Feb. 25, 2016 -- If a test could tell whether you’ll get Alzheimer's disease someday, would you want to know? And if so, what would you do with that knowledge?
These questions are becoming more and more important as researchers close in on tools to predict your risk of Alzheimer’s disease decades before symptoms start to appear.
“Primary care physicians, in the disease’s early stages, [eventually] could be able to say, ‘It looks like there’s a problem here’ through a blood test, a saliva test, or by looking at the retina,” says Dean Hartley, PhD, director of science initiatives for the Alzheimer’s Association. “But there’s no medical test now. It’s all in the research stage.”
For now, only genetic tests are available to the general public. They can spot genes linked to a higher risk of Alzheimer’s, such as the ApoE4 gene. But genetic tests aren't conclusive. Not everyone whose test result says they have ApoE4 will get Alzheimer's, and many people who don’t have that gene will get the disease.
And if you have the gene, there isn’t much you can do yet, aside from making lifestyle changes that may be preventive. “You can get the ApoE4 test at your doctor’s office, but I and many of my colleagues rarely offer it, because we don’t have any treatments to offer if we determine that patients are at higher risk,” says Alzheimer’s researcher Liana Apostolova, MD, a professor at the Indiana University School of Medicine.
Also, knowing your risk could come with a price. Seven years ago, Jamie Tyrone learned unexpectedly that she had two copies of the ApoE4 gene.
“I went into a deep, dark hole,” says Tyrone, 55, a former nurse who lives in San Diego. “This information was very anxiety-provoking, to the point that I was diagnosed with PTSD [post-traumatic stress disorder]. Knowing has done me harm.”
Tyrone says Alzheimer’s was not on her radar when she was tested for a variety of genetic disorders as part of a research study. Being unprepared for the news, she says, made her anxiety worse.