Category Archives: Interviews with experts

Guest interviews help readers figure out how to solve care dilemmas.

Dementia Prevention: GeneMatch Study

Alzheimer’s research is moving toward a bold new era of dementia prevention. Last Tuesday a national project called GeneMatch, was launched by the Banner Alzheimer’s Institute in Phoenix, AZ. GeneMatch is a large scale effort to identify people at high genetic risk for developing Alzheimer’s. About 1300 high risk candidates will be asked to test a new drug designed to prevent Alzheimer’s.
Dementia Prevention

The GeneMatch study will select participants through genetic testing. Researchers will test potential study candidates to determine if they have the APOE4 gene. This gene dramatically raises a person’s risk for developing Alzheimer’s. According to Beth McCarty Wood, senior genetics counselor for the project, only about 15% of the general population carries a copy of this gene. Just 2% of the population has two copies of E4 (one from each parent.) People who have inherited two E4 genes have a 30-55% risk of developing Alzheimer’s.

I’m writing about this to study to inform those who feel their situation, and their courage, is at the right level for getting involved. No one in my family has had genetic testing. I never wanted to find out if I’m carrying genetic markers for dementia. But I have friends who  have watched generations of their relatives fall victim to Alzheimer’s. For them, the circumstances are urgent. They want to know their chances of facing the same diagnosis.

The GeneMatch study is different from other studies because it will offer support to people who discover they have the APOE4 gene. Counseling will be provided by researchers from the University of Pennsylvania. Of course counseling may not resolve all concerns, such as fear of blow back from insurance companies. According to Ms. Wood, federal law protects study participants against discrimination by health insurers and employers — but not by long-term care and life insurance providers.

Anyone interested in participating in the study can get more details from the GeneMatch site. The project may be the first to actually prevent people from developing this awful disease.

Staving Off Dementia: A success story

When someone gets a diagnosis of Mild Cognitive Impairment (MCI), they can slide into despair, believing that dementia is their destiny. But we now know more about factors that promote brain disease — and practices that can protect us from it. This week I spoke to a valiant woman who’s decided to fight back.

Between the Pond and the Woods -- Fighting Dementia

I won’t state her full name, but Kay is the name I’m using for the amazing person I just interviewed. She carries a cane, but doesn’t use it much. The words that come out of her mouth are just twisted enough to make you guess something might be wrong. Her eyes sparkle despite the fact that she’s received two gamma knife treatments — at the maximum radiation level. Kay displays insight and passion that many healthy people lack.

Kay has a diagnosis of MCI and a condition called a degenerative cerebellum.  I’d never heard of this disease before. The National Institute of Neurological Disorders says symptoms may include “a wide-based, unsteady, lurching walk, often accompanied by a back and forth tremor in the trunk of the body” as well as “slowed and slurred speech”.

But I’m not writing to explain her neurological problems. I want you get inspired by her story. Instead of letting the symptoms take over, Kay has developed a lifestyle that she calls “very busy”. I met her during rehearsal for a choir performance. Kay joined the choir because her doctors suggested that musical activity might help address the disease symptoms. She also learned that socialization is an important disease fighting strategy. The choir helps her connect with others.

During choir practices, Kay has learned to read music. She believes that the musical training has helped her project her voice better and pronounce words more clearly. But she wasn’t willing to stop at just those benefits. Kay decided to learn to play music, too. At first, her third and fifth fingers ignored efforts to push them down. But now they both respond.

Kay says her doctors believe that the musical training is helping her to “postpone the inevitable.” Her symptoms have declined and she says that music has helped her “create new pathways” in her brain. In addition to her musical activities, Kay follows a rigorous diet. She eats few carbs, no sugar and no red meat. She’s in her sixties, but I would have guessed that she’s ten years younger.

Her example is a good antidote for people worried about inheriting the Alzheimer’s gene. It’s also instructive for anyone who has experienced brain trauma through injury or stroke. If we have one of these problems, we could fret about what will happen to us in the future. We could sit back and wait. But we also have the option of doing what Kay does: taking a proactive approach to our health.

I’m the first one to be lazy about diet. I crave chocolate and I love the second glass of wine. Cholesterol is a problem I don’t want to face. But I looked at this woman and was so impressed at how hard she works to live well. Kay believes she can “postpone the inevitable ’til the very end.” Would you fight that hard? Could you be that committed? What would it take to make you answer yes?