Intro/Wife of a 4/4

[6357lbs]

Hi all! I am in serious need of some support and guidance. My husband is 4/4 but doesn't know it. His dad died from vascular dementia eight years ago so he doesn't believe it is genetic. I have been into genealogy/DNA for a very long time and had us both tested through 23andme in around 2015. It came as quite a shock to me to see his status. I have lost sleep many nights trying to decide whether to tell him or not and worrying about what the future might hold for us. He had told me not long after his dad died that he would "take a gun to his head if he ended up with dementia". So, I take this decision very seriously. I read the research article written by Doris T. Zallen, PhD and based on some of the reactions of other people who found out accidentally through genetic testing decided it would not be fair of me to spring this information on him unsolicited. So, I am trying to encourage all the healthy lifestyle choices that would benefit him in a general health sense knowing it will help him in the long run being a 4/4. We have a great relationship and marriage so it feels a little underhanded of me not to be direct and discuss it with him. His grandfather died at the age of 62 of a heart attach so I approach this all from a cardiac health perspective which I think might be easier to stomach than knowing his genetic risk of Alzheimers. His cholesterol numbers are a little out of whack so he is taking measures based on my suggestions to bring those numbers to a healthier level which I know will ultimately decrease his risk of Alzheimer's. I know they go hand in hand. Is there anybody out there who has a similiar situation to mine? I haven't told a soul about this so have had no one to talk to. Thank you for reading!!

[NataliaReyn]

Hi all! I am in serious need of some support and guidance. My husband is 4/4 but doesn't know it. His dad died from vascular dementia eight years ago so he doesn't believe it is genetic. I have been into genealogy/DNA for a very long time and had us both tested through 23andme in around 2015. It came as quite a shock to me to see his status. I have lost sleep many nights trying to decide whether to tell him or not and worrying about what the future might hold for us. He had told me not long after his dad died that he would "take a gun to his head if he ended up with dementia". So, I take this decision very seriously. I read the research article written by Doris T. Zallen, PhD and based on some of the reactions of other people who found out accidentally through genetic testing decided it would not be fair of me to spring this information on him unsolicited. So, I am trying to encourage all the healthy lifestyle choices that would benefit him in a general health sense knowing it will help him in the long run being a 4/4. We have a great relationship and marriage so it feels a little underhanded of me not to be direct and discuss it with him. His grandfather died at the age of 62 of a heart attach so I approach this all from a cardiac health perspective which I think might be easier to stomach than knowing his genetic risk of Alzheimers. His cholesterol numbers are a little out of whack so he is taking measures based on my suggestions to bring those numbers to a healthier level which I know will ultimately decrease his risk of Alzheimer's. I know they go hand in hand. Is there anybody out there who has a similiar situation to mine? I haven't told a soul about this so have had no one to talk to. Thank you for reading!!

Hello, 6357lbs!

I would first like to say, welcome to our community! You have found an amazing group of caring individuals. Thank you so much for your vulnerability and sharing this with us. Other members on this forum may be able to contribute to this conversation, and maybe even someone with a similar situation.
I am so sorry to hear that you are losing sleep over this. This must be very difficult since we want the very best for our loved ones. Sounds like your husband is lucky to have you and also sounds like you have been doing your best taking such good care of him and encouraging a healthy lifestyle so he can be well. I am curious, how is he responding to all the healthy lifestyle changes you are encouraging? Does he enjoy working on his health? Does he believe in any preventative measures? Would he do more for his health if he knew his status? The reason I ask this is because there is a program out there specifically for prevention of cognitive decline called the Bredesen Protocol, and this includes PreCODE (prevention for those with risk but without symptoms) and ReCODE (reversal of early-onset AD); you can find more information on our Wiki Bredesen Protocol and also on Apollo Health . One does not have to know Apoe4 status in order to improve test results and prevent/delay cognitive decline. Thankfully, having 4/4 also does not mean he will get AD but it also helps to start prevention as early as possible. You mentioned cardiac health and AD being related and you're absolutely right, and so this is another reason I am mentioning this protocol, since it works to address all biomarkers. Having said that we also have a list of ApoE4-Aware Healthcare Practitioners here on Wiki and a lot of them are certified in Bredesen protocol as well.
I also want to encourage you to take care of yourself and your health as this is stressful. I often find it is also helpful to find someone to talk to, like a counselor. You never know the support you may be able to receive to help you stay strong.

Also, as a Support Team Intern, I can share several tools/resources to help you get the most out of your experience on this site just in case you have not done so already. The Primer is a detailed and informative resource written by a practicing M.D. with ApoE4/4. It includes information about the biochemistry of the ApoE4 gene and offers a variety of research-based prevention strategies.

Some helpful tips to navigate the site include the How-To Guide. It includes topics such as navigating the forum, private messaging, and searching.

If you are interested in learning more about other members check out Our Stories.

Two more tips to improve your experience here:

• If you want to Search for posts on a specific topic, you can use the text box labeled "Search" right under your user name and enter those specific terms.

• To be sure a forum member is notified of your post, just click use the large quotation mark icon in the upper right corner of they post.

Again, thank you for joining our community and please know we are all here for you. We can't provide medical advice of course, but we will do our best to support you and guide you.

Wishing you hope and strength,

Natalia

[Tincup]

Hi 6357lbs,

I'm not in your shoes, but am a 67 year old 3/4 (with a mother who died with dementia & as her only child, I managed her care during the dementia) married to a 4/4. One way to look at having a 4 gene is there is nothing that can be done to avoid AD. The other way, and the way my wife and I look at it is that knowing our status is a blessing. There are many ways to mitigate our risk and knowing we have the risk gives us the opportunity to implement these strategies. My 3/3 first wife's mother is 99 and got dementia in her late 80's, so I know that a lack of a 4 gene is no guarantee of not getting dementia (don't know she's not a 3/4, but looking at family history for several generations, it is unlikely). My wife's two living siblings have dementia in their 70's. When she learned of her 4/4 status 10 years ago, she shared it with her family. They chose to ignore her information and not implement any strategies. Additionally, we got married after we knew each other's ApoE status and the implications thereof.

[TCHC]

Hi 6375lbs

That is a pickle. My situation is a little different. My Mum is diagnosed, but in complete denial (outwardly at least). She does take all the supplements, and she's never been one for taking pills, so I think she is aware of what she's doing and why, but we just don't talk about it! It's so much harder with family than with a stranger!

I was thinking, as you're able to suggest health choices based on cardiac health, would he be open to prevention measures if he thought they were heart and brain healthy?

Could you do something together? Could you embark on the journey (irrespective of DNA) together, asking him to support you in YOUR quest to stay brainfit for life? You don't mention your age, but if you are of an age where health comes to the fore, it may seem like a reasonable leap. Especially if you've not been sleeping well!

The ApoE4 gene is not the be-all and end-all. My Mum is 3/4. I am 3/3 and happy about that. But I did do my DNA and found many other contributory genes that Mum has passed to me, so I'm on prevention myself. So you don't have to be ApoE4 to be on prevention! In fact, some people with 4/4 never get Alzheimer's - some people without 4, do get Alzheimer's.

It sounds like this is eating you up and you must look after yourself! The protocol is healthy for anyone, so it may well put your mind at rest and help you sleep. But also help with other health aspects that you weren't expecting!

Good luck. Keep us up to date with how you get on!

Lindsey

[6357lbs]

Thank you so much, Natalia, Tincup and Lindsey! I am not sure how or if I can respond separately so I will just respond in one post. Natalia, I do know about the Bredesen protocol. I probably should have written a little more but didn't want my initial post to be too long! My husband and I lead fairly healthy lifestyles. We are not overweight. We eat relatively healthy leaning towards lean meats, veggies, fruits, nuts and the occasional whole grains. I make breakfast most days and dinner almost every night so have good control over the food we eat. I make it, he happily eats it. The one thing that worries me the most is that he enjoys drinking. We have cut way back since our earlier married life. I hardly drink at all anymore. He drinks 2-3 drinks two or three times a month. So, it isn't too much but I know even any alcohol is not good particularly for a 4/4. He gets good cardio workouts and strength training about 5x weekly. We are both retired so stress levels are low. He is in his 50's and I am in my 60's. I would say at this point his memory is better than mine! I am a 2/3 by the way. He reads voraciously which I know is good for his brain. I really appreciate the links you included in your post. I might not post much here but will be reading and learning. I follow Rhonda Patrick, Peter Attia and use Ulta Labs or Life Extension to do our blood work. His homocysteine is 9.9 and his CRP is .3 so those numbers are decent. Right now I am having him take even more Omega-3s using his heart health as the reason trying to get his cardiac numbers in a better place.

Tincup, you give me hope that living with a healthy lifestyle can actually make a difference. That is what I am banking on! I have always been into taking care of my health especially as I have gotten older and fortunately my husband cares about his health, too. I know it helps you and your wife to have each other's support! I am really glad you are both doing well!

Lindsey, A pickle is a great way to put it! I do feel like we are already on a very healthy path. Fortunately, his health is important to him. I do mention brain health to him but since his dad was diagnosed with "vascular dementia" he just doesn't seem worried about it. At least not that we have talked about. Maybe I should bring it up in a conversation without mentioning the ApoE factor. I totally agree living a healthy lifestyle is important for everybody irrespective of ApoE status. Your mom is lucky to have you!

Thank you all for responding with such kindness to my post! My load already feels a little lighter!!

[6357lbs]

Thank you so much, Natalia, Tincup and Lindsey! I am not sure how or if I can respond separately so I will just respond in one post. Natalia, I do know about the Bredesen protocol. I probably should have written a little more but didn't want my initial post to be too long! My husband and I lead fairly healthy lifestyles. We are not overweight. We eat relatively healthy leaning towards lean meats, veggies, fruits, nuts and the occasional whole grains. I make breakfast most days and dinner almost every night so have good control over the food we eat. I make it, he happily eats it. The one thing that worries me the most is that he enjoys drinking. We have cut way back since our earlier married life. I hardly drink at all anymore. He drinks 2-3 drinks two or three times a month. So, it isn't too much but I know even any alcohol is not good particularly for a 4/4. He gets good cardio workouts and strength training about 5x weekly. We are both retired so stress levels are low. He is in his 50's and I am in my 60's. I would say at this point his memory is better than mine! I am a 2/3 by the way. He reads voraciously which I know is good for his brain. I really appreciate the links you included in your post. I might not post much here but will be reading and learning. I follow Rhonda Patrick, Peter Attia and use Ulta Labs or Life Extension to do our blood work. His homocysteine is 9.9 and his CRP is .3 so those numbers are decent. Right now I am having him take even more Omega-3s using his heart health as the reason trying to get his cardiac numbers in a better place.

Tincup, you give me hope that living with a healthy lifestyle can actually make a difference. That is what I am banking on! I have always been into taking care of my health especially as I have gotten older and fortunately my husband cares about his health, too. I know it helps you and your wife to have each other's support! I am really glad you are both doing well!

Lindsey, A pickle is a great way to put it! I do feel like we are already on a very healthy path. Fortunately, his health is important to him. I do mention brain health to him but since his dad was diagnosed with "vascular dementia" he just doesn't seem worried about it. At least not that we have talked about. Maybe I should bring it up in a conversation without mentioning the ApoE factor. I totally agree living a healthy lifestyle is important for everybody irrespective of ApoE status. Your mom is lucky to have you!

Thank you all for responding with such kindness to my post! My load already feels a little lighter!!

[NF52]

Hi all! I am in serious need of some support and guidance. My husband is 4/4 but doesn't know it..I have lost sleep many nights trying to decide whether to tell him or not and worrying about what the future might hold for us....We have a great relationship and marriage so it feels a little underhanded of me not to be direct and discuss it with him....Is there anybody out there who has a similiar situation to mine? I haven't told a soul about this so have had no one to talk to. Thank you for reading!!

Welcome,

As another wife in a "great relationship and marriage", I'm the one with ApoE 4/4 and doing great at the ripe old age of 71, while my husband is ApoE 3/3. But I did choose for several years to keep this news from our adult children, who are all bright, healthy, active and wonderful--and also all ApoE 3/4. When I finally told my daughter that not only was I ApoE 4/4, but was in a clinical trial for cognitively healthy people with positive amyloid PET scans, her reaction was "That's great! I know you like to be actively engaged on projects and I already figured I was at risk because both grandmothers had dementia in their 80's." Same for our two sons.

I waited about 5 years to tell my 73 year old sister, who is also smart, skis, sings in a choir and looks 15 years younger. She was also supportive and said "I know I'd go down too many rabbit holes, so I'm not going to find out." (If our parents were ApoE 3/4, she has a 25% chance of also having ApoE 4/4, 25% chance of ApoE 3/3 and 50% chance of ApoE 3/4.)

So my view over the last 9 years of knowing this is that we should listen to what people say, and also what we know or suspect about their reactions to upsetting news. IMHO, it's okay to choose to not share what is your husband's decision not to know, since maybe on his own he would never have had 23&me's Health report.

One action you could take to is bring up articles about the changing view of dementia. This could be very non-threatening if you share what recent research says may be the most important factor for ApoE 4 risk reduction, but is great for everyone: exercise.

You have a great idea with focusing on heart health! Given his family history, he may be very open to hearing an axiom I have heard from multiple researchers: What's good for the heart is good for the brain."

Regarding the influence of physical exercise on cognitive function in APOE ε4 allele carriers, the data trend shows that the carriers of allele ε4 for APOE gene were more responsive to the beneficial effects of physical exercise on cognitive function compared with non-carriers.

Interaction between physical exercise and APOE gene polymorphism on cognitive function in older people`

I'm going to also comment on with the question you didn't ask: "What do I do with the worry that keeps me up at night about our future together?" Because of course it's naturally not just your husband who views Alzheimer's or any kin of "dementia" as the worst outcome possible and pictures the most severe version of that. But we do that with images from our family members before us, yet they lived when medicine had no reliable ways of studying HOW diseases arose in healthy people and HOW to reduce the risk of those diseases.
So we feel powerless in the face of an uncertain risk that seems looming.

So the first story in our heads we have to re-write is the one our parents and grandparents inadvertently handed down, and that may be one you CAN talk to your husband about. You might be able to say: "I've been lying awake some nights worrying about our future if one of us developed memory issues, and I found some interesting information about how scientists think we could reduce the risk of ANY kind of dementia by 40% just by lifestyle factors. Can we talk about my fears and what we can do together to keep our brains and hearts healthy?" And then share this, or something like this, maybe. And tell yourself you've been a wonderful wife in bearing this load, but it's time to gently put it down, maybe without putting it on him.

How much all-cause dementia could be prevented in the United States? In the July 6 JAMA Open, researchers led by Mark Lee, University of Minnesota, Minneapolis.[using "health surveys among Americans ages 25 to 95 who took part in four large observational cohorts: the American Community Survey; the National Health and Nutrition Examination Survey; the National Health Interview Survey; and the National Social Life, Health, and Aging Project'] attributed 41 percent of dementia cases to 12 modifiable lifestyle factors. Obesity, high blood pressure, and lack of exercise accounted for the lion’s share. This estimate is on par with a Lancet Commission report linking 40 percent of dementia cases worldwide to the same 12 risk factors: physical inactivity, excess alcohol consumption, obesity, smoking, hypertension, diabetes, depression, traumatic brain injury, hearing loss, few years of education, social isolation, and air pollution.

In the U.S., 40 Percent of All-Cause Dementia Is Preventable

Warmly,
Nancy

[6357lbs]

Dear Nancy! Thank you so much for your incredibly encouraging words! I can't tell you how much better I feel at this moment. You have truly given me some very good points to ponder. I like your idea to bring him into the fold without being specific. He is and has always been very good at listening to my suggestions about healthy lifestyle (particulary supplements) as long as I show him the scientific evidence to back it up. Of the 12 risk factors in the study you quoted the only one I would remotely worry about is the drinking and his is not excessive. I wish you continued health and happiness!