Siblings

[Liberty]

Hi there my user name is Liberty I am 56 years old and am APOE 4/4. I am very happy to find this group and be able to share and learn from others. Can anyone give me some insight from their experiences with family and siblings. I am concerned about my sister who is two years older than I am. She was in a car accident some years ago, and had a head injury, and must carry at least one APOE 4 gene. I have noticed that her memory is not what it was and that she is repeating herself quite a bit. Our mother is in a care home with full blown alzheimers. Her mother died from the condition. I have told her I have the gene but she seems not to want to know about it or what she could do diet wise. It is upsetting to see the future unfolding with no ability to change it. Anyone else? Thank You!

[NF52]

I have told her I have the gene but she seems not to want to know about it or what she could do diet wise. It is upsetting to see the future unfolding with no ability to change it.

Welcome Liberty,
What a great name you've selected! It's a sign of your concern as a brother that you are worrying about your sister.
I'm sure you'll get lots of helpful advice over the next day or more, but will offer my perspective as a 65 year old 4/4, with two older sisters and a younger brother. My parents were at least a 3/4, so it's possible that my siblings range from 3/3 to 3/4 to 4/4. All seem cognitively okay now. Since our mother and 4 of her sisters died with (if not from) dementia in their 80's to early 90's, and our father died of cardiac arrest at age 67, we have some pesky genes on both sides.
None of my siblings,to my knowledge, know of their ApoE status and I have decided, after much thought, to say nothing to them. Two of them are very active, healthy weight, engaged in multiple challenging projects and follow most of Dr. Bredesen's basic advice without having read his work. The oldest has had serious life-long mental health issues and has repeatedly refused all mental health and medical advice, currently living as a severe hoarder. But she has chosen that life and when I talk with her, she expresses that she is happy. It's not up to me to confront her with the choices she has made, nor is doing so likely to have any effect other than jeopardizing one of the few relationships she has left.
As many others on this site will attest, there is no "un-knowing" that you have a significantly increased risk of mild cognitive impairment or dementia by age 85. (A March 2017 meta-analysis puts the risk for a 4/4 at between 30-60%, noting that lots of other factors make the range so wide.) Even if our risk is the same, my healthy siblings are entitled to seek out, or not seek out, the readily available information on their risk.
It's possible that the memory changes you see in your older sister are due more to temporary effects of the drop in estrogen after menopause, and not early warning signs of cognitive impairment. It's also possible that they are linked somewhat to her car accident, although a "head injury" does not necessarily mean a permanent "brain injury."
You could share with her a copy of Dr. Bredesen's book, with just the encouragement that his "plugging the holes in the roof" approach seems like an interesting way to approach being in your 50's and 60's. I guarantee you that she knows her diet isn't as healthy as yours, but maybe it also is her way of coping with some of the stresses she feels in her life. Be "present" for her and let her know you love her. She will thank you for that for the rest of her days.

[Jan]

I like NF52's response to you, Liberty, and concur that change has to come from within, when the individual is ready. Meantime, if you concentrate on improving your own health absolutely as much as possible, she may eventually want to achieve some of the same changes she sees in you. How caring you are for your sibling.

[Liberty]

Hello, thank you for your responses, I will look to getting a copy of the book myself. I am a she by the way .... but Liberty is good for all!
Your advise about being the best you can be yourself and just be present for others are wise words indeed. Thank you again and for sharing about your family.

[Jan]

You're more than welcome, Liberty, we are delighted to have you here. Let me also point you toward our Primer It was written by physician member Stavia, and contains a huge amount of information that you probably will find useful immediately. (And later on, as most of us keep referring to the Primer often). Our site search function is the three stacked squares, to the right of your name (top right of page). The complete files of the site are voluminous, there's probably a thread on just about any subject you can think of. But don't let that stop you from asking your urgent questions. You've found a very active and supportive community here.

[Jan]

You're more than welcome, Liberty, we are delighted to have you here. Let me also point you toward our Primer It was written by physician member Stavia, and contains a huge amount of information that you probably will find useful immediately. (And later on, as most of us keep referring to the Primer often). Our site search function is the three stacked squares, to the right of your name (top right of page). The complete files of the site are voluminous, there's probably a thread on just about any subject you can think of. But don't let that stop you from asking your urgent questions. You've found a very active and supportive community here.

[Anna]

Hi Liberty. I too am 4/4, and my mom is 3/4. I have a sister who knows both of these results but does not want to know hers. Knowing how much it upset me to learn the extent of my risk, she would rather take the approach that chances are she has at least one copy while hanging onto the hope that she doesn't have any copies. All three of us are doing what we can to mitigate our risk. We have elected not to tell my dad. He already won't make any of the lifestyle changes that would help with some other health conditions (I have REALLY tried, but he just gets angry). I've decided it's just not worth upsetting him, especially when he seems quite happy with his life. I don't have advice, but I hope this helps!

[TheresaB]

I have told her I have the gene but she seems not to want to know about it or what she could do diet wise. It is upsetting to see the future unfolding with no ability to change it. Anyone else?

Anyone else? Yes!

I have two older sisters and two older brothers. When I learned my 4/4 status a few years ago, I told them about it. I informed them that this meant they each had a very high percentage of having at least one 4. I also told them of the health concerns this entails. But little to no interest.

Over the years I’ve dropped info here and there hoping they’d express a desire to learn more, but thus far largely nothing. I have one sibling who was somewhat interested, but seemed to have too many other things going on to be concerned. Maybe if we had more family history of Alzheimer’s there would be more urgency.

I also have friends with metabolic syndrome issues and/or family history of dementia that I am very concerned about. They know about my dietary and lifestyle changes and the genetics that motivated me to change, but they also largely seem to be uninterested.

My husband and I fast altogether or bring our own food to get togethers, weddings, or when invited over to a friend’s home for dinner. We talk about things we’re doing and what we have been reading about, but we can’t force others to possess a desire they do not want to have. I also don’t want to come across as an obnoxious zealot and completely alienate anyone. I feel I can only be responsible for my own health.

t is hard to witness others negatively impact their health. It’s a sad situation, but you are not alone.

[Stavia]

Hi Liberty. I am 4/4 as well. Both our parents, my mum's sister, her mum, died with dementia. My sisters have chosen not to test but to follow the main strategies. They are doing the excercise, prioritising sleep and stress management, keeping good glycaemic control, intermittent fasting, mild ketosis, selected supplements such as optimising D3 and homocysteine.
This way they are doing their best and living without the fear of being a 4/4.

30% of Alzheimer's is non E4 related. I believe everyone should be doing this regardless. Our main strategies are currently everyone's best bet to reduce many chronic diseases.

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[Searcher]

I believe everyone should be doing this regardless. Our main strategies are currently everyone's best bet to reduce many chronic diseases.

Yes. The risk of eventual death is 100% for everyone. How we choose to live until we drop makes all the difference.

I keep trying to find what someone with 4/4 needs to do differently from someone without any APOE4, in order to create a more healthy, satisfying and joyful life.

So far, I've found - avoid saturated fat and alcohol. There may well be other differences, based on quantitative comparisons between various APOE strata. I keep looking and learning. But saturated fat and alcohol are not necessary for a great life.

Many other tweaks, such as arranging financial affairs for a smooth takeover or care, are sensible for everyone. Everyone is at risk of premature disability from various causes.

I believe that the biggest challenge in life is to allocate time in such a way as to cultivate meaning and joy. That's the most powerful way to convert harmful stress into eustress, fear into calm presence in each moment, and struggle into "flow".

In biological terms, that's probably the most powerful way to control cortisol levels. Most protocols which focus strongly on molecules seem to leave a big hole here. High cortisol levels can undo the benefits of all the other tweaks.

I've seen wonderful transformations among family and friends who seek my advice, without knowing their APOE status. Anyone can learn to live in a brain-friendly way that creates more health, fulfillment and joy. Even someone paralyzed from the neck down, as one such person happens to be.

So, yes, I believe everyone should live as if they have 4/4. The only things a 2/2 might venture to do differently are drink more alcohol and eat more saturated fat (plus any other differentiating factors uncovered by quantitative research). There's more than enough joy available outside of alcohol and saturated fat.