Careblazer, you totally surprised me.
A while back, I posted a video about a blood test that was coming soon to check whether you’re at risk for Alzheimer’s disease. It looks for amyloid plaque and tau proteins, two of the hallmark changes we look for when Alzheimer’s might be present. I asked you: if this blood test became widely available to anyone who wanted it, would you get it?
About 95% of you said yes. If I had made a bet on how you’d answer, I would absolutely have lost.
That blood test is here now. For where things stand today, read the blood test that detects Alzheimer’s years before symptoms.
So should you get the Alzheimer’s blood test? This is not a post on whether you should or whether you shouldn’t. Do what you want, with the guidance of your healthcare providers. But I thought it might help to go through six things to consider first. The very last one is one of the most important, because it’s about how knowing could change your day-to-day life.
One note before we start: this test measures amyloid and tau proteins in the blood, not your genes (Alzheimer’s Association). So when I talk about an increased risk below, I mean what that blood test would show.
1. You Don’t Need a Test to Start Lowering Your Dementia Risk
A lot of you said yes because you’d want to start making the changes needed to help.
That’s so interesting to me. Because we know the changes that help. If we have dementia and want a better quality of life, or if we’re at risk and don’t want to develop it, we know what to do. I’ve written about five factors that reduce your dementia risk, and they help even if amyloid plaques and tau are present in your brain.
So if we already know what to do, we don’t have to wait to be told we have these things. We can start doing the healthy things now.
Here’s the question to ask yourself: whatever you think you’d do for your health if you found out you were at risk, what’s stopping you from doing it now?
2. You Can Get Your Legal and Financial Affairs in Order Now
The second reason many of you gave was wanting to get your financial affairs and legal paperwork in order.
Why wouldn’t we do that now as well? That’s a genuine question. Why would we need to know what’s going on before we put our future planning in order?
Advance directives, power of attorney, living trusts. Whatever we need to do to protect our assets and help the family we leave behind, we can start now, regardless of our risk.
3. Could an Alzheimer’s Blood Test Affect Your Insurance?
The third thing to think about is possible insurance issues. When I made the video, I thought this was one of the reasons the blood test wasn’t widely available yet.
If insurance companies knew you had an increased risk for dementia, would they still cover you? Would they take away your coverage? Would it keep you from getting other types of insurance, like long-term care insurance?
There are some issues there that concern me.
4. Could It Affect Your Job?
Many of us are still working. If your employer had access to your result, or somehow found out you had this increased risk, would it affect your job?
Would you be considered for promotions? For certain projects? Would you get passed over more than other people?
Ideally, they would never find out. But it’s something to consider. It would certainly be on my mind.
5. How Other People Might Treat You
Another issue is how other people treat you if they find out.
This is true even when someone has dementia. Sometimes it really is a personal decision whether to share the diagnosis, because people can start to treat you differently. They might back away. There’s so much confusion and stigma around dementia that they don’t know what they’re supposed to do or say. So they sort of disappear, at a time when we need the most help and support possible.
6. The Nocebo Effect: When Knowing Changes How You Feel
The sixth and final thing that concerns me is the emotional impact, and something called the nocebo effect. Have you heard of it?
We’ve all heard of the placebo effect. That’s when we have positive expectations that something is going to work, and so we get positive results. Every medication has to beat the placebo effect, because it’s real. Some medications that are prescribed barely beat a sugar pill that wasn’t designed to do anything. Our minds are that powerful. When we expect something to help us and we swallow the pill, it feels like it did something. We start to feel better, and our blood test results can actually move in a good direction.
The nocebo effect is the opposite. It’s a negative outcome from a negative expectation.
And get this. A study looked at older adults who were told they carried a gene linked to a higher risk of Alzheimer’s disease. They took typical memory tests, the kind someone gets during a dementia evaluation, and filled out a questionnaire on how they thought their own memory was doing.
The people who knew they carried that gene rated their memory as worse. And they actually scored worse on a memory test than people with the same gene who hadn’t been told. Same gene, same risk. The only difference was knowing, and that alone changed how they felt and how they did.
That’s my concern about people who want this test. They might feel doomed. They might feel like things are going to get worse.
Because it’s well established in research that having these plaques in your brain is not a guarantee you’re going to get dementia. Absolutely not. There are people with these plaques who develop Alzheimer’s disease, and people with these plaques who never do. There are even people who don’t have these plaques and still get Alzheimer’s disease.
This is a potential risk factor, just like smoking cigarettes is a risk factor, eating unhealthy food is a risk factor, and not exercising is a risk factor. It’s not a guarantee. Please keep that in mind.
Before You Get the Test, Talk It Through
Careblazer, this is so important with any kind of testing like this. You might want to consider talking with a genetics counselor first. At a bare minimum, talk to your healthcare provider about the pros and cons of blood-based testing for Alzheimer’s disease.
Then ask yourself whether these six things change your mind one way or the other.
Weighing a decision like this is easier when you can talk it through with people who get it. Inside the Care Collective, you can think through decisions like this one with other Careblazers: what’s happening, what to plan for, and how to look after yourself along the way. You can learn more here.
