Should I get the genetic test for dementia? Are there any benefits to knowing if I carry the gene?
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.
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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.
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.
Before you have any genetic testing yourself, I'd make an appointment with a genetic counselor who specializes in neurogenetics/ALS. Your sister's actual genetic-test result is extremely important. If she has an identified disease-causing mutation, you can then decide whether you want predictive testing specifically for that mutation. Testing an unaffected relative is much more informative when the genetic cause has first been identified in the family member who actually has ALS.
Also, “the dementia gene” isn't really one thing. Most Alzheimer's disease is not caused by a single gene that guarantees you'll develop Alzheimer's. And some genes associated with ALS can also be associated with frontotemporal dementia. A genetic counselor can look at your grandparents', mother's and sister's diagnoses and ages of onset and determine whether there is a pattern worth investigating.
Your sister is also raising a very legitimate insurance concern. The federal Genetic Information Nondiscrimination Act (GINA) generally prevents health insurers and employers from discriminating against you because of genetic information, but it does not protect long-term-care, life or disability insurance. Depending upon state law and the insurer, genetic-test information can potentially affect eligibility or premiums for those products.
In fact, the ALS Association specifically recommends that people considering predictive genetic testing secure any life, disability and long-term-care insurance they want before undergoing testing because of this issue.
There can be benefits to knowing. A positive result may help with future planning and may make someone eligible for research studies or prevention trials. A negative result for a known family mutation can also be enormously reassuring. But a positive result often cannot tell you whether you will definitely become ill, when symptoms would begin, or how severe the disease would be because penetrance varies among ALS-associated mutations.
So at age 57, with no LTC insurance, I wouldn't rush into testing just because your sister wants you to do it. First get a copy of your sister's genetic results. Second, meet with a genetic counselor. Third, investigate and, if appropriate, apply for any LTC/life/disability coverage you want before testing. Then make an informed decision about whether knowing would actually be useful to 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.
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.
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."
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.
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.
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.
Hope for the best, Prepare for the worst