Fact
Sheet: AGING
Older Adults and Their Aging Caregivers
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Q. How many older people
with
intellectual disabilities/mental retardation are there?
Current estimates
for adults age 60 and over with intellectual disabilities/mental
retardation and other developmental disabilities (e.g., cerebral palsy,
autism, epilepsy) range between 600,000 and 1.6 million. This
population is growing rapidly, and although many persons are
unidentified and the true number is not known, we can expect that by
2030, there will be several million.
Q. How do people with
intellectual
disabilities/mental retardation age compared to the general population?
- In many ways
they age the same as do people in the general population. The
life-expectancy of the majority of persons with intellectual
disabilities/mental retardation approaches or equals that of the
general population. Factors that impact on a person’s aging
are genetics, lifestyle choices, environmental factors, and attitude.
How pre-existing conditions interact with these factors will result in
the unique manifestation of a person’s aging. Compared to
persons in the general population, most individuals with intellectual
disabilities/mental retardation will have similar rates of older
age-related health conditions. Including coronary heart disease, type 2
diabetes, some forms of cancer, osteoarthritis, disorders of hearing
and vision, and dementia. Risk factors for older age-related health
conditions (e.g., obesity, high blood pressure, high cholesterol, lack
of exercise, smoking, and alcohol-related concerns) are the same as in
the general population.
- Specific groups
of persons with intellectual disabilities/mental retardation or other
developmental disabilities, such as those with Down syndrome or
significant lifelong physical disabilities, may exhibit particular
patterns of older age-related health disorders. These are superimposed
on disorders acquired during early development.
Older persons
with Down syndrome are at higher risk for developing Alzheimer disease
at earlier ages compared with older persons in the general population.
However, many older persons with Down syndrome may show functional
decline because of other treatable health problems, such as
hypothyroidism, depression, and visual and hearing loss. The symptoms
of these health problems may sometimes be mistaken for signs of
dementia or exist along with Alzheimer disease, and worsen the
functional consequences in older persons with Down syndrome. Notably,
many older adults with Down syndrome do not show symptoms of dementia
in spite of the fact that studies show that almost all older adults
with Down syndrome have the brain neuropathology that, is indicative of
Alzheimer disease.
Older persons
with cerebral palsy may develop secondary conditions related to or
caused by the lifelong consequences of the physical disability,
including chronic pain, osteoarthritis, and osteoporosis.
Older persons
with long histories of using specific medications (e.g., psychotropic,
antiseizure) are also at a higher risk of developing secondary
conditions (e.g. tardive dyskinesia, conditions related to being
overweight, or osteoporosis).
Q. What are the
age-related
concerns of adults with intellectual disabilities/mental retardation
and other developmental disabilities and their families?
They are the
concerns of all aging adults—securing housing, living
independently, getting help when it is needed, leading productive and
meaningful lives, and staying healthy. The situation is more
complicated for some older adults with intellectual disabilities/mental
retardation and other developmental disabilities, because, on the
whole, they are more dependent on caregivers (family members as well as
agency staff).
Q. Is there enough
housing for
aging adults with intellectual disabilities/mental retardation?
Research has shown
that both younger and older adults with intellectual
disabilities/mental retardation and other developmental disabilities
are able to benefit from living in community settings. Because many of
these individuals live on limited incomes and there is a dearth of
affordable housing, especially in the large urban areas of the U.S.,
finding adequate housing is a problem. It is important to find housing
that is practical, safe, or easy to live in for older persons. For
instance, problems in ambulation may make it difficult to manage
stairs, which is an important consideration in finding a place to live.
Q. Can aging adults with
intellectual disabilities/mental retardation and other developmental
disabilities remain in their homes? Can they "age in place?"
They can do this
with the proper support. There will be an increased need for services
and supports for older adults with intellectual disabilities/mental
retardation and other developmental disabilities, whether they are
living independently, with their families, or in other residential
settings. These services and supports, which can enable them to
maintain functioning and live as independently as possible, include
personal care services, assistive technologies, home health care, and
other in-home supports. Assistive technologies often include mobility
and communication devices, home modifications, and techniques for
maintaining and improving functioning.
Q. How do aging adults
with
intellectual disabilities/mental retardation and other developmental
disabilities continue to lead productive and meaningful lives as they
age?
Older adults with intellectual disabilities/mental retardation and
other developmental disabilities have many of the same age-related
concerns as older adults. However, they typically have less income,
fewer opportunities to make choices, and less knowledge of potential
options than do older adults in the general population.
As is true for any
older person, older adults with intellectual disabilities/mental
retardation and other developmental disabilities differ widely in their
desire to retire, with many preferring to continue in work or
vocational activities. This is often related to the need for ongoing
socialization and support, not always because of a desire to keep on
working. Because many of these adults are unemployed, underemployed, or
participating in day or sheltered programs with little or no pay and no
pension plans, the prospect of retirement may take on a different
meaning. They typically have not been employed most of their adult
lives, few have retirement plans and little or no retirement income.
They can, however,
remain active by using available community services. Community
inclusion models include (a) links with aging services, such as senior
centers, companion programs, and adult day care; (b) church-run or
other recreational programs in the general community; and (c)
later-life planning educational programs. Many community services
agencies are developing individualized options, including preferences
for working part-time. The success of these options depends on the
follow-up formal and informal supports available in the community. To
be more responsive to individuals' needs and preferences, agencies rely
on volunteers, variable reimbursement rates, external funds, and
flexible schedules.
Q. How can we promote
optimal
health in older age?
Promoting healthy
living requires a lifespan focus, starting in childhood and continuing
through adulthood into old age. We need to understand the connection of
the impact of lifestyle choices in people’s younger years on
their health as they age.
Many health
conditions in old age are related to long-term lifestyle factors.
Obesity among this population, particularly for females, is higher than
for the general population. Exercise, proper diet, and weight control
need to be promoted to prevent older age-related health disorders, such
as type 2 diabetes and coronary heart disease.
Older persons with
intellectual disabilities/mental retardation and other developmental
disabilities may have problems with access to specific types of health
services. Advocacy is needed so that access issues (transportation,
environmental modification, special equipment) are addressed to enable
the provisions of primary health care, cancer screening, dental care,
etc.
Older adults with
mental retardation need adequate health insurance.
Specific screening,
diagnosis, treatment, and rehabilitation technologies need to be
developed or implemented. Many older adults with intellectual
disabilities/mental retardation often have difficulty communicating
their symptoms or concerns. These communication difficulties are often
aggravated by severe cognitive disability, autism, mental health
disorders, early dementia, or cognitive decline. They also may have
difficulty cooperating during diagnostic or screening procedures or
participating in rehabilitation efforts. Health care providers
(including physicians, nurses, and dentists) need training to deliver
high quality health care to persons with severe cognitive or behavioral
problems. They also need to be familiar with the correct medications to
prescribe based on the age and the physical capacity of the person.
Research is needed
to determine the types and prevalence of health disorders in older
persons with intellectual disabilities/mental retardation and other
developmental disabilities. A lifespan approach is required because
many older age health disorders have their origin in lifestyle choices
made at earlier ages and may result in secondary conditions that can be
prevented, or effectively diagnosed and treated, at early stages.
Q. How can we provide
support to
families who are primary caregivers and who are declining themselves?
How can we provide
support to families who are primary caregivers
Families continue
to be the primary providers of care. Because adults with intellectual
disabilities/mental retardation and other developmental disabilities
are living longer, families have a longer period of caregiving
responsibility. Older families become less able to provide care as
parents and siblings deal with their own aging, careers, and other
caregiving responsibilities.
Older family
caregivers have concerns about planning for the time when they can no
longer provide care to their relative. Future planning involves
providing for residential, legal, and financial arrangements in
addition to health care, vocational/leisure activities, and community
supports.
Key service needs reported by older family caregivers are (a)
information regarding alternative places to live, (b) financial plans,
(c) guardianship, and (d) respite services. Although in the last 10
years there has been an increase in funding for family support
programs, these programs represent a small portion of spending for
developmental disabilities services, and often target families of
children. More needs to be done to support families of adults.
Q. What are the key aging
service
programs?
The Older Americans
Act funds comprehensive support services for adults age 60 years and
older and can also benefit older adults with intellectual
disabilities/mental retardation and other developmental disabilities as
well as their older family caregivers. The services include senior
centers, nutrition sites, home-delivered meals, homemaker services, and
case coordination. Area Agencies on Aging are a starting point for
getting information about local services. The Older Americans Act and
other federal agencies fund employment opportunities and volunteer
programs for older adults.
Q. What is AAMR's policy?
The AAMR believes that citizens with disabilities should have access to
services that promote quality of life through full participation and
community integration. Their empowerment should be strengthened through
systems integration and research and training programs.
References
and Resources
RESOURCES
A good resource for books, journals, and fact sheets on older adults
with mental retardation and other developmental disabilities is the
Clearing House on Aging and Developmental Disabilities. Contact
information is as follows:
Clearinghouse on Aging and Developmental Disabilities
Department of Disability and Human Development
University of Illinois at Chicago, 1640 W. Roosevelt Road
Chicago, IL 60608-6904
(800) 966-8845 (V) or (800) 526-0844 (Illinois Relay Access).
www.uic.edu/orgs/rrtcamr/
Selected References
Davidson, P. W., Prasher, V. P, & Janicki, M. P.(2003). Mental
health, intellectual disabilities and the aging process. Oxford, UK:
Blackwell.
Davis, S. (2003). Family Handbook on Future Planning. Washington,
DC:The Arc.
Janicki, M.P. & Dalton, A.J. (Eds.) (1999). Dementia, Aging,
and Intellectual Disabilities: A Handbook. Philadelphia: Brunner-Mazel.
Prasher, V. P., & Janicki, M. P. (2002). Physical health of
adults with intellectual disabilities. Oxford, UK: Blackwell.
Seltzer, M. M. (Guest Ed.). (2004). American Journal on Mental
Retardation [Special Issue on Aging], 109(2).
Walsh, P. N., & Heller, T. (2002). Health of women with
intellectual disabilities. Oxford, UK: Blackwell.
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