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My maternal grandparents both had Alzheimer’s, and my mom, their only child, has dementia. Now my younger sister (56 yrs), has been diagnosed with ALS. She had the genetic test done, and wants me to get tested too. I am 57 yrs old, married, still working as a teacher, and I have adult kids and a grandchild. I used to be a caregiver for my mom, and now I make all her care decisions and visit her in MC. I do not have LTC insurance, and my sister says I won’t be able to purchase coverage if I have the genetic test done. Another puzzling thing: she hasn’t said anything about the genetic testing to our youngest sibling (51 yrs). Would you want to know? Even if I have the genetic test done, it doesn’t mean that I would 100% develop ALS or dementia.

LTC insurance - my experience. My husband had LTC insurance from buying an LTC policy years ago with a major insurer in the U.S. He has dementia and is in memory care. Dealing with this company was a nightmare. Filing claims was miserable. It was difficult to get anyone on the phone there. They were very particular about what part of his needs they would pay for, and only certain institutions. He was due $15,000 for his care, and care was $8200 a month, so it didn't even pay for two months in memory care. Shortly after we finally got all the money, they switched to accepting claims only online rather than filling out paperwork and mailing it to their claims center. People need to be adept at filing out forms on a computer - or else. Needless to say, I'm not a fan of LTC insurance. It's a scam.

They strung out the payout with every kind of delay possible. My take: if he died before they paid it out, they'd win. They'd never have to pay.

Do this instead: start a savings account or multiple CDs that pay a high rate of interest. Add to them regularly as you would pay premiums to an LTC policy. Label them "For My Health Care" or something to set them apart from other savings. NEVER TOUCH THE MONEY IN THOSE ACCOUNTS! DO NOT USE IT TO BUY YOUR TEENAGER A CAR! DO NOT USE IT FOR A TRIP TO EUROPE! It is your own private LTC insurance, and you can access the funds when you need them. No company can tell you they won't pay for home care or whatever. No company can refuse to answer your calls, tell you that you didn't fill out the claim forms properly, or make money on your money by being the middleman. You own the money and you decide when to use it for your own care and where to spend it. Whatever your genetic test reveals, you have insured yourself an you will have the funds you need when you need them.

This is what I have done. I hope this helps.
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Reply to Fawnby
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Foamergirl Aug 30, 2026
Beautiful answer!

The LTC I worked at did not take LTC insurance, so I’m doing just as you suggest. And, had money saved for my spouse when he was in LTC on hospice.
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ALS is Lou Gehrigs disease. AD is Alzheimer's Disease. I would not want the genetic test myself because it proves nothing, really. But that's between you and your doctor I guess. Just enjoy your life, that's my advice. Who really wants to plant a seed of worry in their mind?
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What benefit would you gain by knowing if you had the biomarkers for AD? How would you emotionally handle it? Would you freak out? Would you change your life? Too late! Changes in the brain can occur 20 years before any dementia symptoms appear. As for me? No, thank you.

If the test showed that you had the APOE4 gene ( inappropriately called the AD gene), that doesn't guarantee you'll get AD. It merely increases the RISK of getting the disease. If each parent passed an APOE4 gene to you, still no guarantee but yet greater risk. Conversely, not having a copy of the APOE4 gene doesn't guarantee you won't get AD either. So what's the use?

The only practical benefit would be that you address the inevitable outcome by getting your ducks in a row by creating POAs, a living trust, updating your financial documents, etc.
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Suzy23 Aug 30, 2026
My dad had FTD. For myself, I decided against testing for genetic markers. But I did update my legal paperwork, and doubled down on saving as much as I can so that if I need professional care I can spare my son of the burden. Also, I committed to regular health care.

I am also considering writing and notarizing a statement to the effect that if two people I love plus one doctor recommend that I be placed in care, I will do it, even if at the time I feel opposed. This because so many with dementia (my dad included) cannot believe or accept the reality once they have it (anosognosia). Of course, if/when I get dementia, I could easily say the paper was a fake, but I hope to give others the confidence to do what needs to be done even if I become unable to see it. I want them to feel no doubt that the me who is fully competent does not want them to suffer if/when I become incompetent.
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Taking the test is a personal choice.
I got the genetic test years ago since dementia runs in my family, and found that I have an increased risk for Alzheimer's. This led me to being particularly careful to avoid behaviors that may further increase the risk of dementia. I gave POA to my oldest to apply if I am incapacitated, and am saving for LTC. Also, should there be studies on Alzheimer's in my area, I will volunteer to be a test subject.
My husband, who now has Alzheimer's, refused to be tested. My children chose to be tested.
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Senior8 Aug 29, 2026
There are many studies on Alzheimer’s that are out there. Some are being defunded by department of health and education. Some research institutions are still struggling to get their funding back for their work. You can reach out to local medical schools or the Alzheimer’s Association, they also have screeners and questionnaires for patients and families with disabilities.
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I just want to say, for what it is worth, you can alter the genetics toward Alzheimer's, also know as Diabetes 3. If you eliminate wheat, grains and sugar from your diet, you will negate much of this predisposition.
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I’m not entirely sure where I land on this. My maternal grandmother and my mother both died after multiple strokes. There’s no testing for that. Every doctor just tells me to keep my weight and blood pressure down, that’s going well so far, but it still feels a bit like a bullseye on my forehead at times. I try to live a positive life and not focus on it. As for LTC insurance, my parents had it on my mom as it was too expensive to cover them both. All it did in reality was delay the time until Medicaid kicked in to pay for her nursing home care post hemorrhagic stroke. The policy was pricey and burned through in not time. My husband and I aren’t bothering. I wish you well in deciding the right choice for you
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Reply to Daughterof1930
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"Genetic tests can show if you carry risk factors or specific gene changes linked to Amyotrophic Lateral Sclerosis (ALS) or Alzheimer's disease. However, they rarely give a simple "yes" or "no" answer about whether you will contract the diseases. Most cases of both conditions are influenced by a mix of genes and lifestyle factors rather than a single predictable gene."

Alzheimers, I feel, runs in families. My Dad has it on his side of the family. Dementia, I think thats more of a lifestyle thing. Smoking, drinking, the medications we take. If you have a head injury.

Its really up to you if you get tested. Do you really need to know if you may contract ALS or ALZ? Does it make a difference in how you will live your life? My outlook, if its going to happen not much I can do about it. For me, I rather not know at 76. I know my families history for me thats enough to help with a diagnosis if needed.


"Most of the time, ALS does not run in families. About 5% to 10% of people with ALS have a family history of the disease. Doctors call this familial ALS." 
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StacyAa Aug 29, 2026
I have a friend who has ALS and she said her doctor mentioned she would need to tell her children they were at increased risk of developing it. She and her husband decided not to because they didn't want their young adult lives ruled by this knowledge, and determined when her husband will tell them, after she's gone. I saw her point, but the kids can look it up and know her version, anyway, is potentially genetic. She didn't seem to think it was rare, but we didn't go into that much. Unfortunately, I can't ask her now, as she is in the last stages.
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I did not do the genetic testing.

Mom had alzheimer's so I figure I am at risk. It would just stress me out more to know I had the APOE4 gene.

I try to live a healthy lifestyle knowing I am at risk. I eat unprocessed. I'm learning Spanish. I'm learning ball room dancing.

My uncle had ALS. My understanding is there is not much you can do to prevent ALS.

Check out the APOE4 gene forum. These people are stressed and fanatical as they have the gene that might predispose them to alzheimers.

I choose not to test.
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Such a great question. I'm so sorry to read about your family members and the diagnoses they've been given.

I plan on being tested after this season of caregiving comes to an end because I want to know if I am predisposed to Alzheimer's. It will help me determine where I choose to live next. I'm 62, single, and I don't have any children.

(I retired early to move home so my folks could age-in-place together. My mom had dementia before she passed away. Now, I'm caring for my 90-year-old pop.)

When I mention that I want to be tested for the Alzheimer's gene, my friends get a little excited and try to discourage me. I would not do it if I didn't see it as a practical, fact-finding mission. I'm already assuming I'm going to have some form of Alzheimer's, so I'd rather it be confirmed one way or another. I still pray about it.

I hope whatever you do, you do for the sake of gaining peace.
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Reply to VVinAshland
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Grandma1954 Aug 30, 2026
What would you really do differently if you tested one way or the other?
you should have all your "legal ducks in a row" no matter what.
you should have end of life plans in place
you should have a POA for both health and finances.
you should find a home where you are comfortable and can easily age into the home so buy one that meets the criteria or renovate one so it meets potential future needs.
You have no idea what the future holds....
A car accident, a stroke, a fall or yes maybe the eventual diagnosis of some form of dementia. At any time those plans you made may need to be put into place
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It’s a good idea to find out because it will give you the opportunity to think about what you want out of your last good years.

It is sobering to find out before you need to. but we all are going to die of something. Why not know so that you can live life on your own terms until
it happens.
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Reply to Hothouseflower
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Grandma1954 Aug 30, 2026
You can make the very same decisions and plans (and we all should) without having any genetic testing done.
Hope for the best, Prepare for the worst
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