Down Syndrome
Perspectives on Parenting©
by Nancy Lambert Davenport

Nancy Davenport's Column:
For Richardson News 01-10-99
Copyright Nancy Lambert Davenport 1999

"Alzheimer's and Down Syndrome"

Many of us as parents of children with Down syndrome have experienced a lifetime of scares and traumas before our children are even two. Almost half of our kids have heart problems of one kind or another - most, life threatening. Others have thyroid imbalances, intestinal difficulties, respiratory problems, degrees of deafness, vision discrepancies, and more. If all goes well, and once we get all these problems in control, we find that life no longer offers many surprises that are insurmountable. Because of our experiences, we don't sweat the little things quite so quickly.

There is one subject though that makes everyone sit up straight and take notice. That is Alzheimer's disease. It seems that Down syndrome and Alzheimer's are hand in glove. Doesn't seem fair, does it? For those who speak the lingo there is "a point mutation in the gene that codes for membrane protein beta A2 amyloid protein precursor (APP) to chromosome 21 [which] may potentially place some individuals with Down syndrome at an increased risk for development of Alzheimer's disease." (See end for source.)

For those out of the Down syndrome loop, the 21st chromosome is the one that causes all the problems. Now it is discovered that there is gene on that chromosome that puts our kids at risk for Alzheimer's too. The battle never ends. According to some statistics about 10% of the people with Down syndrome will show Alzheimer's symptoms before they are 30 years old, about 25% before they are 50, and about 75% before they are 70 years old. Women generally, get it earlier and more severely, but less prevalently. Men get it later in life and less severely, but more men have it.

This is all pretty grim but as with everything that has to do with our children, we will simple take a deep breath, roll up our sleeves, and see what we can do to make the best of things.

Diagnosis is difficult for several reasons. Unfortunately symptoms of Alzheimer's have also been reported in 60 other disorders. In addition, some people's low expectations of older adults with Down syndrome leads to neglect in some situations. To avoid a missed diagnosis, the best defense is to maintain good records and have periodic evaluations to detect change in behavior, change physically, or change in abilities. For parents of young children who visit the doctor several times a year, this seems like a given. Older adults with Down syndrome, as with any older adults, tend to visit the doctor less. Unless an effort is made, a pattern of decline or change may not be readily detected.

We need to keep in mind that more and more is being learned about the Alzheimer's disease. It is no longer viewed as untreatable. New MRI (magnetic resonance imaging) technology and techniques are playing an increased roll in diagnosis and management. Proper behavior management, music therapy, counseling, and especially medication, both psychotropic and neuropharmacological, have all been helpful to lessen the symptoms. Since an excess of the element, aluminum, is often found in the brain of people with Alzheimer's, it is logical to limit intake of that substance. To do this, cook with glass or stainless steel instead. Buy drinks in glass or plastic bottles instead of aluminum cans although many products now have coating on the interior of the cans. Use deodorants only, not antiperspirants which have aluminum chlorohydrate. In addition, the list of places doing research is a long one, so we don't need to panic. Just be aware, be alert, and be pro-active.

Raising our kids and doing the best for them is a lifelong project. Unlike other types of problems, we have the advantage of knowing the possibility of this one ahead of time. That doesn't happen very often, so we need to make the best of it.

Thank you to the Down Syndrome Quarterly, September issue, "Alzheimer's Disease and Down Syndrome" by Don C. Van Dyke, Dennis Harper, and Mark Eric Dyken.

Return to Top of Page
Return to Table of Contents
Return to Home Page

Nancy Lambert Davenport
EMAIL: nancdave@swbell.net
URL: http://www.nancyldavenport.com