Intellectual Disabilities

Life Expectancy of People with Intellectual Disabilities

Tammy Reynolds, B.A., C.E. Zupanick, Psy.D. & Mark Dombeck, Ph.D.

Taken together as a single population, people with intellectual disabilities (intellectual developmental disorder, formerly mental retardation) have an overall shorter life expectancy than do their non-disabled counterparts; but, there is considerable variation depending upon the underlying cause of the disability. Nevertheless, the life expectancy among persons with intellectual disabilities has dramatically improved over the past few decades. Twenty years ago, people with Down syndrome were expected to live to about the age of thirty-five. Today, these same individuals would be expected to reach fifty-five years of age before expiring. Overall, the life expectancy for individuals with intellectual disabilities averages in the sixties, while the life expectancy for individuals without intellectual disabilities averages in the seventies.

As mentioned, some people with intellectual disabilities are at greater risk than others, depending upon the particular cause of their disability. For instance, individuals with Tay-Sachs do not typically survive childhood. Individuals with Cockayne syndrome Type I are expected to die in their teens, while individuals with Cockayne type II usually die before the age of seven. Cardiovascular disease and diabetes are common complications in Williams syndrome. Individuals with Down syndrome are prone to Alzheimer's disease, with affected individuals tending to die within eight years of diagnosis.

Roughly 75 percent of persons with intellectual disabilities reside with family members who are themselves aging. As caregivers become increasingly incapacitated and unable to care for themselves, they simultaneously become less able to care for their disabled family members. Medical crises affecting the caregivers' lives create a sort of double jeopardy as their disabled family members will then become displaced and require alternative care arrangements.

Service coordination specialists (also known as case managers) from various social service agencies can sometimes assist in these "dual crises" by arranging and coordinating shared care arrangements for all parties in need. For example, some nursing homes will accommodate a shared living arrangement for parents and their dependent adult children with intellectual disabilities, and some facilities will even welcome their pets.

Because the probability of caregivers becoming incapacitated is rather high after a certain point in their lives, it is advisable for these aging caregivers to carefully plan for this inevitability. It is often advisable to consult with an attorney to ensure these plans are thorough and can be implemented without legal difficulties. Despite the best planning, a change in living arrangements is stressful for anyone, and people with disabilities often find these changes even more stressful. Therefore, many professionals suggest that aging caregivers consider making a gradual transition before they are suddenly incapacitated. For instance, some supported housing arrangements permit part-time residency in order to facilitate a period of adjustment for new residents. Each community has different resources and housing options so it is wise to research the different choices in advance, so that the person with an intellectual disability can be guided to make a selection that matches their specific needs and abilities.

 





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