Aging
and Intellectual Disabilities
Improving Longevity and
Promoting
Healthy Aging
Summative
Report
January 2000
A Report Submitted to the
World Health Organization by the International Association for the
Scientific Study of Intellectual
Disabilities and Inclusion International
Acknowledgments
Primary support for the 1999 10th IASSID International Roundtable
on Aging and Intellectual Disabilities was provided by grant 1R13 AG15754-01
from the National Institute on Aging (Bethesda, Maryland, USA) (Matthew P.
Janicki, Principal Investigator) to the University of Rochester (New York) and
partial support for the preparation of this report was provided by grant
H133B980046 from the US Department of Education to the University of Chicago's
Rehabilitation Research and Training Center on Aging with Mental Retardation
(Tamar Heller, Principal Investigator). Also acknowledged is the support of the
IASSID (Trevor Parmenter, President) and the guidance of D. Rex Billington of
the WHO.
This summative report was prepared by Matthew P. Janicki (IASSID) and Nancy
Breitenbach (Inclusion International) as principal editors, from materials
developed by the International Association for the Scientific Study of Intellectual
Disabilities's Aging and Health Issues Special Interest Research Groups'
Working Groups (Principals: Helen Beange, Brian Chicoine, Philip Davidson,
Heleen Evenhuis, Tamar Heller, James Hogg, N. Lennox, Ronald Lucchino, C.
Michael Henderson, Nicole Schupf, Lilian Thorpe, Henny Schrojenstein Lantman-de
Valk, and Patricia Noonan Walsh).
Suggested Citation
Janicki, M.P., & Breitenbach, N. (2000). Aging and Intellectual
Disabilities - Improving Longevity and Promoting Healthy Aging: Summative
Report. Geneva, Switzerland: World Health Organization.
World Health Organization, 2000
To contact the IASSID Aging SIRG, write
IASSID AGING SIRG
Secretariat
c/o 31 Nottingham Way South
Clifton Park, New York 12065-1713 USA
or E-Mail: sirgaid@aol.com
www.waisman.wisc.edu/IASSID/SIRGAID
Executive Summary
Awareness
of the increasing number of aging persons with intellectual disabilities led
the World Health Organization (WHO) and two international organizations concerned
with scientific inquiry and advocacy, the International Association for the
Scientific Study of Intellectual Disabilities and Inclusion International, to
examine the general health status of adults with intellectual disabilities,
identify the conditions that support their longevity and promote healthy aging,
and propose health and social inclusion promotion activities that would
universally foster sound health and improve quality of life.
The
increased longevity of persons with intellectual disabilities in many of the
world's nations is the direct result of medical and social advances which have
also extended the longevity of the general population. Yet, the WHO is aware
that people with intellectual disabilities are still generally regarded as a devalued
class and often disadvantaged when attempted to access or secure social and
health services. With this in mind, and recognizing that scientific and medical
advances can benefit people with lifelong disabilities, this report
encapsulates the major findings and conclusions of the WHO sponsored inquiries
and summarizes the proposals for universal health promotion activities. These
findings and conclusions are drawn from four special reports prepared for the
WHO by the IASSID (physical health, women's health, biobehavioral, and aging
and social policy).
Key issues underlying the reports are:
There is generally a lack of organized public or private sector systems designed to address the needs of persons with intellectual disabilities.
Public attitudes need to be modified, both to create positive and valued status for persons with intellectual disabilities and to improve public support for specialty services that are designed to aid adults with intellectual disabilities.
There is a need for supportive services, health surveillance and provision, and family assistance for person with intellectual disabilities.
Women with intellectual disabilities often find themselves a disadvantaged class and little is done universally to address their specific health and social needs.
While intellectual disabilities have a biological, genetic, or environmental basis, in some nations, they are still viewed as a mental illness.
Health practitioners generally fail to
recognize special problems experienced by persons with lifelong disabilities
who are aging.
Disadvantaged
subgroups of aging adults with intellectual disabilities are at particular
risk. In many nations, older adults with severe and profound impairments are
disregarded or institutionalized. Housing is often inadequate and health
provision neglected. Older adults with mild impairments are often marginalized
and not provided with minimal supports needed to be productive members of their
societies. Rehabilitative services, vocational opportunities, and quality
old-age services are not provided. In many nations, older women with
intellectual disabilities experience challenges that are particular to their
sex. Their specific needs are often overlooked or dismissed. Older adults with
co-morbid conditions experience particular problems and their compound physical
and/or mental health conditions not addressed.
Across
the world, national health provision schemes are often inadequate and do not
recognize the special needs of adults with intellectual disabilities and as
they age, their health needs are not attended to in a manner equivalent to that
of the general population. Health care provision may also be sketchy at best
and specialty services for people with intellectual disabilities are not
available, further compromising their health and potential longevity. In
addition, lifestyle choices and inadequate personal skills may have a major
impact on their health and well-being. Sensory and mobility impairments, morbid
obesity, poor oral hygiene, sexual behavior, and other lifestyle or personal
attributes can also contribute to difficulties.
Yet,
exemplary government policies and practices in health surveillance, provision
and promotion, and formal schemes for social and family supports, as well as
rehabilitative, training, and personal supports do exist. National health and
social policies that are inclusive of people with intellectual disabilities and
provide for special supports and assistance into old age are much needed - as
are education and training initiatives in diagnostic procedures, presentation
of interventions, and provision of supports. Only with special supports for
families, adequate health care, housing, occupational opportunities, and
inclusion in daily life open to all other older people, will the goals of
universal healthy aging and increased longevity for adults with intellectual
disabilities be attained.
The International Association for the Scientific Study of Intellectual
Disabilities (IASSID), a non-governmental organization associated with the
World Health Organization (WHO), was invited by the WHO to prepare a report on
health related aspects and the aging of persons with intellectual disabilities.
The goal of this effort was to identify key features of health and social
policy and practices that would improve the longevity and lead to the healthy
aging of persons with intellectual disabilities throughout the world. The
IASSID, through its Special Interest Research Groups on Aging and Health
Issues, prepared a series of draft reports, and discussed them in conjunction
with representatives of Inclusion International at a specially convened meeting
at the WHO headquarters in Geneva, Switzerland on April, 20-23, 1999.
Representatives of these two organizations then redrafted and submitted the
revised reports to the WHO for worldwide distribution. These four reports are
cited at the back of this document.
This report, prepared conjointly with Inclusion International, provides a
summary of the main issues put forth in the three main reports on physical
health, women's health, and biobehavioral issues affecting adults with
intellectual disabilities, as well as the report on concerns related to social
and aging policy. Included in this summary are the main recommendations from
the four reports for improving health and longevity among persons with
intellectual disabilities. Subsidiary recommendations are contained in each of
the four reports.
Introduction
The World Health Organization takes a broad view of health care, stating
that "health is a state of complete physical, mental and social
well-being and not merely the absence of disease and infirmity." In
doing so, it draws attention to the need to view health as the outcome of
influences in addition to biomedical health care and management. Such a view is
equally applicable to people with intellectual disabilities.
This report recognizes that there are many myths or misconceptions about
intellectual disabilities and aging among persons with lifelong disabilities,
including that people with intellectual disabilities are mentally ill, that
people with intellectual disabilities do not survive to old age, that
disabilities are the result of some wrongful behavior on the part of parents,
that adults with intellectual disabilities can only be cared for in
institutions, and that they are incapable of learning everyday skills, being
educated, or of working. Nothing could be more from the truth. Their
intellectual disability is not a disease. They are not mentally ill. Nor were
they born with a disability due to some wrongful behavior on the part of their
parents. In many countries, people with intellectual disabilities live to old
age, attend schools, work, and live independently in and contribute to their
communities.
Whilst no one definition of intellectual disabilities has gained universal
acceptance, it is generally accepted that the term intellectual disabilities
encompasses any set of conditions, resulting from genetic, neurological,
nutritional, social, traumatic or other factors occurring prior to birth, at
birth, or during childhood up to the age of brain maturity, that affect
intellectual development. These conditions result in a lifetime of lower than
average overall capability for self-determination and general independent
functioning and performance in vocational, social, and personal functions. In
some instances these conditions may occur in conjunction with physical, sensory
or psychiatric impairments of varying degree. Such conditions have variable
impact on the individual, from minimal to severe. They can be compensated for
by a variety of interventions, enrichments, training and/or special assistance
or supports in all spheres of life.
Underlying all of the reports is the recognition that aging is a lifelong
process and that there is no generally accepted age which defines exactly when
people become old. For the purpose of the collective reports, the sixth decade,
when people with intellectual disabilities are in their 50s, was chosen as the
chronological point for determining age-related change. However, this is often
complicated by the occurrence of what appears to be premature aging and
shortened life expectancy in some individuals with intellectual disabilities,
particularly in persons with profound and multiple disabilities and frequently
those with Down syndrome. Life expectancy may also be compromised by poor
health status and living conditions.
Nations vary in their recognition of and provision for adults with
intellectual disabilities. In many cultures, persons with disabilities may not
hold a valued status in societal terms. Consequently, they may have reduced
access to the basic necessities of life, including housing, work opportunities,
nutrition and health care, that are associated with aging in good health.
Barriers to the acceptance of persons with intellectual disabilities can
include prejudicial beliefs about the nature and causes of disability, poorly
organized services or a lack of governmental policies favoring supports for
persons with disabilities, inadequate health and social services, and poorly
trained professionals or practitioners. Poor health status and unfavorable
economic conditions affecting the entire national population may also be
barriers. Such barriers can be overcome with enlightened public policies,
educated professionals and carers, determined advocacy, and other special
compensatory efforts.
Background
There were dramatic increases in life expectancy during the 20th century,
due chiefly to advances in medicine, public health, science, education, and
technology. Globally, while life expectancy increased, disability-free life
expectancy seemed to be stabilizing. Increased longevity and more readily
available services of all kinds have led to an increase in the population of
persons with intellectual disabilities in the developed nations of the world.
It is estimated that as many as sixty million persons may currently have some
level of intellectual disability and that this figure will rise in the coming
years.
Major inequalities do exist, however, depending on sex, region and
socio-economic status. The poorest, least educated people live shorter lives
with greater ill-health.
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 aging process. Numerous adults are surviving into
late old age, with some surviving to become centenarians. In spite of gradual
declines in various functions, they can have active and varied lifestyles with
an excellent quality of life.
Like other people, older people with intellectual disability may have
significant physical health needs, reflecting the social and economic
circumstances which have shaped their daily lives. Environments which foster
healthy social relationships, trust, economic security, sustainable development
and other factors related to advancing the health and well-being of citizens
have been identified by governments as priorities. Healthier communities with
greater social cohesion produce healthier citizens. Further, the effect is
cumulative and lifelong, with good health in childhood affecting and
contributing to good health in older age.
In some nations people with intellectual disabilities may not constitute a
priority given the wider social problems that are to be faced. In general, they
may have restricted social roles and more limited social networks than people
without disabilities, and thus may have fewer opportunities to benefit from
many common experiences open to those without disabilities. Poor social
networks reduce the likelihood of survival into old age.
In considering initiatives to improve the quality of old age in both
developing and developed regions, it is clear that realization must reflect
regional and cultural differences. The UN International Plan of Action on
Aging asserts that each country must respond to demographic trends and the
resulting changes "in the context of its own traditions, structures and
cultural values . . ." This view is equally applicable to older people
with intellectual disabilities. Focusing on aging and intellectual
disability implies that all policies affecting people with intellectual
disabilities are developed in such a way as to maintain, if not improve, their
situation as they age.
What follows is a summary of the main issues, considerations, and
recommendations related to physical health, women's health, and mental health,
as well as service provision. By necessity there may be some overlap in the
discussions as each section examines common concerns from its particular
perspective.
Physical Health Concerns
The majority of people, including people with intellectual disability, live in non-developed market economy countries. Because of a persistent scarcity of information regarding the status and needs of persons with intellectual disabilities in less developed countries, it is difficult to make statements that are universally applicable regarding the "healthy aging" of all people with intellectual disabilities. The highest priorities for the majority of people with and without intellectual disabilities in less developed countries generally include basic health care, adequate nutrition and housing, education, human rights, and political, social and economic stability.
An international perspective on healthy aging for persons with intellectual
disabilities must acknowledge that the available literature is strongly
dominated by the experiences of clinicians and researchers in developed
countries, and that it probably does not reflect everyday realities in
countries with lessor economic status.
The developed countries are definitely witnessing an increase in the longevity of adults with intellectual disabilities and an overall increasingly greater number of such older persons. As more people with intellectual disabilities attain older age, it is important to note that additional functional impairment, morbidity, and even mortality can result from the consequences of early age-onset conditions, through their long-term progression or interactions with older age-onset conditions. In addition, the long-term consequences of therapeutic interventions need to be considered -- examples are movement disorders that may result from the prolonged use of neuroleptic medications, and bone demineralization that may occur secondary to the chronic use of certain anticonvulsants.
On the other hand, it is important to underline the fact that many ageing
persons with intellectual disabilities may be just as healthy as other older
persons without life-long disabilities. This can be attributed to a quality
lifestyle. It may also be due to "differential mortality" - the
tendency for healthier people to live longer. Thus, older cohorts may actually
be healthier in many domains than younger groups of persons with intellectual
disabilities, and show greater functional abilities until the oldest ages. In
order to ensure that all people with intellectual disabilities have an equal
opportunity to achieve old age, access to adequate health care and social
supports throughout the life-span is of prime importance.
Health risks
Certain people with intellectual disabilities have particular health risks.
They 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 disabilities (leading to associated developmental disabilities
such as autism, cerebral palsy, epilepsy, head injury, and sensory
impairments). They may be defined by their living conditions, such as living on
their own or with their families; in specialty rehabilitative or small
residential programs; or in hospitals or large, general purpose institutions.
The resulting lifestyle and environmental issues and health promotion/ disease
prevention practices may directly cause, or interact with, hereditary factors.
They may also be defined by age as when increased longevity of persons with
intellectual disabilities leads to the definition of populations by
chronological older age -- and a subsequent increased risk of acquiring adult
and older-age associated conditions.
Persons with specific syndromes constitute an important segment of the adult
population with intellectual disabilities. 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. The residuals of such syndromes can become manifest at
different stages of the lifespan.
Fragile X syndrome is the most common inherited disorder associated
with intellectual disabilities. Older adults with Fragile X syndrome exhibit
relatively high rates of mitral valve prolapse, musculoskeletal disorders,
early female menopause, epilepsy and visual impairments.
Down syndrome is a relatively common chromosomal disorder that, in addition to causing intellectual disability, results in a relatively high risk for a number of conditions. Throughout the lifespan, persons with Down syndrome manifest higher risks for specific endocrinological (especially hypothyroidism), infectious, dermatological, oral, cardiac, musculoskeletal and other organ system disorders. In addition, they exhibit high rates of impaired vision and hearing. Older adults with Down syndrome are at increased risk for early development of age-related visual and hearing disorders, epilepsy, and Alzheimer's disease. Their longevity is generally some 10 to 20 years less than that of the broader population of people with intellectual disabilities.
Other syndromes (e.g., Prader-Willi syndrome) may not be as common or easily
identifiable as the above; however, the same principle of knowledge of
syndrome-specific issues may permit better functional and health status.
Lifestyles
As adults 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 long-term risks that have
not necessarily been anticipated. Adults with intellectual disabilities living
in the community may be exposed to tobacco use, substance abuse, violent
behavior and high-risk sexual activity (including the risk of AIDS). Older
adults living in congregate care settings may encounter the same risks, in
addition to being exposed to neglect, contagious diseases, and ennui.
Passive lifestyle factors may also pose risks. A sedentary lifestyle, for instance, presents consequent risks of physical deconditioning. Obesity-related diseases such as coronary artery disease, hypertension, and diabetes affect those who are chronically over-weight. For adults with intellectual disabilities living in independent or semi-independent settings, targeting lifestyle may result in substantial gains in longevity, older-age quality of life, and functional capability.
The cumulative research in developed countries suggests that adults and
older persons with intellectual disabilities have rates of adult and
age-related conditions that are comparable to the rates for the general
population, though in some instances the rates are higher. For many people with
intellectual disabilities, the interaction between biological, psychological
and social aspects of aging remains the most important factor in the later
years of life. The risk of chronic diseases acquired during adulthood reflects
the same interplay between hereditary predisposition and environment that is
present in the general older population.
Health assessments
Physical and functional decline in older age warrants careful evaluation. A decline in functional status should not be peremptorily attributed to behavioral issues or pathologies, such as dementia.
Comprehensive evaluations of older persons with intellectual disabilities
experiencing changes often show high rates of concurrent treatable conditions.
Examples include affective disorders, sensory impairments, delirium, and
previously undiagnosed medical conditions. Such disorders may be expressed
atypically. Communication difficulties arising from intellectual disabilities
or associated motor impairments may serve as barriers to accurate medical
evaluation or health services provision.
Behavioral issues constitute another potential barrier. Adults with
intellectual disabilities may have difficulty cooperating with examinations and
procedures. Health care providers should be educated regarding the confusion,
fear, and frustration experienced by many persons with an intellectual
disability when they attempt to access health care services. Extra time may be
necessary to reassure the person and help him or her acclimate to the medical
or examination setting. In some situations, safe, conscious sedation is
appropriate for adults with intellectual disabilities. In others, 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
rehabilitation after disease or injury. Also, teaching adults with intellectual
disabilities how to use assistive or prosthetic devices, such as canes,
walkers, wheelchairs, braces, dentures, eyeglasses and hearing aids, is useful,
but may require time and special techniques.
Health care providers need to address the issue of health care - not just in
terms of healthy living, but also by increasing understanding and confidence in
using health services.
Obtaining health services
For many adults with intellectual disabilities living where health services
in the community are readily available, case complexity can be a significant
important barrier to effective medical care. Whilst older adults are able to
access a variety of health care professionals (such as medical subspecialists,
dentists, audiologists, mental health providers, and others) such
multidisciplinary expertise demands case management. Administrators and policy
makers need to understand that, in some cases, clinically indicated and
relatively expensive techniques and expertise, while requiring careful
management, will prove cost-effective in the long-term.
However, access of persons with intellectual disability to primary health care provision may be restricted by a wide range of factors, among them:
- lack of training on intellectual disability itself,
- lack of training on health issues relative to older persons with intellectual disabilities,
- lack of pertinent information on the medical history of the individual,
- difficulties in undertaking medical examination because of communication problems or behavior problems,
- absence of specialized back-up for complex medical conditions, and
- lack of understanding on the
physician's part concerning informed consent issues.
In addition, access barriers may also result from prevailing community
values, where the devalued status of persons with intellectual disability can
influence the willingness of carers to pursue health care, especially if they
have to contend with material barriers such as distance and financial costs
beyond their means. Yet, when cultural attitudes are not a barrier, even when
health services are available, costs and travel time to seek health or
specialty rehabilitative services can be prohibitive. Such barriers may deter
many low income, otherwise willing, families from seeking help.
Access to health care for older persons with intellectual disabilities can
be further compromised if family carers (who are likely to be elderly) do not
themselves receive adequate health care or are generally inexperienced with
health care systems. No knowing want may be needed or available can be
particularly problematic and a deterrent to aggressive health services advocacy.
Consent
A further issue is the agreement or consent to treatment. The rights
guaranteed to persons without lifelong disabilities must be respected when
health care professionals approach persons with intellectual disabilities.
Adults with disabilities should always be informed of any medical procedures or
treatments proffered and their consent obtained. Providers are under special
obligations to ensure that there is a clear understanding of the parameters of
consent and the nature of the medical treatment to be undertaken. If the person
is not in a position to consent, consent or authorization shall be obtained in
the manner prescribed by law, guided by the person's best interest.
Given all of the above, it is imperative that health and social services
personnel receive training and support in identifying the specific social
support and health care needs of adults and older persons with intellectual
disabilities and that government and other administrators are alert to the
specific legislative, regulatory, and budgetary enablements for provider
organizations to deliver such services. Further, it is important to expose
health care staff and administrators to sound community support models that
enrich older age and sustain healthy aging.
Women's Health Concerns
Just as greater awareness is needed for the needs of girls and women throughout the world, more attention is needed for the personal and social development of girls and women with intellectual disabilities. It is important to understand their experiences and roles, as considered appropriate within their family and culture at each transitional stage throughout the life span.
For example, in many developed nations young women with intellectual
disabilities complete formal schooling and/or vocational training, find
employment, achieve citizenship and build personal friendships and intimate
relationships. Like other women, older women with intellectual disabilities who
have been employed may transition from the active workforce and attend more to
personal and social interests. Yet, most may be discouraged from marriage,
establishing independent homes, and bearing children.
In developing countries, women with intellectual disabilities may not have
the same vocational and lifestyle freedoms as in those living in developed
nations, but may not necessarily be excluded from family or community
activities, or from marriage and childbearing. Yet, because they may have more
sheltered lives, their exposure to available health care or social services may
be seriously limited. It is essential to be attentive to health care concerns
related to the lives of all women with intellectual disabilities as women,
wives and mothers.
The main issues
There are a number of issues which are important for the health of women
with intellectual disabilities as they grow older:
Among women with intellectual disabilities, the average age at onset of
menarche appears similar to that of women in the general population; most
appear to have regular menstrual cycles.
Little is known about menopause in women with intellectual disability.
Limited studies have reported on the median age at menopause for women in
developed countries, but no studies have systematically tracked changes in
hormones and ovarian function with age in a large group of women with
intellectual disabilities.
Although little research has addressed fertility in women with intellectual
disabilities, it is reasonable to assume that most mature women are fertile
unless they have a disorder that affects genital organs or brain regions
responsible for hormones that regulate ovarian function.
Osteoporosis, considered to be characteristic of disorders increasing after
menopause (or as a result of long-term medication), may lead to increased risk
for fractures.
Therapeutic amenorrhea may be induced in women with intellectual disability
who are unable to manage menstrual hygiene effectively, who show self-injurious
behavior related to menstruation, or who risk pregnancy. The most common form
of therapeutic amenorrhea is suppression of menstrual cycles via medication.
Given their relative inability to defend themselves and/or a lack of
knowledge about their rights, women with intellectual disabilities are often
victims of physical and sexual abuse. Offenders are probably known to their
victims and may include care personnel and other carers, family members or
fellow residents of living settings. In some countries women with intellectual
disabilities may be prime candidates for prostitution.
Women with intellectual disability who are treated with psychotropic
medication and/or anti-epileptic drugs may see such medications interfere with
hormonal and metabolic functions, which may have long-term effects on their
health.
Women with intellectual disability may be subjected to irreversible medical
procedures, such as endometrial ablation, hysterectomy and sterilization, with
or without their consent. Such procedures raise important legal, ethical and
bioethical issues.
Just as in the general female population, risks for breast cancer and
cervical cancer increase with age (whether or not women with intellectual
disabilities have the same risk for these cancers as other women is still
subject to debate).
Poor receptive and expressive language, discomfort, and fear may create
difficulties in achieving cooperation in gynecological procedures. Pelvic
examinations and cervical smears may present particular problems, as may the
relative lack of female practitioners with whom contact may be easier. Thus,
women with intellectual disabilities may be at greater risk of certain diseases
than other women.
In both women and men, proper nutrition, exercise, and access to preventive
health care can increase health and longevity. Yet women with intellectual
disabilities generally receive less preventive health care than women
generally, just as women receive less preventive health care than men.
Among adults with intellectual disabilities in developed countries, obesity
and cholesterol levels are generally higher than for the general population and
women are more likely than men to be affected by obesity. In part, this may be
due to women with intellectual disabilities having comparatively more sedentary
lifestyles. In developing countries, women with intellectual disability may be
affected more frequently by malnutrition than are men.
Special concerns
Access to health care varies widely by country. Data from developed nations
indicate low levels of specific health screenings targeting older women with
intellectual disabilities, including mammograms, breast examinations, and pap
smears. Reasons for the lack of such preventive health care include unequal
health insurance coverage, attitudinal barriers in health care professionals,
insufficient health education, fear of examinations, communication
difficulties, and inaccessible examination setups for women with concurrent
physical disabilities (i.e., inadequately designed examination tables and
equipment for mammograms).
Certain medical procedures or treatments raise particular issues, the tenor
of which may differ from country to country. For example, procedures such as a
breast biopsy are a major problem for women who may have difficulty
understanding the procedure itself or the relative merits and disadvantages of
a particular form of treatment for themselves. Sometimes the problem is legal
as well as ethical; for instance, sterilization which may or may not be legally
validated by the community, regardless of whether or not the woman herself has
given conscious assent.
Mental health issues in relation to sexual abuse of women are often poorly
understood and underrated. Serious reactive disorders, such as acting out or
depression among women living alone or with their families, tend to be treated
as behavioral disorders and underlying causes go uninvestigated. As a result,
appropriate interventions or treatments are not provided.
Health education
Women with intellectual disabilities should be able to recognize the
differences between women and men in terms of different body parts, understand
that menstrual periods are something which occur only in women, and understand
that menopause is a time when menstrual periods cease. Often, older women do
not understand why the menopause takes place. Others may lack the means to
describe common physical changes related to menopause (such as hot flashes and
irritability). Those who may benefit from hormone replacement therapy (HRT) may
not understand what is at stake in taking such medication.
Supports for sensitive topics among women with intellectual disabilities are
important insomuch as they may encourage women to explore perceptions of
themselves and the issues related to their sexuality in a way that is
respectful and breaks what appears to be "taboo." Women with
intellectual disabilities may moreover gain support by learning ways to
communicate their concerns, including an understanding that they have the right
to express any feelings of discomfort and/or to ask questions of health
professionals.
It is important to help all women, and in particular women with intellectual
disabilities, develop more positive perceptions about being a woman and growing
older, as well as putting her disability and its possible effects on her aging
in a context.
Biobehavioral and
Mental Health Concerns
Mental health disorders are those that can be classified by
diagnostic systems such as the WHO's ICD-10. Biological, psychological and
social factors disorders may all contribute to their expression. Behavioral
disorders, conversely, are patterns of maladaptive behaviors (usually as
perceived by an informant) that interfere with typical life functioning. They
may be related to another mental health disorder in the individual, to
biological vulnerability, to long-standing learned behaviors, or to a mismatch
between environmental expectations and resources with respect to the
individual's capabilities and wishes.
Although less common than behavioral disorders, major mental health
disorders still occur in older adults with intellectual disabilities with an
overall prevalence of about 10%. Some disorders, such as dementia, increase
with age. Dementia occurs at about the same rate as in the general population,
except that it appears at a greater rate (and at a younger age) in adults with
Down syndrome. As in the general elderly population, psychotic disorders may
also increase with age (although psychoses which appeared in youth may
stabilize). They are, however, less frequent than mood and anxiety disorders.
Impact of everyday stressors
Social, cultural, environmental and developmental factors can have
significant impact on the expression of both psychiatric and behavioral
disorders in older people with intellectual disabilities. Stressors may be
multiple, and include separation from or bereavement as the result of the death
of a parent, other relative, or friend; loneliness; or sudden relocation.
Though much remains to be clarified as to quantifying specific influences on
age-related changes in persons with intellectual disabilities, the general
consensus is that perceived symptoms need to be evaluated in a broader context,
and not necessarily attributed to one individualized factor. They should be
explored as part of a complex interaction of the individual with his or her
environment.
Biological factors
Biological contributions to mental health and behavioral disorders are also
important. Major mental health disorders in older people with intellectual
disabilities may have considerable negative impact on cognitive, affective and
general functioning, as well as overall quality of life. Examples include
sensory loss, depression, dementia, nutritional abnormalities, and chronic
medical conditions provoking chronic pain and discomfort.
Mental illnesses such as schizophrenia or bipolar disorders continue to be
as present in old age as in the general population. It is important therefore
to detect and optimally treat these. Diagnosis is more difficult in older people
in general due to higher rates of comorbidity, polypharmacy and a reduced
tendency to express psychological complaints (as compared to physical
complaints). This is magnified in adults with intellectual disabilities,
particularly among those adults with the most severe impairments.
The presence of seizure disorders further complicates the assessment of
mental functioning (although this may be more pronounced in younger multiple
disabled adults than in older adults). Generally late onset seizures signal an
emerging problem, such as Alzheimer's disease. Other challenges include
communication barriers, baseline behavioral abnormalities (secondary to brain
abnormalities, learned maladaptive behaviors, and environmental deprivation)
overlapping with core mental illness and more florid stress- related
decompensation.
Pharmacotherapy used in severe, potentially harmful behavioral syndromes or in the more biologically driven mental disorders, must be tailored to age-related vulnerability. Medication pharmacokinetics, including drug volume of distribution, protein-binding factors, hepatic metabolism and renal clearance need to be considered in formulating psychotropic regimens.
Treatment response time often lengthens with old age, and unfamiliar environments
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 any
medication. Adverse effects of psychotropic medications, such as sedation,
increased confusion, constipation, postural instability, falls, incontinence,
weight gain, sex steroid dysregulation and other endocrinologic or metabolic
effects, and movement disorders must be minimized.
Prevention strategies
Practitioners dealing with behavioral and mental disorders should first consider prevention strategies which can intervene at different times. Primary prevention strategies are implemented to anticipate and prevent occurrence of the problem.. Secondary prevention is early treatment of an emerging problem to prevent its full expression, and tertiary prevention strategies minimize functional impairment once the problem is firmly established.
Primary prevention strategies for behavioral and mental health disorders are
not well analyzed, but some issues related to lifestyle and supports are known
to be associated with prevalence. Decreased use of large institutions can
reduce the frequency of a variety of maladaptive behaviors and infectious
diseases, as well as mitigate poor social and emotional development. In
developed nations, polypharmacy (which is responsible for many other secondary
adverse effects) may also occur, specially in large institutions.
Increased work on communication skills and identification of sensory
deficits can encourage adaptive behavior. When trained to understand and deal
with the emotional needs and stresses of adults, staff can provide more
emotionally supportive environments that minimizes the occurrence of
challenging behaviors or the perception of the person as "a problem."
Secondary prevention of mental health and behavioral disorders involves
appropriate early detection, assessment and treatment of the designated problem
by careful orchestration of biological, psychological and social interventions.
Whenever feasible, all persons involved (the adult, professional staff, family
and friends from the community) should be involved. Training and information
should be provided to allow non-professional carers to continue effectively
aiding after professional involvement has ceased. Modifications may be
necessary in the home and work environments as well as in staff approaches to
the person. Needs that are expressed through maladaptive behaviors must be met
more productively, and alternate expressions taught to all concerned.
In more sophisticated environments, supportive therapy, individual or group
behavioral therapy, family therapy and social skills training may all be of help,
as may be the involvement of spiritual elders or healers, depending on the
cultural milieu.
Training and education
Often making a reasoned assessment of mental status is fraught with
difficulties. Health care providers who are not familiar with intellectual
disabilities may experience difficulty in making accurate mental health
assessments. Carers who are most able to report changes in usual functioning
generally do not have the necessary knowledge of mental health disorders.
Records of previous levels of functioning or personal histories may be
unavailable or unreliable.
Unfortunately there are few clinicians (even in the developed nations) who
possess the skills necessary for bridging such gaps, or for undertaking
appropriate interventions for behavioral difficulties experienced by adults
with intellectual disabilities. There are fewer still who are aware of the
psychological issues or dynamics related to functional decline, grief secondary
to loss of family or friends, and other life changes that take place as people
age.
Cultural perspectives on normative behavior may further color how seemingly
"deviant" behavior (which may be attributed to intellectual
disabilities) is perceived. Ideally, there should be a core of professionals and
clinicians with specialized training in intellectual disabilities. Mental
health, psychiatric, neurological, and psychogeriatric professionals or
clinicians should receive training in intellectual disabilities. Such training
must stress the differentiation of intellectual disabilities from mental
illnesses and the differentiation of psychopathologies from behavioral and
reactive disorders. Furthermore, specialized resource centers should be
available to which clinicians, workers, families and other carers can turn to
seek information and referral.
Service Concerns
People with intellectual disabilities living in developed countries
generally have access to essential services. However, countries vary in their
models of care provision. Thus, it is worth noting the general barriers that
exist in providing social supports and health care to people in general and to
those with intellectual disabilities. It is important that health care
providers and policy makers acknowledge that many people with intellectual
disabilities have special needs which may require modification of standard
health care practices and service models.
Specific services providing physical and mental health care for persons with
intellectual disabilities, regardless of their age, are not necessarily
available throughout the world. Services that specifically provide care to
older people with intellectual disabilities are extremely rare. Moreover, in
some regions basic life necessities, let alone physical or mental health delivery,
are barely available for the general population. Persons with intellectual
disabilities are often the last to benefit when basic health or mental health
services are made available. In these situations, service provision, such as
basic supports, needs to be adapted to best deal with the local environment.
The overriding goal in the development of any specialty services, is to
include the acceptance of basic principles, which include maintenance of
respect for the individual and his or her family, inclusion of the person's
needs and wishes in any support plan, and development of support plans that are
minimally restrictive, culturally sensitive, and which foster the growth and
autonomy of the person.
Outcomes that serve as a basis for demonstrating the social value of
intellectual disability services may include:
Practical, leisure, or life enhancing skills (such as those involved in
self-determination and those which allow a person to access common
opportunities offering enduring benefits);
Improved or maintained dietary and general health status that prevents
physical health factors from hindering typical activity;
A varied rhythm of life
Recognition that challenge and productivity must continue throughout old
age;
An increased and well-established social network; and
Participation on a regular basis in the general life of the community, with
friends and acquaintances of one's preference.
In implementing such objectives, consideration must be given to several underlying problems. One is that health care systems do not necessarily distinguish between people with mental illness and people with intellectual disabilities. Another is that the prevalent literature comes from developed nations where the longevity of adults with intellectual disabilities is more pronounced and has become a normative phenomenon. To what extent this same longevity and population profile is generalized to all nations, including those with developing economies, remains to be seen. Data from developed nations may not be easily translated to everyday realities in other countries. Yet another is fiscal realities. From a policy perspective, developing nations may have to choose between allocating limited resources to such practices as diagnosis and treatment of psychiatric and behavioral disorders in persons with intellectual disabilities and improving the nutritional and health status of the general population, or prevention of specific causes for intellectual disabilities.
However, any given culture may have its own valued means of improving the
health and quality of life of its members, including ways that have only
recently attracted the interest of developed societies. Consistent with the UN
Standard Rules for Equalization of Opportunities for Persons with Disabilities,
recognition should be given to the value of persons with intellectual
disabilities and resources should be provided to improve their general health
status so that longevity consistent with that of the general population becomes
the norm. Nations should devote resources to treatment of physical, psychiatric
and behavioral disorders that impede or distort normal aging in this
population. However, in order to do so, nations will have to adopt beliefs that
value the lives and the productivity of persons with intellectual disabilities.
In developed nations, aging-supportive social and health policies should be
focused on promoting productive or successful aging for all. In developing
nations age-supportive public policies should be focused on basic functions,
such as promoting healthy aging and encouraging survival into old age. Once
such basics are achieved, then the goals of productive or successful aging can
be universally incorporated into national public policy structures.
It is unrealistic in the context of developing services for older people to
split this emerging population off from the wider field of aging. The need is
to develop infrastructures for health and aging which can be accessed by older
people with intellectual disabilities. In this way, natural inclusion can be
facilitated, supported by relevant training for both professionals and the
wider public. Further, specialized resource centers need to be available to
which clinicians, families and carers can seek information, referral and
training.
In every country, there have been long-standing difficulties for people with
intellectual disabilities in accessing services for physical restoration or
rehabilitation, sensory (hearing, vision) impairments, and dental care, as well
as other health-related services. These difficulties are exacerbated in
developing regions where access to such services is limited for the entire
population. Lack of services to address these needs often allows easily
remedied conditions to become barriers caused by disabilities and reduces the
participation of people with intellectual disabilities in daily life. Also, the
need for health-related services may increase as people with intellectual
disabilities age.
Some nations have relied on institutional settings, but most rely on
families to provide care. As the life expectancy of persons with intellectual
disabilities increases, families are under new pressures to maintain care over
a longer period of time. Safety nets must be provided to ensure that, in the
absence of family support, persons with intellectual disabilities do not find
themselves abandoned to starve or condemned to poorly organized and inadequate
services. Decisions about when to maintain in-home care or to plan for transitions
to out-of-home living situations should be guided by considerations of service
needs, consumer choice, service availability, current and future health needs
and the potential consequences of transitions.
Families who continue to provide lifelong care require appropriate supports.
Although in some instances there may be a decreasing number of older adults
still living with their families, often, in many regions of the world,
long-term family caring remains the norm. The extent of support for such families
depends upon the kind of service provision available in the society, as well as
cultural attitudes toward family responsibility. Where family care continues,
then the social and health needs of carers should be viewed as a priority and
met through appropriately focused services.
In most nations, the family provides the main informal supports for a person
with an intellectual disability. However, in the absence of such family
supports or mechanisms for supporting the families who are the carers, the lack
of safety nets can result in extreme outcomes, such as starvation, further
impairment, or even greater marginalization. Thus, nations with poorly
organized or non-existent mechanisms for family supports may place their
citizens with disabilities in jeopardy.
While the family constitutes a key element in the social networks of people
with intellectual disabilities, such networks are typically restricted to
family members, service providers and peers with intellectual disabilities. The
value of these relationships should not be underestimated or undervalued.
However, the desirability of extending networks to include other adults, both
younger and of similar age, is widely recommended. Such an extension has the
potential for enriching the lives of people with intellectual disabilities and
increasing social participation, as well as enhancing the life of the wider
community.
At the heart of an inclusive policy is acknowledgment of the rights of the
person to live in a dwelling appropriate to her or his culture in the
mainstream of that society. As noted in the UN International Plan of Action
on Ageing: "Housing for the elderly must be viewed as more than a mere
shelter. In addition to the physical, it has psychological and social
significance." Thus, in developed regions this may typically involve an
ordinary house or apartment in an urban setting, often with some degree of
independence. In developing regions, life in a rural setting may be the more
typical dwelling place, with conditions greatly dependent upon the status and
economic conditions of the family. In either setting, whenever possible,
institutional care should be avoided, as should be dwellings isolated from the
main community. Where isolated, segregated facilities exist, policies leading to
transition of older as well as younger persons with intellectual disabilities
toward community settings should be the objective.
In nations with undeveloped social and vocational training services and where
enriched opportunities for health and development are only provided in
segregated facilities, policy should mandate the involvement of each person
within the greater community and the freedom to return to their community once
training or other supports have achieved their goals.
Support in individual homes should be related to the level of dependency of
the person and should be sensitive to, and accommodate, age-related changes.
Personal choice with respect to lifestyle should be central to the home's ethos
as this will determine in a significant way the person's quality of life. In
addition, suitable adaptations to enable the person to cope with functional
difficulties arising as they age should be available.
Both the general public, policy makers and front-line service providers
require information to better understand older people with intellectual
disabilities. The UN International Plan of Action on Aging urges
governments and international organizations to educate the general public with
respect to aging and the aging process. Such education needs to encompass older
people with intellectual disabilities and to work against the compound negative
stereotypes associated with older people and those adults with intellectual
disabilities.
Staff in such settings may require training to integrate age-related
information and practice into their existing practices. Progression toward the
integration of older people with intellectual disabilities into generic elderly
services requires that staff in those services receive training with respect to
both intellectual disability and age-related issues. Indiscriminate
aggregation of impaired elderly and younger disabled persons should be avoided
and specialty services for older persons used only when they provide
exceptional social and personal benefit to older adults with intellectual
disabilities.
Recommendations
Over their life-span, adults with intellectual disabilities should maintain the same array of preventive health habits and receive the same protective health services as those offered to the general population. To achieve this goal:
Health care providers throughout the world, caring for people with
intellectual disabilities of all ages, should adopt a life-span approach that
recognizes the progression or consequences of specific diseases and therapeutic
interventions.
Functional decline in adults and older persons warrants careful medical
evaluation. Since undiagnosed mental health and medical conditions can have
atypical presentations in people with limited language capabilities, regular
screening for physical and sensory impairments should be implemented during
particularly sensitive moments in the life cycle, such as childhood and the
late-adulthood years. In promoting general well-being:
Adults with intellectual disabilities and their carers need to receive appropriate and ongoing education regarding healthy living practices in areas such as nutrition, exercise, oral hygiene, safety practices, and the avoidance of risky behaviors such as tobacco use and substance abuse.
Health care providers serving adults and elders 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. Thus:
Nations should ensure that there are sufficiently educated and trained
medical and health personnel to provide appropriate preventive and
treatment-oriented health and social services.
Promoting women's health across the life-span needs to be seen as part of a
global strategy, and the vulnerabilities and sources of well-being for women
with intellectual disabilities must be addressed vigorously. Research questions
of significance to the health and aging process among women should receive
special attention. Since it is WHO policy to directly involve women in
informing, shaping and evaluating health interventions which concern them
directly, women with disabilities and/or representatives of relevant disability
organizations should be involved as partners in the formation of health
strategies and interventions. Thus:
The distinctive health care needs and relatively low socio-economic
status of women with intellectual disabilities should be recognized and
services provided to help overcome these distinctions.
Promoting sound mental health involves improving the detection and holistic
assessment of both reactive behaviors attributable to life stressors and to
more problematic mental health disorders such as depression, anxiety and
dementia in older people with intellectual disabilities. To this end, WHO and
nations should work earnestly to increase the mental health knowledge and
skills in professionals, carers, and families of older people with intellectual
disabilities. With this in mind:
National preventive health strategies should include ways to promote
mental health and minimize negative outcomes of mental health problems in older
people with intellectual disabilities and to improve the quality of life in
older people with intellectual disabilities.
Where a policy of integration with generic elderly services is undertaken,
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. Hence:
National public policies should recognize the contribution of adults with
intellectual disabilities to the greater population, and when appropriate,
specialized services and assistance should be provided, and equitable access to
generic services should be ensured.
A detailed program of research that takes into account the respective
economic and cultural contexts of developing and developed regions needs to be
promoted and implemented. The research and informational needs of developing
countries should be defined and their technical and financial requirements
worked out in order to ensure that appropriate goals are met. To this end,
governments and the academic community should undertake a course of research
that will help further expand knowledge of the aging process among older adults
with intellectual disability. Included among these efforts should be studies of:
Structural practices endemic to developing nations that
successfully promote longevity and healthy aging of persons with intellectual
disabilities, as well as practices that promote successful and productive aging
of persons with intellectual disabilities in developed and developing
nations, and 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.
Morbidity and mortality studies of older people with intellectual
disabilities in developing nations and 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 special
provision is required.
Evaluation of programs aimed at maintaining functional abilities,
extending competence in later life and in general enhancing quality of life and
factors which lead to increased inclusiveness in society with respect to both
age-peers and intergenerational solidarity.
Cross-cultural studies that will ensure that common aspects of quality
provision are identified as well as specific cultural influences of
significance and cultural and economic factors that support family caring.
Acknowledgments
The IASSID and Inclusion International acknowledge the contributions of the
many persons and organizations to the development and revision of the reports
on healthy aging and intellectual disabilities, as well as the time and effort
contributed by members of each of the four working groups. In particular,
appreciation is extended to Matthew P. Janicki, Ph.D. (USA), Heleen Evenhuis,
M.D. (NL), chairs, respectively of the IASSID's Aging and Health Issues Special
Interest Research Groups, and to the following working group principals:
Patricia Noonan Walsh, Ph.D. (IRL), Lilian Thorpe, M.D. (CAN), James Hogg,
Ph.D. (UK), Philip Davidson, Ph.D. (USA), Helen Beange, M.D. (AUS), C. Michael
Henderson, M.D. (USA), Nicole Schupf, Ph.D. (USA), Tamar Heller, Ph.D. (USA),
Henny van Schrojenstein Lantman-de Valk, M.D. (NL), and Ronald Lucchino, Ph.D.
(USA), and to Nancy Breitenbach (F) from Inclusion International.
Links to Main Documents
1 Evenhuis, H., Henderson, C.M., Beange, H., Lennox, N., Chicoine, B., &
Working Group. (2000). Healthy Aging - Adults with Intellectual
Disabilities: Physical Health Issues. Geneva, Switzerland: World Health
Organization.
2 Walsh, P.N., Heller, T., Schupf, N., van Schrojenstein Lantman-de Valk,
H., & Working Group. (2000). Healthy Aging - Adults with Intellectual
Disabilities: Women's Health Issues. Geneva, Switzerland: World Health
Organization.
3 Thorpe, L., Davidson, P., Janicki, M.P., & Working Group. (2000). Healthy
Aging - Adults with Intellectual Disabilities: Biobehavioral Issues.
Geneva, Switzerland: World Health Organization.
4 Hogg, J., Lucchino, R., Wang, K., Janicki, M.P., & Working Group
(2000). Healthy Aging - Adults with Intellectual Disabilities: Aging &
Social Policy. Geneva: Switzerland: World Health Organization.
Copies of this report can be obtained upon request
from:
Clearinghouse on
Aging and Developmental Disabilities
RRTC on Aging with
Mental Retardation
Institute on
Disability and Human Development - M/C 626
The University of
Illinois at Chicago
1640 West Roosevelt
Road
Chicago, IL
60608-6904
[Phone - 312 413
1860 - Fax: 312 996-6942 - E-Mail: rrtcamr@uic.edu]