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.

Giving Thanks Despite Dementia

Mom joined us today in giving thanks despite her ongoing battle with dementia. She has struggled with her disease for eight years but I learn a lot from her every day. Thanksgiving 2015 finds me grateful that she is with us and still capable of setting a good example. Here are a few things she’s taught me.

Giving Thanks Despite Dementia

  • Don’t hold on to bitter memories — My mom has lost almost all short term memory as well as the majority of her long term recollections. You might be tempted to interpret this loss as a full-fledged tragedy. But the erasure has left her free of many bad memories. She has forgotten how to carry grudges and can’t summon up any reason to hate people. In her current state, she is a truly liberated person living with an open, loving heart.
  • Be truly grateful for the simple pleasures in your life — My mother can’t feed herself and it takes her a very long time to finish a meal. Nevertheless, she relishes each spoonful of soup and every last crumb of a chocolate chip cookie. You don’t have to eat 10,000 calories or spend a fortune to make your holiday meal special. Slow down. Appreciate what you have and savor what you love.
  • If you have only one phrase to say, make it “Thank you” — Mom can barely speak. Half of what she says sounds like a language from another galaxy. Yet somehow, every once in a while, she still manages to say thank you. When those two little words come out whole, I feel like I just won the lottery. Her example makes me want to try harder to be gracious. If she can do it, anyone can do it.
  • Laughter lightens every burden — Each morning, the first sound we hear from my mother is laughter. Sometimes it sounds crazy, demented. Then other times it’s an expression of engagement with whatever is around her. When she laughs, we laugh, too. It’s incredibly therapeutic. A good laugh does a lot to clear away pain.

It’s hard to be a caregiver.  I get tired just thinking about all the stuff I need to accomplish each day. But when I examine my deeper feelings about the situation, I see that it’s also a privilege to make this journey. Maybe there are other ways to learn these lessons, but for now I am giving thanks despite the daily ordeals that come with dementia.