Aging with developmental disabilities includes some important differences from the general population. Becoming aware of these is one of the steps to effective transition planning to older adulthood.
Onset of Aging
While people with a developmental disability can now enjoy a lifespan similar to the general population, there is research evidence that some will experience differences in the onset and progress of aging due to genetic, environmental and lifestyle factors. For example, people with Down Syndrome are predisposed to an earlier and more severe onset of aging-related conditions and functioning. Consequently, some people with a developmental disability may require changes in support at an earlier age than others.
Persons with a developmental disability may not always have insight into the effect that aging is having on them. They may be unable to articulate what they are experiencing in ways that other people can understand. There is the potential for signs of aging to go unnoticed until they become more pronounced. Caregivers should consider how to inform and educate people with developmental disabilities about aging and planning the transition to older adulthood.
The genetic aspects of specific developmental disabilities may impact the aging process. It is important that the genetic predispositions for each individual be known and acted on. Here are only two examples to illustrate the potential impact on aging:
People with Down Syndrome tend to experience: respiratory difficulties, which can limit their capacity for physical activity; onset of hearing loss as early as their 20’s, which if undetected can lead to behavioural symptoms that may be misinterpreted as a psychiatric disorder; a genetic predisposition to develop Alzheimer Disease with symptoms often showing up in the person’s mid 40’s and sometimes sooner.
People with Prader-Willi syndrome are at higher risk of diabetes mellitus. Diabetes results in the debilitation of internal organs and can result in severe compromises to health and even death.
Cautions for Caregivers
Effective transition planning includes consideration of indicators of aging such as changes in social roles, activity level, interests, behaviour patterns, response to things in the environment and health conditions. More information about specific developmental disabilities and their potential effects on aging can be obtained from your physician, local library and Internet sites.
The principle of inclusion has played an important role in moving people with developmental disabilities closer to full citizenship in society. The Ontario Partnership believes that this principle holds true as people age and each older adult with a developmental disability should have the same right to access services and programs as all Ontario seniors. The partnership between the long term care and developmental service systems is a means to build bridges of cross sector cooperation so older adults with a developmental disability can, as part of an ongoing transition planning process, continue to remain at home with appropriate support and if required, move to a supportive seniors apartment or long term care home.
Quality of Life
The Ontario Partnership believes that Quality of Life is an important guiding concept for effective transition planning to older adulthood. Quality of Life keeps the focus on the best possible outcomes for the individual and helps to keeps decision-making free of ideological perceptions or care-giving biases that have nothing to do with what the person needs and wants. The Quality of Life approach helps caregivers to become aware of the entire person and all possibilities for their future well-being.
The key to effective support as people age is a deliberate and explicit transition plan that considers the whole person and the entire support environment they will require as they age. For more information on transition planning you can view the OPADD Transition Guide on this web site.