Identifying early markers of Alzheimer’s disease has long been a goal of research. Some new developments suggest that it may be possible soon to identify whether someone who is not currently symptomatic is beginning to accumulate clumps of amyloid in the brain. Would you want to know?
Paula Span, one of the best writers about aging issues, has an excellent column this week about this issue. PET scans can identify with some accuracy accumulations of amyloid in the brain. These scans are expensive, $5000 to $7000 each according to Span, and are not covered by insurance, including Medicare. The Alzheimer’s Association has long advocated that Medicare cover PET scans, but Medicare will not pay for tests that do not lead to therapeutic interventions. Besides PET scans, a recent article reported that a blood test that examined the ratio of two types of amyloid could fairly accurately predict amyloid in the brain. It has been possible for a while to test for the genetic marker for at least some cases of late onset Alzheimer’s, the APO E4 allele.
But would you want to know? And what difference would it make for you?
Of course, if there were a treatment that would slow or entirely prevent Alzheimer’s, it would make sense to know. But there is no treatment.
Would you change your lifestyle, exercising more and eating a healthier diet? This is something we should all do anyway, because it will help us maintain health and better functioning longer. Would knowing you were going to get Alzheimer’s disease make a difference? A recent study suggests that lifestyle offers some protection for people with genetic risk (Lourida et al., 2019). The difference is small, but encouraging. But maybe some people would go the other direction—if you are going to get Alzheimer’s, you might as well enjoy life to the max now. To hell with diet and exercise.
Span discusses whether knowing one’s risk might lead to developing an advanced care plan, including advance directives and someone you trust to manage your estate if you are no longer capable. Again, this is something we all should do anyway.
Would knowing your risk lead you to make different life decisions? Would you stop putting off traveling to places you have always wanted to visit or doing things you have always wanted to do? Again, it would be a good thing to start doing those things anyway. Judy and I have gotten good at seizing opportunities. We both feel good now, but we don’t know how long that will be the case. We have also gotten past the bucket list approach. We don’t want to go to every exotic place, but instead, we travel to places that call to us in one way or another. Frankly, the call often is from the food, or to visit with friends. Would you rather worry about amyloid or search Paris for the best croissant?
There is one other issue about wanting to know. Not everyone with accumulations of amyloid develops dementia, and some types of dementia may not involve amyloid at all. So these tests may indicate increased risk, but not everyone will get the disease.
We think it’s important to have a plan. Rather than worrying about what might happen—something bad will eventually happen—we try to use the opportunity we have to do things that we value and enjoy.
For Paul Span’s article…
Lourida, I. et al. (2019). Association of lifestyle and genetic risk with incidence of dementia. JAMA. doi: 10.1001/jama.2019.9879.
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