Please note: This information was as current as we could make it on the date given above. But medical information is always changing, and some information given here may be out of date. For regularly updated information on a variety of health topics, please visit familydoctor.org, the AAFP patient education Web site.

An article on this topic is available in this issue of AFP.

Health Issues for Adults with Down Syndrome

Are regular check-ups a good idea?

Many adults with Down syndrome are healthy, but they still need regular health care. People with Down syndrome should see their family doctor for regular check-ups. Perhaps you have an adult child with Down syndrome, or a brother or sister with this condition. Your relative needs the same care as all adults. You should also help your relative with special medical problems that are more common in people with Down syndrome. For example, your relative should be checked for thyroid disease, arthritis, and vision, hearing and cervical spine problems.

How can I help my relative with Down syndrome have a full life?

Some behavior changes	Possible reasons
Talks to self	Stress; some self-talk is normal
Withdrawn	Depression, stress, medical problem
Aggressive	Depression, stress, medical problem

If you plan carefully, your relative can lead a more independent life. Common areas to plan for include the following:

• Housing options such as group homes, supervised independent living or family-owned independent housing. It's good to make plans for your relative to live independent of you.
• Work options such as sheltered workshops, supported employment and regular employment, with or without a job coach. Employment and social activities add increased meaning to life and may encourage responsible independence in your relative.
• Recreation options such as adult day care, the Special Olympics and other activities that involve exercise and hobbies or interests.
• Special estate planning, education beyond high school and self-help training.

My older relative is having some new problems. Could it be Alzheimer's disease?

Many parents or guardians are concerned about Alzheimer's disease (a kind of dementia). It occurs at an earlier age in persons with Down syndrome, but usually not before the age of 40. However, mental health and medical problems can sometimes look like Alzheimer's disease. You won't want to just assume that the change in your relative is caused by dementia. There may be another reason for the change in behavior.

Useful Resources for Parents and Guardians of Adults with Down Syndrome

Down Syndrome Clinic of Wisconsin Web address: http://www.family.mcw.edu/dscw Access to health maintenance flowcharts Down Syndrome Health Issues, by Len Leshin, M.D., F.A.A.P. Web address: http://www.ds-health.com A doctor whose son has Down syndrome offers information on the condition, including alternative therapies. Denison Down Syndrome Quarterly Web address: http://www.denison.edu/dsq Complete health care guidelines information National Down Syndrome Congress Telephone: 1-800-232-6372 Web address: http://www.ndsccenter.org/ General information and parent groups

National Down Syndrome Society Telephone: 1-800-221-4602 Web address: http://www.ndss.org General information and parent groups Local Parent Information Group or Association for Retarded Citizens (ARC) Check your local Yellow Pages. One of the national organizations or your local health department (see the Yellow Pages) may also be able to help you with information about local resources.

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This handout provides a general overview on this topic and may not apply to everyone. To find out if this handout applies to you and to get more information on this subject, talk to your family doctor.

Visit familydoctor.org for information on this and many other health-related topics.

Copyright © 2001 by the American Academy of Family Physicians.
Permission is granted to print and photocopy this material for nonprofit educational uses. Written permission is required for all other uses, including electronic uses.

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