Siblings

[Stavia]

Exactly Searcher. Beautifully said.

I will quote again what my smart younger son said to me when I eventually told him my status (and his), bewailing my fate, wringing my hands in anguish.
He put his head on one side, and said very calmly- "So, you have a gene that means you should live healthy to be healthy. How is this different to everyone else?"
Bingo.
I immediately calmed the &$#@ down.

Sent from my SM-G930F using Tapatalk

[TheBrain]

Liberty, I understand you dilemma. I have three sisters. The oldest has undiagnosed and untreated bipolar disorder. She decided years ago to not have contact with me and my other sisters. I haven’t told her about my 4/4 status.

I told my other two sisters about my status. One has never wanted to know her status and doesn’t appreciate me saying a word about anything I’m doing or dealing with respect to my brain health. So I have to shut up around her. Meanwhile, she has terrible hot flashes and night sweats. She’s been depressed for a long time and has become overweight. I wonder about her glycemic control and her lipids. She drinks two large glasses of wine every night.

My other sister wasn’t interested in getting tested until recently. She had a scary health issue crop up last year, with getting a 3-inch blood clot in an artery in her groin, requiring invasive surgery and lifetime use of a blood thinner (which is currently dangerous, as it doesn’t have an “antidote” if she would be in, say, a car accident and have a head injury; she would bleed to death.)

She’s had extensive testing of her heart and all appears absolutely fine with no afib showing up after a month of continuous monitoring (afib could throw a blood clot). She might have the same autoimmune disease that two of her children have (lupus anticoagulant), which could cause such a blood clot. However, testing is negative so far, but that is common with taking blood thinners.

When her cardiologist said he wanted to put her on a statin, despite her excellent lipids (based on the basic lipid panel), I felt I had to speak up about the risk of statins for people with E4. Some E4s do benefit from taking a statin, but they don’t start off with a total cholesterol below 200, like my sister. And certain statins are better than others for E4s.

All this motivated my sister to find out her ApoE status. We are awaiting her 23andme results.

Dealing with siblings is very tricky. You don’t want to risk alienating them. But maybe your sister will be motivated at some point to find out her ApoE status, especially if her symptoms worsen enough to scare her. However, some people simply aren’t willing to make the necessary lifestyle changes. I also believe some people simply don’t believe there’s anything you can do about it anyway, despite the growing evidence to the contrary.

[TheresaB]

The only things a 2/2 might venture to do differently are drink more alcohol and eat more saturated fat

2/2s have to be mindful of hypertriglyceridemia

[Searcher]

Yes, more means simply more than zero, or more than is advisable for people with 4/4. Even for people with 2/2, alcohol and saturated fat are damaging beyond a point.

[laurie]

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.

I am trying to find the March 2017 meta-analysis could you give me the reference. I did find this research but it isn't a meta-analysis. Thanks
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts
Jing Qian,

Published: March 21, 2017
•

[NF52]

I am trying to find the March 2017 meta-analysis could you give me the reference. I did find this research but it isn't a meta-analysis. Thanks APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

Hi Laurie,
You did find the PLOS article I was referring to; here is the URL for anyone interested. http://journals.plos.org/plosmedicine/a ... ed.1002254 I may be using "meta-analysis" in a less precise way than some researchers. But the title of the article refers to "an analysis of four cohorts" from large longitudinal studies (Framingham Heart Study, Rotterdam Study, National Alzheimer's Coordinating Center and Sacramento Area Latino Study on Aging). The purpose of the combined and enhanced analyses of a subset of these multiple studies was to develop improved estimates of the incidence of MCI and AD across 5 year intervals for healthy ApoE 4/4 individuals ages 60-75. That information is given to individuals interested in enrolling in the Generations I and II studies. The article does what I enjoy in a meta-analysis: it offers insights into possible explanations for discrepancies among the results of different studies, provides information on the level of confidence of estimates for Alzheimer's risk (relatively high confidence, using a much wider range of risk than many popular articles suggest) and highlights areas in which further research will prove helpful in refining estimates.

So it seems to meet the purpose suggested by Wikipedia:

Conceptually, a meta-analysis uses a statistical approach to combine the results from multiple studies in an effort to increase power (over individual studies), improve estimates of the size of the effect and/or to resolve uncertainty when reports disagree.

https://en.wikipedia.org/wiki/Meta-analysis

[laurie]

I am trying to find the March 2017 meta-analysis could you give me the reference. I did find this research but it isn't a meta-analysis. Thanks APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

Hi Laurie,
You did find the PLOS article I was referring to; here is the URL for anyone interested. http://journals.plos.org/plosmedicine/a ... ed.1002254 I may be using "meta-analysis" in a less precise way than some researchers. But the title of the article refers to "an analysis of four cohorts" from large longitudinal studies (Framingham Heart Study, Rotterdam Study, National Alzheimer's Coordinating Center and Sacramento Area Latino Study on Aging). The purpose of the combined and enhanced analyses of a subset of these multiple studies was to develop improved estimates of the incidence of MCI and AD across 5 year intervals for healthy ApoE 4/4 individuals ages 60-75. That information is given to individuals interested in enrolling in the Generations I and II studies. The article does what I enjoy in a meta-analysis: it offers insights into possible explanations for discrepancies among the results of different studies, provides information on the level of confidence of estimates for Alzheimer's risk (relatively high confidence, using a much wider range of risk than many popular articles suggest) and highlights areas in which further research will prove helpful in refining estimates.

So it seems to meet the purpose suggested by Wikipedia:

Conceptually, a meta-analysis uses a statistical approach to combine the results from multiple studies in an effort to increase power (over individual studies), improve estimates of the size of the effect and/or to resolve uncertainty when reports disagree.

https://en.wikipedia.org/wiki/Meta-analysis

Thanks so much for the information. I was actually surprised by the 30 to 60% risk and wanted to learn more about why. Thanks for clarifying meta-analysis.

[NF52]

Glad to be helpful Laurie!

By the way, it took me forever to discover that a way to easily be sure the author of a previous post is notified by email of a reply/question directed at her/him, was to highlight (with the cursor) a short section, or the key question, of the post and then click the big ["] icon in the upper right hand corner of the post. Clicking on just one section, and then the quotation mark, keeps the whole (and in my case usually overly-lengthy post) from being repeated. Here's how I did it with your reply to me:

I was actually surprised by the 30 to 60% risk and wanted to learn more about why.

Keep those probing questions coming!

[Sara]

Hi Liberty, My heart goes out to you regarding your sister! I have a close family member diagnosed with early AD and she is willing to make some changes and not others. A never-exerciser, she will now wear a fitbit, walk around the porch and accumulate steps - but she does so smoking a cigarette. And she went the route with hormone therapy and supplements but her nutrition is terrible. An extra frustration is that every doctor with one exception has told her to eat what she wants and her primary care doctor even told her not to worry about her smoking. The one doctor that did speak directly to her is a functional medicine doctor but she didn't want to continue seeing that doctor. So this has been a great lesson in meeting people where they are, acceptance and unconditional love. Reminds me of the serenity prayer that I was taught as a child.

[laurie]

NF52 said Clicking on just one section, and then the quotation mark, keeps the whole

Thanks for the tip! I got it sort of