Since there are few preventive treatments, some argue it’s best not to know your risk for Alzheimer's disease. Here, one woman explains why she took the test
Scientists are very close to creating a blood test that will be able to detect Alzheimer’s disease a decade before diagnosis, according to a report in The FASEB Journal. But with few preventive treatments available, would you want to know? Here’s why one woman said yes.
My mother died of Alzheimer’s disease in 2011, when she was just a couple weeks shy of 87. She had once told me she had an aunt who also died of Alzheimer’s, and while I can’t say for sure if that’s true (I never met this aunt, and back then, a clear diagnosis was harder to get than it is today), knowing I had this family history motivated me to get more information. (Is Alzheimer's a Normal Part of Aging?)
I used 23andme [an at-home salivary genetic screening service that has since been banned by the FDA pending further testing], which assesses, among other things, Alzheimer's risk. When I went to check my results online, the site asked, "Are you sure you want to go to this page?" When I clicked yes it said, like, "Are you absolutely positive?" So there were several different chances to decide, "Maybe I don’t want to know this." I just kept clicking yes; I was nervous, but I knew I wanted to know my risk.
23andme told me that I have a 15 percent probability of getting Alzheimer’s compared to the average person’s risk, which is 7 percent. So my understanding is that my risk is roughly twice as high. I tried to take this just as information—nothing more.
I went into it knowing there would be a pretty good probability that my risk factors would be higher than average, so I was somewhat prepared mentally. I was not surprised, and I didn't fall apart. Honestly, I was mostly relieved that it didn’t say my risk was 70 percent.
After finding out my risk from 23andme, I talked to my internist about my results. He gave me a really significant piece of information: Just because you have a genetic risk, it’s not a given that you’ll get the disease. It’s not like [the neurodegenerative genetic disease] Huntington’s, where if you have the gene and you live to be 40, you’re 99 percent sure to get it. With Alzheimer's, we just don’t know. (Make sure to read how a Groundbreaking New Study Sheds Light on the Mysterious Brain.)
I haven’t done anything about my results, in terms of lifestyle changes. To be honest, I’m not aware that there’s a lot we can do yet. My mother walked a lot, was very active, was socially engaged—all these things experts say are so good for your brain—and she got Alzheimer’s anyway.
My mom became less functional somewhere around age 83. But that means she had more than 80 really wonderful years. Had she been overweight, less socially engaged, or eaten a poorer diet, maybe that gene would have kicked in at age 70, who knows? So at this stage, the general recommendation is to do the best you can to stave off the possibility of developing the disease. The exceptions, of course, are those at risk for early-onset Alzheimer's disease. [This variation, which strikes people younger than age 65, has a definitive genetic link.]
I understand the people who say that they’d rather not know. But I had two things in mind: I wanted to know what else might be present in my parents’ ancestry in addition to Alzheimer’s, as I don’t have much information about my grandparents’ medical history. And 5 or 10 years from now, if we know more about what gene to look for or what markers to look for, I have a comparison. I have a baseline. (Find out the best Foods to Prevent Alzheimer's.)
I know that these results are just a factor of my risk profile. I don’t stress about my results, because I know that genetic testing is just one piece of a bigger picture. I do my part—staying active, engaging socially, eating decently—and the rest is out of my hands.
But I’m still glad it didn’t say 70 percent.
After her mother passed away, Elaine wrote a book about her mother's experience with the disease and her own experience as caretaker. Help Elaine help others by buying it; a portion of proceeds go to Alzheimer’s research.