Please note: This information was current at the time of publication but now may be out of date. This handout provides a general overview and may not apply to everyone. For regularly updated information on a variety of health topics, please visit familydoctor.org, the AAFP patient education website.

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Am Fam Physician. 2001;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 changesPossible reason
Talks to selfStress; some self-talk is normal
Withdrawn problemDepression, stress, medical
Aggressive problemDepression, 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.

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Copyright © 2001 by the American Academy of Family Physicians.

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