APOE 4/4 - Wisdom on telling siblings/children

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Snavec
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APOE 4/4 - Wisdom on telling siblings/children

Post by Snavec »

I'm looking for thoughts and wisdom on a subject I think about often but with no solid answers.

I'm in an APOE 4/4 in a large family with no family history of dementia*. I have five siblings in their 50s/60s and 2 kids in their 20's. None of them have had DNA tests as far as I can tell, but my kids must have at least one E4 and odds are most of my siblings are one E4 or worse.

The question is if I should tell them about their risk, and if so when? My awareness of my own 4/4 status came through a naive use of 23andMe in my 40s. Until this year when I became aware of preventative strategies, the knowledge did me no good and hung like a cloud I tried not to think about too much. I think as I prove to myself that this preventative path is real and sustainable, I may start telling some of my siblings -- particularly the ones likely to do something positive with the knowledge.

I didn't think I'd tell the kids until their 40s or later -- though there's a good change they will find out through a DNA test for some other reason before that, but my son skis, skateboards, and has other hobbies with risk of head injury and my daughter is Vegan so there is an argument that if they knew what I know, they might do things now that could avoid cognitive troubles later.

I'm sure many of you have faced similar dilemmas. Care to share what you learned/concluded?

-chris

* I have one brother with early AD who is APOE 3/4 but he's also had several major head injuries and I'm being very transparent with him and his wife as we work to get him on a good protocol.
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Re: APOE 4/4 - Wisdom on telling siblings/children

Post by NF52 »

Snavec wrote: Tue Feb 06, 2024 3:31 pm I'm looking for thoughts and wisdom on a subject I think about often but with no solid answers.

I'm in an APOE 4/4 in a large family with no family history of dementia*. I have five siblings in their 50s/60s and 2 kids in their 20's. None of them have had DNA tests as far as I can tell, but my kids must have at least one E4 and odds are most of my siblings are one E4 or worse.

The question is if I should tell them about their risk, and if so when? My awareness of my own 4/4 status came through a naive use of 23andMe in my 40s. Until this year when I became aware of preventative strategies, the knowledge did me no good and hung like a cloud I tried not to think about too much. I think as I prove to myself that this preventative path is real and sustainable, I may start telling some of my siblings -- particularly the ones likely to do something positive with the knowledge.

I didn't think I'd tell the kids until their 40s or later -- though there's a good change they will find out through a DNA test for some other reason before that, but my son skis, skateboards, and has other hobbies with risk of head injury and my daughter is Vegan so there is an argument that if they knew what I know, they might do things now that could avoid cognitive troubles later.

I'm sure many of you have faced similar dilemmas. Care to share what you learned/concluded?

-chris

* I have one brother with early AD who is APOE 3/4 but he's also had several major head injuries and I'm being very transparent with him and his wife as we work to get him on a good protocol.
Hi Chris,

You're a great parent and sibling to think about how this might affect those that you care about, and to be there for your brother with a history of several major head injuries. No one answer is right for everyone, so I'll share a resource we have on our Welcome page that addresses several areas: Thinking About Testing?

Assuming your parents were each ApoE 3/4, (given your lucky family history one may have been ApoE 3/4 and one ApoE 2/4), each of your siblings had a 25% chance of being ApoE 3/3 or ApoE 4/4 and a 50% chance of being ApoE 3/4. But that doesn't mean that 50% of them are ApoE3/4: the dice were rolled each time, not for the 5 of you as a group.

My 3 siblings, in their 70's like me, have chosen not to test. I decided not to say anything to my siblings when I found out at age 61 ten years ago, since I suspected they were happy with their own choices. I also worried about their reaction, since my mother and many of her 10 siblings had varying levels of dementia at death in their 80's. That proved to be true when I finally told them within the last 2-4 years. They are very supportive but okay with not knowing and doing what's working for them. I suspect they will all do just fine for years to come, regardless of their status.

But if I were facing that same decision today, with what I know now about lifestyle prevention and the benefits of checking things like B12, Vitamin D, insulin resistance, Hemoglobin A1C, C-reactive protein, thyroid, LDL-P, Lp(a) and asking for a coronary treadmill stress test and coronary artery scan given a history of early CAD (which I passed-whew!), I'd be advising my siblings that I've learned about some things I can control that I think will keep my heart and brain healthy for another 30 years, in case they want to check those things also. If they want to know WHY I know I have a risk, then I'd tell them. And if they want to know THEIR risk, I'd ask them to think about it--and possibly think about getting long-term care insurance before they ask a doctor for it (finding out in direct-to-consumer testing doesn't affect that.)

Ten years ago our three children were in their late 20's and I decided to not share it with our children then, since all were healthy and very busy with new adult lives. But by 2017, when I enrolled in the Generations Study, I told them about the study and that they each had ApoE 3/4 (my husband is ApoE 3/3). I also shared the results of this large meta-analysis of population-based risk estimate for MY generation--not theirs:
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2). These values...use round numbers for intelligibility, and broader ranges to reflect statistical and other sources of uncertainty...[and] are insufficiently precise for “personalized medicine” incidence estimates based on sex, education, or other factors.
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts.

Their attitude was basically "we figured we had some risk, since our grandmothers both had this." Ten years later they are happy (as am I!) that I'm still fine, engaged with lots of projects related to ApoE4 and AD prevention, including another clinical trial. All have exciting jobs, high activity levels, enjoy healthy diets, ranging from vegetarian to Mediterranean (one lives in the Mediterranean region!) to home-cooked real food. I have emphasized with them the speed and benefits of recent research into biomarkers and prevention research. As long as your active son is wearing head protection, he is likely to benefit greatly from all that high-intensity exercise. My 73 year old sister still hits the ski slopes--and will probably be like her grandmother who ice-skated into her 80's and lived to 93.

I think you have some time to think about this and maybe gently ask them eventually: "I learned something from 23&me about my risk of Alzheimer's and heart disease that has made me more aware of prevention. Would you like to hear about it?"

Nancy
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Re: APOE 4/4 - Wisdom on telling siblings/children

Post by TheresaB »

Snavec wrote: Tue Feb 06, 2024 3:31 pm I'm in an APOE 4/4 in a large family with no family history of dementia*. I have five siblings in their 50s/60s and 2 kids in their 20's. None of them have had DNA tests as far as I can tell, but my kids must have at least one E4 and odds are most of my siblings are one E4 or worse.
Here's my story.

When I tested for my APOE status almost 10 years ago, I, too, came from a large family with no history of dementia except for my paternal grandmother who developed it in her 90s and died at 98, so I gave that a pass. To support my then boyfriend at the time/now husband who had just found out his 3/4 status, I agreed to test, but dismissed the possibility of testing positive. Test results for me came back 4/4.

When I learned my 4/4 status, I didn’t care if my four older siblings wanted to know or not, I told them! I felt it was very important that they know. I felt I’d be doing more harm by withholding such information.

I told them about this organization/website, ApoE4.info. I told them about Dr Bredesen, his research and his books. I told them about dietary/lifestyle changes I had made.

I didn’t pound the information down their throats, ears tend to turn off if you lecture too hard, but since it was important to me, I offered gentle nudges every now and then.

As I learned more about this allele, I discovered that ApoE4 is associated with more than just dementia, notably, cardiovascular disease and shortened longevity. It became clear to me that E4 was strong throughout both sides of my family. Very few in my family - grandparents, parents, uncles, aunts, cousins, siblings made it out of their 70s, and a significant percentage never even made it to their 70s. Mostly cardiovascular disease issues.

My four siblings disregarded the information on ApoE4 that I shared with them.
• Two are now dead (one from a heart attack, the other suffered from co-morbidities that included cardiovascular disease, his death was accelerated by COVID).
• My two living siblings currently have dementia, they were dementia free when I informed them about ApoE4.

I’m mad my siblings didn’t listen to me. I would be even angrier with myself if I had never told them.

By the way, when my husband learned his 3/4 status, he told his two adult (in their 20s) children, asked if they wanted know and that he'd pay for the testing if they did. They both wanted the testing. Both have one 4. Both have pursued dietary/lifestyle changes.
-Theresa
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Re: APOE 4/4 - Wisdom on telling siblings/children

Post by Maria4/4 »

TheresaB wrote: Wed Feb 07, 2024 6:56 am Here's my story.
Thanks a lot, Theresa, for sharing your story. I am so sorry for your siblings.
Snavec wrote: Tue Feb 06, 2024 3:31 pm I'm looking for thoughts and wisdom on a subject I think about often but with no solid answers.
Thank you, Snavec, for bringing this very relevant subject to light. I've been thinking about this a lot and I don't have a direct answer to share, just my doubts and insecurities.

Both my parents died with dementia. There was no history of dementia in the previous generation, but a lot of cardio-vascular problems. When I tested my APOE status, I thought it couldn't be bad news. I thought I was going to be relieved with the results and go on with my life. It turns out I am 4/4. For several weeks after finding out the result I didn't sleep. I just wanted to die. I didn't want to be a burden on my family. I didn't want them to see me demented.

But I started following the Bredesen protocol and my health improved a lot. I am so impressed with the results I feel on a daily basis that I recommend it to all my friends. I am now thinking in celebrating every year the day I knew I was a 4/4, because it completly changed my life... like a reborn moment. I feel my life is more precious and I am more careful with my decisions regarding my career or the destination of my holidays.... because I don't know how I will be tomorrow, but today I am great and I want to enjoy every minute.

As soon as I knew my condition, I started looking for information that would help me better understand the chances of contracting the disease and learning everything I could to change my increased probability of contracting it. And I made a decision: I won't test something that isn't actionable. For example, I don't want to know if I will have dementia in 10 years, because there is nothing different I can do right now to change that. I want to know my homocysteine levels because there are many things I can do to lower them if they are high.

So I decided to do the same with my family. I don't have siblings but I have adolescent kids. I don't know their APOE status and I didn't tell them anything about mine. Sometimes I just say: "We are probably more likely to have dementia as it runs in our families, but we know the tools we have to combat this likelihood, so let's focus on what we can do". Once per year I take them to my functional medicine doctor and we test all the relevant biomarkers. They take some supplements. They exercise on a regular basis. I insist that they have I good sleep higiene. My number one priority right now is to pass on all my knowledge to them so they can take care of themselves when I'm not around. And the most important thing I want them to remember, is that we are responsible for our health, not the doctors. We are the CEOs of our health. As I am able to manage their health at this moment and I am preparing them to do it by themselves, I feel that knowing their APOE status would not change the way they care for themselves and could be so traumatic, as they saw what dementia did to their grandparents.

So my question to you, Snavec, is this: if you tell your family, will they do anything about it? If your children are in great shape, eating healthily, exercising, regularly checking relevant biomarkers, it may not be relevant for them to know their APOE status. If you know they are becoming insulin resistant, are overweight, are not eating well and there is no other way to convince them to improve their lifestyle, it might be worth telling them.

I want to tell you that I know it is a very difficult decision. Someday I will have to tell my kids, but I am so afraid of doing it. I don't want them to feel what I felt when I knew I was 4/4. I hope you will find soon the decision that works best for you and your family and that you will feel at peace with it.
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Re: APOE 4/4 - Wisdom on telling siblings/children

Post by Snavec »

Thank you for your thoughtful post, Maria. I love your statement that "we are the CEOs of our health". For the first 10 or so years I knew about being 4/4 AD just seemed like a mysterious boogeyman that may be hiding in your closet. it he's there, he'll jump out someday and steal your brain, but there was no way to know if he was there and no way to stop him. Learning this year that the situation can be managed and measured was a BIG revelation for me.

On the question of what/when do I talk to my kids. It goes back to what I shared about their risks. My son is a bit of a daredevil who really should be wearing a helmet more often, but probably won't unless I tell him why he, specifically, has a bigger risk than others with head injuries. My daughter is Vegan and may be perfectly fine, but I'd feel much better if she (and I) could see her biomarkers to confirm she doesn't need to supplement more. I'll talk to my wife about whether we can encourage them to have a physical every few years with my functional medicine doc without going into more details. Thanks for the advice.

-Chris
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Re: APOE 4/4 - Wisdom on telling siblings/children

Post by Plumster »

Snavec wrote: Mon Feb 26, 2024 3:53 pm Thank you for your thoughtful post, Maria. I love your statement that "we are the CEOs of our health". For the first 10 or so years I knew about being 4/4 AD just seemed like a mysterious boogeyman that may be hiding in your closet. it he's there, he'll jump out someday and steal your brain, but there was no way to know if he was there and no way to stop him. Learning this year that the situation can be managed and measured was a BIG revelation for me.

On the question of what/when do I talk to my kids. It goes back to what I shared about their risks. My son is a bit of a daredevil who really should be wearing a helmet more often, but probably won't unless I tell him why he, specifically, has a bigger risk than others with head injuries. My daughter is Vegan and may be perfectly fine, but I'd feel much better if she (and I) could see her biomarkers to confirm she doesn't need to supplement more. I'll talk to my wife about whether we can encourage them to have a physical every few years with my functional medicine doc without going into more details. Thanks for the advice.

-Chris
Personally, I would definitely inform the kids about risks such as the need for a helmet and to get sufficient omega3s.
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Re: APOE 4/4 - Wisdom on telling siblings/children

Post by Fc1345linville »

I have not been active on the Forum in several years, but that is not because of any bad news. In fact, I am in relatively good health.

Quick background, I found out I was 4/4 in a surprise 23andMe report in 2013 when I was 71. The good news was that I had chosen a healthy life style in my late 20"s (lots of daily exercise, eating an almost-Mediteranian diet to control my weight, good nights sleep and a relatively stress-free, intellectually active life).

I'm almost 82 and still following the same life style, with minor mods owing to age. I prop up some short-term memory loss with heavy use of Google calendar and Post-it notes, and make occasional use of the "Find-it" app when I misplace my phone. :-))

When I first discovered my 4/4 status, my wife and I decided not to bring it up with our three healthy adult children because there were at that time, in our opinion, no effective medical treatments of Alzheimers. And since they were leading healthy life styles, I did tell them until 2016, when I joined a Stanford Medical School clinical trial for 4/4 participants.

We know that all 4/4s do not get AD, possibly because of their healthy life style. Hopefully we are close to developing a medical treatment that will lead to a cure. In the meantime, I'm trying to live smart.

Fc
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Re: APOE 4/4 - Wisdom on telling siblings/children

Post by Maria4/4 »

Thanks Fc1345linville for sharing your story. So inspiring!
Maria 4/4
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