Dementia Genetic Testing – Would you want to know?


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Today’s topic is about If there was a test out there where you could be tested for certain types of dementia, would you want to do it? Now, mind you, this would be a genetic test. So you wouldn’t necessarily have dementia yet because this gene wouldn’t have expressed itself yet. Maybe would you want to get this test? Would you want to know that you were at genetic or elevated risk for a certain type of dementia?

This was a question I was going to be faced with in the past couple of weeks when I got a message on Instagram from a company doing genetic testing. Now, specifically, they were doing genetic testing for frontotemporal dementias.

But it just got me thinking in general, is this something that we really want people to have access to?

The challenge in dementia, for the most part, is that it’s not preventable, fixable or curable. We can take certain lifestyle measures and steps to possibly stave off dementia or maybe prevent us from getting it entirely. Of course, being physically active, keeping your brain engaged, and eating well, are all the things you would normally do to prevent any disease. But if there was nothing you can do genetically speaking, which you kind of can’t, would you want to know that you were at elevated risk?

So I ended up talking a little bit to this company and I said, you know what? I don’t want to be involved in this because I don’t know that it’s really a great idea to let people know what they’re at elevated risk for, unless they really, really want to know. Like, if you want this information, I’m not here to tell you not to get it, but I think it just potentially opens many worms that maybe you don’t want to open.

So in the movie Still Alice, you may remember it from a number of years back, Julianne Moore was in it and so was Alec Baldwin. It was based on a book called Still Alice. The book was pretty good. I wasn’t a huge fan of the movie, to be honest with you. The timeline was a little wonky for me, but the book was really good. And it was this woman who has early onset Alzheimer’s disease, particularly dementia. And so she gets dementia pretty young. I think she’s probably in her fifties, her family, she has three kids, I think, and they all go and get this test to see if they’re at elevated risk. Well, one of them is. You could do that and you can get that test, especially for Alzheimer’s disease, early onset familial Alzheimer’s disease. The problem is, of course, that this woman, this young woman, may not actually end up getting Alzheimer’s disease. So the gene may not express itself and she may not end up with Alzheimer’s, but now you know, and people might say, well, she can plan for it, right? She can try to live healthily, but my response would be, wouldn’t she want to do that anyway? Right? I think it’s added stress. And then guess what? Stress can cause specific genes or start to promote certain genes to express themselves when maybe they wouldn’t have before. So it’s a really double-edged sword – a real catch-22. Do you want to know if you’re at elevated risk for a disease? And people grapple with this all the time? So just some food for thought. I don’t know what the answer is. I guess the answer is, it depends on what you want to do, what you and your family want to do, what information you have access to and what you want to have access to.

To me, sometimes it’s just a little bit too much information.

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2 thoughts on “Dementia Genetic Testing – Would you want to know?”

  1. I recently submitted a sample for gene testing that will be used to (potentially) match me to clinical trials.
    I won’t receive the results unless my results make me eligible for a trial.

    I definitely see your point – the added stress – but to me, knowing would make me more likely to ‘live more’ now, to plan my future in a specific way, and to make healthier choices. I think sometimes having a ‘solid’ reason makes us more likely to do those things we should.

    I also think if knowing my genes will allow me to participate in clinical trials, it will give me a sense of power over the disease and a sense of purpose.

    Definitely up to each individual. But I’m glad that the option is there now. I feel like research might be making some progress.

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Rachael Wonderlin is an internationally-recognized dementia care expert and consultant. She has a Master’s in Gerontology and is the author of three published books with Johns Hopkins University Press. Rachael owns Dementia By Day, a dementia care consulting and education company.

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