ApoE 4/4: Grateful, but need some hope

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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elizabethdr
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ApoE 4/4: Grateful, but need some hope

Post by elizabethdr »

Firstly, I want to thank this community for providing invaluable information. I have gleaned so much from you all over the years. I am ApoE 4/4 and I first learned of my status almost 4 years ago just after turning 40 and just before my father was diagnosed with Alzheimer’s at age 70. This site has provided me with much hope during a very difficult season - thank you!

I learned my status through a naturopathic doctor, using Boston Heart Health. I did not know that my ApoE status was being tested and so it came as a shock. I also learned that I am homozygous for one of the MTHFR mutations. I have had lots of anxiety over my status especially as I have watched my dad decline. It was a very difficult process to get him diagnosed because he was still working as a professor when he first showed symptoms and was misdiagnosed with depression and then FTD. It took over a year to get an accurate Alzheimer’s diagnosis from a specialist after a lumbar puncture and CAT scan. My father had very little health issues until AD. However, he did not eat a particularly healthy diet (he likes fast food), he didn’t regularly exercise, he had undiagnosed mild sleep apnea until age 71, and he lived with a lot of stress. But, he was highly educated and very involved with his community. He now lives in a memory care facility.

I have a family history of dementia on both sides of my family. My paternal grandmother was diagnosed with dementia (not AD) after a brain aneurysm in her late 60s; there is no other dementia on my father’s side and he is the first known family member to be diagnosed with Alzheimer’s. However, my maternal grandmother and maternal great aunt were both diagnosed with AD. My maternal grandmother was diagnosed in her early 70s after some serious medication issues sent her to the hospital and she died within 1-2 years; my maternal great aunt died of AD at 89. I should also add that my mom’s cousin (my second cousin) died of AD at age 60. This strong family history really concerns me especially because my mom is showing signs of cognitive decline. She has been so overwhelmed by grief and anxiety since my father was diagnosed and it has taken a big toll on her health - one doctor said she appears to be in fight/flight 100% of the time! She had a normal MRI (normal for her age of 72) last year, but there is still considerable concern with her memory (family and friends have reached out to express their concerns about her memory issues). I am taking her to the doctor again this week for another referral to a neurologist.

I have integrated so many of the lifestyle changes since finding this group. My labs are pretty good at this point! I mostly follow a keto-flex 12/3 diet (I actually fast more like 14 hours) and I exercise. I was tested for sleep apnea and my oxygenation is great when sleeping on my side (which is my normal pattern), but I have some mild apnea when on my back (rare position for me and I now avoid entirely). But I experience a lot of anxiety, in part because of my fear about AD - both for myself and my mom. I do find hope from all of the incredible stories of people who have reversed their decline, but I sometimes still feel doomed since my mom’s cognition is now declining. I know that being ApoE 4/4 and having a strong family history makes me higher risk, especially for an earlier diagnosis. I have read stories of 4/4 folks who had both parents with AD, and they were diagnosed in their 50s (this was the case with Lauren Miller Rogen’s 4/4 mother as discussed on Dr. Peter Attia’s podcast with Dr. Richard Isaacson).

I guess I need a little encouragement that my parent’s fate does not have to be my own (I realize I am assuming my mother will be diagnosed with AD at some point - it just seems inevitable). I have offered a lot of support to my mom the last 4 years to help her keep her brain healthy, but her grief and anxiety have just been so overwhelming. It has been difficult for her to change her eating habits (she loves sugar!) and to exercise more. I love her very much, but I also respect her agency and independence and I know that I can’t control her lifestyle! It has been really hard to find some hope about my ApoE 4/4 status while also watching the decline of both my parents. Can anyone share hopeful stories of 4/4 people who had both parents diagnosed with AD?
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Re: ApoE 4/4: Grateful, but need some hope

Post by JeniO »

elizabethdr wrote: Thu Dec 16, 2021 12:02 pm Firstly, I want to thank this community for providing invaluable information. I have gleaned so much from you all over the years. I am ApoE 4/4 and I first learned of my status almost 4 years ago just after turning 40 and just before my father was diagnosed with Alzheimer’s at age 70. This site has provided me with much hope during a very difficult season - thank you!

I learned my status through a naturopathic doctor, using Boston Heart Health. I did not know that my ApoE status was being tested and so it came as a shock. I also learned that I am homozygous for one of the MTHFR mutations. I have had lots of anxiety over my status especially as I have watched my dad decline. It was a very difficult process to get him diagnosed because he was still working as a professor when he first showed symptoms and was misdiagnosed with depression and then FTD. It took over a year to get an accurate Alzheimer’s diagnosis from a specialist after a lumbar puncture and CAT scan. My father had very little health issues until AD. However, he did not eat a particularly healthy diet (he likes fast food), he didn’t regularly exercise, he had undiagnosed mild sleep apnea until age 71, and he lived with a lot of stress. But, he was highly educated and very involved with his community. He now lives in a memory care facility.

I have a family history of dementia on both sides of my family. My paternal grandmother was diagnosed with dementia (not AD) after a brain aneurysm in her late 60s; there is no other dementia on my father’s side and he is the first known family member to be diagnosed with Alzheimer’s. However, my maternal grandmother and maternal great aunt were both diagnosed with AD. My maternal grandmother was diagnosed in her early 70s after some serious medication issues sent her to the hospital and she died within 1-2 years; my maternal great aunt died of AD at 89. I should also add that my mom’s cousin (my second cousin) died of AD at age 60. This strong family history really concerns me especially because my mom is showing signs of cognitive decline. She has been so overwhelmed by grief and anxiety since my father was diagnosed and it has taken a big toll on her health - one doctor said she appears to be in fight/flight 100% of the time! She had a normal MRI (normal for her age of 72) last year, but there is still considerable concern with her memory (family and friends have reached out to express their concerns about her memory issues). I am taking her to the doctor again this week for another referral to a neurologist.

I have integrated so many of the lifestyle changes since finding this group. My labs are pretty good at this point! I mostly follow a keto-flex 12/3 diet (I actually fast more like 14 hours) and I exercise. I was tested for sleep apnea and my oxygenation is great when sleeping on my side (which is my normal pattern), but I have some mild apnea when on my back (rare position for me and I now avoid entirely). But I experience a lot of anxiety, in part because of my fear about AD - both for myself and my mom. I do find hope from all of the incredible stories of people who have reversed their decline, but I sometimes still feel doomed since my mom’s cognition is now declining. I know that being ApoE 4/4 and having a strong family history makes me higher risk, especially for an earlier diagnosis. I have read stories of 4/4 folks who had both parents with AD, and they were diagnosed in their 50s (this was the case with Lauren Miller Rogen’s 4/4 mother as discussed on Dr. Peter Attia’s podcast with Dr. Richard Isaacson).

I guess I need a little encouragement that my parent’s fate does not have to be my own (I realize I am assuming my mother will be diagnosed with AD at some point - it just seems inevitable). I have offered a lot of support to my mom the last 4 years to help her keep her brain healthy, but her grief and anxiety have just been so overwhelming. It has been difficult for her to change her eating habits (she loves sugar!) and to exercise more. I love her very much, but I also respect her agency and independence and I know that I can’t control her lifestyle! It has been really hard to find some hope about my ApoE 4/4 status while also watching the decline of both my parents. Can anyone share hopeful stories of 4/4 people who had both parents diagnosed with AD?
Hello Elizabeth! Welcome to APOE4.info. We're so glad to see you in the forum!

Thank you so much for taking the time to share your story with us. Your love and support for your parents are so evident. What a blessing you are to them!

I hear that you care deeply about your parent's wellbeing as well as your own. I do hope that you find encouragement and reassurance for your journey here at APOE.info. You have already worked to learn much about AD prevention and are taking steps to ensure that your genes are not your destiny. Your hope, curiosity, bravery, and perseverance are inspiring.

In case you haven't found them already, here is a link to the primer and our How to Guide. They might be helpful to you as you navigate the site and interact with other members.

As you may have already seen, there is a helpful search tool available in the top right-hand corner of the site that you can use by clicking the three dots next to your log-in id. You can use that to search for topics in the various forums.

We are glad you found us and hope that this site will continue to be useful to you in your journey.
Be well,
Jeni
Functional Medicine Certified Health Coach
National Board Certified Health & Wellness Coach
"Don't judge each day by the harvest that you reap but by the seeds that you plant." - Robert Louis Stevenson
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Re: ApoE 4/4: Grateful, but need some hope

Post by floramaria »

elizabethdr wrote: Thu Dec 16, 2021 12:02 pm
I have integrated so many of the lifestyle changes since finding this group. My labs are pretty good at this point! I mostly follow a keto-flex 12/3 diet (I actually fast more like 14 hours) and I exercise. I was tested for sleep apnea and my oxygenation is great when sleeping on my side (which is my normal pattern), but I have some mild apnea when on my back (rare position for me and I now avoid entirely).
I guess I need a little encouragement that my parent’s fate does not have to be my own (I realize I am assuming my mother will be diagnosed with AD at some point - it just seems inevitable). I have offered a lot of support to my mom the last 4 years to help her keep her brain healthy, but her grief and anxiety have just been so overwhelming. It has been difficult for her to change her eating habits (she loves sugar!) and to exercise more. I love her very much, but I also respect her agency and independence and I know that I can’t control her lifestyle! It has been really hard to find some hope about my ApoE 4/4 status while also watching the decline of both my parents. Can anyone share hopeful stories of 4/4 people who had both parents diagnosed with AD?
Hi Elizabethdr, you asked for assurance that your parents’ fate does not have to be your own, and with absolute certainty I can say “Yes, that is true.” Genetics are not destiny, only predispositions. Having already made changes that reduce your risks associated with ApoE4 alleles you are off to a great start. You also have time on your side. The research into possible treatments is very promising. And we already have powerful prevention strategies which you are using to improve your long term health. These are things that, sadly, your parents were not able to take advantage of.
One of the things that really touched me in your post was your saying that you respect your mother’s agency and independence. Several years ago, when one of my dearest friends started to develop symptoms of AD, I was so excited to share what I was learning about AD prevention. I was filled with hope and enthusiasm. She, like me, had a long maternal line of AD. But she told me that she and her husband had decided that they were going to “let things take their course”, as they put it. That was incomprehensible to me. How could she not want to try to prevent the disease she had seen close up in her family?

But as much as I would have loved to see her change patterns that I knew were linked to increasing her risks of developing fullblown AD, I also loved and respected her, and had to come to that same conclusion you came to with your mom. She had her life to live and the choices were hers to make.

You also have your life to live and your choices to make. You can make excellent choices. You can choose the healthiest options for yourself based on the latest research. There are a lot of people on this website who are a lot older than you are and got a lot later start on their healthier lifestyles, and who are still doing great.
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IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
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NF52
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Re: ApoE 4/4: Grateful, but need some hope

Post by NF52 »

elizabethdr wrote: Thu Dec 16, 2021 12:02 pm...I am ApoE 4/4 and I first learned of my status almost 4 years ago just after turning 40 and just before my father was diagnosed with Alzheimer’s at age 70...
I guess I need a little encouragement that my parent’s fate does not have to be my own (I realize I am assuming my mother will be diagnosed with AD at some point - it just seems inevitable).... Can anyone share hopeful stories of 4/4 people who had both parents diagnosed with AD?
I hope it's okay if I call you Elizabeth based on your user name (although I once did that with someone else and she later mentioned that it was her beagle's name!) I'm five years younger than your dad, three years than your mom and I have ApoE 4/4 and family history similar to yours. My dad died of cardiac arrest at the age of 67 (heart disease is also an ApoE 4 risk)--although his identical twin brother had neither heart disease or AD and died of colon cancer at age 74. My mother and 4 of her sisters died with dementia--probably a mix of Alzheimer's and vascular--but only one developed symptoms before the age of 80.

So I think there is different way to view your risk through your family history. I took the liberty of focusing on parts of your family's story and hope you don't mind my sharing part of mine.

Your dad's first diagnosis with depression or frontal temporal dementia (FTD) suggests that he was having personality or behavior changes, not memory or language difficulty, at age 70. That suggests he has an unusual form of Alzheimer's called "behavioral variant Alzheimer's (bvAD). Here's a link to a Dec. 2020 article, with a brief excerpt:
Increasing attention is being directed to atypical clinical presentations of Alzheimer’s disease. The behavioural/dysexecutive variant of Alzheimer’s disease is a rare clinical syndrome presenting with behavioural changes, apathy and executive dysfunction, similar to frontotemporal dementia...The association between frontal tau pathology and behavioural / dysexecutive clinical presentations provides...support for a “frontal variant” of Alzheimer’s disease

Frontal tau pathology underlies behavioural / dysexecutive clinical presentations of Alzheimer’s disease

Only in the last few years has it been possible to use Tau-PET scans to see tau in the frontal lobe. It seems to damage neurons that help us plan, feel and act as "who we are". These changes are also seen in people who have traumatic brain injuries to the frontal lobes, as well as those with FTD. Behavioral changes can be far more difficult for loved ones to understand and handle than memory changes. The person can be "like himself" and then irritable, apathetic, or unpredictable. As a professor, even minor changes in those skills may have led to a diagnosis years earlier than if he had similar injury to the language or memory areas of the brain, since smart people with "cognitive reserve" can find workarounds for thinking skills. Just because your dad may have bvAD does not mean you will. He may have had early mild brain injuries, especially if he played sports in high school or college, that caused subtle damage that accelerated tau development and almost certainly had exposure to levels of air, water and food toxins for decades that you have not had. Lots of cutting-edge research is being done on both anti-tau therapies for prevention of AD and on treatments for improvement of behavioral and neuropsychiatric symptoms--I know because I sit on some grant review panels that look at this kind of research.

Your paternal GM was probably born about 1920 or so, given your dad's age, making her the same generation as my mom and her 5 sisters. Like them, I suspect she never went to a cardiologist, never had aggressive treatment of high blood pressure or never had a check of her carotid artery. I was raised hearing that "your age plus 60 is a good blood pressure" so my mom's doctor didn't worry much when hers was always about 160 after menopause--even though her mother died of a stroke at age 45. I've known several people who had aneurysms; all were much younger and some were kids. An aneurysm comes from a weak cerebral blood vessel. That is much less likely to happen if blood pressure is kept well within normal ranges, if blockages in the carotid artery or coronary arteries are identified and treated.

Your maternal grandmother had "serious medical issues" in her early 60's. If you can find some relatives who remember what those were, you may find they included type 2 diabetes, heart disease, high blood pressure or other conditions that we can now screen for, diagnose and treat. Her sister may have died with dementia at age 89, but almost everyone who dies as the "oldest old" (> 85) has both "senescent cells" (normal aging cell loss) plus evidence of amyloid, tau and vascular disease. Most of those people were actually quite healthy until their 80's and had slower loss of cognition. (My own ApoE 4 mother died at 86 and three sisters died between ages 87 and 90 with moderate dementia, with language and emotions intact. Most lived t home with some help until just months before they died.) I have lots of 2nd cousins on 23& me and none of them share more than 1-2% of their DNA with me. So that cousin's diagnosis of AD should not be a factor for you!

So here's some good news: A analysis of population-based data of people in MY generation (age 60 and above) found that the risk of AD is much lower than it would appear just by lookin at who is seen at memory centers. This is their peer-reviewed "discussion" take-away of the for ApoE 4/4 for a diagnosis of either Mild Cognitive Impairment or AD up to the age of 85:
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)... The regression models are insufficiently precise for “personalized medicine” incidence estimates based on sex, education, or other factors...On the basis of our regression findings...for APOE-e4/e4 homozygotes...disclosing a relative risk of about 3-fold compared to the general population would make sense.
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

In addition to the great advice offered in the PRIMER and elsewhere on this forum, here are some steps you might consider for your own "personalized" risk assessment:
  • Talk to your ob-gyn about perimenopause and heart health so you can decide how to best support your heart and brain for the next 44+ years
  • Exercise enough to enjoy it! It may be one of the most important self-help tools we have--and doesn't have to involve marathons, Cross-Fit or mixed martial arts.
  • Gently suggest that your mom see her doctor with you to explain how difficult life is since your's dad's diagnosis and rule out clinical anxiety, depression or "complicated grief" (prolonged grief). My mother had the same prolonged symptoms in her mid-60's after my dad's sudden death and I wish now we had acted to get her some help. Grief and anxiety can mimic cognitive decline (think of how you perform on a test when anxious); they are treatable with medications that are safe for seniors. Cognitive behavioral therapy with someone familiar with grief may be available through your local Alzheimer's Association or Council on Aging. Involvement in a new activity or old favorite with women her age may help. Reassuring her that her husband is "safe and calm" may help and that nothing she did caused his disease.
  • Consider reading some current writings on being stoic--which I think of as "I do not control the final destination of this journey, yet I can plan well, observe the many moments of wonder and make deep friendships all along the way, living a life of purpose."
Hugs from another 4/4 who believes we will write happier chapters of our families' stories.
4/4 and still an optimist!
elizabethdr
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Re: ApoE 4/4: Grateful, but need some hope

Post by elizabethdr »

floramaria wrote: Thu Dec 16, 2021 8:44 pm
elizabethdr wrote: Thu Dec 16, 2021 12:02 pm
I have integrated so many of the lifestyle changes since finding this group. My labs are pretty good at this point! I mostly follow a keto-flex 12/3 diet (I actually fast more like 14 hours) and I exercise. I was tested for sleep apnea and my oxygenation is great when sleeping on my side (which is my normal pattern), but I have some mild apnea when on my back (rare position for me and I now avoid entirely).
I guess I need a little encouragement that my parent’s fate does not have to be my own (I realize I am assuming my mother will be diagnosed with AD at some point - it just seems inevitable). I have offered a lot of support to my mom the last 4 years to help her keep her brain healthy, but her grief and anxiety have just been so overwhelming. It has been difficult for her to change her eating habits (she loves sugar!) and to exercise more. I love her very much, but I also respect her agency and independence and I know that I can’t control her lifestyle! It has been really hard to find some hope about my ApoE 4/4 status while also watching the decline of both my parents. Can anyone share hopeful stories of 4/4 people who had both parents diagnosed with AD?
Hi Elizabethdr, you asked for assurance that your parents’ fate does not have to be your own, and with absolute certainty I can say “Yes, that is true.” Genetics are not destiny, only predispositions. Having already made changes that reduce your risks associated with ApoE4 alleles you are off to a great start. You also have time on your side. The research into possible treatments is very promising. And we already have powerful prevention strategies which you are using to improve your long term health. These are things that, sadly, your parents were not able to take advantage of.
One of the things that really touched me in your post was your saying that you respect your mother’s agency and independence. Several years ago, when one of my dearest friends started to develop symptoms of AD, I was so excited to share what I was learning about AD prevention. I was filled with hope and enthusiasm. She, like me, had a long maternal line of AD. But she told me that she and her husband had decided that they were going to “let things take their course”, as they put it. That was incomprehensible to me. How could she not want to try to prevent the disease she had seen close up in her family?

But as much as I would have loved to see her change patterns that I knew were linked to increasing her risks of developing fullblown AD, I also loved and respected her, and had to come to that same conclusion you came to with your mom. She had her life to live and the choices were hers to make.

You also have your life to live and your choices to make. You can make excellent choices. You can choose the healthiest options for yourself based on the latest research. There are a lot of people on this website who are a lot older than you are and got a lot later start on their healthier lifestyles, and who are still doing great.
Thank you so much for your thoughtful and kind reply. I have read it many times over the holiday break and it has brought me much hope and encouragement. This community is amazing! :)
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Re: ApoE 4/4: Grateful, but need some hope

Post by elizabethdr »

NF52 wrote: Sun Dec 19, 2021 6:44 am
elizabethdr wrote: Thu Dec 16, 2021 12:02 pm...I am ApoE 4/4 and I first learned of my status almost 4 years ago just after turning 40 and just before my father was diagnosed with Alzheimer’s at age 70...
I guess I need a little encouragement that my parent’s fate does not have to be my own (I realize I am assuming my mother will be diagnosed with AD at some point - it just seems inevitable).... Can anyone share hopeful stories of 4/4 people who had both parents diagnosed with AD?
I hope it's okay if I call you Elizabeth based on your user name (although I once did that with someone else and she later mentioned that it was her beagle's name!) I'm five years younger than your dad, three years than your mom and I have ApoE 4/4 and family history similar to yours. My dad died of cardiac arrest at the age of 67 (heart disease is also an ApoE 4 risk)--although his identical twin brother had neither heart disease or AD and died of colon cancer at age 74. My mother and 4 of her sisters died with dementia--probably a mix of Alzheimer's and vascular--but only one developed symptoms before the age of 80.

So I think there is different way to view your risk through your family history. I took the liberty of focusing on parts of your family's story and hope you don't mind my sharing part of mine.

Your dad's first diagnosis with depression or frontal temporal dementia (FTD) suggests that he was having personality or behavior changes, not memory or language difficulty, at age 70. That suggests he has an unusual form of Alzheimer's called "behavioral variant Alzheimer's (bvAD). Here's a link to a Dec. 2020 article, with a brief excerpt:
Increasing attention is being directed to atypical clinical presentations of Alzheimer’s disease. The behavioural/dysexecutive variant of Alzheimer’s disease is a rare clinical syndrome presenting with behavioural changes, apathy and executive dysfunction, similar to frontotemporal dementia...The association between frontal tau pathology and behavioural / dysexecutive clinical presentations provides...support for a “frontal variant” of Alzheimer’s disease

Frontal tau pathology underlies behavioural / dysexecutive clinical presentations of Alzheimer’s disease

Only in the last few years has it been possible to use Tau-PET scans to see tau in the frontal lobe. It seems to damage neurons that help us plan, feel and act as "who we are". These changes are also seen in people who have traumatic brain injuries to the frontal lobes, as well as those with FTD. Behavioral changes can be far more difficult for loved ones to understand and handle than memory changes. The person can be "like himself" and then irritable, apathetic, or unpredictable. As a professor, even minor changes in those skills may have led to a diagnosis years earlier than if he had similar injury to the language or memory areas of the brain, since smart people with "cognitive reserve" can find workarounds for thinking skills. Just because your dad may have bvAD does not mean you will. He may have had early mild brain injuries, especially if he played sports in high school or college, that caused subtle damage that accelerated tau development and almost certainly had exposure to levels of air, water and food toxins for decades that you have not had. Lots of cutting-edge research is being done on both anti-tau therapies for prevention of AD and on treatments for improvement of behavioral and neuropsychiatric symptoms--I know because I sit on some grant review panels that look at this kind of research.

Your paternal GM was probably born about 1920 or so, given your dad's age, making her the same generation as my mom and her 5 sisters. Like them, I suspect she never went to a cardiologist, never had aggressive treatment of high blood pressure or never had a check of her carotid artery. I was raised hearing that "your age plus 60 is a good blood pressure" so my mom's doctor didn't worry much when hers was always about 160 after menopause--even though her mother died of a stroke at age 45. I've known several people who had aneurysms; all were much younger and some were kids. An aneurysm comes from a weak cerebral blood vessel. That is much less likely to happen if blood pressure is kept well within normal ranges, if blockages in the carotid artery or coronary arteries are identified and treated.

Your maternal grandmother had "serious medical issues" in her early 60's. If you can find some relatives who remember what those were, you may find they included type 2 diabetes, heart disease, high blood pressure or other conditions that we can now screen for, diagnose and treat. Her sister may have died with dementia at age 89, but almost everyone who dies as the "oldest old" (> 85) has both "senescent cells" (normal aging cell loss) plus evidence of amyloid, tau and vascular disease. Most of those people were actually quite healthy until their 80's and had slower loss of cognition. (My own ApoE 4 mother died at 86 and three sisters died between ages 87 and 90 with moderate dementia, with language and emotions intact. Most lived t home with some help until just months before they died.) I have lots of 2nd cousins on 23& me and none of them share more than 1-2% of their DNA with me. So that cousin's diagnosis of AD should not be a factor for you!

So here's some good news: A analysis of population-based data of people in MY generation (age 60 and above) found that the risk of AD is much lower than it would appear just by lookin at who is seen at memory centers. This is their peer-reviewed "discussion" take-away of the for ApoE 4/4 for a diagnosis of either Mild Cognitive Impairment or AD up to the age of 85:
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)... The regression models are insufficiently precise for “personalized medicine” incidence estimates based on sex, education, or other factors...On the basis of our regression findings...for APOE-e4/e4 homozygotes...disclosing a relative risk of about 3-fold compared to the general population would make sense.
APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts

In addition to the great advice offered in the PRIMER and elsewhere on this forum, here are some steps you might consider for your own "personalized" risk assessment:
  • Talk to your ob-gyn about perimenopause and heart health so you can decide how to best support your heart and brain for the next 44+ years
  • Exercise enough to enjoy it! It may be one of the most important self-help tools we have--and doesn't have to involve marathons, Cross-Fit or mixed martial arts.
  • Gently suggest that your mom see her doctor with you to explain how difficult life is since your's dad's diagnosis and rule out clinical anxiety, depression or "complicated grief" (prolonged grief). My mother had the same prolonged symptoms in her mid-60's after my dad's sudden death and I wish now we had acted to get her some help. Grief and anxiety can mimic cognitive decline (think of how you perform on a test when anxious); they are treatable with medications that are safe for seniors. Cognitive behavioral therapy with someone familiar with grief may be available through your local Alzheimer's Association or Council on Aging. Involvement in a new activity or old favorite with women her age may help. Reassuring her that her husband is "safe and calm" may help and that nothing she did caused his disease.
  • Consider reading some current writings on being stoic--which I think of as "I do not control the final destination of this journey, yet I can plan well, observe the many moments of wonder and make deep friendships all along the way, living a life of purpose."
Hugs from another 4/4 who believes we will write happier chapters of our families' stories.
Wow, NF52, this information was so reassuring! Thank you for taking the time to share insight on my family history. Behavioral variant AD seems very likely for my dad; I found it helpful to have a better understanding of his disease progression. It also helps to explain the added toll that this taken on my mom - his behaviors have been very overwhelming (and financially costly) for her.

I have encouraged my mom to seek medical help and she was just diagnosed with depression and MCI. The MCI diagnosis was based on the MMSE. She will now see a neurologist for next steps. She seems more open to integrating some aspects of the Bredesen protocol into her lifestyle, but she needs me to guide her. I have also encouraged her to seek out grief counseling.

I can't thank you enough for your very caring and insightful message! I really appreciate this community :D
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Re: ApoE 4/4: Grateful, but need some hope

Post by floramaria »

elizabethdr wrote: Wed Jan 26, 2022 11:13 am Thank you so much for your thoughtful and kind reply. I have read it many times over the holiday break and it has brought me much hope and encouragement. This community is amazing! :)
You are so welcome, elizabethdr! Thank you for replying. I hope you continue to find support and encouragement here.
Like you, I am grateful for this amazing community!
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
ReCODE 2.0 Health Coach with Apollo Health
NF52
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Re: ApoE 4/4: Grateful, but need some hope

Post by NF52 »

elizabethdr wrote: Wed Jan 26, 2022 11:34 am Wow, NF52, this information was so reassuring! Thank you for taking the time to share insight on my family history. Behavioral variant AD seems very likely for my dad; I found it helpful to have a better understanding of his disease progression. It also helps to explain the added toll that this taken on my mom - his behaviors have been very overwhelming (and financially costly) for her.

I have encouraged my mom to seek medical help and she was just diagnosed with depression and MCI. The MCI diagnosis was based on the MMSE. She will now see a neurologist for next steps. She seems more open to integrating some aspects of the Bredesen protocol into her lifestyle, but she needs me to guide her. I have also encouraged her to seek out grief counseling.

I can't thank you enough for your very caring and insightful message! I really appreciate this community :D
We each pay it forward on this site or in our lives for those who helped us through the dark days. You've already paid it forward with your mother. Warm wishes for better days ahead.
4/4 and still an optimist!
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