote healthy bones.
Two glasses of milk each day are enough, but three glasses are
better.
If you do not like milk the following foods contain
the same amount of Calcium as same amount is in one glass of
milk.
Two slices of cheese, one cup of.yogurt, or four table
spoons of skimmed milk powder.
Eat plenty of fibre, whole grain bread is a good fibre
source bran, beans, fruits and vegetables also provide fibre.
C: AID ID ACCIDENTS. S
Look for dangers inside and outside.
Make modification
(such as ramps, railing, supports) if necessary.
If your balance is poor, seek advice from your doctor.
use assistive devices such as a Cane or Walker.
Plan your
j
activities for safely.
If you fail, think about how it happened and determine how
it could be prevented in the future.
Tell your doctor about it.
Do not go out alone.
Do not rush especially at night and in bad weather.
D: KEEP, INVOLVED :
Keep informed about the news.
Hake an effort to visit your friends and make new friends.
If you are alone, keep yourself busy in various activities visit other senior citizens, or visit temples, or visit home for
5
- 5 -
Elders and get involved in these activities.
YWRSJSL? :
Es
You know if you arc overweight or smoke or drink too much.
Admit your isoaknoss and work to improve them.
Your health
i-j your responsibility,
It is novar too late for -you to bonefit from cutting back
on excess
or stop smoking.
TOUR FAMILY PHYSICIAN I
F •
Your family physician
is trained to help maintain your
health.
Four family physician will check your blood pressure, perform
cancer screening checks look for "hidden illnesses", you may not
be aware of, identify factors that increase your susceptibility to
illness and take measures to ensure your good health.
See your family physician at least once a year.
“EliERA L REPORT. - SYMPTOMS :
You must report any mental or physical problems to your
doctor.
Many older persons unnecessarily live with excessive
stiffness, shortness of breath, tiredness insomnia, or even
incontinence because of the misconception that is "Just Old Age".
Also be sure to report symptoms even if they mildly
inconvenience you, such as swelling, changes in bowel habits,
^^tered appetite, weight change, or altered sleeping pattern1s.
These symptoms should be evaluated by your family physician.
Early treatment of such problems before they become more difficult
to resolve will aid tn maintaining your best possible health.
Tfis goal of treating the elderly is not always to prolong
their life - But add LIFE to their years and -Not years to their
Life.
G^f2- -1 .
WComp4\d\VcrbAutopsy-Badwani\VA-Adultl.doc
Verbal Autopsy Questionnaire - Adults
(Above 15 years of age)
1.
Preliminary Information
Date of interview:
Name of the deceased:
Age in years at time of death:
Sex:
Male/Femalc
if FemalePregnant/Lactating/Neither
Age of eldest living child
d. Marital status
* Married * Unmarried
* Widowed
^Divorced
Separated
e. Address:
a.
b.
c.
d.
f.
g.
h.
i.
Name of the informant(s)
Informant’s relation to the deceased Who, among the informants, was present at the time of the fatal illness?
Occupation (give details of type of work)
i) Working person, active till death
ii) Working person, stopped working for some period before death (specify period)
iii) Not working person
j.
Family structure - Nuclear I Joint
Total No. of Members
Male adults
Female adults
Children
k.
Income and food supply: (Relates to the family)
Agriculture:
Total Land owned
Irrigated land owned
Crop from last harvest was sufficient to adequately feed the family till which month -
Wages:
Work as agricultural labour - No. of days in last 6 months
Work on Govt, relief works - No. of days in last 6 months
Work outside the village- No. of days in last 6 months
Daily WageDaily WageDaily Wage-
Any other source of income:
Has the total income during last six months been sufficient to adequately feed all family members?
Were all the family members eating usual quantity and quality of food at the time of death of the deceased
person?
If there was a decrease in the dietary intake, what was the approximate proportionate decrease (proportion of
usual)? Which items in the diet specifically were decreased Foodgrains (Maize, Wheat, Jowar, Rice etc.)
Pulses
Vegetables
Oil, milk etc.
Meat, eggs, fish etc.
In the last six months relating to the deceased and family -
\\Comp4\d\VerbAutopsy-Badwani\V A-Adult I .doc
Were any unusual or ‘famine’ foods being eaten (roots, tubers, leaves etc.)
Any substances being eaten to suppress hunger?
Was the family purchasing PDS rations ?
Was the family availing of drought relief ? If so in what form?
Any other deaths in the family in the past one year?
Deaths of cattle or other animals
Distress sale of cattle, vessels, implements and other belongings to obtain food
Borrowing or beggmg food from neighbours, relatives or others
1.
m.
Personal habits
i. Smoking
Yes
If yes
Duration
Bidi / cigarette per day
ii. Alcohol
Yes
If yes
Duration
Quantity per day
Date of death
Day
Month
No
No
Year
n.
Weather at the time of Death:
Extreme cold / Extreme heat I Neither
o.
Place of Death
i. Home
a. Staying alone/ With family
b. Families in immediate neighborhood:
ii. Lack of access as being trapped, lost etc
iii. Health centre / Hospital
iv. On the way to Health Centrc/Hospital
v. Any other
Yes/No
p.
Whether Death Certificate Available
i. Yes/No
ii. If not why
iii. If yes
Mention Cause of Death as certified
2.
Medical history related to death
2.1
2.2
Was the deceased seeing a health care provider before death: Lyes 2.no
If
yes.
specify
(name,
profession,
2.3
2.4
For how long:years
2.5
2.6
Was the deceased taking any medication: Lyes 2.no
If
yes,
specify
(ask
for
remaining
2.7
2.8
Was the deceased hospitalized before death: 1 .yes 2.no
If
yes,
specify
where
For
what
(specify):
complaint
containers
address.):
/
unused
(name,
medicines):
address):
WComp4\d\VerbAutopsy-Badwani\VA-Adultl.doc
2.9 For how long:days
2.10 When did the deceased leave hospital (before death):
days
2.11 Did the deceased undergo any surgical operation during this hospitalization: l.ycs 2.no
2.12 If yes, when (before death):days
2.13
2.14
Do you know what was the operation: l.yes 2.no
If
yes,
specify
2.15 Was the deceased or any member of the family ever told the nature (the diagnosis) of the illness:
1. yes 2.no
2.16
If
yes,
what
was
it
(specify
as
clearly
as
possible):
Was there any accident / poisoning I bite I burn or other unnatural event shortly before deathl.yes 2.no
2.17.1
If
yes,
what
was
the
accident:
2.17.2 If yes, specify hours / days before death:
2.18 Where accident occurred: 1. at work 2. road (vehicular accident) 3. al home 4. other (specify):
2.19
Organs/part of body injured during accident
Other unnatural cvents• Drowning
• Poisoning
• Hanging
• Bite by snake or other venomous animal
• Burns
• Violence
• Any other (specify)
How long before the death did this event take place? (Hours /days)
2.20
Details of the event (in case of poisoning, what agent was used; in case of violence, what type of violence
etc.)
________________
3.
Specific disease related information
3.0 Open ended question about the illness According to what you know what did the deceased die of and how? Please narrate.
(All questions in the sections below pertain to the illness immediately preceding death unless specified
otherwise)
WComp4\d\VerbAutopsy-Badwani\VA-Adulll.doc
3.1
Cardiovascular system
3.1.1 Did the deceased ever complain of unusual breathlessness? : Lyes 2.no
If yes, was it on:
3.1.1.1 Exertion: 1. yes2.no
If yes, how much exertion: 1. Walking on level surface 2. Walking up an incline 3. Climbing stairs
3.1.1.2 Breathlessness while lying down flat: Lyes 2.no
3.1.1.3 At night, relieved by sitting up in bed: l.yes 2.no
3.1.2 Did the deceased ever complain of chest pain: l.yes 2,no
If yes:
3.1.2.1 Was it persistent for several hours: l.yes 2.no
3.1.2.2 Was it relieved by rest: l.yes 2.no
Was it accompanied by excessive sweating: 1. Yes
2. No
3.1.3 Did the deceased ever complain of cyanosis on the lips, fingers or nails: l.yes 2.no
3.1.4
Did the deceased ever complain of swelling on the body (the lower limbs, foot and leg, eyelids,
abdomen, back) especially if lying down: l.yes 2.no
3.1.5 Did the deceased ever complain of an episode of palpitations (sudden rapid heart beats for one hour or
more): l.yes 2.no
3.1.6 Did the deceased ever complain of recurrent sore throat, joint pain and inflammation (migrating,
fleeting and affecting several joints):
l.yes 2.no
3.2
Respiratory system
3.2.1 Did the deceased have cough: l.yes 2.no
3.2.2
Dry cough / Productive cough
If productive, was the sputum:
3.2.2.1 Clear and sticky: l.yes 2.no
3.2.2.2 Yellowish or greenish: l.yes 2.no
If yes, whether large quantity of sputum and offensive smell: l.yes 2.no
3.2.2.3 Stained with blood: l.yes 2.no
3.2.2.4 Duration of the cough
Was the cough related to season ? If so, in which season was it worse?
3.2.5 Chest pain: l.yes 2.no
If yes
3.2.5.1 Was it increased with cough and I or deep breath : l.yes 2.no 3.2.5.2 Was it localized and tender: l.yes 2.no
3.2.6
Wheezing: l.yes 2.no
3.3 Digestive system
Did the deceased ever complain of:
3.3.1 Abdominal pain l.yes 2.no
If yes, since when ?
was the pain:
3.3.1.1 Persistent: l.yes2.no
3.3.1.2 Localized over one area: l.yes 2.no
If yes:
3.3.1.2.1 Central abdomen: l.yes 2.no
3.3.1.2.2 Right upper abdomen 1 .yes 2.no
Left upper abdomen l.yes 2.no
3.3.1.2.3 Lower abdomen l.yes 2.no If yes then - left side / right side / entire lower abdomen
3.3.1.2.4
Loin radiating to the groin (inguinal region) and / or the testicle of same side :
l.yes 2.no
3.3.1.2.5
Relieved by meals (food): l.yes 2.no
3.3.1.2.6 Aggravated by meals (food): l.yes 2.no
\\Comp4\d\VerbAutopsy-Badwani\VA-Aclultl.doc
3.3.2 Persistent heartburn: Lyes 2.no
3.3.2.1 Was it sometimes accompanied by water brash (belching of sour fluid in the mouth :
l.yes 2.no
3.3.3 Diarrhoea: l.yes 2.no
If yes, was it:
3.3.3.1 Acute (less than 15 days)
3.3.3.2 Chronic (more than 15 days)
3.3.3.3 Accompanied by blood l.yes 2.no
Alternating with constipation: l.yes 2.no
3.3.4 Vomiting blood: l.yes 2.no
If yes:
3.3.4.1 Was the b’??d: 1.bright red 2.da*k brown
3.3.4.2 Did this vomiting of blood last until death: l.yes 2.no
3.3.4.3 For how long before death:T
month(s)
3.3.4.4 Was ;.;c deceased or any member of the family informed of the nature or the cause of this
vomiting blood: l.yes 2.no
If yes:
3.3.4.5 What was it
3.3.5 Normal stools with blood in the stools: l.yes 2.no
If yes:
3.3.5.1 Was the blood: l.red 2.dark brown
3.3.5.2 Did the symptoms last until death: l.yes 2.no
If yes:
3.3.5.2.1 For how long before death:month(s)
3.3.5.3 Was the deceased or any member of the family informed of the nature or cause:
l.yes 2.no
3.3.5.3.1
What
was
3.3.6 Jaundice: l.yes 2.no
If yes:
3.3.6.1 For how iong before death:days
3.3.6.2 Did jaundice last until death: l.yes 2.no
3.3.6.3 Was the deceased or any member of the family told of its nature or cause:
l.yes 2.no
If yes:
3.3.6.3.1
What
was
Did the patient receive any injection oi blood transfusion in the six months prior to developing jaundice?
3.3.7 Persistent vomiting: l.yes 2.no
If yes:
3.3.7.1 Did it last until death: l.yes 2.no
'____________ days
3.3.7.1.1 What was the duration: (before death):days
3.4
Urinary system
Did the deceased ever complain of one of the following symptoms:
3.4.1 Pain in the loin radiating to groin (see abdominal pain, 3.3.1):
l.yes 2.no
\\Comp4\d\VerbAutopsy-Badwani\VA-Adult 1 .doc
3.4.2 Blood in urine: l.yes 2.no
If yes:
3.4.2.1 Did blood in urine last until death:
l.yes 2.no
If yes:
3.4.2.1.1 For how long (before death):
3.4.2.1.2 Was Blood in urine ever associated with pain:
l.yes 2.no
3.4.2.2 Was blood in urine:
1.persistent 2.intermittent
3.4.3 Problems in urination: l.yes 2.no
If yes:
3.4.3.1 Decreased volume of urine: l.yes 2.no
3.4.3.2 Complete retention of urine lasting for more than a few hours:
l.yes 2.no
If yes:
3.4.3.2.1 Was this retention:
1.recurrent 2. transient
3.4.3.2.2 Did this retention last until death:
1. yes 2. no
month(s)
3.5 Infectious diseases
3.5.1 Did the deceased ever complain of fever in the month prior to death:
1. continuous 2. intermittent 3. never complained
If continuous or intermittent:
3.5.1.1 Did fever last until death: 1. yes 2 no
If yes:
3.5.1.1.1 For how long before death:days
Was the fever on alternate days or every day al a fixed time?
Were there chills / rigors accompanying the fever?
Was there continuous fever for more than one week?
3.5.1.2 Was the deceased or any member of the family ever informed of the nature of the diagnosis
of this fever: l.yes 2.no
If yes:
3.5.1.2.1 What was it:
3.6 Reproductive mortality
If the deceased is a female aged 12-50 years:
3.6.1 If married and living with her husband OR separated, divorced, or widowed for less than 3 months,
did she complain before she died of:
3.6.2.1 Continuous fever: 1 yes 2. no
3.6.2.2 Vaginal bleeding: 1. yes 2. no
3.6.2.3 Abortion (up to 42 days (6 weeks) before death): 1. yes 2. no
3.6.3 Was she pregnant and delivered before her death (up to 6 weeks before death) regardless of gestation
age: 1. yes 2. no
If yes:
3.6.3.1 Where did the delivery take place: 1. hospital 2. home 3. other
(specify)
Any significant symptoms or events related to the pregnancy or delivery
• Unusually large amount of vaginal bleeding before / during / after delivery
• Convulsions
• Inability to deliver within 24 hours of onset of labour
\\Comp4\d\VcrbAutopsy-Badwani\VA-Adultl .doc
Severe continuous pain in the abdomen during labour
Pain in lower abdomen with fever I foul discharge after delivery
*
•
3.7 Malignancies
Did the deceased ever complain of:
3.7.1 The presence of any mass or tumour in any part of the body: l.ycs 2.no
If yes:
3.7.1.1
Where:
(specify,
if
a
woman
emphasize
mass
in
breast)
3.7.1.2 Did this tumour persist until death: l.yes 2.no
3.7.2 Continuous loss of weight with no apparent reason l.yes 2.no
3.7.3 Abnormal vaginal bleeding aside from the menstrual cycle especially after menopause
3.7.4 Lump in the cheek / tongue
3.7.5 Was the deceased or any member of the family ever informed of the possible existence of a
malignant tumour or growth: l.yes 2.no
If yes:
3.7.4.1 Where in the body (specify as clearly as possible):
3.7.4.2
What was the outlook for the patient: 1.not mentioned 2.good 3.reserved 4.bad (fatal)
3.8 Other
Did the person have obvious loss of weight in the three months prior to death?
Did the person have paralysis / extreme weakness on one side or a particular part of the body?
Did s/he have severe continuous unremitting headache ? If yes, was there accompanying fever and inability
to bend the head forwards?
Did s/he have convulsions? If yes, did these last until death?
Was the body stiff/ arched back for some hours or days before death?
Was the person unconscious before death? if so, for what duration?
4.
Specific information related to malnutrition/starvation
4.1
Food intake (semi-quantitative) - here the interviewer has to estimate the caloric intake if
possible based on detailed dietary history.
Daily intake during the week prior to death
Morning
Noon
Afternoon / evening
Night
Other meals / snacks
(Quantify exact amounts of roti, rice, ghat / rabdi (porridge), dal etc. as far as possible)
Daily intake during the month prior to death
Morning
Noon
Afternoon I evening
Night
Other meals / snacks
Any abnormal or unusual foods being consumed:
a.
4.2
b.
Water intake - Normal I reduced / do not know
Source of Water -
\\Comp4\d\VerbAutopsy-Badwani\V A-Adult 1 .doc
4.3
Did s/he complain of
a.
Constant complaint of hunger
b.
Loss of feeling of Hunger
c.
Dizziness on standing up
d.
Extreme weakness and inability to walk
e.
Inability to see at night
4.4 What were the observations of the family members regarding the deceased person:
a. Eyes: Sunken/Normal/Do not know/
b. Skin: Creases, wrinkles over forehead and face as usual/Increased / Do not know
Normal / Scaling or peeling / Do not know
c. Hair: Normal I Dry or discoloured I Falling hair I Do not know
d. Cheeks : As usual/ very sunken /Do not know
e. Ribs: As usual / very prominent/ Do not know
f.
Limb bones : As usual / prominent/ Do not know
g. Abdomen: As usual/ very sunken /Do not know
h. Hipbones : As usual/ prominent and projecting /Do not know
i.
Tongue: Dry I coaled or fissured / Do not know
Normal pink colour/ very pale or whitish / Do not know
j. Lips: Normal I Dry or cracked / Do not know
Corners of mouth: cracked I normal I do not know
k. Gums : bleeding, loose teeth I normal I do not know
1.
Swelling over Ankle
Y/N
If yes T unilateral I bilateral
Face
:
Y/N
Upper limbs:
Y/N
m. Palms and nails: Normal pink colour / very pale or whitish / do not know
ii.
Body temp : Cold / Normally warm I Do net know
o. Bed sores : None I If yes, site : Shoulder blade/ Hip/Lower back / Calf
p. Behavioral changes: None /Muttering or irrelevant talk / Unconscious
5.
Presumed cause of death
5.1
From
5.2
death
From
5.21
certificate
verbal
Immediate
if
available:
autopsy
form:
cause
of
death:
causc(s)
of
death:
5.22 Underlying cause(s) of death
5.23
Contributory
Questionnaire modified from - Mortality and causes of death
96:assessment by verbal autopsy
S.A. Khoury, D. Maissad, T. Fardous,
Bulletin of the World Health Organization, 1999, 77 (8)
in
Jordan
1995-
Page 1 o£,3
voiTimUniiy Heaiih Ceil
from:
To:
Sent:
Subject:
American Academy of Anti-Aging Medicine" <newsietter(g;a4m.org>
<chc@sochara.orq>
Saturday, June 19, 2004 7:20 AM
BioTech C-Newsietter
Special Conference Hotel Rates at the Chicago Anti-Aging Expo
A4M has secured a special rate at the Hyatt Recency Downtown. Once these rooms are gone, you will miss out on the opportunity to
stay at the event hotel. Neighboring hotels 2 or 3 blocks away are approximately $100 per night more. Lock in savings and'
convenience for the most comprehensive worldwide conference in Antl-Aglng this year by registering today.
/
Home | About A4M | Membership | Anti-Aging Libraiy | Directory | Store | What's Hot? | Newsletter | Media | Site-map ] Contact /
READ,-TIME
«r»1i
Ilf AjUsiMW £Wi is
11
WIW S.
S. SU/'Jt 1»JKk »««!■«»»& « i.
lssue:June 16, 2004
Compiled by WorldHearth.net
Al IWtS WHHtt
.
w . w «-
Minutes
Umbilical cord blood transplants, bone marrow transplants save lives
A4M is a nonprofit
international
medical
society
representing
12,500
physicians,
SCUnusU,
health
r Nursing Home Residents with Alzheimer's Disease Benefited
Continuous Treatment with ARIGEPT® (donepezll HCI tablets}
from
73
countries
worldwide. Join Wow
Stem cells from pudge could regenerate nervous system
from
+ A small portion uf dark chocolate a day keeps head attacks and stiokes
away
< PAT INTO BRAIN
+ METABOLIC AGING : Theory Turned Upside Down
Seven-year study In mice suggests that longer life comes from higher metabolism, not lower
+ Cause of Aging Connrmed
Mitochondrial DNA findings suggest that reversing damage in cellular power plants could increase
longevity
1 Hormone Therapy: Not So Bad After All?
Variations in astrogan and nrogastin drugs may avnlain nagativa findings
r Scientists smuggle drugs into tumors
-' Cigarette smoke transforms heaithy saiiva into a deadly cocktaii that can
accelerate mouth cancer
Dr. Nicholas Perricoiie, MD, J-ACN
Nicholas renicune, MD, FACN, is o buuiu uwlineu clinical and
dsrrr,atvlogisL A brilKani scholar, Dr. Perricone completed medical school
just 3 years, graduating with distinction. Ho completed his
Pediatrics at Yal/ Medical Schoo! and his Dermatology
Medical Center -Dr Perricone is regarded as the Father of the
Theory of Agin/ He is the author of the two New York Times # 1 Best
The Perricon/Prescription, A Physician's 28 Day Program for Total
Face Rejuvenation. (HarperCollins Aug 2002) and The Wrinkle Cure
Books.) Dr/Perricone's also hosts a series of award-winning Public
specials .airing nationally on PBS-TV. In September 2003, Dr.
launcneg me Acne Prescription on ine looay snow. His next
perricone promise, will be published by Werner Books in October
....
Umbilical cord blood transplants, bone marrow transplants save lives
umbilical cord blood and bone marrow transplants at Loyola University are curing or slowing
the progression of many cancers originating In the bone marrow (i.e., leukemia, myeloma) or
lymphatic system (lymphoma).
More than 106.000 people in the US each veer are diagnosed with these life-threatening diseases.
a>)4
®- UJk/*wU7'
6/21/04
Page 2 of3
even ii uuitti uuuiiiiwiut nuva piuuuuuu nu lesuiis, u uuuw uiuiiow udiispiuru may buve mu pmiwiis
Transplant Program at Loyola University Medical Center, Maywood, ill. ...more
Nursing Home Residents with Alzheimer’s Disease Benefited from
Continuous Treatment with ARICEPT® (donepezil HCI tablets)
fits.;, r Las Voqas, NV - Mav 13, 2004 - A new retrospective analysis
----treported that Alzheimer’s patients in nursing homos who wore
!S Z/’' -/■SK
’ treated with ARICEPT® for at least six months showed greater
<
,
fSS'
benefits In cognitive and functional status than patients who
“ /discontinued therapy.
’The findings, based on *
flS '
?re«aitA«
W
» "natiancity by nursing home
Sec-sty Mccp-g (AGS)’odcy. ...more
tB»RR8.W
.the American Geriatrics
TA smaii portion of dark chocolate a day keeps heart attacks;
and strokes away
;
American Academy of
Anti-Aging Medicine
1510 West Montana St.
Chicago, IL 60614
Z ZiWZB-HJVt)
If you eat a small portion of dark chocolate each day you reduce your risk!
of getting a heart attack or stroke, say US scientists in a new study.
Ths rsessrehsrs icuna insi asm cnocctaie is n:gn m ::svsno:cs. nisv&noiss.
come from plants and are commonly found In dark chocolate. Flavonoids’
improve the function of blood vessels and prevent the build up of cholesterol?
(the bad cholesterol)
more
|
L^uzyys; ■>■ FAT INTO BRAini
Siem ceils from pudge couio regenerate nervous system.
Adult stam calls from fat can ba turned into fully functioning brain cells.
suggesting a new approach to treating nervous system diseases.
Ric
: Duke University Medic
Cw»«ss< researchers with a virtually limitless supply of stem cells to treat a
jfcjjJgsr?
i 'C?»'vr MmaMtit number of nervous system disorders. ...more
aw -. i vg
ee^w
XmETABOLiC AGING ; Theory Turned Upside Down
Seven-year siuuy in mice suggests that longer life comes from higher metabolism, not tower.
MIMice with a high metabolism live longer than their low-metabolism
s?j counterparts, a finding that conflicts with a long-held theory of aging and
:".;j suggests new approaches to extending lifespan.
8W* - JQiflAOl
:
' , ■
I •
W A6cN'-0»t5wT«dayT
i
f
yw ” y I The finding* come from a aeven-year study of mice by UK researchers from
the University of Aberdeen, the Rowett Research Institute and the Medical
Council in Cambridge ...more
'W':1
- Cause of Aging Confirmed: 'nftochondriul DMA findings suggest that
reversing damage in ceiiuiar power piants couid increase longevity
Stopping the clock: Genetic mutations in ceii power piants appear to speed aging, suggesting
irdJROiiaLwgi that
reversing the damage could increase longevity.
Genetic mutations that accumulate in the DMA of mitochondria—the power plants in <
the lifespan of mine, confirming a cauee nf aging and niiggnefing ways tn slow H down
i ne findings, by researchers at the Karoiinska institute in Stockholm, Sweden, reveai a fundamental
biuiuyicui mudnaimtin uiiduilying the aging piuuwsa. ...iiiviu
i *«W! ••( + Hormone 1
,
-<*•:■ .,;-,..x--; i x;';:,-: ><--> . ;-.:••,-:-;x
<»M(U4«.WV>..1W,*
I Pills popped?
, a new study su
py: Not So Bad?
such as Premarin have been found risky, butg^w®Hw>«\u^i:
? other types of hormone therapy.
si
rJ»5t.W<3ajts3&<i Adt- |
Differences i
not rule out I
en end progestin drugs mean that women should »g»• therapy after menopause despite highly publicized 8S"-
6/2 i /04
Page 3 of 3
^Scientists smuggle drugs into tumors
Disguising a molecule to get It past the body’s immuno system could greatly enhance the
success of a groundbreaking new therapy, Cancer Research UK scientists report in the British
Journal of Cancer’ll) this week.
direcilv to tumors. But because the therapy uses an enzyme*(3) not naturally found in humans, a
patient's immune system can recognize and relect the enzyme before it can do its job. ...more
Cigarette smoke transforms healthy saliva into a deadly. cocktail
srette smoke transforms healthy saliva into a deadly
'■ icancer, according to new
I thatlean:
i
accelerate imouth
i thei British JournalI of Cancer.
va prev
wH *
B §;
s s s s s;
buffc
D
'ZVVrw & B
mv©
«r <
Mltehal! Chen, D.O., Ph.D., Medical Director of Florida Institute of Health,'Claotvrater, FL
Michael Ktentzc, M.D., Ph.D., Mediae! Director, Klentze Institute of AntfAginj, Munich, Germany
’ Patrick Quillin, Ph.D., DR, Ckfl, Clinical Nutritionist, Center ter Advenes Medicine, San Dieje, CA
* Nick Martin. M.D., Lancaster Family Health Center, KY
/
▼ Mirhnol Rrp«n M D , Principal. Hr Michnal Rrann Aasnc Winnntka. II
* Ed Lichten. M.D., Clinical Instructor. Wayne State College of Medicine. Detroit, Ml
• Charles Simone. M.D., Director, Simone Protective Cancer Center, NJ
+ Regenerative Medicine
.
/'
* Latest Cosmetic I Derm Procedures /
+ ninhnfns / Metabolic Syndrome X/
+ BioJdentical HRT
/
Medical Spas
/
•t- Growth Hormone Therapy/
+ DNA S Mitochondrial Repair
+ Obesity Drugs, Bariatric Surgery
The BioTech E-Newsietter is a FREE SERVICE ephe WortdHeahh.net the official vrobsite of the American Academy of AntLAgins
Medicine IA4M) This message is brought tn you >as a valued subscriber of the Academy, or as a visitor or attendee to one of the
Academy’s Web sites or Conference. You are subscribed to this newsletter with the email address chc®sochara.org. To stop receiving
this email from the American Academy of Anti-Aqing Medicine, kindly dick here: http://www.worldhealth.net/p/121.html to
UNSUBSCRIBE
/
6/2I/04
^uiiiinuiiiiy Heaiui Osrii
ur.Kiaiz <evenr(d^worianeaun.nei>
<chc<ateochara. ora>
Thiircw4pv Aoril 1
9004 A -37 am
Dear Colleague,
CVCIiiS vi uiC yCoT With tliC 12tli
Annual world Congress on And-Aging Medicine in Chicago, August 20-23, at the Hyatt Regency, and again in Las Vegas
at the Mandalay Bay Resort, December 3-5. This is my personal invitation to you.
training, and advanced biotech information to over i 00,000 healthcare professionals.
For vniir convenience T^e included links to the following important resources
• 12th Annual World Congress on Anti-Aging Medicine flier, speakers, topics, and registration.
http://www.worldhealth.net/event/
? Our latest Biotech B-hley/sletter of breakthrough technologic for °g*ng ^tervention?.
xituiJ.//WWW. WOilUuCdiui.IiCu Cdil/ a-tlii
v-t vU.liiiiil
• Uur Society's official web site, www.wondheaith.net: ihe ff I source ibr anti-aging medicai information. You can
find application information for our society as well as board certification information and requirements tor the
American Board of Anti-Aging Medicine.
thanks tor taking the tune to review this correspondence. We look tbrward to working with you, and hope you will join us
at our Aueust conference in Chicago. If you have no interest check here and T will remove you from my personal private
nest ri otessionai xsegaius.
Dr. Ronald KJatz MD, DO, EAOAJSM
President of the. American Academy of Anti-Aging Medicine
4/ i 5/04
1■
Page I of 2
Community Heaiin Ceil
from:
To:
Sent:
nttaCri:
Subject:
"Network: lUFH secretariat" <Secrerariar-Neiwork(g)Nt: i WORK.UNiMAAS.NL >
<HLT-NET@NIC.SURFNET.NL>
.Monday, June 21, 2004 5:27 PM
G! >ETSi sllowshipApplication.doc
Feiiowship opportunity; Community Based Care for the Eideriy
> «GHETSFcl!cw’shipApplication. doc»
Dear Colleagues,
> GHETS is verv pleased to announce the availability' of fellowships to
> support the development of the Network" TT TEH Elderly Care taskforce at The
> Network: TUFIPs annual conference in Atlanta, Georgia, USA, from October
> 6-10, 2004. Tins year, GHETS is uueiuig partial fellow slaps to support
> travel to the .Network: TUFH conference for colleagues in developing
> countries with a demonstrated commitment to community based care for the
> elder!v and an interest m narlicmatinv in anil leadin'* (he activities of
> the Network' TUFH elderly care taskforce
> The number and amount of fellowships awarded by GHETS will be determmed
> according to criteria established by the Executive Committee of the
> Network: TUFH Elderly Care Taskforce. Please be aware that applicants
> from high income OECD countries arc not eligible tor GHETS fellowship
> funding.
> To be considered for a GHETS fellowship, applicants must:
> 1 Cnnmir and receive approval for an abetrart describing their work in
vummumty based care for the elderly. Abstracts must be submitted on-lme
> at httpvTwww.the-networktum.org/conierence/abstracis.asp by July 1.
> 2. Complete the attached application (2 pages) and return to GHETS,
> mailto:bridget@ghets.org) no later than Thursday, July 1, 2004.
> 3. Submit all required supporting documentation including a signed letter
> of support on institutional letterhead from the leadership of the
> applicants1 instinition by July i, 2004.
>
> Applications should he submitted via fax (270-514-1741) or email
> (brideet@,ghets.erg) by July 1,2004. Fellowship recipients will be
> uuLureu uy miu-Juiy.
> Please note that elderly care fellowship funds are extremely limited. The
> Executive Committee anticipates (hat awards will only partially cover the
> expense of attendance at the Network: TUFH annual meeting. Applicants orc
> encouraged io seek other sources of support, including their institutions,
> tor conference-related expenses, and to base estimated expenses on the
> most cost-cffcctivc arrangements available. Cooperation in keeping
> fellowship funding requests as low as possible is greatly appreciated, and
> will allow GHETS to support as many qualified applicants as possible.
> Please undertake the following steps as soon as possible:
> * Register for The. Network: TUFH 2004 annual conference in Atlanta,
> Georgia, USA, 2nd make your hotel hooking; see
> hily://www.lhe-nelworktu£ii.or&zconfervncc/regiBtralioiifonB.asp. Please be
> aware that the eariy registration deadline is July 1, 2004.
> * Request a letter from The Network: TUFH to support your visa application
> by confirming your registration for the conference: see
> http://www'.the-networktufhlorgk:onfcrcnec/informstion.asp and click on
> Visa AppliCtttiuii
> ♦ Apply for a US visa, it required; see
> www.travel.state.gov/visa services.html for visa application information
0/22/04
Page 2 of2
‘ > (this process should be started as soon as "ossiblc'
** Tvi&ftc ail line icScTVauuilS
>
> Ifvou have anv questions about the application process, please contact
> the GRETS office at hridpet@phets orp, We look forward to welcoming the
> future leadership of the Network: TUTU Elderly Care Taskforce in Atlanta
**• uub Oviuuci.
>
> Sincerely,
>
> Chair, Network: TUFH Elderly Care Taskforce
> Elisabeth Bmyere Research Institute, Ottawa, Canada
> Of. Ahrflharn Tngpnh
Past Clioir, Network: 1 Cl II Elderly Care Taskioicc
> Director. Schiemem Leprosy Research & Training Cire
> Karagiri, Vellore District, India
>
Coorduialor, Network: TUTT! Elderly Care Taskforce
> Executive Director, Global Health through Education, Training and Service
>(GHETS)
>
>■ 2 ndget CsnnifF Fellini
"> Coordinator, Network: TUFH Elderly Cure Taskforce
> Director of international Programs, Global Health through Education,
> Training and Service (GHETS)
You have received Ulis message because you aie subscubed io HLT-NET, an
email list for The Network: T owards Unity for Health
IMPORTANT:
a) DO NOT send a message to <HLT-NET@nic.surfcct.nl>
b) DO NOT 'reply' io this message
Should you need assistance, please contact sccrctariat@nctwork.iinimaas.nl
(the electronic sendees assistant at the Office of The Network: Towards Unity for Health)
For subscription, unsubscription, list-archives,
you can visit the lists homepage:
http://nic.sui'ftet.nl/archives/hlt-net.html
6/22/04
I
J
‘Ifiisfestivalrefi&idl& many memories of
A floppy (Diwali
- A
Dear Friends,
Diwali is here, the brightest day of the year. A time for radiance,
generosity and goodwill, a time when we count our blessings, and
spare a few thoughts for those less fortunate than us.
It does not take much to make a difference. A small contribution
from you will go a long way to spread joy and happiness in the lives
of the destitute elderly, by supporting:
o
Cataract Operation, thereby giving precious gift of sight.
©
Our Adopt-A-Gran Programme, thus ensuring that their basic
necessities are provided for.
®
Our Mobile Medicare Programme, whereby we provide free
medical treatment to the poor elderly living in slums and
villages all over the country.
©
Our Cancer Detection
.
and Care-giving
.Programme for the poor
1
suffering community to ensure
timely support for the victims.
•
Our Counselling / Training for
the Care-givers of the
Alzheimer patients.
•
Our Day Care Centres, Old
Age Homes and Home
Care Initiatives.
As the sparkles come out on
the eve of Diwali, let us also
send rays of kindness into
the twilight of veteran lives.
Once again we wish you
A Happy Diwali.
Yours sincerely,
c..
Mathew Cherian
Director General
---------------------------------------------------------------------<Vq\ 7 (Since
1993, all donations to HelpAge India are 100% TAX Exempt under section 35AC and 80GGA of Income Tax Act,
v
■
1961 for projects covering medical care to old persons, leprosy and cancer patients, provision of homes to old persons,
rehabilitation of old women and conducting eye camps. Our application for renewal is pending with the Govt, of India)
Yes, I want to make a difference and see a smile on ageing faces this Diwali. Please accept my contribution of:
J Rs.1000/..Rs.1,500/J Rs.2,000/_l Rs. 2,500/UOthersRs
Cheque / DD No
Name
in favour of HelpAge India
Date
Address
Tel.:
22““ LLLLLLLLLLLLLLLL
.Valid upto
................. Cardholder's Signature
Name of Card.
CW No. (Last three digits of the number at the reverse of your credit card.
•Master Card / Visa card / American Express / Diners Card only.
For giving online donation
please visit our website.
www.heipageindia.org
. ........... .
(for Diners card only)
f] HelpAge India
C-14, Qutab Institutional Area, New Delhi-110 016
Tel: 51688955 - 59, Fax : 91-11-26852916
E-Mail: helpage @nde.vsnl.net.in
N D/D/04
THE END OF RAINES' REIGN:
The former executive editor,
left, says goodbye, as
Sulzberger, center, and
Boyd, far right, look on
mobilized the staff for all-out
.it the heads of the Times’s
traditionally had leeway in de
flstories to cover, and as the cri:-nd Raines’ top-down crisis
" lame business as usual, it be|■. He shook up the staff, giv. signments to cronies. He was
'domineering. He launched a
■;a;nst the Augusta National golf
■ bn of women and then was at
Hresponsible for spiking two
|Bns that didn’t square with the
on.
■, many successful leaders are
H s—your boss, perhaps. But
imed Raines’ leadership into a
H sue. That Blair, a smooth talk
fl ated himself with Raines and
^B long uncaught despite wam^B sloppy work was blamed on
ig favorites and his unwilling
ness to listen to others. “This was very quickly not about Jayson Blair,” says a Times staff
member, “but about Howell and the star sys
tem he created. The level of anger was just'
out of control.”
Sulzberger, who often tells interview
ers about the importance of making mis
takes in life, stood by his editor when the
crisis broke, saying he would not accept
Raines’ resignation. But Sulzberger also
took an aggressive role in trying to gauge
newsroom discontent, including holding a
meeting of hundreds of employees in a
Times Square movie theater—which made
it clear that Raines and Boyd needed to act
very fast to fix morale. Among other things,
the paper appointed a committee to make
management suggestions—and began look
ing for other Blairs. Then came a second
scandal: Rick Bragg, a Pulitzer prize
winning feature writer, was suspended
after he filed a story about oystermen in
TIME, JUNE 16,2003
Florida that had been largely reported by
an uncredited intern. Bragg further en
raged the newsroom when he claimed that
Times national reporters did things like
that all the time. When Raines issued a
mild and tardy response, many of his peo
ple felt he had sold them out.
The Bragg case caused a minor public
flap compared with Blair’s, but it was ulti
mately more damaging
to Raines. Journalists
started giving anti
Raines quotes to com
petitors; they ranted
against Bragg and Times
management on a popu
lar website for journal
ists. It didn’t help that
when Sulzberger went
to the Times Wash
ington bureau for a
brown-bag lunch, an
employee said, “he got
a harsher message than
he expected.”
Some have specu
lated that his family,
particularly his father,
pressured him to act,
but Sulzberger says
that although he talked
with family members,
he made the decision to
accept Raines’ resigna
tion himself. He also
insists that he did not
order the editors to
quit. “There was no
single ‘aha’ moment.
There was a sense from the two of them
that the hill that they had to climb was
becoming too steep. And that the cost of
that to the institution was becoming too
great,” says Sulzberger. “And, sadly, I had to
agree.”
Sulzberger named Joseph Lelyveld,
Raines’ predecessor-a measured manager,
liked in die newsroom—to be the interim ex
ecutive editor while a replacement search is
under way. Sulzberger tells Time he’s look
ing for a “great journalist” who is “an effec
tive leader and a manager”—which, in the
wake of the Raines war, may be more than
mere corporate-speak. “If employees are
happy and fulfilled,” he says, “generally what
they produce is good.” Times employees say
they are relieved to have a respite from the
turmoil with Lelyveld, who addressed the
newsroom Friday, ending with four simple
words: “Let’s go to work.”
—Reported by
Amanda Bower, Jodie Morse and Andrea Sachs/
New York and Vhreca Novak/Washington
35
HEALTH
THE AGE 0
ARTHI
i
WE’RE HEADED FOR AN EPIDEMIC I
ISE. WHAT YOU CAN DO TO PROTECT YOURS
By CHRISTINE GORMAN and ALICE PARK________________
THE FIRST SIGN IS OFTEN A TWINGE IN YOl
I
I
ORYOUR BACK
or some stiffness at the base of your thu
maybe you’re
getting out of the car and a sharp pain
from your hip to your calf. “Nothing serious,” you think. “I must
have just strained something. I’m too young to have arthritis.”
Think again. If you are within even shouting distance of mid
dle age, chances are you have osteoarthritis, a degenerative
disorder in which the cartilage—the natural shock absorber
that cushions the insides of your joints—begins to break down.
Doctors used to think of it as a disease of old age, but they now
believe that this form of arthritis, the most common of about
you’re still in your 30s, 20s or even younger. Most of the time
you won’t suspect anything is wrong until you’re in your 40s or
50s and begin to feel those telltale twinges, signs that the dis
order may be starting to affect your bones. By then the damage
has been done, and even the best treatments can’t do much
more than ease the pain and try to maintain the status quo in
what are already degenerating joints.
Photographs for TIME by Howard Schatz
KNEE
RHEUMATOID
ARTHRITIS
HEALTH
The Other Crippling Joint Disease
s debilitating as osteoarthritis can
be, it at least develops gradually.
That may not seem like much
consolation until you consider the
other arthritis—rheumatoid arthritis
(RA)—which in severe cases hits like a
freight train. "People who are jogging one
day," says Dr. Stanley Cohen of Dallas'
St. Paul Medical Center, "can’t get out
of bed two weeks later."
Although the symptoms can be
similar, the diseases are very different.
Osteoarthritis is focused on a particular
joint; RA is a systemic disease—an
autoimmune disorder in which the body's
defense system attacks the joints
through the thin layer of cells called the
A
COPING: Renoir kept painting only by
tying a brush to his gnarled hand
synovium that line and lubricate the
joints. The runaway immune response
clogs the synovium with infection-fighting
cells that release proteins called
cytokines. These are compounds that fuel
inflammation. The synovium becomes
engorged with new blood vessels and
begins to grow, kudzu-like, penetrating
and further damaging cartilage and bone.
The most visible symptoms of RA
are swollen joints and crippling stiffness,
particularly of the hands and feet. It can
cause fatigue, fever and loss of appetite.
It can also affect the heart and lungs
and their surrounding membranes. The
disease, which afflicts 2.5 million people
in the U.S., usually hits between ages
30 and 50, but it can strike at any age,
including childhood. It is three times as
common in women as in men and can
shorten life by a decade.
When RA was given its name in the
19th century, those who suffered from
it—including impressionist master
Pierre-Auguste Renoir—had little to look
forward to beyond life in a wheelchair.
Even in the 1950s, says Cohen, few
treatments were available other than
aspirin or cortisone, a powerful anti
inflammatory with severe side effects
when used at high dosages. Injections
of gold salts also provided some relief,
although no one really knew why.
Prospects have improved
dramatically—especially, says Cohen.
“if we treat early and we treat
aggressively." Dr. Anand Malaviya,
India's foremost expert on the
disease, warns that in Asia this
is a complicated order. In India
alone, he says, there are some
10 million people with RA.
Roughly 70,000 specialists would
be needed to treat them all; India
has between 50 and 100. The
shortfall is staggering" and the
consequences of misdiagnosis
severe. “Giving patients some
sort of alternative herbal cure or
therapy, or even magic, can be
disastrous. It can kill a patient,”
Malaviya adds.
Today the most effective
treatments are combination
therapies. Methotrexate, a
cancer drug that has been used
to treat RA for 30 years, is
augmented by other drugs, includ
ing the new but costly “biologies"
such as etanercept (Enbrel),
infliximab (Remicade) or anakinra
(Kineret). These are genetically
engineered versions of naturally
occurring molecules that bind or block
the activity of cytokines. Also in early de
velopment are drugs designed to reduce
the formation of the blood vessels that
feed the growth of the synovium.
Researchers have discovered a
genetic marker that is often associated
with RA's earliest onset and most severe
cases. Yet not all RA sufferers have the
marker (and vice versa), which makes
scientists wonder whether RA is a
single disease. Environmental factors
might also play a role, although no one
knows whether the trigger is a virus,
a bacterium or something else.
Autoimmune diseases are always
tricky. But even if RA doesn’t yield to
a simple fix, it is becoming easier to
manage for those who can get proper
treatment.
-By David Bjerklie
TIME, JUNE 16, 2003
too. I
&
and more
persistent
than typical
muscle
strain
In the U.S., estimates show there are
20 million people with arthritis, a number
projected to grow to 40 million by 2020.
Getting a statistical measure across Asia is
more difficult. And other, more deadly dis
eases tend to grab more attention. But
when you consider the estimates that do
exist for Asia’s arthritis victims—150 mil
lion in India, at least 65 million in China,
10 million in Japan, 1.6 million in Taiwan—
along with unanimous testimony from
doctors that the number of arthritic
patients is rising significantly, it creates a
picture that, for Asia’s nations and health
care budgets, looks a lot like arthritis it
self: painful in the short term, potentially
crippling down the line.
What’s more, many would-be patients
don’t know that something can or needs
to be done, or they don’t have enough in
formation to make an informed (and safe)
decision about their care. “Arthritis is a
huge problem in our society,” says Dr. Koh
Wei Howe, president of Singapore’s
Rheumatoid Arthritis Society. “There are
many sufferers out there who are not aware
of the available treatments. Some don’t
even recognize that they have arthritis.”
There exists, however, the possibility
of some relief amid all the aches and pains.
Researchers are paying a lot more atten
tion to osteoarthritis these days. They have
discovered that what they thought was a
fairly straightforward mechanical break
down of the joints is a much more compli
cated process with lots of component
parts. Although this means that patients
hoping for a quick fix are likely to be dis
BY 2020,
The situation with arthritis is about to
get worse—a lot worse—and very soon. It’s
almost as if we were watching the forma
tion of an epidemiological perfect storm.
Across Asia, as across the world, you have
an ever-expanding population that’s living
longer than ever before. You have old cul
tural and societal habits (squatting, pray
ing) and newer ones such as high-impact
exercise and video gaming that are adding
more and more stress onto the body, essen
tially putting a down payment on pain and
discomfort later in life. Top it off with a
generation of Asians who are heavier than
previous ones and whose weight is literally
squeezing the life out of their joints. All this
on a continent where education about
arthritis is limited, as is the expertise need
ed to treat a surging demand.
appointed, scientists are starting to gain
the kind of insights that can lead to more
effective treatments and better strategies
for heading off trouble before it begins.
How complex a process are we talking
about? Doctors used to think that cartilage
was the beginning, middle and end of the
osteoarthritis story. Now they know that
cartilage is important, but so is everything
that surrounds it—muscles, bones, tendons
and ligaments. The damage caused by
wearing ill-fitting shoes, suffering a foot
ball injury or spending day after day
stooped over in a field can certainly give
rise to arthritic joints. But the worst prob
lems often stem from basic differences in
tire body’s biochemical makeup. For exam
ple, some peoples cartilage seems to resist
damage better than others’. In addition,
ANATOMY OF
A BREAKDOWN
CARTILAGE: Made up of water,
proteins and sugars, cartilage is
the body’s shock absorber. Injury,
age and many other factors can
cause cartilage to break down, but
its cushion, bones start to grind
against one another
MUSCLES: These support the
fcints. The quadriceps, for
holding up the knee and relieving
some of the stress of walkingand
running. Weak quads can put too
much strain onto the joint, leading
BONE: While bone normally
responds to eroding cartilage by
sending out spurs and other odd
way around: changes in bone
of a joint can trigger a breakdown
in the cartilage
I TENDONS AND LIGAMENTS: By
N connecting and anchoring muscles
I and bones, these provide support
■■for the joint. If they are torn in an
BBtjury or weakened from lack of
0 use, the cartilage in the knee is
» forced to bear more weight,
W hastening its collapse
~—
INFLAMMATION: As cartilage
degrades, immune cells swoop in
to engulf and destroy the dying
tissue. In their zeal, they even
attack healthy tissue. The debris,
including toxic enzymes, can build
up in the fluid of the joint, causing
painful swelling
In their genes that control
cartilage formation and
can result in cartilage that is
weaker to begin with or that
degrades faster than it should
researchers have discovered an array of
biochemical messages that are traded
between bones, muscles and other parts of
the body and play a key role in keeping
joints healthy. “Ultimately, we think it’s the
biochemical approach that’s going to solve
the riddle of arthritis,” says Dr. Mitchell
Sheinkop, an orthopedic surgeon at the
Rush-Presbyterian-St. Luke’s Medical
Center in Chicago. “Someday you may pop
a pill and your cartilage will continue to
grow, but that’s 10 years away—at least.”
Until then, what doctors would like to
have is some kind of test that will identify
people in the earliest stages of osteoarthri
tis before too much damage has occurred.
That way their treatments might stand a
better chance of arresting the degenera
tive process before disability sets in.
Unfortunately, conventional X rays, which
give very detailed pictures of bone, don’t
provide very good images of cartilage. And
researchers haven’t yet discovered any bi
ological markers in the blood that reliably
tell them, “Hey, this person’s cartilage is
starting to fell apart. Do something!”
To understand the latest insights and
where they might be leading, it helps to
know a little bit about how a joint is put to
gether, and there’s no better place to start
than with the cartilage. Like so many tis
sues in the body, cartilage is composed
mostly of water. Indeed, you can think of
it as a damp sponge. The spongy part
contains several important components,
including the chondrocytes—cells that
generate new bits of cartilage—and various
molecules that give the “sponge” its struc
ture and help hold it together.
With every step we take, our moving
body puts pressure roughly equal to three
times our weight on the knees and hips.
As that pressure is distributed across
those joints, cartilage is compressed, ab
sorbing most of the load. And, as you
might expect with something that resem
bles a damp sponge, water is squeezed out
of the cartilage into the space between the
bones. Once the pressure is released, the
water flows back into the cartilage, carry
ing with it nutrients that were picked up
from the synovial fluid, which fills the
joint. This constant fluid exchange is
critical to maintaining healthy, pliable
cartilage and explains why joint-moving
exercises-such as walking-help delay
the progress of osteoarthritis.
Sometime between ages 40 and 55, the
activity of the chondrocytes starts slowing
down and the cartilage takes longer and
longer to replenish itself. As the cushion of
cartilage grows progressively thinner, the
bones begin to grind against one another.
This is a normal consequence of aging, but
aging isn’t the only culprit. Something as
simple as felling on an icy sidewalk or put
ting on some extra weight
increase
your risk of osteoarthritis. Anything that
puts extra stress onto the joints will wear
out the cartilage that much fester.
Now the first wrinkle: “It appears
that not all cartilage is created equal,”
says Dr. Roland Moskowitz, president
of the Osteoarthritis Research Society
International in Washington, D.C. Ankles,
for example, bear the same loads as knees
and hips. Yet most people, unless they’re
ballet dancers, don’t get osteoarthritis of
the ankle. Similar discrepancies exist in
non-weight-bearing joint? as well. The
wrist, for instance, is much less prone to
osteoarthritis than the joint at the base of
the thumb. It could be that ankles and
wrists have some mechanical advantage
that protects them from osteoarthritis. But
preliminary evidence suggests that the re
al advantage, at least for ankles, is bio
chemical: there is something in their
composition that allows them to bear
greater loads and respond to changes in
the joint with™:t breaking down
Some “vidftns’O frn tfris ?nrnft.c from related research on hones. Most people think
of bones as inert objects whose only job is
to keep our bodies from collapsing into a
puddle of flesh. But bones are actually
quite active tissues, constantly building
and rebuilding themselves from the inside
out. If you break a bone, the body produces
repair proteins that direct cellular activi
ties as the bone knits itself together. When
investigators take these sc called os
teogenic proteins anri sprinkle them on lab
samples of damaged -a~*.ioge, .he carti
lage begins to repair itself. "Now here
comes the interesting part," says Dr. Klaus
B RECUMBENT BICYCLE: The
reclining position takes the
burden off such susceptible
joints as the knees and hips
a WALKING: If it doesn't hurt
too much, walking is one of the
best ways to keep joints—from
the ankles to the shoulders—
from seizing up
a LOW-IMPACT AEROBICS:
Any exercise that doesn’t put
pounding pressure on the joints
can help build up muscle and
keep ligaments and tendons
flexible enough to give the
joints the support they need
WHAT YOU
CANDO
You don’t have to suffer. There
are many ways to find relief
DRUGS
There is still no cure for
arthritis, but many
medications can relieve
the pain in stiffjoints
■ OVER-THE-COUNTER
PAINKILLERS: For mild pain,
acetaminophen should be
your first choice, as it relieves
discomfort without damaging
the digestive tract. If pain
persists, your doctor might
recommend aspirin or
ibuprofen, which can reduce
the swelling and damage due to
inflammation; anti-inflammatory
drugs, however, can be harsh
on the stomach
■ COX-2
INHIBITORS: These
newer analgesics
tend to cause fewer
stomach problems
than traditional
anti-inflammatories.
But they are
expensive, and
recent studies have
linked them to heart problems
■ TETRACYCLINES: These
antibiotics were designed to kill
germs, but they can also slow
erosion of the cartilage
■ HYALURONIC ACID:
Injections of this natural
lubricant,
particularly in
the knee, can ease
pain for as long
as a year
ALTERNATIVE
THERAPIES
a BONE FUSION: Fusing bones
■ CORTICOSTEROIDS: Shots
of steroids, which reduce inflam
together with pins or plates can
mation, can provide a short-term
eliminate the pain caused by a
badly damaged joint; the joint,
fix for joint pain. Continued
If taking standard pain-relief
however, will never bend again
injections, however, can worsen
medications makes you
■ JOINT REPLACEMENT: When
a damaged joint by masking
uncomfortable, you may want
discomfort and enabling you to i the bones in a joint are damaged
to consider some of these
continue destructive activities. i beyond repair, a substitute joint
S
Because their pain is limited to
can in some cases be fashioned | alternative remedies
out of plastic or metal. Total hip i ■ ACUPUNCTURE: The Chinese 2
specific joints, osteoarthritis
’
replacement is the most common, I traditionally believed it relieves
sufferers don’t need the widerI pain by realigning qi (life
°
but almost any joint, including
ranging effects of
i energy). Western doctors think
j
corticosteroid pills
the knee, thumb, elbow and
; the judicious placement of
?
shoulder, can be replaced
■ TISSUE REPAIR: Failing joints ; needles might actually work by
;,
can cause surrounding muscle, i stimulating the release of endor- j
i
phins,
the
body's
own
painkillers
s
ligaments and tendons to tear
If pain persists,
or rip away from
■ GLUCOSAMINES: ;<
4
Preliminary evidence j
bones, requiring
surgery can either
'
1 suggests that these 5
surgery to reattach
relieve the pressure
.j-'W '.J supplements,
or repair them
on joints or replace
them altogether
vjr
derived from lobster 8
■ ARTHROSCOPY: In this
F'\
and crab shells,
. i9| might help relieve
5
minimally invasive procedure,
'$] arthritic pain
;
doctors clear away dying
3 possibly by
;
Moving arthritic
~
cartilage and smooth out
1
I
encouraging
_
_«
joints
might
hurt,
rough joint connections
cartilage growth 4MK
but if you don't
through slit-size incisions.
■ CHONDROITIN SULFATES:^?
exercise them regularly they
A recent study suggested that
can permanently freeze up
in some cases, arthroscopic
i Chondroitin is believed to
5
■ WATER WORKOUTS: The
surgery was no better than
; help keep cartilage from
i
buoyancy
of
water
can
help
you
sham surgery—it seems to
breaking down; many arthritis
: move stiff joints without gravity's
work best when the joint is
sufferers take it with
i weight-bearing pressure
still mechanically sound
glucosamines
—By Alice Park
e
SURGERY
EXERCISE
While there is no guarantee that anything
you do will prevent osteoarthritis, here are
some steps you can take to keep your
cartilage as healthy as possible
■ KEEP MOVING: Flexing joints lubricates
and protects them, so exercise regularly.
But avoid high-stress activities that pound
on knees or hips
■ STAY SLIM: Carrying too much weight
puts extraordinary stress onto the knees,
hips and ankles. Shed excess pounds
to take a load off the joints
■ BUILD MUSCLE: Joints need a
strong support system; maintaining
muscle tone will help stabilize knees,
hips and shoulders
Kuettner, professor of biochemistry at
Rush-Presbyterian-St. Luke’s. “The ankle
joint responds better than the knee joint to
osteogenic proteins.” Is that why the ankle
rarely gets osteoarthritis? “We don’t know,”
he says, “but it’s a hint in that direction.”
Another hint comes from the observa
tion that women with strong, healthy
bones—the kind least susceptible to the
brittleness of osteoporosis—are at greater
risk of developing osteoarthritis. Again,
doctors suspect a complex interplay of me
chanical and biochemical factors. Healthy
bones can support heavier loads. They also
tend to replace old bone cells with new
bone cells at a pretty fast clip. But some
how the biochemical signals responsible
for the bone’s increasing turnover rate trig-
ger even greater damage to the cartilage.
Or is it the other way around? Is it dam
aged cartilage that gets the process started
by sending aberrant signals to the bone?
At this point, it would be a mistake to fight
bitterly over whether osteoarthritis starts
m the bones or cartilage, because in the
end there may be different forms of the dis
ease, says Dr. Bjom Olsen, a cell biologist
PREVENTION
42
T1 ME, JUNE 16,2003
HEALTH
at Harvard University. “In some cases, it
may start in the bone. In others, it might
start in the cartilage.”
In a 10-year study of American families
that include members who have developed
osteoarthritis in their 40s and 50s, Olsen’s
group has identified at least three genetic
variations that make the cartilage of these
patients more susceptible to overloading.
Other scientists have found at least a dozen
cartilage-disrupting enzymes that appear
to be overactive in osteoarthritis. Yet even
the interaction between bones and carti
lage doesn’t tell the whole story. You also
need to take into account the ligaments—
those tough bands of tissue that connect
|>es to bones—and the muscles that surmd and stabilize the joints. Ligaments
can get stretched or tom, and muscles can
atrophy from underuse, disrupting a joint’s
finely tuned mechanism.
Take, for example, the quadriceps, the
large muscles on the front of the
thighs that help raise and lower
the legs. “It’s common knowl
edge that patients with os■ teoarthritis of the knee will have
weakness in the quadriceps,”
, says Dr. Kenneth Brandt, a
rheumatologist at Indiana Uni
versityin Indianapolis. For a long
time, physicians assumed this
was because their patients’ pain
prevented them from exercising.
But five years ago, Brandt and
his colleagues began studying a
group of 400 elderly people livin central Indiana and disWWered, much to their surprise,
that weakness in the quadriceps
in some cases preceded the ad
vent of osteoarthritis.
It makes sense. The stronger
the muscles, the greater the load
they take off the joint, thus limiting damage
to the cartilage. Brandt’s group is trying to
determine whether healthy seniors who
strengthen their quads by doing exercises
with elastic bands can delay, or possibly
prevent, the disabling consequences of
osteoarthritis in their knees. Professor Mohd
Farooque, former head of orthopedics at the
All India Institute of Medical Sciences in
New Delhi, says this is particularly applicable
in Asia: “In the West, arthritis is seen much
more in the hip, but here it is much more in
tire knee. This is because we sit like Buddha,
we squat on the toilet, we kneel to pray, and
it puts the knee under extreme stress. If it’s a
daily activity, the muscles and joints adjust
But if people, say, don’t pray as often as they
might, then it can do a lot of damage.”
«
However the arthritic process gets
started, the damage to the joint eventually
begins to grow. That’s when the body’s
immune system gets into the act. White
blood cells rush into the joint and release
destructive proteins that chew up the
pieces of damaged tissue. This so-called
inflammatory process, which is often but
not necessarily accompanied by swelling,
works well when the body needs to fend
off an acute attack, say, from invading
viruses or bacteria. But when the problem
is chronic, as in osteoarthritis, the white
blood cells might overreact, repeatedly
releasing so many “mopping up” proteins
that even healthy tissue is laid waste. In
rheumatoid arthritis, the immune-system
response is particularly aggressive.
So what can you do? The first step for
most patients is to try to get some immedi
ate relief. About 15% don’t seem to experi
ence inflammation; for them, over-the-
counter painkillers like acetaminophen
(Tylenol) are often all that’s necessary to
control their symptoms. Things become
more complicated when inflammation is
involved. Western standbys like aspirin
or ibuprofen are pretty good anti
inflammatories, but long-term use can
trigger dangerous side effects such as
internal bleeding. Traditional remedies
abound as well: acupuncture, massage,
hot-spring baths, herbal ointments and
more targeted (and dubious) palliatives
such as sour plum juice (in Taiwan) or deer
horn and tiger’s penis (in China). Newer
drugs, such as COX-2 inhibitors Vioxx and
Celebrex, tend to be more effective but
aren’t yet available in all Asian countries.
Some researchers believe there is too
TIME, JUNE 16,2003
much emphasis on drug treatments for os
teoarthritis. “There are other things that
can improve symptoms as much as pills,”
says Indiana University’s Brandt. Losing
weight as little as 4.5 kilos can make a dif
ference, for example, as can strengthening
the muscles that surround a joint. Certain
exercises, such as tracing circles in the air
with the arms, have also proved helpful at
keeping the joints from stiffening and los
ing mobility. Many arthritis sufferers swear
by the dietary supplements glucosamine
and chondroitin. Preliminary studies sug
gest they might relieve pain, but the jury’s
still out on whether they actually promote
the growth of new cartilage.
Sometimes surgery is unavoidable.
Each year doctors in the U.S. perform
270,000 knee replacements and 170,000
hip replacements. In Asia, countries like
Singapore and Japan—where medical care
is sophisticated and patients are relatively
wealthy—lead the way. But the
number of surgeries performed
is rising all across Asia.
No single approach works
best for everyone. As with any
chronic condition, there are al
ways some things you can’t con
trol. But there’s still a lot you can
do for yourself. That’s the lesson
Kazuko Hayashi, a 71-year-old
housewife from the city of
Kamakura, west of Tokyo, has
learned. She has osteoarthritis in
both knees. When the pain start
ed, at the age of 60, she figured it
was a by-product of her youthful
days of competitive volleyball and
swimming. “I thought it was an
old people’s disease,” she says,
“but I see many younger people
having the same problem.” Her
doctor recommended knee re
placement surgery, but she’s hoping to avoid
it, opting instead for three sessions a week
of electromagnetic therapy and massages.
For exercise, she walks in a swimming pool,
and she’s trying to shed six kilos. Hayashi is
also waiting for the day researchers know
enough about what triggers osteoarthritis to
come up with more effective treatments.
“There is a surgery to remove wrinkles;
there must be a good treatment being de
veloped for arthritis. I should live long and
wait for it.” Everybody else should pay at
tention to those twinges. —With reporting by
Joyce Huang/Taipei, Huang Yong/Beijing, Noah
Isackson/Chicago, Alex Perry/New Delhi,
Constance E. Richards/Asheville, Sean Scully/
Los Angeles, Nelly Sindayen/Manila, Hiroko
Tashiro/Tokyo and Sophie Taylor/Hong Kong
HEALTH
By MATTHEW FORNEY BEIJING
he baby wasn’t as lucky as my own
infant
son.
Both intensive-care
were
bom College
in 1995
in the
neonatal
unit
of
Peking
Union
Medical
more
than two
months
prematurely.
gazing
Roy in past
his
incubator
HospitalAfter
in Beijing,
Iatstrolled
a row of
bassinets containing other newborns. At the
end lay a child with seaweed-colored skin
stretched tight over his skull. I motioned to
the young attending doctor, figuring she
hadn’t yet noticed his death. She had. The
child’s lungs were underdeveloped, she ex
plained, and lack of oxygen at birth meant he
would suffer severe mental and physical
handicaps. The parents, preferring not to
raise a disabled boy, asked the doctor to han
dle the matter. The physician, whose care for
my own child had been exemplary, did so by
withholding treatment and nourishment
from this baby until he died.
Clearly upset by the incident, the doctor
told me she had little choice in the matter.
China’s one-child policy encourages families
to raise the best little emperors they can;
doctor-aided euthanasia is not uncommon
when children are bom with birth defects.
Infanticide is just one of the many ethical
compromises forced upon China’s doctors
by an authoritarian government. Obstetri
cians under orders from bureaucrats per
form late-term abortions, and psychiatrists
commit sane political dissidents to mental
institutions. In March and April, hundreds of
doctors knew that Party officials were risking
lives by denying the scope of the sabs epi
demic. Only one, 71-year-old military doctor
Jiang Yanyong, went public with damning
information. His colleagues, meanwhile,
abetted a scheme to hide sabs patients in
Beijing from World Health Organization in
spectors. “Medicine is supposed to be the
most ethical profession,” says Qiu Renzhong,
a medical ethicist at the Chinese Academy of
Social Sciences, “but Chinese doctors work
in the most unethical environment.”
Even if the country’s physicians sub
scribed to the Hippocratic oath, the ancient
moral dictum that guides Western medical
workers, they would have to violate it. In
China, doctors serve the all-powerful state,
and when a professional code of conduct
conflicts with the Party line, the latter often
holds sway. “Of course it’s an ethical prob
lem,” says a doctor who participated in Bei
jing’s sabs cover-up. “We want to be honest,
but if we don’t go along, we can’t exist.”
Shanghai doctor Zhang Shuyun discov
ered the perils of following her conscience
after exposing abuses at Shanghai’s main or-
thors say, “let the family-planning office de
phanage in the early 1990s. For years, the
cide.” Of course, that office ordered the abor
orphanage cleared room for new children
by neglecting existing charges until they
tion in the first place.
The government ensures that doctors
died, often emaciated and lashed to their
remain powerless by controlling medical so
cots. Shanghai officials fired Zhang for de
cieties, which in other countries help set eth
manding an investigation. She fled to En
gland with a suitcase full of documents and
ical norms. The Chinese Medical Association
is run by Zhang Wenkang, the former Health
photographs that became the basis for a
Minister who was sacked in April for cover
chilling 1996 Human Rights Watch report
ing up sabs. In 1999, legal reformers pushed
called Death by Default. Her actions helped
clean up the orphanage, but today Zhang
through a law calling for the formation of a
truly independent organization, the Chinese
fears she has sent the wrong message to col
Medical Doctors Association. It was estab
leagues back home. She must live in exile,
lished last year-headed by retired officials
but the man whom Human Rights Watch
from the Health Ministry.
blamed for covering up the scandal, Wu
Bangguo, is No. 2 in the Politburo. “Other
Still, there are signs of protest, if not
change. Huang Shurong, a peasant from
doctors will learn from my experience and
the northern province of Heilongjiang was
keep their mouths shut,” Zhang says.
committed by psychiatrists to a mental insti
The roots of complicity go beyond the
fear of being ostracized. In China, required
tution five times from 1998 to 2002 for com
plaining that local officials had taken her best
reading for every medical student is On the
farmland. A website run by the Procuratorial
Absolute Sincerity of Great Physicians, a
1,400-year-old treatise by Sim Simiao that
Daily, the newspaper of China's prosecutor’s
office, last year published a review of her
Hippocrates would appreciate. But tradi
case in which doctors were warned not to
tional ethical tracts never addressed the
greater role that doctors play as guardians of comply with police seeking expedient ways
of incarcerating undesirables. “Medical staff
public health. Confucian Emperors were
are an essential link in the chain of evil that
suspicious of physicians; books published in
produces these abuses, and this should
the Song dynasty encouraged self-diagnosis
not be forgotten when allocating blame and
among citizens. This contrasts with the evo
punishment,” the review stated. So far, no
lution of Western medical ethics, which
punishment has been allocated. Late last
stemmed from the pragmatic realization
month, the World Psychiatric Association
among 18th century European powers that
took China to task in an unusual statement
strong armies and workforces depended on
calling on the country to allow international
good public health, necessitating standard
experts to investigate allegations that psychi
qualifications for doctors, regular hospital
inspections and vaccinated conscript pools.
atry is used as a political tool.
Meanwhile, Jiang Yanyong the military’
But "Chinese physicians developed no
doctor who exposed the government’s sabs
group identity of safeguarding the entire
population or, if the government goes in the
cover-up by publicly accusing the Minister
of Health of lying about the capital’s out
wrong direction, of voicing criticism,” says
break, has become a local hero. The China
Paul Unschuld, an expert on Chinese med
Women’s News ran his photo ahead of those
ical history at the University of Munich.
of government officials in a front-page piece
Today, only half of China’s medical
headlined honob roll of sabs fightebs.
schools offer ethics courses. When such class
Although Jiang has been told not to give in
es are provided, they suggest that thorny is
terviews, he seems to have escaped retribu
sues can always be resolved by adhering to
tion. Partly that may be because, as a top
government policy-and that individuals’
surgeon who has saved the lives of military
health and welfare come second. One text,
leaders, he could count on protection. In an
Analyzing Ethics in Clinical Cases, neatly
earlier interview with Time, he acknowl
files down the horns of a familiar dilemma.
edged that his position allowed him to speak
On page 24, the authors present the case of a
out. Others declined to take such risks, he
seven-month-pregnant peasant woman who
said, because “China’s system is not built for
is forced by family-planning officials to abort.
people to say no.’’
She submits, but the baby survives. When the
Inspired by Jiang's courageous stand,
woman refuses to let the doctors “dispose” of
her infant son, the book says practitioners i more Chinese physicians may begin say
should “act according to the one-child policy ! ing no. I believe trie doctor who helped de
[and] point out that because medical abor- I liver my son, and who couldn't look me in
tions can affect a child's normal develop- | the eye as she explained what she’d done
inent, she should abandon” her protests and i with the other baby, hopes that day will
come soon.
■
allow euthanasia If that doesn t work, live au-
T
44
ORPHANS Dr. Zhang
China’s physicians must make life-and-death decisions
the Party’s ethical compass—and death wins far too
ORGANS i
military doctor Wang
Guoqi blew the whistle
on the harvesting and
selling of body parts of
executed prisoners
Shuyun’s revelations of
fatal neglect at a Shanghai
orphanage exposed
widespread abuses in
institutions across China
AIDS Retired doctor
Gao Yaojie has been
harassed since reveal
ing that the epidemic
spread via the illegal
sale of blood
SAiiSlieifingu i'‘
surgc< i. riiti F - ‘ •
mem’.-:exposed S«>«
secrecy ever thc >r..c
extent the
'
1
TIME.JUNE 16.2003
FOR CENTURIES, PEOPLE
HAVE DREAMED OF
HARNESSING THE POWER
OF OCEAN TIDES. HAS A
COMPANY IN WALES MADE
THE DREAM COMETRUE?
St Bride’s Bay, Pembrokeshire. Trying to
place buoys in the water, he realized the
current was dragging the boat sideways.
“The energy here is absolutely astronom
ical,” thought Ayre, who started won
dering how to generate power from it
without damaging the bay’s pristine
environment. He came up with the
goes out, propelled by the perpet
ual engine of the sun and moon.
With 70% of the earth’s surface
covered by the restless tides and
currents of the oceans, the idea of har
nessing that movement to serve the
planet’s energy needs is too tempting
to ignore.
Since the Middle Ages people have
built tidal mills, trapping an incoming
tide in a storage pond to turn a wheel as
the water ebbs. But the dream has
always been to tap the power of the ocean
itself—to harness the force of tides mighty
enough to erode and shift entire coast
lines. And so later this year a small South
Wales company called Tidal Hydraulic
Generators (THG) plans to lower a steel
frame supporting five 6-m diameter tur
bines to the floor of the Severn Estuary.
The tubes will translate the power of the
tide as it ebbs and flows into one
megawatt of electricity, enough to power
about 500 homes. The project will be a
test run for much larger rigs, with up to
50 turbines apiece, that could produce
enough electricity for a small town.
The inspiration for the turbines came
on a calm day in 1997 when Richard
Ayre, managing director of THG, was
working for the marine national park in
pressed the government that it has pro
ised €2.23 million to fund I
construction of the five-turbine unit
the Bristol Channel.
Because water is 800 times more
dense than air, tide power is a more pro
ductive energy source than wind power,
now commonly used throughout the de
veloped world. Where a wind turbine
may be up to 80 m in diameter, a tidal
stream turbine need be only 10 m across
to produce 50% more energy. Though
the blades turn slowly, just 10 revolu
tions per minute, the rotation generates
a great deal of torque—a force that caus
es an object to rotate. That is then
turned into energy via a hydraulic accumulator, which
condenses the power into a
motor that drives the generator. David Baird, managing
director of Babtie, the engineering group that is workingj.^fthvv'
Ayre, thinks tidal stream power has abig
drive/gear system and a generator—and
A South Wales comp
called THG has desij
the sea off Milford
T
drains in and out of the Pentland Firt
he says. “We estimate that using tic
stream generators we could meet atf
the renewable energy needs of the U.j
The Severn Estuary was chosen
test the new technology because it 1
the world’s highesft
range between high*
andlow tides, around
12 m, and during the
Severn Bore, at the
managing director, THG
times of the spring
and autumn equin
ftThe energy here is absolutely
astronomical.??
DOMING T1DI
-3>World Bank Reprint Series: Number Sixty-two
Paul P. Streeten
Basic Needs:
^Premises and Promises
Reprinted from Journal of Policy Modeling 1 (1979)
The World Bank Catalog lists all publications of the World Bank and is avail
able without charge to individuals and institutions having a serious interest
in economic and social development. Address requests for the Catalog to:
Publications Office, The World Bank, Washington, D.C. 20433, U.S.A., or to
the World Bank European Office, 66, avenue d’lena, 75116 Paris, France.
WORLD BANK BOOKS ABOUT DEVELOPMENT
Research Publications
Housing for the Urban Poor: Economics and Policy in the Developing World by
Orville F. Grimes, Jr., published by The Johns Hopkins University Press, 1976
Electricity Economics: Essays and Case Studies by Ralph Turvey and Dennis
Anderson, published by The Johns Hopkins University Press, 1976
Village Water Supply: Economics and Policy In the Developing World by Robert
Saunders and Jeremy Warford, published by The Johns Hopkins University
Press, 1976
Economic Analysis of Projects by Lyn Squire and Herman G. van der Tak,
published by The Johns Hopkins University Press, 1975
(
The Design of Rural Development: Lessons from Africa by Uma Lele, published
by The Johns Hopkins University Press, 1975
Economy-Wide Models and Development Planning edited by Charles R. Blitzer,
Peter B. Clark, and Lance Taylor, published by Oxford University Press, 1975
Patterns of Development, 1950-1970 by Hollis Chenery and Moises Syrquin with
Hazel Elkington, published by Oxford University Press, 1975
A System of International Comparisons of Gross Product and Purchasing Power
by Irving B. Kravis, Zoltan Kenessey, Alan Heston, and Robert Summers,
published by The Johns Hopkins University Press, 1975
Attacking Rural Poverty: How Nonformal Education Can Help by Philip H.
Coombs with Manzoor Ahmed, published by The Johns Hopkins University
Press, 1974
Country Economic Reports
Chad: Development Potential and Contralnts by Richard Westebbe and others,
distributed by The Johns Hopkins University Press, 1974
Economic Growth of Colombia: Problems and Prospects by Dragoslav
Avramovlc and others, published by The Johns Hopkins University Press, 1972
The Current Economic Position and Prospects of Ecuador by Roberto Echeverria
and others, distributed by The Johns Hopkins University Press, 1973
1
Kenya: Into the Second Decade by John Burrows and others, published by The
Johns Hopkins University Press, 1975
Korea: Problems and Issues In a Rapidly Growing Economy by Parvez Hasan,
published by The Johns Hopkins University Press, 1976
Lesotho: A Development Challenge by Willem Maane, distributed by The Johns
Hopkins University Press, 1975
(continued on inside back cover)
Basic Needs: Premises and Promises
Paul P. Streeten,’ World Bank
The objective of a basic needs approach is to provide opportunities for the full
development of the individual. It focuses on mobilizing particular resources for particular
groups, identified as deficient in these resources. It is contrasted with the income and
employment approaches, which neglect important features of meeting basic needs. The
essence of the case for the basic needs approach is that the gap between requirements and
actual living levels can be filled sooner, and with fewer resources, than by alternative
routes. After a discussion of the value and factual premises underlying this approach and
of the political and administrative constraints, the problem of a possible trade-off between
basic needs and growth, and between basic needs and the New International Economic
Order is discussed, and the case for additional aid, in order to make a substantial step
towards meeting basic needs by the year 2000, is argued.
OBJECTIVES
The objective of a basic needs approach to development is to provide
opportunities for the full physical, mental, and social development of the
individual. This approach focuses on mobilizing particular resources for particu
lar groups, identified as deficient in these resources, and concentrates on the
nature of what is provided rather than on income. It is, therefore, a more positive
and concrete concept than the double negatives like “eliminating poverty” or
“reducing unemployment,” It does not replace the more aggregate and abstract
concepts which remain essential to measurement and analysis; it gives them
content. Nor does it replace concepts that are means to broader ends, like
productivity, production, and growth, but it calls for changing the composition
of output, the rates of growth of its different components, and the distribution of
purchasing power.
In addition to the concrete specification of human needs in contrast to abstract
concepts, and the emphasis on ends in contrast to means, the basic needs
approach encompasses “nonmaterial” needs. They include the need for selfdetermination, self-reliance, political freedom and security, participation in
decision making, national and cultural identity, and a sense of purpose in life
and work. While some of these “nonmaterial” needs are conditions for meeting
the more “material” needs, there may be conflict between others, such as meeting
basic material needs and certain types of freedom. For other sets of needs, there
may be neither complementarity nor conflict.1 Finally, meeting specific priority
Address correspondence to: The World Bank, 1818 H Street, N.W., Washington, D.C. 20433
‘ The views expressed are purely personal and not necessarily those of the World Bank.
I
am indebted for helpful comments to Shahid Javed Burki, Robert Cassen, Mahbub ul
Haq, Richard Jolly, Frances Stewart, and T. N. Srinivasan. An earlier version of a part of
this article appeared in the International Development Review, vol. 19, no. 3, 1977.
1 The notion “basic" does not preclude possibilities of conflicts and trade-offs: since not
all needs can be met at once, their hierarchy manifests itself as a succession in lime.
Journal of Policy Modeling 1, 136-146 (1979)
© Society for Policy Modeling, 1979
136
BASIC NEEDS
137
needs has an appeal to donors and to those taxed, which income redistribution
lacks.
INCOME VERSUS BASIC NEEDS APPROACHES
The income approach recommends measures that raise the real incomes of the
poor by making them more productive, so that the purchasing power of their
earnings (together with the yield of their subsistence production) is adequate to
enable them to buy the basic needs basket. The basic needs approach, in the
narrow sense, regards the income-orientation of earlier approaches as inefficient.
or partial, for several reasons:
(1)
There is some evidence that consumers are not always efficient optimizers,
especially concerning nutrition and health, or when changing from subsistence
fanners to cash earners. Additional cash income is sometimes spent on food of
lower nutritional value than that consumed at lower levels, or on items other
than food.
(2)
The manner in which additional income is earned may affect nutrition
adversely. Female employment, for example, may reduce breast feeding and.
therefore, the nutrition of babies, even though the mother’s income has risen, or
more profitable cash crops may replace “inferior” crops grown at home.
(3)
There is maldistribution within households, as well as between households:
women and children tend to be neglected in favor of adult males. Points (1). (2).
and (3) raise difficult and controversial questions about free choice and society’s
right to intervene, and about effective methods of aiding choice and strengthen
ing and reaching the weak.
(4)
Perhaps twenty percent of the destitute are sick, disabled, aged, or
orphaned children; they may be members of households or they may not; their
needs have to be met through transfer payments or public services, since, by
definition, they are incapable of earning. This group has been neglected by the
income and productivity approach to poverty alleviation and employment
creation. Of course, this situation raises particularly difficult problems of
implementation, not only in poor societies.
(5)
Some basic needs can be satisfied effectively only through public services.
subsidized goods and services, or transfer payments. The provision of public
services is, of course, not a distinct feature of a basic needs strategy. Emphasis
is placed, rather, on investigating why these services so often fail to reach the
groups for whom they were intended and on ensuring that they do.
(6)
The income approach has paid a good deal of attention to the choice of
technique, but has neglected the need to provide for appropriate products. In
many developing societies, the import or domestic production of over-sophisti
cated products, transferred from relatively high-income, high-saving economies,
has frustrated the pursuit of a basic needs approach by catering to the demands
of a small section of the population, or by preempting an excessive slice of the
low incomes of the poor. The choice of appropriate products produced by
appropriate techniques, giving rise to more jobs and a more even income
distribution, which in turn generates the demand for these products, is an
essential, distinct feature of the basic needs approach.
138
P- P- Streeten
(7)
Finally, as already mentioned, the income approach neglects the impor
tance of “nonmaterial” needs, both in their own right and as instruments of
meeting some of the material needs more effectively and at lower costs. This
point becomes particularly relevant if the nonsatisfaction of nonmaterial needs
increases the difficulty of meeting basic needs despite income growth.
The selective approach makes it possible—and sooner—to satisfy the basic
human needs of the whole population at levels of income per head substantially
below those that would be required by a less discriminating strategy of allaround income growth. This point is crucial. Fewer resources are required, or the
objective can be achieved sooner, because a direct attack on deprivation
eliminates spending on resources that do not contribute to meeting basic need,
among which are: (1) the non-basic-needs items in the consumption expenditure
of the poor; (2) part of the nonincentive consumption expenditure of the better
off; and (3) investment expenditure, to the extent that its reduction does not
detract from constructing the sustainable base for meeting basic needs.2
In addition, these fewer resources needed show a higher “productivity” in
meeting their objective. A combined operation for meeting an appropriately
selected package of basic needs economizes in the use of resources and improves
the impact, because of linkages, complementarities and interdependencies
among different sectors.3
Finally, concentrating efforts on infant mortality, women’s education, and
even the apparently purest “welfare” component (provision for old age and
disabiltiy) should reduce desired family size and fertility rates more speedily and
at lower costs than raising household incomes.4 The causal nexus has not been
established beyond controversy, but it presents one of the hypotheses of the basic
needs approach.
For these three reasons—saving resources on objectives with lower priority
than basic needs, economizing on linkages, and reducing fertility rates (and, on
certain assumption, population growth)—a basic needs approach economizes in
the use of resources or in the time needed to satisfy basic needs.
A basic needs approach will also tend to make more domestic resources
available; (1) The output needed to satisfy basic needs is likely to be laborintensive. In countries with high unemployment, this will raise both employment
and production. (2) Attacks on malnutrition, disease, and illiteracy result not
only in longer life spans and improved quality of life, but also in improved
quality of the labor force.5 (3) The removal of motives for having large families,
by an attack on the “correlates of fertility decline” mentioned in the previous
2 To the extent that meeting basic needs covers provision for the victims of natural
disasters special arrangements are required and the argument of the text applies with less
force.
3 Very low fertility rates are registered in countries with low infant mortality rates and
high life expentancy.
J
4 Cassen (1976) emphasizes the complex processes connecting these “correlates of
fertility decline," with other aspects of development, including income and fertility.
Morawetz (1978) confirms statistically the link between basic needs and fertility decline.
It is, however, an open question whether the returns to this form of human investment
are higher, at the margin, than those from more conventional investment in physical
capital.
BASIC NEEDS
139
paragraph can be (alternatively) regarded as a factor reducing the required
resources or as one increasing the available resources. (4) A basic needs approach
that harnesses local labor will mobilize and increase incentives for higher
production.
More resources may also become available internationally because the pledge
for meeting the basic needs of the world’s poor as a first charge on our aid
budgets has stronger moral and political appeal than most other schemes
advanced for the promotion of international assistance. There can be no
certainty about this, but it is already clear that the concept has international
appeal and may help to overcome the present aid fatigue by defining new forms
of international cooperation and commitments.6
It remains to be investigated how a basic needs approach is likely to affect
specific resource constraints—foreign exchange, administrative skills, etc. It
might be thought that such a strategy would reduce exports, but it would also
tend to reduce import requirements. It would certainly call for more administra
tive skills, but if local energy can be harnessed, motivation for raising the supply
of these skills would be strengthened and the skills are not of a very high order.
In brief, therefore, a basic needs approach—because it saves resources.
mobilizes more resources, and makes these resources more productive—achieves
an agreed priority objective sooner than a solely income-oriented approach, even
if the latter is poverty-weighted. The “resource gap” is narrowed or closed from
both ends.
Two crucial questions remain: one of value and one of fact. The value
assumption underlying the above argument is that lower weight is attached to the
uses of resources that do not meet basic needs. One may object that governments
and people who do not accept this value judgment will reject the whole
approach, and those that accept it will not need it. But if aid agencies adopt the
approach, they may be able to push the unconvinced in the direction of
accepting the value judgment.
The crucial factual assumption is that leakages or “trickle-up” effects in a
selective system are smaller than in a general system. If the benefits do not
effectively reach the needy, the “wastage" of the basic needs approach may be
as large as, or even larger than, that of the income-oriented, nonselective
approach. This is an important area for operational research and experimenta
tion.
BASIC NEEDS AND GROWTH: A TRADE-OFF?
Critics of the basic needs approach have often stated that such an approach
sacrifices savings, productive investment, and incentives to work for the sake of
current consumption and welfare.
Basic needs and growth are not strictly comparable objectives. Growth
emphasizes annual increments of production and income, and concern for the
6 Since food is an important element in a basic needs strategy, and since, given the
distribution of votes in Western democracies, food aid is politically easier than finance.
properly channelled food aid can make an important international contribution to meeting
basic needs.
P. P. Streeten
140
future. A basic needs approach must also contain a time dimension. It proposes
a set of policies that increasingly meets a dynamic range of the basic needs of a
growing population.
If basic needs and growth are to be compared at all, the question should be:
Does meeting basic needs imply sacrificing certain components of current output
or certain components of current incomes? Such a sacrifice then may reduce
aggregate growth of income per head by raising the capital/output ratio and/or
lowering the savings ratio, and/or raising population growth.
Four types of trade-off can be envisaged:
between benefits to higher income groups in favor of benefits to lower
income groups;
between non-basic-needs goods and services consumed by all income
groups, including the poor, in favor of basic needs goods and services
consumed by the poor;
(3)
between activities that create incentives for larger savings and efforts to
work in favor of current consumption;
(4)
between goods and services which make a larger contribution to future
production in favor of those that make a smaller contribution or none.
(1)
(2)
All these policies have certain distributional dimensions, in both space and
time; they imply decisions about how goods and services are distributed. The
concern of those who suspect that basic needs involves a trade-off with growth is that
the children and grandchildren of those whose basic needs are met now would have
to accept lower levels of living than if the present generation were asked to tighten its
belt more for higher prosperity later.
Ignoring for the moment problems of measurement, the options can be
illustrated by four paths. In Fig. 1 we trace the log of consumption per head of
the poor on the vertical axis and time on the horizontal axis. Path 1 shows at first
lower levels of consumption but, as a result of better incentives and productive
BASIC NEEDS
141
investment, overtakes path 2 at some point (7[) and, for ever after, the
consumption of the poor is higher. Path 2 starts with higher consumption by the
poor but, by neglecting incentives, private and public savings, and productive
investment, falls behind path 1 after a certain date, 7[. This is how the option is
often presented.
,
It should be clear that sound policies should rule out path 3. which is an
Inefficient way of meeting the needs of the poor.
The rationale behind basic needs, however, is path 4. High priority is given to
some components of current consumption by the poor which may then, for a
while, fall below the consumption levels that could have been attained by the two
other paths. When the present generation of children entering the labor force
begins to yield returns, (7£), the growth path is steeper than it would have been
under 1, and overtakes first the welfare path 2 and later the growth path 1.
Stalinist forced industrialization and the industrial revolution in England
followed path I. Taiwan, Korea, and perhaps Japan followed path 4, laying in
earlier years the runway for future “take-ofT into self-sustained growth” by
meeting certain basic needs through land reform and massive investment in
human capital, especially education. Critics charge that Sri Lanka and Tanzania
may be following path 2 and Burma path 3, though these experiences have not
yet been fully analyzed.
In comparing growth paths, it is important that growth and its components are
correctly measured. Basic needs are measured, in the first place, in terms of
psysiological needs and physical inputs, and financial costs are calculated from
these. Growth, on the other hand, is an aggregate in which the existing, often
very unequal, income distribution determines purchasing power, and with it the
price weights. A ten percent increase in the income of someone earning $10,000
is weighted a hundred times more than a ten percent increase in the income of
someone earning $100. Ahluwalia and Chenery (1974) have suggested a modifi
cation to the conventional growth measure, which weights initial shares of each
income group by their share in the national income, so that the weight of the
poorest is the smallest and that of the richest the largest. One possibility is to
weight each group equally, according to the number of people (or households.
allowing for size and age distribution), so that a one percent growth of the
poorest 25 percent has the same weight as a one percent growth of the richest 25
percent. An even more radical system of weighting would attribute zero weights
to the growth of income of all income groups above the poorest 25 or 40 percent.
and a weight of unity to those below the poverty line. Whatever method is
chosen, any discussion of the “trade-off” between basic needs and growth ought
to specify what weights it attaches to income growth of dififerent income groups.
This would bring out clearly the value judgements underlying the strategy.
The relative importance of different items in the consumption basket is
normally determined by their relative prices. We register growth when the
consumption of whiskey has risen, even though the consumption of milk may
have declined. This is not because we regard whiskey consumed by the rich as
more important than milk consumed by the poor, but because the higher
incomes of the rich determine the relatively high price of whiskey, while lack of
142
P- P- Streeten
purchasing power of the poor is reflected in the low price of milk. In societies
with unequal income distributions, the standard measure for GNP growth,
therefore, gives excessive weight to the growth of non-basic-needs goods and
deficient weight to basic needs goods.
Having specified the particular resources needed for the particular target
groups, and having defined a time profile for meeting the basic needs of a
growing population on a sustainable basis, growth will turn out to be the result
of a basic needs policy, not its objective. Growth is not normally something that
has to be sacrificed, “traded-off,” in order to meet present needs. On the
contrary, in the light of the above considerations, a basic needs approach may
well call for higher growth rates than a so-called “growth” strategy. But the
time path composition and the beneficiaries (and the measure) of such growth
will be different from those of a conventional high-growth strategy.
THE POLITICS OF BASIC NEEDS
It is sometimes argued that basic needs is an ideological concept that conceals
a call for revolution. Such an interpretation can be justified neither historically nor
analytically.7 It is evident that a wide variety of political regimes have satisfied
basic needs within a relatively short time. Options for the future are even wider
than the limited experience of the past twenty-five years.
It is, of course, true that the success of different political regimes in meeting
basic needs cannot be attributed to their having written basic needs on their
banner. Most share certain initial conditions and sets of policies that present
important lessons for others attempting to meet basic needs. By starting from a
base at which some basic needs were already satisfied, they reduced the time
required for meeting other needs, both directly, and through the indirect effect
on the quality and motivation of the labor force.
If some political regimes have succeeded in satisfying basic needs within a
short period without adopting a basic needs approach as an explicit policy
instrument, others have paid lip service to the objective, without succeeding in
implementing it. The reasons for this gap between professions and practice are,
ultimately, political.
If the failures of certain strategies are due to political obstructions, it is then
essential to show how these forces can be kept in check. For example, measures
to meet basic needs can be implemented by a reformist alliance, in a peaceful
manner. Some of these measures, like the eradication of communicable diseases
or the preservation of social peace, are clearly in the narrow self-interest of the
dominant groups. Others are in the longer-term interest of some groups who
could mobilize support for gradual reform.8
7 Even if justified, it would still require a “delivery system” for revolution.
8 In 19th century England, the rural rich campaigned against the urban rich for factory
legislation, which improved the condition of the poor, while the urban rich campaigned
against the rural rich for the repeal of the Corn Laws, which reduced the price of food for
the poor.
BASIC NEEDS
143
BASIC NEEDS AND THE NEW INTERNATIONAL ECONOMIC
ORDER
Developing countries are apprehensive lest a basic needs approach adopted by
donors implies sacrificing features of a New International Economic Order
(NIEO). But the conflict can be avoided. The differences between the two
approaches point to the need to advance on both fronts simultaneously. The
NIEO is concerned with formulating a framework in institutions, processes, and
rules that would correct what developing countries regard as the present bias of
the system against them. This bias is thought to be evident in the structure of
certain markets, where a few large and powerful buyers confront many weak,
competing sellers; in discrimination in access to capital markets and to knowl
edge; in the present patent law and patent conventions; in the thrust of research
and development and the nature of modem technology: in the power of the
transnational corporations; in discriminatory restrictions on migration; in inter
national monetary arrangements; etc. A correction in the direction of a more
balanced distribution of power and access to power would enable developing
countries to become less dependent and more self-reliant. But the NIEO by itself
is no guarantee that the governments of the developing countries would use their
new power to meet the needs of their poor.
A basic needs program that does not build on the self-reliance and self-help of
governments and countries is in danger of degenerating into a global charity
program. A NIEO that is not committed to meeting basic needs is liable to
transfer resources from the poor in rich countries to the rich in poor countries.
It is easy to envisage a situation in which the benefits of international basic
needs assistance are more than wiped out by the damage done by protectionist
trade measures, by an unequal distribution of the gains from trade and foreign
investment, by transfer pricing practices of transnational corporations, by the
unemployment generated by inappropriate technology, by brain drain and
restrictions on migration of unskilled workers, or by restrictive monetary policies
which inflict unemployment. The global commitment to basic needs makes sense
only in an international order in which the impact of all other international
policies—trade, foreign investment, technology transfer, movement of profes
sionals, migration, money—is not detrimental to meeting basic needs.
The NIEO is a framework of rules and institutions, regulating the relations
between sovereign nations; and basic needs is one important objective which this
framework should serve. The way to make the institutions accept this objective
is to strike a bargain: donors accept features of the NIEO if, and only if,
developing country governments commit themselves to poverty eradication.
There are those who maintain that integration into any international economic
order in which advanced capitalist economies dominate is inconsistent with
meeting the basic needs of the poor. Pointing to the People's Republic of China
(at least until recently), they advocate “delinking” in order to insulate their
society, or a group of like-minded societies, from the detrimental impulses
propagated by the international system. Policies derived from such a view of the
world order do not depend, of course, on wringing concessions from rich
144
P. P. Streeten
countries, but can be pursued by unilateral action. On the other hand, those who
think that the international system has benefits to offer if the rules are
reformulated and the power relations recast, will not opt for complete delinking
but for restructuring.
A more specific question is how an international basic needs approach is to be
implemented in a manner consistent with the spirit of the NIEO. The govern
ments of developing countries are anxious to preserve their full sovereignty and
autonomy and do not wish to have their priorities laid down for them by donors.
Donors, on the other hand, wish to make sure that their contributions reach the
people for whom they are intended. The solution is to be found in the
strengthening of existing institutions and the evolution of new ones that are
acceptable to both donors and recipients and that ensure that international aid
reaches the vulnerable groups. Such buffer institutions and buffer processes
would combine full national sovereignty with basic needs priority. They would
be representative, independent, and genuinely devoted to the goals of interna
tional cooperation.
DEVELOPMENT ASSISTANCE REQUIREMENTS FOR
FINANCING BASIC NEEDS
Provisional estimates indicate that a basic needs program would call for an
annual investment of $20 billion over a twenty-year period (1980-2000) at 1976
prices. If recurrent expenditures are added, the annual total costs would amount
to $45-60 billion. If programs are implemented only in the poorest countries.
annual investment and recurrent costs are estimated to be $30-40 billion. This
would be 12-16% of these countries’ projected GNP and 80-100% of their
projected gross investment. Assuming the OECD countries concentrate their
effort on the poorest countries and contribute about 50% of the additional costs
of these programs, this would call for $15-20 billion official development
assistance (ODA) flows per year over twenty years.
At present, ODA flows from OECD countries amount to about $14 billion a
year. Of this, the poorest countries receive only about $6 billion. Only a part of
this assistance is now devoted to meeting basic needs, and the resource
calculations are based on additional requirements. Nevertheless, it might be
asked why the whole of the assistance should not be switched to what is agreed
to be a priority objective, so that additional requirements could be greatly
reduced. Moreover, if some ODA now going to middle-income countries could
be redirected to the poorest countries, requirements could be further reduced.
Such redirection would, however, be neither desirable nor possible. Middle
income countries have a higher absorptive capacity and tend to show higher
returns on resource transfers. They, too, have serious problems of poverty.
Moreover, a reallocation of ODA flows is politically much easier if it is done out
of incremental flows than if existing flows to some countries have to be
decreased. The legacy of past commitments and the expectations that they have
generated cannot be discarded in a few years.
There are three reasons why additional resources of about $20 billion per year
are needed in order to make a convincing international contribution to basic
BASIC NEEDS
145
needs programs in the poorest countries. First, twenty years is a very short time
for a serious antipoverty program. It calls for extra efforts both on the part of
developed and developing countries. The domestic effort—economic, adminis
trative and political—required from the developing countries is formidable. At
the same time, while the figures for ODA seem large, total ODA flows that would
rise year by year by $2 billion between 1980 and 2000 (averaging $20 billion per
year for the entire 20 years) would still be only 0.43% of the GNP of the OECD
countries in the year 2000, substantially below the agreed-upon target of 0.7%.
The acceleration (from the present 0.34%) is certainly within the power of the
developed countries.
The second reason for additional resources is the fact that the change from
present policies to a basic needs approach creates formidable problems of
transition. Investment projects that have been started cannot suddenly be
terminated. An attempt to switch to basic needs programs while the structure of
demand and production has not yet been adapted to them is bound to create
inflationary and balance-of-payments pressures. This might result in capital
flight and added brain drain as social groups anticipating being hurt attempt to
safeguard their interests. Strikes from disaffected workers in the organized
industrial sector might occur. Unless a government has some reserves to
overcome these transitional difficulties, the attempt to embark on a basic needs
program might be doomed from the beginning.
The third reason is tactical and political. It is well known that the developing
countries are suspicious of a basic needs approach. One reason is that they
believe that pious words conceal a desire to opt out of development assistance.
And there is no doubt that the pronouncements of some people in the developed
world justify such suspicion. If an international commitment to meet basic needs
within a short period is to be taken seriously by the developing countries, the
contribution by the developed country must be additional and substantial. The
essence of a global compact, as announced by Robert S. McNamara in Manila
in 1976, is that both developed and developing countries should reach a basic
understanding to meet the basic needs of the absolute poor within a reasonable
period of time. Such a compact would be a sham if it did not involve substantial
additional capital transfers.
FURTHER RESEARCH: TOWARDS A COUNTRY TYPOLOGY
An important conclusion from having identified the distinct features of a basic
needs approach is the need for a redirection of research. It is in the areas of the
technology of public services, development administration, and development
politics that future work is likely to yield promising results, although economists
as such have little to contribute to some of the principal problems, except work
on linkages and externalities. The work should start from an appropriate country
typology that distinguishes:
(1)
between countries with relatively high average incomes per head, in which
an emphasis on redistribution of income and assets and a redirection of social
146
P. P. Streeten
services can make a substantial contribution to meeting basic needs, and those
with very low incomes, in which growth is an essential condition for meeting
basic needs;
(2)
between countries whose political system encourages self-reliance and local
mobilization and those that will depend heavily on external assistance;
(3)
between countries with high population density and little cultivable land,
in which land redistribution holds out limited scope, and those with abundant
cultivable land in relation to their population;
(4)
between smaller countries that can hope for growth in employment
opportunities from labor-intensive exports and larger countries in which foreign
trade plays a relatively smaller role;
(5)
between countries in which a large proportion of the population live in the
countryside and where rural development has greater importance and those with
a large proportion of urban population.
Different political regimes and different administrative, technological,
and ecological conditions are also relevant.
Work will also be needed on the development of systems of monitoring basic
needs. Social indicators, methods of developing composite or integrated indica
tors (such as an extension of life expectancy to comprise the dimensions of basic
needs) and their correlation with economic indicators are prerequisites for
analysis and policy. Once these are available, we can assess the impact of policies
on meeting basic needs.
REFERENCES
Ahluwalia, M.S., and Chenery, Hollis (1974) Models of Redistribution and Growth, in
Redistribution with Growth (Hollis Chenery el al., eds). London: Oxford University
Press. Chapter 11.
Cassen, Robert H. (1976) Population and Development: A Survey, World Development
(October-November).
Morawetz, David (1978) Basic Needs Policies and Population Growth, World Development,
forthcoming.
Sen, A. K. (1975) Poverty and Economic Development, Ahmedabad.
United Nations (1975) Poverty, Unemployment and Development Policy, New York.
(55)
Nigeria: Options for Long-Term Development by Wouter Tims and others,
published by The Johns Hopkins University Press, 1974
The Current Economic Position and Prospects of Peru by Jose Guerra and
others, distributed by The Johns Hopkins University Press, 1973
Senegal: Tradition, Diversification, and Economic Development by Heinz
Bachmann and others, distributed by The Johns Hopkins University Press,
1974
Turkey: Prospects and Problems of an Expanding Economy by Edmond Asfour
and others, distributed by The Johns Hopkins University Press, 1975
Yugoslavia: Development with Decentralization by Vinod Dubey and others,
published by The Johns Hopkins University Press, 1975
World Bank Staff Occasional Papers
Economic Evaluation of Vocational Training Programs by Manuel Zymelman,
published by The Johns Hopkins University Press, 1976
A Development Model for the Agricultural Sector of Portugal by Alvin C. Egbert
and Hyung M. Kim, published by The Johns Hopkins University Press, 1975
* e Future for Hard Fibers and Competition from Synthetics by Enzo R. Grilli, dis
tributed by The Johns Hopkins University Press, 1975
Public Expenditures on Education and Income Distribution In Colombia by JeanPierre Jallade, distributed by The Johns Hopkins University Press, 1974
Tropical Hardwood Trade in the Asia-Pacific Region by Kenji Takeuchi, dis
tributed by The Johns Hopkins University Press, 1974
Methods of Project Analysis: A Review by Deepak Lal, distributed by The Johns
Hopkins University Press, 1974
Road User Charges in Central America by Anthony Churchill, distributed by The
Johns Hopkins University Press, 1972
Cost-Benefit Analysis In Education: A Case Study of Kenya by Hans H. Thias and
Martin Carnoy, distributed by The Johns Hopkins Press, 1972
Other Publications
Size Distribution of Income: A Compilation of Data by Shall Jain, distributed by
The Johns Hopkins University Press, 1975
India: The Energy Sector by P. D. Henderson, published by Oxford University
Press, 1975
The Assault on World Poverty: Problems of Rural Development, Education, and
a \Health, published by The Johns Hopkins University Press, 1975
-.tedlstrlbution with Growth by Hollis Chenery, Montek S. Ahluwalla, C. L. G. Bell,
John H. Duloy, and Richard Jolly, published by Oxford University Press, 1974
Population Policies and Economic Development: A World Bank Staff Report by
Timothy King and others, published by The Johns Hopkins University Press,
1974
Prospects for Partnership: Industrialization and Trade Policies In the 1970s
edited by Helen Hughes, published by The Johns Hopkins University Press,
1973
WHO/MNH/MND/98.4
Original: English
Distr.: General
DEPARTMENT OF MENTAL HEALTH
EDUCATION IN
PSYCHIATRY OF THE ELDERLY
A TECHNICAL CONSENSUS STATEMENT
WORLD HEALTH ORGANIZATION
WORLD PSYCHIATRIC ASSOCIATION
GENEVA
We gratefully acknowledge a generous grant from
Pfizer Pharmaceuticals, Pfizer, Inc.
for the printing and distribution of this document.
WHO/MNH/MND/98.4
Original: English
Distr.: General
EDUCATION
IN PSYCHIATRY OF THE ELDERLY
A TECHNICAL CONSENSUS STATEMENT
This document is a technical consensus
statement jointly produced by the Geriatric
Section of the World Psychiatric Association and
WHO, with the collaboration of several NGOs
and the participation of experts from different
Regions.
It is intended to provide a basic guide for
all those involved in the development and
implementation of education in the fields of
mental health and mental health promotion for
older persons.
KEY WORDS: psychogeriatrics / elderly people
/ training / health education / mental health care.
DEPARTMENT OF MENTAL HEALTH
WORLD HEALTH ORGANIZATION
WORLD PSYCHIATRIC ASSOCIATION
GENEVA
1998
Or
r
© World Health Organization and World Psychiatric Association 1998
This document is not a formal publication of the World Health Organization (WHO), and
all rights are reserved jointly by the World Health Organization and the World Psychiatric
Association. The document may, however, be freely reviewed, abstracted, reproduced or
translated, in part or in whole, but not for sale or for use in conjunction with commercial
purposes.
WHO/MNH/MND/98.4
Page i
CONSENSUS STATEMENTS ON PSYCHIATRY OF THE
ELDERLY
The publication of this document represents the culmination of three
years of work jointly developed by WHO and WPA, particularly through its
Geriatric Psychiatry Section. Of course we are very proud of it and hope it
^£)11 receive the same attention and have the same impact as those of the first
consensus statements.
The innovative operational model through which this document was
arrived at is indeed already interesting on its own. Although an initiative
primarily from WPA, several other NGOs, some of the most relevant ones
to the area of Psychiatry of the Elderly were also involved, thus setting a
standard which cannot be ignored in future similar exercises. In addition, the
meetings for deliberations were hosted by the Psychogeriatric Services of the
University of Lausanne, which is a WHO Collaborating Centre for Research
and Training in Psychogeriatrics. The private sector was also involved, since
it was financially supported by a generous grant from Pfizer Pharmaceuticals,
Pfizer, Inc.
We would like to express our gratitude to all institutions involved as
well as to those who participated in the conference, and who are named in
Annex. Our particular appreciation goes to the two Co-Chair of the
meeting, Prof. J. Wertheimer and Prof. T. Arie and to the Co-Rapporteurs,
Dr N. Graham and Prof. C. Katona.
Dr J. M. Bertolote
Department of Mental Health
World Health Organization
WH0/MNH/MND/98.4
Page ii
FOREWORD
Psychiatric troubles are particularly frequent in old age. They are
becoming predominant with demographic aging and raise important
questions in terms of public health policies. The challenge is already of
concern in developed countries since several decades. It is starting to be so
also in developing ones, with life expectancy incresing progressively.
Psychiatric problems in the elderly have very complex causes art i
consequences, implicating among others, brain and physical diseases,
personality factors, social situation. They are matter of prevention, treatment
and rehabilitation. They are found both in the community and in intitutions
(general and psychiatric hospitals, long stay facilities, outpatient
departments, day care centres, etc.) They consequently concern a wide range
of persons including, apart from patients, the public in general, relatives,
professionals involved and political and administrative representatives.
Two previous consensus statements produced guidelines on
Psychiatry of the Elderly and on the Organization of Care in Psychiatry of
the Elderly. This third one focuses on Education. This point is evidently
crucial for the dissemination of knowledge, experience and practice in this
field. The topic is diverse, going from biology of aging to clinical aspects
and to sociological considerations. The public varies from lay people to
professionals from different horizons. The aim is to propose wide guidelines
favouring an education of good quality, taking into account the complex^ 1
of the subject to teach and of the public concerned. This consensus
statement reflects the views brought by representatives of the main
international associations involved in psychiatry of the elderly.
Professor J. Wertheimer
Chairman - Geriatric Psychiatry Section
World Psychiatric Association
WHO/MNH/MND/98.4
Page 1
1. INTRODUCTION
The World Health Organization and the World Psychiatric Association have
recently published two consensus statements on the scope of psychiatry of
the elderly and organization of services in psychiatry of the elderly.
The first consensus statement described the specialty of
psychiatry of the elderly and made several recommendations with regard to
Braining and education (1).
•
The specialty of psychiatry of the elderly requires a grounding in
general psychiatry and in general medicine as well as training in the
specific aspects of both psychiatric and medical conditions as they
occur in older people. Psychiatry of the elderly should be taught in
the variety of settings in which it is practised.
•
Training schemes for all health and social care workers should
include a component on mental health care of older people. Training
in mental health care of older people should be offered at both
undergraduate and postgraduate level and also during continuing
professional development.
•
Education and information about mental health care of older people
should be offered to the general public and to carer groups. The
development of appropriate training manuals with culturally
appropriate material should be achieved for all groups of
professionals and carers.
™
The second statement described the organization of services in
psychiatry of the elderly and emphasized the need of all concerned for
appropriate education, training and information (2).
WHO/MNH/MND/98.4
Page 2
Both Statements take account of pronouncements by the United
Nations and the World Health Organization bearing on health and access to
health care (3-6).
This third statement explores educational issues in greater detail.
Its objectives are to :
•
•
•
•
•
2.
promote development and action on these issues at every level (local,
regional, national and international) for all those concerned;
promote an understanding on these issues and encourage positive
attitudes;
describe an approach to, and a core content for educational
programmes;
indicate the variety of groups to whom education should be offered;
encourage the evaluation and continuous updating of all these
activities.
PRINCIPLES
Education in this field should follow modern principles of adult
education. It should:
•
•
•
•
•
•
offer clear learning objectives centred on the learner’s needs;
ensure that learners are actively involved in their learning;
address attitudes and skills as well knowledge;
be appropriate for the context and culture of the learner;
be systematicaly evaluated;
be ready to challenge assumptions and acknowledge controversy
where it exists;
respect the spirit of the relevant recommendations from the UN and
the WHO.
WHO/MNH/MND/98.4
Page 3
3.
NEEDS
It is necessary to consider to whom education should be offered,
what should be taught and teaching methods.
^Education for whom:
•
•
•
•
•
•
•
•
health and social care professionals - undergraduate, post-graduate
and continuing education;
health and social service managers;
other care workers who constitute the bulk of care staff, especially
in longer-stay institutions, community and primary health care;
family carers, neighbours and others;
voluntary workers;
people in professions not specifically related to health but on whose
work the mental disorders of old people impinge (e.g. lawyers,
policemen, journalists, clergy, architects and designers);
public policy makers;
the general public.
What to teach?
©
The people concerned with this field range from professionals
(generalists and specialists) to the lay public. It is obvious, therefore that the
needs and levels of different groups will vaiy widely. Nevertheless there is
basic information which is common to the needs of all. What follows is a
core curriculum primarily derived from the learning needs of health
professionals. Attitudes, knowledge and skills are embodied in different
degrees in each of the items on the following list.
WHO/MNH/MND/98.4
Page 4
•
•
•
•
•
•
•
•
•
•
•
•
•
The processes of ageing in individuals.
Demography, economics and politics of ageing societies.
Epidemiology, pathology, clinical features, assessment, diagnosis,
treatment and management of the mental disorders of old age
emphasizing the features which differ from similar conditions in
younger people.
The physical disorders and impairments of function which commonly
occur in old age.
The special significance in old age of the interdependence of rnentd^''
physical and social factors.
Prevention and health promotion including recreational and spiritual
issues.
Ethical and legal issues.
Planning, provision and evaluation of services in different settings.
Carers: needs and support.
End of life issues.
Multidisciplinary team work.
Interviewing and communication skills.
Fostering of positive attitudes, insight into the reasons for negative
attitudes, and realistic expectations.
Teaching methods
Guiding principles:
•
Many who work with the elderly do so under pressure and may feel
they have no time to teach. Every activity of a service is a fruitful
educational opportunity, ranging from a visit to old persons in their
own homes to a meeting of a service planning committee.
•
Formal education should fit with different learning styles. The best
way of accomplishing this is to make a variety of different teaching
WHO/MNH/MND/98.4
Page 5
formats available for learners. These may include large and small
group teaching, tutorials and seminars.
•
Carers and users of the service can make a significant contribution to
multidisciplinary groups.
•
Education for multidisciplinary groups can facilitate team work and
dispel inter-professional misperceptions.
t
•
Teaching thrives on association with research and encourages critical
thinking in learners. Where appropriate, learners should themselves
participate in research.
Media (radio, television, newspapers, etc.) - including materials
which range from documentaries to dramas - are excellent ways to educate
patients, caregivers, the public and professionals groups. Already available
information and educational materials which are culturally appropriate should
be used and further developed.
Information technology offers innovations such as distance-based
education, video conferencing, internet, CD ROM programmes and
computer teaching modules. These are also useful.
Evaluation
Evaluation of teaching is always desirable and depends on prior
setting of learning objectives. Accepted methods of evaluation need to be
applied. Aspects for evaluation may include:
•
•
•
Satisfaction of the learners with the teachers and the course content.
Measurable change in knowledge, skills and attitudes.
Improvement in patient outcomes.
WHO/MNH/MND/98.4
Page 6
4.
CONCLUSIONS
There has been considerable growth in awareness worldwide of the
importance of the mental health of older persons, especially in countries
experiencing rapid population ageing. In some countries psychiatry of the
elderly is a recognised specialty.
o
The importance of effective education for all those involved with the
care of older persons with mental disorders is now widely acknowledged.
While a great deal has already been achieved including the development of
excellent teaching resources, there remains a pressing need in many
situations for the establishment and implementation of teaching programmes.
Improved access to existing resources should be facilitated through
international exchange and continuing research.
WHO/MNH/MND/98.4
Page 7
References
1.
WHO. Psychiatry of the elderly: a consensus statement. (Doc.:
WHO/MNH/MND/96.7). Geneva, WHO, 1996.
2.
WHO. Organization of care in psychiatry of the elderly: a
technical consensus statement. (Doc.: WHO/MNH/MND/97.). Geneva,
»^VHO, 1997.
3.
UN. Human Rights: a compilation of international instruments.
Volume I (Second part). United Nations, New York and Geneva, 1994:517530.
4.
WHO. The Jakarta declaration on leading health promotion into
the 21st century. (Doc.: WHO/HPR/HEP/4ICHP/BR/97.4). Geneva, WHO,
1997.
5.
WHO-UNICEF. Primary Health Care: Report of the
international conference on primary health care. Alma-Ata, URSS, 6-12
September 1978.WHO, Geneva, 1978.
6.
WHO. Brasilia declaration on ageing. World Health, 4:21, 1997.
/.
ARIE T. Teaching the Psychiatry of Old Age: A British Point of
View. In: Wertheimer J, Baumann P, Gaillard M, Schwed P (eds.).
Innovative Trends in Psychogeriatrics. (Interdisciplinary Topics in
Gerontology Series No. 26). Basel, Karger, 1989:33-39.
8.
MARIN RS et al. A curriculum for education in geriatric psychiatry.
Am J Psychiatry, 1988, 145:836-843.
WHO/MNH/MND/98.4
Page 8
ANNEX
Consensus Meeting on Education in Psychiatry of the Elderly
Organized by the World Psychiatric Association, Section of Geriatric Psychiatry
Co-sponsored by the World Health Organization
Hosted by the Lausanne University Psychogeriatrics Service
Lausanne, 14-16 May 1998
List of participants
Alzheimer's Disease International
Dr Nori Graham, President
(Co-Rapporteur)
London, England
Ms Anne-Frangoise Dufey
Lausanne, Switzerland
of
Geriatric
International Federation on Aging
Dr Bjarne Hastrup,
Copenhagen, Denmark
Federation
Ms Anne O'Loughlin
Dublin, Ireland
International
Association
Universities of the Third Age
of
of
Mrs Christine Wong
Paris, France
International
Association
Dr Ivan Silver
Toronto, Canada
International
Workers
Association
Prof. Gary R. Andrews
Flinders, Australia
International Council of Nurses
Canadian Academy
Psychiatry
International
Gerontology
Psychogeriatric
Dr Jean Philippe Bocksberger
Geneva, Switzerland
Lausanne University Psychogeriatrics
Service (Lausanne, Switzerland)
of Social
Dr Italo Simeone
Dr Vincent Camus
Dr Carlos Augusto de Mendonga Lima
WHO/MNH/MND/98.4
Page 9
Medicus Mundi Internationalis
Secretariat
Dr Kojo Koranteng
Basel, Switzerland
Mrs Suzanne Scheuner
World
Federation
Education
Mrs Tina Anderson
for
Medical
Mr Lars Gustafson
Lund, Sweden
eWorld Psychiatric Association
Prof. Jean Wertheimer (Co-Chair)
Lausanne, Switzerland
Prof. Tom Arie (Co-Chair)
London, England
Prof. Edmond Chiu
Melbourne, Australia
Prof. Cornelius Katona (Co-Rapporteur)
London, England
- Media
RF_GER_3_SUDHA.pdf
Position: 540 (11 views)