Your Quality of Life

Well being for the long haul

Children of Alzheimer's Disease

Walking the walk for Alzheimer's.

It is Memory Walk season. The Memory Walk is the Alzheimer Association's major annual fundraiser. In 2010, over 33,000 teams participated in nearly 600 Walks across the country, raising more than $42.2 million to fund research, outreach, education, and care for Alzheimer's disease.

My research team and colleagues from the University of Massachusetts, Amherst participated in the annual walk. This year before the walk, we showcased our research on cognition in adult children of a parent with Alzheimer's disease. We studied a small sample of biological children of a parent with suspected Alzheimer's disease; participants averaged 55 years of age. We found that approximately 35 percent of the sample had a particular genetic risk for Alzheimer's disease, the apolipoprotein E (ApoE) gene on chromosome 19. A variant of this gene (APOE e4) is associated with increased risk for dementia, as well as a host of other neurologic problems, such as cerebrovascular disease. Presence of this gene does not mean that a person will develop Alzheimer's disease but it confers increased risk. For more on APOE e4 and risk for Alzheimer's disease, see Bob Greene's seminal work on this topic published in the New England Journal of Medicine.

Find a Therapist

Search for a mental health professional near you.

In our study, participants with the APOE e4 gene were slower to complete some tasks that were timed (i.e., they had slower processing speed) than persons without the APE e4 allele. Persons with the APOE e4 allele also had lesser white matter brain volume than the non-APOE e4 group. White matter is comprised of the long tails or axons of neurons that connect different parts of the brain. White matter facilitates fast and accurate transfer of information in the brain. Our study was novel because we found that white matter and processing speed were linked to genetic risk for Alzheimer's disease. Full access to the article is at sagepub.com.

Our sample was small and other investigators are doing similar work on a larger scale and producing more definitive and influential findings. Alzheimer's disease is a neurodegenerative process that begins years before any symptoms are evident. It is critical to determine the earliest signs of the disease and when they become evident. Research on adult children of a parent with Alzheimer's disease is an efficient way to gather these critical data.

The most remarkable aspect of our pilot project was not the results. Rather, it was the ease with which the study was executed. Children of a parent with Alzheimer's disease are eager to participate in research and we met recruitment goals for the study in a timely manner. Indeed, we had to turn interested persons away. Never in my 16 years of conducting research has this occurred. One of the most grueling tasks of studying human behavior and development is finding the people to participate in studies!

Adult children of a parent with Alzheimer's disease are motivated. They understand the devastating nature of the disease and know their chances of developing the disease are greater than average. They are afraid that one day, they will develop the disease or someone else they love will be affected. But they are not sitting back and waiting for a cure or an effective treatment. They are proactive. They participate in research. They often carry a tremendous burden in caring for their parents and loved ones. Many have full-time careers and can be raising families of their own.

And if that were not enough, on Memory Walk day, they were there.

This year, at a Memory Walk in Western Massachusetts, a memory garden was planted by people affected by Alzheimer's disease. Before the walk, a crowd gathered for the opening ceremony and everyone raised a different color hand-made flower to signify their link to the disease, whether it be as a person with Alzheimer's disease, a family member, or caregiver. The sea of colorful flowers raised in hope and solidarity was magnificent. Adult children of Alzheimer's disease are not motivated just out of fear or even primarily out of fear. Rather, they are hopeful, proactive, and stand together to fight the disease. They are an inspiration.

Rebecca Ready, Ph.D., is an associate professor in psychology at University of Massachusetts, Amherst.

more...

Subscribe to Your Quality of Life

Current Issue

Just Say It

When and how should we open up to loved ones?