Sep 15, 2001 Table of Contents

Please note: This information was current at the time of publication. But medical information is always changing, and some information given here may be out of date.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.

Information from Your Family Doctor

Health Issues for Adults with Down Syndrome

Am Fam Physician. 2001 Sep 15;64(6):1039-1040.

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?

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.

Some behavior changes Possible reason

Talks to self

Stress; some self-talk is normal

Withdrawn problem

Depression, stress, medical

Aggressive problem

Depression, stress, medical

Some behavior changes Possible reason

Talks to self

Stress; some self-talk is normal

Withdrawn problem

Depression, stress, medical

Aggressive problem

Depression, stress, medical

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.


This handout is provided to you by your family doctor and the American Academy of Family Physicians. Other health-related information is available from the AAFP online at http://familydoctor.org.

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

Copyright © 2001 by the American Academy of Family Physicians.
This content is owned by the AAFP. A person viewing it online may make one printout of the material and may use that printout only for his or her personal, non-commercial reference. This material may not otherwise be downloaded, copied, printed, stored, transmitted or reproduced in any medium, whether now known or later invented, except as authorized in writing by the AAFP. Contact afpserv@aafp.org for copyright questions and/or permission requests.

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