OLDER ADULTS WITH MENTAL RETARDATION AND THEIR AGING FAMILY CAREGIVERS
Tamar Heller, Ph.D. and Alan Factor, Ph.D., Rehabilitation Research and Training Center on Aging with Mental Retardation, Institute on Disability and Human Development, University of Illinois at Chicago (partially funded by the National Institute on Disability and Rehabilitation Research #H133B30069)
There are an estimated 526,000 adults age 60 and older with mental retardation and other developmental disabilities (e.g., cerebral palsy, autism, epilepsy). Their numbers will double to 1,065,000 by the year 2030 when many of the post World War II "baby boom" generation born between 1946 and 1964 will be in their sixties.
The life expectancy and age-related medical conditions of adults with mental retardation are similar to that of the general population unless they have severe levels of cognitive impairment, Down syndrome, cerebral palsy, or have multiple disabilities.
The onset of age-related changes for people with mental retardation may occur earlier for certain disabling conditions such as Down syndrome. Some research has indicated that sensory, cognitive, and adaptive skill losses occur earlier for adults with Down syndrome compared to the general population and other adults with mental retardation. There appears to be a higher prevalence of Alzheimer's disease in adults with Down syndrome and it is likely to occur at an earlier age compared to the general population. For adults with Down syndrome, symptoms of dementia may often be caused by other conditions that are treatable such as hypo/hyperthyroidism, depression, and sensory impairments. Persons with a lifelong history of certain medications (e.g., psychotropics, antiseizure) are at a higher risk of developing secondary conditions like osteoporosis and tardive dyskinesia
Developing sufficient housing options for older adults: A recent national survey estimated that 60,876 persons with mental retardation and other developmental disabilities were on waiting lists for residential services in 37 states. As adults age there is a growing need for housing options out of the family home. Concurrently, there has been a large increase in the use of community-based smaller homes and supported living arrangements. Also, over 10,000 adults with mental retardation/developmental disabilities have moved out of nursing homes since 1987. These trends are expected to continue. Many of the residents who have experienced these residential transitions have included older adults. Research has shown that both younger and older adults are able to benefit from these transitions.
Enabling adults to "age in place": The growing numbers of adults with mental retardation will increase the need for services and supports that enable them to maintain functioning and continue living as independently as possible, whether they are living with family or in other residential settings. Examples of such services and supports include personal care services, assistive technologies, home health care and other in-home supports. Assistive technologies could include mobility and communication devices, environmental accommodations, and techniques for maintaining and improving functioning.
Supporting productive and meaningful lives: Older adults with mental retardation have many of the same age-related concerns as other older adults. However, they typically have had less experience and opportunities in making choices, and have limited knowledge of potential options. Older adults with mental retardation differ widely in their desire to retire, with many preferring to continue participation in work or vocational activities. Given that many of these adults are unemployed, underemployed, or participating in day or sheltered programs with little or no pay, the prospect of retirement may take on a different meaning than it does for persons who have been employed most of their adult life and who may have retirement income.
Community inclusion models include: 1) links with aging services, such as senior center/companion programs, and adult day care; 2) recreational programs in the general community; and 3) later-life planning educational programs. many community service agencies are developing individualized options, including preferences for working part-time. The success of these options depends on the follow-up support from community service agencies, families, and friends 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.
Promoting healthy living: As persons experience age-related declines in physical health they are likely to require increasing levels of helath care. Major health issues for adults with mental retardation living in the community are proper nutrition and sufficient exercise. Obesity among this population, particularly for females, is higher than for the general population.
Providing support to families who are primary caregivers and are experiencing diminished capacity: Families continue to be the primary providers of care. At least 80% of adults of all ages with mental retardation live at home, and many may not be known to the developmental disabilities service system. Because adults with mental retardatio 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. Key unmet service needs reported by older family caregivers are for information regarding residential programs, financial plans, and guardian and respite services. While there has been an increase in funding for family support programs in the last ten years, these programs represent a small portion of spending for mental retardation services, and often target families of children.
Older family caregivers have concerns about planning for the future when they can no longer provide care to their relative. Future planning entails providing for future residential, legal, and financial arrangements in addition to health care, vocational/leisure activities, and community supports.
The Older Americans Act funds comprehensive support services for adults age 60 years and older that can benefit older adults with mental retardation and their older family caregivers. The services include senior centers, nutrition sites, home-delivered meals, homemaker services, transportation, and case coordination. Area Agencies on Aging are a staring point for getting information about local services. The Older Americans Act and other federal agencies fund employment opportunities and volunteer programs for older adults.
REFERENCES AND RESOURCES:
Clearinghouse on Aging and Developmental
Rehabilitation Research and Training Center on Aging with Mental Retardation
Institute on Disability and Human Development
University of Illinois at Chicago
1640 W. Roosevelt Road (M/C 626)
Chicago, Illinois 60608-6904
Voice: (800) 996-8845
Illinois Relay Access: (800) 526-0844
Developmental Disabilities and Alzheimer's Disease:
What You Should Know (1995)
500 East Border Street, Suite 300
Arlington, Texas 76010