Mom was diagnosed at 71. Am I doomed to younger-onset AD?

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DistinguishedHeathen
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Mom was diagnosed at 71. Am I doomed to younger-onset AD?

Post by DistinguishedHeathen »

Hello again, it's been a while since I've posted thanks to my mom's rapid decline (she was recently diagnosed with multiple myeloma and is now entering middle dementia at just 73 years old). And, as my concerns about her decline grow, so too do my fears about my own future.

Recently, I read an article about a study noting that, if you are female and your mother had AD, then your age on onset is likely to be even earlier. Since my mom developed AD at 71, I'm deeply worried about myself. We both carry just one copy of ApoE4, and neither of my mom's parents had AD, though her paternal grandmother did (unknown age of onset).

I know this is anecdotal, but I'd LOVE to hear from older E4s out there (especially women) who are older now than their parent(s) were when symptoms began. Is there anyone here?
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Re: Mom was diagnosed at 71. Am I doomed to younger-onset AD?

Post by NF52 »

DistinguishedHeathen wrote: Fri Sep 16, 2022 2:16 pm Hello again, it's been a while since I've posted thanks to my mom's rapid decline (she was recently diagnosed with multiple myeloma and is now entering middle dementia at just 73 years old). And, as my concerns about her decline grow, so too do my fears about my own future.

Recently, I read an article about a study noting that, if you are female and your mother had AD, then your age on onset is likely to be even earlier. Since my mom developed AD at 71, I'm deeply worried about myself. We both carry just one copy of ApoE4, and neither of my mom's parents had AD, though her paternal grandmother did (unknown age of onset).

I know this is anecdotal, but I'd LOVE to hear from older E4s out there (especially women) who are older now than their parent(s) were when symptoms began. Is there anyone here?
I'm so sorry to hear of your mom's rapid decline since you first posted about her two years ago or so. Please know that ANY study of age of diagnosis in parents and offspring could be affected by multiple factors, all of which only point to an association, not to causation. Having sat through reviews of grant applications in Alzheimer's research, I've learned that epidemiology is one of the trickiest areas: How do you know if someone had a brain injury or not if it's not in their health record or they don't recall it? How do you know if current electronic health records capture health histories from all those paper files. (I know mine doesn't.) How do you know what was Alzheimer's when that diagnosis didn't include imaging studies of amyloid and tau? Current re-analysis of early failed drug trials suggests that as many as 30% of diagnoses of AD were not supported, and probably represented one or more of several other dementias or conditions.

So a study that purports to show an earlier age of onset in daughters is one I would look at closely for methodology, size of the cohort, time period (people born in the 1920's or in the 1950's), the source of the cohort (a memory clinic or a population study), range of results (a statistically significant median age may hide a HUGE variance in ages). Lots of confounding variables are likely to appear.

Your mom's parents each gave you about 25% each of your genes (some cross-over can occur!) and never developed dementia. Her paternal grandmother may have been born between say 1881 and 1909 and gave you about 12.5%, and her dementia may have been any number of other diseases than Alzheimer's, especially if she was diagnosed late in life. So look at yourself as having that 50% from grandparents who showed resilience!

Your mom may have some unique environmental, health history or genetic risk that you simply don't have. [My dad was an identical twin; you can't get any more genetically similar than that. He died with severe coronary artery disease at age 67; his twin died of colon cancer at age 74. This was in the 1980's when both cardiac and colon cancer screening was a rarity--but points to two very different risk trajectories, probably due to lifestyle and environment, which was identical to age 22.]

I suspect that your mother, who you mentioned had a rapid progression of osteoporosis, was unable to have any hormone replacement therapy, given a 2002 study that announced that women who took HRT were likely to get heart attacks. HRT stopped on a dime after that came out for 10 years more, until a re-analysis found the risk was only true for women starting after age 70 and/or 10 years after menopause. The loss of estrogen could have contributed to her osteoporosis and increase glucose hypo-metabolism in her brain. She may also have had other factors you don't share: high blood pressure, limited exercise or cardiovascular fitness, or systemic inflammation. She may even had had an early head injury that she never thought to mention.

Your previous posts show amazing physical and cognitive resources as well as biomarkers! Here's some hopeful news for someone with your exercise and fitness levels, from Spring 2022, from the Wisconsin Registry for Alzheimer's Prevention (WRAP) study for 20 years has followed people with a family history of Alzheimer's or other dementias:
WRAP includes more than 1,700 research participants, many of whom return every other year. Each year, UW–Madison researchers publish dozens of research papers that utilize the valuable data contributed by WRAP participants. Here are a few recent examples...
Cardiorespiratory fitness may slow Alzheimer’s progression
In this study in the lab of Ozioma Okonkwo, PhD, 110 WRAP participants (average age 64) completed a treadmill exercise test to measure their overall cardiorespiratory fitness. Then, they completed two MRIs and two or three cognitive assessments. The study found that participants with a higher level of cardiorespiratory fitness had a slower annual decline in cognitive function and less brain atrophy.Additional analysis suggested the benefits of cardiorespiratory fitness may be even stronger in people with genetic risk of Alzheimer’s disease.
Cardiorespiratory fitness mitigates brain atrophy and cognitive decline in adults at risk for Alzheimer's disease

Most importantly of all: Research and lifestyle interventions are both making enormous strides in understanding how to find the MANY causal pathways to cognitive impairment, and blood tests for both amyloid beta and tau will likely be in clinical use in a few years, along with actual treatments with proven efficacy. You are years away from needing HRT, but will have that available, along with monitoring of your heart, your bone density and your overall health.
So please take the word of this healthy 70 year old with two copies of ApoE 4/4--whose "predicted age of onset of AD is 68". We are all individuals, and those of us lucky enough to have high levels of education, occupational challenge, supportive partners and access to health care are, like you, going to prove those predictions wrong!

Nancy
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Re: Mom was diagnosed at 71. Am I doomed to younger-onset AD?

Post by DistinguishedHeathen »

NF52 wrote: Fri Sep 16, 2022 5:09 pm
DistinguishedHeathen wrote: Fri Sep 16, 2022 2:16 pm Hello again, it's been a while since I've posted thanks to my mom's rapid decline (she was recently diagnosed with multiple myeloma and is now entering middle dementia at just 73 years old). And, as my concerns about her decline grow, so too do my fears about my own future.

Recently, I read an article about a study noting that, if you are female and your mother had AD, then your age on onset is likely to be even earlier. Since my mom developed AD at 71, I'm deeply worried about myself. We both carry just one copy of ApoE4, and neither of my mom's parents had AD, though her paternal grandmother did (unknown age of onset).

I know this is anecdotal, but I'd LOVE to hear from older E4s out there (especially women) who are older now than their parent(s) were when symptoms began. Is there anyone here?
I'm so sorry to hear of your mom's rapid decline since you first posted about her two years ago or so. Please know that ANY study of age of diagnosis in parents and offspring could be affected by multiple factors, all of which only point to an association, not to causation. Having sat through reviews of grant applications in Alzheimer's research, I've learned that epidemiology is one of the trickiest areas: How do you know if someone had a brain injury or not if it's not in their health record or they don't recall it? How do you know if current electronic health records capture health histories from all those paper files. (I know mine doesn't.) How do you know what was Alzheimer's when that diagnosis didn't include imaging studies of amyloid and tau? Current re-analysis of early failed drug trials suggests that as many as 30% of diagnoses of AD were not supported, and probably represented one or more of several other dementias or conditions.

So a study that purports to show an earlier age of onset in daughters is one I would look at closely for methodology, size of the cohort, time period (people born in the 1920's or in the 1950's), the source of the cohort (a memory clinic or a population study), range of results (a statistically significant median age may hide a HUGE variance in ages). Lots of confounding variables are likely to appear.

Your mom's parents each gave you about 25% each of your genes (some cross-over can occur!) and never developed dementia. Her paternal grandmother may have been born between say 1881 and 1909 and gave you about 12.5%, and her dementia may have been any number of other diseases than Alzheimer's, especially if she was diagnosed late in life. So look at yourself as having that 50% from grandparents who showed resilience!

Your mom may have some unique environmental, health history or genetic risk that you simply don't have. [My dad was an identical twin; you can't get any more genetically similar than that. He died with severe coronary artery disease at age 67; his twin died of colon cancer at age 74. This was in the 1980's when both cardiac and colon cancer screening was a rarity--but points to two very different risk trajectories, probably due to lifestyle and environment, which was identical to age 22.]

I suspect that your mother, who you mentioned had a rapid progression of osteoporosis, was unable to have any hormone replacement therapy, given a 2002 study that announced that women who took HRT were likely to get heart attacks. HRT stopped on a dime after that came out for 10 years more, until a re-analysis found the risk was only true for women starting after age 70 and/or 10 years after menopause. The loss of estrogen could have contributed to her osteoporosis and increase glucose hypo-metabolism in her brain. She may also have had other factors you don't share: high blood pressure, limited exercise or cardiovascular fitness, or systemic inflammation. She may even had had an early head injury that she never thought to mention.

Your previous posts show amazing physical and cognitive resources as well as biomarkers! Here's some hopeful news for someone with your exercise and fitness levels, from Spring 2022, from the Wisconsin Registry for Alzheimer's Prevention (WRAP) study for 20 years has followed people with a family history of Alzheimer's or other dementias:
WRAP includes more than 1,700 research participants, many of whom return every other year. Each year, UW–Madison researchers publish dozens of research papers that utilize the valuable data contributed by WRAP participants. Here are a few recent examples...
Cardiorespiratory fitness may slow Alzheimer’s progression
In this study in the lab of Ozioma Okonkwo, PhD, 110 WRAP participants (average age 64) completed a treadmill exercise test to measure their overall cardiorespiratory fitness. Then, they completed two MRIs and two or three cognitive assessments. The study found that participants with a higher level of cardiorespiratory fitness had a slower annual decline in cognitive function and less brain atrophy.Additional analysis suggested the benefits of cardiorespiratory fitness may be even stronger in people with genetic risk of Alzheimer’s disease.
Cardiorespiratory fitness mitigates brain atrophy and cognitive decline in adults at risk for Alzheimer's disease

Most importantly of all: Research and lifestyle interventions are both making enormous strides in understanding how to find the MANY causal pathways to cognitive impairment, and blood tests for both amyloid beta and tau will likely be in clinical use in a few years, along with actual treatments with proven efficacy. You are years away from needing HRT, but will have that available, along with monitoring of your heart, your bone density and your overall health.
So please take the word of this healthy 70 year old with two copies of ApoE 4/4--whose "predicted age of onset of AD is 68". We are all individuals, and those of us lucky enough to have high levels of education, occupational challenge, supportive partners and access to health care are, like you, going to prove those predictions wrong!

Nancy
I'm still absorbing all this, but I want to say this: Bless you for this reply and for easing my fears with such thoroughness and care. Truly, thank you.
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