A New Approach to the Care of Developmentally Challenged Older Adults
People with developmental disabilities are living longer than ever before, and physicians caring for the mature and aged person need to be aware of their special needs. A developmentally disabled person is one who has a diagnosis of mental retardation, epilepsy, cerebral palsy, autism, or similar neurological condition that originated before adulthood. Perhaps the biggest advance in lifespan for individuals with a developmental disability are those people with Down syndrome. In a study published in 2002 of 1332 people with Down syndrome born after 1902, the average life expectancy was 58.6 years, with 25% living to age 63. The oldest study participant was 73 years old.1 This is in sharp contrast to data from the 1960s, when few could expect to live beyond young adulthood.
While the genetic abnormality causing Down syndrome has not changed, our ability to meet the special needs of these individuals has. Better use of community resources, immunizations, nutritional support, and preventive medicine, coupled with more aggressive treatment of associated cardiac problems with microsurgery, has improved life expectancy. Despite this, people with Down syndrome frequently develop obesity, hypothyroidism, epilepsy, and Alzheimer’s disease during the later years of their lives, and may become increasingly dependent on a support system beyond their family.
A number of years ago, I had the privilege of working on a special program for one component of the developmentally disabled elderly, those who had various causes of mental retardation, and who were for the most part living for years in group homes or with family members. We used principles of Geriatric Medicine to start an Assessment Program for these individuals who were all too frequently earmarked for early placement in a nursing home. Most were not affected with Down syndrome, and their mean age was over 80 years. We were one of two such programs at that time in the United States. It became obvious that there needed to be a lot of education on both sides: the geriatricians needed to quickly learn about problems they rarely had encountered or focused on during their training, and the team of developmental disability experts needed to learn about the problems of the elderly. Unfortunately for many, frequently encountered problems during later life made it impossible to stay within their current living arrangements; the group homes that many were living in were simply unable to provide the care necessary for this older population, due to staffing issues, knowledge, and funding. The developmentally disabled elderly living in these group homes were required at that time to go during the day to workshops, and there was insufficient funding to provide staff to stay with the older person who just wanted to “retire” from his or her daily work routine or were not well enough to attend. We saw many referred for nursing home placement prematurely because of this dilemma. While we attempted to offer strategies to help care for someone with a new age-prevalent problem, such as urinary incontinence or falling, we knew that the outcome would not always be what we had hoped for.
My colleagues and I were grateful for this opportunity to pioneer a new approach to the care of a growing population of developmentally disabled elderly persons. There was so much to learn and to teach, and we used this Assessment Program to train medical residents and geriatric fellows. Some of the lessons included that IQ is less important in predicting one’s ability to perform activities of daily living than one’s Vineland Adaptive Behavior Scale score. There were lessons in the value of patience and the remarkable ability to learn through repetition. We all learned the dangers of stereotyping someone because of a “label.” Unfortunately, as with many Geriatric Assessment Programs, funding was increasingly difficult to identify, and the number of experts who originally were part of our team dwindled as our ability to fund their time diminished. We were forced to discontinue this program after a few years, but hoped that the lessons learned in this effort would continue to help many others in need.
This issue of Clinical Geriatrics features an article titled “Identifying Functional Deficits in Persons Living with Developmental Disability: Examples with Cerebral Palsy or Spina Bifida” on page 30. I hope that you will read this article with interest and ponder those older persons living with “double jeopardy”—at risk of functional decline not only because of their underlying developmental disability, but also now because of age-prevalent diseases and problems. Clearly, we must consider the interaction of both problems and how they will affect one’s independence and function. We owe everyone as high a quality of life as possible, and the sooner we recognize that we have a growing population of individuals with special problems and needs, the better we can prepare to meet the challenges ahead. I welcome your comments.
1. Glasson EJ, Sullivan SG, Hussain R, et al. The changing survival profile of people with Down’s syndrome: Implications for genetic counseling. Clin Genet 2002;62:390-393.