Thinking Ahead about People with Down Syndrome and Alzheimer's

Health Professional

There is a very high incidence of Alzheimer's disease in people with Down syndrome so it is very important that parents and families think about future health and financial planning.

The incidence of Alzheimer's disease increases with age but for people with Down syndrome there is an increased risk: 10-25% in ages 40-49, 28-55% in ages 50-59, 30-75% in ages 60-69.33 years. Symptoms are the same but may, at first, be misinterpreted because of the deterioration in their behavior and loss of function. Behavior problems are often negatively attributed to a lack of self disipline.

Alzheimer's is a diagnosis of exclusion but in the case of Down syndrome it may be over-diagnosed because of its very high incidence, especially in old age.

Inclusion in Decision Making

Intellect and skills functioning varies considerably in people with Down syndrome but for all people it is important that they feel included in decision making and that their wishes are listened to and actioned as far as is practical. Inclusion requires caregivers to:

  • Listen carefully to their wishes.
  • Match plans for future living arrangement to their present levels of independence that factor in future skill loss.
  • Local support groups can offer advice to caregivers and people with Down syndrome for advice, information on local facilities and medical advice.
  • Local advocates that can represent their wishes and best care needs can be set up early. You should think of including legal representatives, friends, independent charity advocates.
  • More information is available through the National Association for Down Syndrome and the Alzheimer's Association for local and national information.

Plan Early

Early planning is very important. Many people with Down syndrome have older parents who must be taken into consideration.

Legal issues need to be addressed

Adults with Down syndrome are considered competent to make medical decisions unless declared otherwise.

Is there a need for guardianship? If not is an advanced directive appropriate? Power of attorney will be needed for health care and financial planning.

For more information read Dorian's Sharepost Take care of legal issues now and eliminate stress down the road and 10 Ways Alzheimer's affects legal issues.

Living Arrangements

Independent living arrangements may need to be changed as the symptoms of Alzheimer's and skill loss increase. As with anyone this can be regularly assessed and increased community health care brought in whenever possible. Group homes can be difficult to find especially as behavior deteriorates. Planning can help smooth successful transition, such as those from home to apartment to care home. Anticipatory planning can also lessen the impact of the loss and make the transition much less stressful.

Medical Care of Down Syndrome and Alzheimer's

Doctors specialising in Alzheimer's disease will make sure that people with Down syndrome takes into account this group of client's special medical diagnostic and treatment needs, i.e differentiating depression from dementia. Overall care and treatment of patients with Down syndrome and Alzheimer's disease are similar to that of patients in the general population.


American Family Physicians

September 15, 2001 Table of Contents

Health Care Management of Adults with Down Syndrome

DAVID S. SMITH, M.D., Medical College of Wisconsin, Milwaukee, Wisconsin.

Am Fam Physician. 2001 Sep 15;64(6):1031-1039.