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Adults with Down Syndrome |
Specialty Clinic Perspectives
By Brian Chicoine, MD, Dennis McGuire, PhD
and Stephen Rubin, PhD
Originally published in Dementia, Aging and Intellectual Disabilities: A Handbook
ed. by Janicki and Dalton (Taylor and Francis, 1999)
In response to a request by the local parent group,
a clinic was developed to provide for the medical and psychosocial needs
of adults with Down syndrome. One of the concerns of the parents was that
their sons and daughters were not receiving an adequate evaluation when they
had a decline in function and were being given a diagnosis of Alzheimer's
disease based on a presumption that all persons with Down syndrome develop
Alzheimer's disease. The thorough evaluation that each patient receives is
described. The majority of the adults seen show no decline in function. Of
those that showed a decline in function, a small percentage were diagnosed
with Alzheimer's disease, but most of those with a decline had a potentially
reversible problem and, with treatment, most returned to their premorbid
level of function.
The occurrence of Alzheimer's disease among persons with Down syndrome has
caused a great deal of concern for families and care providers of adults
with Down syndrome. As discussed by...others, research has found that all
adults with Down syndrome over the age of 40 develop plaques and tangles
in their brains similar to those seen in persons with Alzheimer's disease.
Based on this information, many parents and professionals often conclude
that all persons with Down syndrome will eventually develop Alzheimer's disease.
However, this conclusion is primarily based on autopsy data without a similar
evaluation of premorbid clinical information. Many parent organizations are
concerned that such conclusions may have deleterious effects if it is believed
that all adults with Down syndrome eventually will be affected by Alzheimer's
disease.
This was the case in the metropolitan Chicago, Illinois, area. Parents were
concerned that, based on such conclusions, adults with Down syndrome were
being given the diagnosis of Alzheimer's disease whenever they had a decline
in function and that these diagnoses were being made often without any substantive
clinical evaluation. Their concern was strong enough to seek assistance in
developing a center with sufficient expertise to offer periodic health and
neurological reviews and to be able to conduct differential diagnoses when
presented with the symptoms of dementia. Thus, at the request of the National
Association for Down Syndrome (a parent group serving the Chicago metropolitan
area), the Adult Down Syndrome Center of Lutheran General Hospital was developed.
This article discusses the concerns of the parents, describes the development
of a multidisciplinary clinic to address their concerns, and offer information
on how clinic staff evaluates persons with Down syndrome who are declining
in function and potentially developing Alzheimer's disease. Recommendations
for the prescriptive care of persons who have been diagnosed with Alzheimer's
disease are also discussed.
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