For the past 12 years, global health advocate Alanna Shaikh has watched her father, whom she calls her “hero and mentor,” deteriorate from Alzheimer’s disease. In a poignant talk given during TEDGlobal 2012 last week, Shaikh — a TED Fellow and the author of the TED Book What’s Killing Us — told us that the experience has, of course, been very hard. But Shaikh shared that it has been uncomfortable for a secondary reason — because it has forced her to think about her own chances of getting the disease.
According to a recent article in the journal Genetics in Medicine, the average lifetime risk of developing Alzheimer’s is 10 to 12 percent. However, the risk at least doubles when a person has a first-degree relative with the disorder. Which leads to an interesting question—if you learned that you are at high risk for a disease as debilitating as Alzheimer’s, what would you do with that information? Yes, TEDsters, it is quiz time.
Many people facing a genetic pre-disposition to a serious disease go with option A, telling themselves “It’s never going to happen to me.” Others go for option B, dramatically altering their lives to try to prevent the onset of the disease. One extreme example: Google co-founder Sergey Brin, who has donated $ 50 million toward Parkinson’s disease research since finding out that he has a genetic mutation associated with higher rates of the disease. According to Wired, Brin has gone as far as to become a champion springboard diver, since exercise has been correlated with lower risk for the disease.
For Shaikh, however, the clear choice was Option C. And since we so greatly admire her approach, below are five things those who believe they are at high risk for Alzheimer’s can do from here.
- Eat well and exercise daily.
Eating a nutrient-rich diet and exercising regularly can’t stop Alzheimer’s, but research suggests that it might delay onset and slightly lower risk. Hey, it certainly can’t hurt.
- Find a genetic counselor.
Genetic counselors are experts in genetic diseases who can be extremely helpful in explaining how different disorders travel in families. They can help assess personal risk, and act as sounding boards when it comes to options like genetic testing. Jill S. Goldman, a genetic counselor at the Taub Institute for Research on Alzheimer’s Disease at Columbia University, says that going to a counselor doesn’t always mean bad news—in fact, she says that people caring for a parent with late-onset Alzheimer’s might actually overestimate their risk. To find a genetic counselor in your area, head to the National Society of Genetic Counselors’ website, which allows a variety of searches.
- Take up some new hobbies.
As Shaikh learned from subscribing to Alzheimer caregiver listservs, hands-on activities are more enjoyable for those with dementia than reading or conversing with people who they might not recognize. She says in her talk, “The more things my hands know how to do, the more things I can be happy and busy doing when my brain’s not running the show anymore.” So Shaikh has taken up drawing, knitting and folding origami. She is also focusing on hobbies that could help her stave off the physical effects of Alzheimer’s—tremors, muscle loss and a diminished sense of balance. She’s doing weight lifting to build muscle, and yoga to improve her balance.
- Work on being a better person.
Shaikh puts it best as she comes to the emotional conclusion of her talk. “My father was kind and loving before he had Alzheimer’s, and he’s kind and loving now,” she says. “When you take away everything he ever learned in this world, his naked heart still shines. What I need now is to learn to be like that. I need a heart so pure that if it’s ever stripped bare with dementia, it will survive.”
- And hope this study is successful.
In May, the New York Times reported on an “unprecedented” clinical trial, which is giving a group of research subjects genetically guaranteed to develop Alzheimer’s later in life a drug intended to stop the onset of the disease. The study — which is being funded by the National Institutes of Health, the Banner Alzheimer’s Institute and pharmaceutical manufacturer Genentech — is testing Crenezumab, a drug which attacks plaques in the brain. If the study is successful, it could have major implications on both the prevention of Alzheimer’s disease and its treatment.