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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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.