Seniors on the margins Aging with a developmental disability

Key issues

A number of factors contribute to the marginalization of seniors with developmental disabilities. The notion and the reality of "differences" in capacity have often caused them to live parallel lives socially and economically. This means that mainstream information on disease prevention may not be reaching them. This is compounded by the rarity of experts on aging with developmental disabilities and the difficulties of communication - possible factors in preventable or undiagnosed conditions, and lack of access to proper care and other services in the areas of physical or mental health. Social and financial supports are also critical to the continued well-being of seniors with disabilities.

Physical health

Specific sub-groups of persons with developmental disabilities have particular health risks or co-occurring conditions. For example, Down Syndrome is generally associated with the early onset of age-related visual and hearing disorders, epilepsy and dementia; Fragile X, with musculoskeletal disorders, visual impairments, early female menopause, and epilepsy; and Prader-Willi Syndrome, with obesity, a high risk of cardiovascular disorder and diabetes. Developmental disabilities associated with problems with the central nervous system are linked to higher rates of acute respiratory disease, epilepsy, autism, mental health problems and vision disorders.

Few health professionals have expertise in treating persons with developmental disabilities, and communication between the professionals and the patient can be difficult. For these reasons, many older persons with developmental disabilities develop chronic conditions or diseases that could have been prevented or treated earlier, if they had been detected. Although the prevalence of sensory, visual or auditory impairment among aging persons with developmental disabilities is similar to those in the general population, the degree of impairment may be more severe due to pre-existing problems. Also, compared to the general population, a greater number of people with disabilities have uncorrected or unidentified visual problems such as glaucoma, or inadequate prescription eyewear, in part because of their inability to communicate their needs clearly.

Older adults with a developmental disability may experience more severe loss of flexibility as age-related changes in joint function and bone density combine with their existing mobility problems. Also, they may be prone to developing arthritis at a younger age.

Health promotion and disease prevention can have a major impact on the functional ability, quality of life and longevity of seniors. However, people with developmental disabilities often lack basic education about the importance of healthy lifestyle choices and do not receive the same preventive health measures as other people (for example, pap smears and mammograms). Furthermore, transportation problems, cost barriers and a lack of suitable instructors make it more difficult for them to participate in health promoting physical and recreational activities.

Mental health

Behavioural and mental health problems are fairly common among persons with developmental disabilities. While it is estimated that 30% to 60% of persons with a moderate or severe developmental disability have a mental disorder, several factors interfere with accurate diagnosis and treatment.⁴ Signs of mental health problems tend to be attributed to the individual's developmental disability, clouding detection of problems that are treatable. Differentiation between dementia, depression and those behaviours directly linked with the developmental disability is especially challenging, as is the difficulty the senior may have in expressing psychological problems. As well, there are few specialists with expertise in both developmental disability and psychogeriatrics.

Problems in diagnosing dementia, particularly among individuals with Down Syndrome arise for several reasons:

• the person's level of intellectual and functional impairment prior to the onset make it difficult to detect the early signs of dementia;

• language and communication impairments make it difficult for persons with developmental disabilities to relay information to health care professionals;

• atypical symptoms often surface and are overlooked until the dementia is quite advanced;

• sometimes people with depression and hypothyroidism can be misdiagnosed as having Alzheimer Disease because the symptoms are similar.

Family and social support

Population aging and the de-institutionalization of persons with developmental disabilities have given rise to situations where parents in their eighties or nineties are still the primary caregivers of their developmentally disabled adult child in his/her fifties or sixties. Siblings as well (mostly sisters) often have an important role in providing emotional, functional and instrumental support. It is important to support families and to meet the eventual needs of aging caregiver parents. Also, families providing care to an adult with a developmental disability need better access to the information and services that can support them in this role.

When caregiving in the parental home is no longer possible, permanency planning or planning for supportive housing or eventual placement in a long-term care facility become necessary — for both the developmentally disabled adult child and the older parents.

Belonging in a community and being able to participate fully is key to maintaining quality of life.⁵ Older adults with developmental disabilities themselves identified the following factors as important for their social integration:

• settings which provide frequent and reliable opportunities for consistent social contact, e.g., work, day programs;
• structured recreation and leisure activities;
• friendships; and
• family.⁶

Day programs can provide ideal settings to promote and main-tain social integration. Persons with developmental disabilities often have had few opportunities to make decisions for themselves. Their lack of experience in this area can create unnecessary dependency among those who do have the capacity for self-determination. Some older adults with developmental disabilities require the help of a substitute decision maker who may be a family member or a guardian appointed by court order. The selection of a substitute decision maker requires careful consideration to ensure the best interests of the older person with a developmental disability.

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