My husband & his brother both have EOAD and so did his mother. His maternal grandfather died in his early forties and nobody knows anything about his father. My husbands mother had 3 siblings including a brother that died in his early 30's. Her other 2 siblings did not develope EOAD. My question is should we inform the children of the brother that died that they may be at risk? The cousins are in their 40's.

I would not like knowing there was a genetic risk of EOAD but I would want to know. The knowledge would give me power

Power to decide (if I already did not have children) whether or not I would chance the risk of passing it on.

Power to inform my children (if I already had them) of the risk.

Power to stay alert for symptoms and request that loved ones do and will inform me if they notice changes.

Power to participate in testing. With the new medications being developed and tested there is now more hope.

Power to plan ahead by taking out long term care insurance.

Yes—I would tell the cousins.

Yes, I absolutely would want to know. It would be the same as being told there is diabetes in the family, or a history of breast cancer.

I would want to educate myself, make certain that I was followed medically; AND if I was found to be at great risk or in earliest stages, I would make my future decisions with more thought. I would have not only my future to think about more carefully, I also would have my family's future to safeguard.

You are very kind in mulling this over thoughtfully; but I would be extremely undone if one of my relatives knew about this and did not tell me, and there were negative outcomes from not knowing.

Thank you for asking the question.

I definitely want to know. There is a genetic marker that indicates a higher likelyhood of contracting the disease. As soon as I can afford it I will take the test just so that I know. There's no reason to stick our heads in the sand.

Jezza, sure I would have wanted to know, indeed knowledge is power.

My Alz was from a car accident. Head trauma. I wish I had been told that head trauma would eventually lead to dem/alz.
I know I would have done some things differently.

Telling them is one thing, but be careful about personal testing. Even if someone has the suspect genes, it is no guarantee they will get the disease. If tested, it becomes part of your medical records and they can be subpeoned by insurance companies. So testing, which won't tell you yes or no, only that you have certain genes, could keep you from getting insurance, have negative effects on your career and personal relationships. No one in my husband's family had AD, but he got it. A test will only tell you that you have the genes and may have a higher chancae of getting it, but that's about all. But knowing it's in the family can give you 'power' and that's good. But if you already know it's in the family, a test won't change anything.

Betty:

The AppoE gene is used to test for LOAD- it's a maybe yes or maybe no your going to get AD. In familial early onset AD there have been three genes identified- ps1, ps2 & app. If you inherit one of these gene there is a 100% chance you will get AD before age 65. Unfortunatly we are one of 200 family lines "lucky" enough to have these mutated genes.

Many health care professionals are still not educated about eFad.

Thank you for this info. I will research it further, but it sounds right. I still stand by not testing, especially if you know you have 100% chance of getting AD. I am deeply and profoundly sorry to hear that you are one of the 'lucky' families. I wish, for all of us, that the suspect genes can somehow be 'removed' from our DNA.

I don't know about testing, but I'd definitely want to know if it "runs in the family". I was just reading an article at my mom's nursing home about ways to try to prevent AD. So, yes, since my mother has it, I'm going to make sure I take better care of myself.

Testing? Not so sure. At least right now, I don't have to "worry" but if I tested positive for an AD genetic link, I'd probably be an over-the-top basket case. It's like knowing cancer runs rampant in my family. If I knew I had a genetic marker, I'd be WORRIED. "A chance" is one thing, "a strong possibility" is something else again.