Genetic Testing for Alzheimers

Denise1847

Does anyone have experience with your children getting genetically tested for Alzheimers?

My DH with AD never knew his father so we do not know if there is a family history on his father's side. The mother's side had no history.

My son's doctor informed him he could get tested but cautioned him that a positive result could impact life and LTC insurance.

From what I have read, they currently only test for APOE4 and not the other genes that have a bearing on the disease. My concern is that if the test comes back positive for APOE4, then he will live his life with the threat of AD. I thought about have my DH tested as it might answer my son's question.

I suggested to my son that there have been other factors in my DH's history that could have brought on AD (sleep apnea, atrial fib, Viet Nam vet, Camp LeJeune, diet etc.).

Any thoughts or knowledge are greatly appreciated.

Ed1937

Denise, if it were me, I would not opt for testing. There is only about 5% of people who have familial alzheimer's disease. You could always ask your son to follow "Best Practices", which would be a good thing to do whether or not he was at risk. I'm hoping Iris sees this because she is the authority on Best Practices. She can help, and explain why it's a good thing.

Iris L.

Yes, having a positive test for APOe4, or even testing for it, could impact his health insurance. Having a positive test for one copy of the gene implies an increased risk of developing Alzheimer's Disease, but there is not a definitive risk. Having two copies gives a greater risk. Since the father has AD, his risk is somewhat increased. But no one can tell by how much.

The major risk factor is age. The other factors are chronic diseases that affect the brain. People with chronic diseases are at higher risk. The best thing to do is to follow Best Practices and avoid head trauma. Someone just posted about air pollution as a risk factor. So, avoid air pollution as much as possible. Live your life so as to have no or few regrets. Do your Bucket List now. Arrange your legal and financial affairs. Then, if dementia arrives, you will be prepared. There is no known definite preventative. We have to do the best we can.

Iris

Denise1847

Thank you Ed and Iris.

fayth

Our family is part of the 3 to 5% of those whose AD is familial. My spouse had dominantly inherited AD, which means that each of our children have a 50/50 chance of getting the mutation. And, if they have the mutation, 99% chance of developing AD. One of my children was tested (it turned out well!), my other child has not yet decided to be tested. The DIAN study, out of Washington University, is studying this rare form of AD. https://dian.wustl.edu/ There is a lot of information here. You can also find information about deciding about whether or not to get genetic testing.

I hope your family is NOT part of this group! But, if so, the DIAN group has been a huge support to our family and is doing some very important research.

Denise1847

Thank you Fayth. Do you think if my DH was tested, it would help? I was thinking if my DH tested negative, then my son could rest his mind. Is that a correct assumption? This is a terrible thing to have hanging over your head throughout your life. I am so very sorry for your spouse.

Rick4407

Hello Denise, A very short note since I see your DH is a Vet. Be sure to check with the VA about benefits. A VSO is a good place to start. They assist and are usually very knowledgeable. The VA in many states operates small group homes when/if memory care becomes an issue. Rick

SDianeL

Hello Denise, Rick4407 is correct. If your DH is not disability rated at the VA, file a claim. Find your Veteran Service Office in your County and they will help. I just found out that Dementia & Alz has been tied to Agent Orange exposure and increases the chance of Dementia/ALZ by 50%. Although it's not on the presumptive list, I read that the VA will allow a claim and approve it. With a disability rating from the VA you get many more benefits like respite care and memory care facility benefits when needed. I'm getting 720 hours per year of respite care and a caregiver stipend each month. My thinking about being tested: Since there is no cure for Dementia/ALZ I would not be tested. As other have said, only a small percentage of people inherit ALZ. I would just make sure everyone in the family knows the behaviors of memory loss so they can watch for them and be tested if/when they manifest themselves.

Denise1847

Thank you Rick and Diane.

I have filed a claim with the VA for disability for him. They actually sent him a letter about how to apply. We will see what comes of it. Thank you both very much your thoughts and suggestions.

ngurley1

> @fayth said:
> Our family is part of the 3 to 5% of those whose AD is familial. My spouse had dominantly inherited AD, which means that each of our children have a 50/50 chance of getting the mutation. And, if they have the mutation, 99% chance of developing AD. One of my children was tested (it turned out well!), my other child has not yet decided to be tested. The DIAN study, out of Washington University, is studying this rare form of AD. https://dian.wustl.edu/ There is a lot of information here. You can also find information about deciding about whether or not to get genetic testing.
> I hope your family is NOT part of this group! But, if so, the DIAN group has been a huge support to our family and is doing some very important research.

> @fayth said:
> Our family is part of the 3 to 5% of those whose AD is familial. My spouse had dominantly inherited AD, which means that each of our children have a 50/50 chance of getting the mutation. And, if they have the mutation, 99% chance of developing AD. One of my children was tested (it turned out well!), my other child has not yet decided to be tested. The DIAN study, out of Washington University, is studying this rare form of AD. https://dian.wustl.edu/ There is a lot of information here. You can also find information about deciding about whether or not to get genetic testing.
> I hope your family is NOT part of this group! But, if so, the DIAN group has been a huge support to our family and is doing some very important research.

> @fayth said:
> Our family is part of the 3 to 5% of those whose AD is familial. My spouse had dominantly inherited AD, which means that each of our children have a 50/50 chance of getting the mutation. And, if they have the mutation, 99% chance of developing AD. One of my children was tested (it turned out well!), my other child has not yet decided to be tested. The DIAN study, out of Washington University, is studying this rare form of AD. https://dian.wustl.edu/ There is a lot of information here. You can also find information about deciding about whether or not to get genetic testing.
> I hope your family is NOT part of this group! But, if so, the DIAN group has been a huge support to our family and is doing some very important research.

Hi! Do you have information on what genetic testing they did? I’d like to be tested, but there are so many options online that I do not know where to start. I do not really have a primary care to start with, but could, if that is where I need to start. TIA!

trottingalong

Testing is a very personal choice. My DH has always looked at it as a crap shoot (excuse my language). The vast majority of those with Alzheimer’s is not genetic. If you carry the gene, it doesn’t mean you will get it, but it has the potential to create constant worry. Every forgetful or confusing moment becomes “what ifs.” Is it worth that stress. To our children, the answer was no. Our one daughter spoke with her doctor who reminded her that she could test negative for the gene. That still didn’t guarantee she wouldn’t get it down the road.

wizmo

DW without family history at the time was tested after diagnosis at age 53, single APOE4. Few years later her father age 88 developed MCI and probable AD. Her brother opted not to test, would rather not know and not worry. Everyone is different.

As others suggested you can chose to live a cleaner life through diet and environment choices to reduce likelihood of developing AD and other health issues.

When I applied for LTC insurance about 7 years ago they did not ask about genetic testing, only 2 years of medical records and family history. I know of one person whose LTC benefit was limited to 50% due to family history, not simply denied.

Bluebird

My husband has not been tested but we’re pretty sure in his family it’s genetic. Out of the 5 cousins, on his mother’s side, 4 have Alzheimer’s and all of their mothers had Alzheimer’s. Our daughters have said if they were offered to be tested they would not do it.

easy23

23andme tests for the APOE4 gene. You can opt out if you like.

Elizabeth607

Once my DH's Neurologist "suspected" that might he might have Alzheimer's he was tested for APOE 4 and he had the gene. His Mother had dementia. She was never tested for AD. However, to make certain, the Doctor ordered a PET Scan to see if amyloid plaque was present and it was. Going back to the gene, the Doctor said that there are people with the gene that never develop AD and there are people without the gene that do develop AD. So in reality, when the Doctor "suspected" my DH had Alzheimer's he could have just skipped the gene testing and performed the PET Scan, in my opinion.

Denise1847

https://alzconnected.org/discussion/comment/196293#Comment_196293

Hi Fayth, The site we used for testing is www.empowerdxlab.com. It was recommended by a doctor.

2dogssing

I had some gene testing as part of my preparation for Leqembi Infusion. My reading comprehension feels like it has reverted back to the 6 yo me. I don't think I have the gene being discussed. I do have the plaque. My family have almost all lived into their 90's & kept their faculties. My mother is only 88.