Author Topic: Alzheimer’s drug - how much would you pay / extend your career for this drug?  (Read 3121 times)

HeadedWest2029

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First of all, some potentially good news on the Alzheimer's front https://www.cnbc.com/2021/06/07/fda-approves-biogens-alzheimers-drug-the-first-new-therapy-for-the-disease-in-nearly-two-decades.html

Then I read this... "Biogen said Monday that aducanumab’s list price is $56,000 per year; $4,312 per infusion."

As someone who has Alzheimer's in the family history AND shows a higher risk of getting the disease via genetic testing on 23andme, I'm excited to see some progress on probably my biggest worry of old age.  Would something like this be covered under Medicare Part B (I'm fairly ignorant on the whole Medicare system)?  I'm also curious how MUCH this slows the disease.  $56,000 is wildly expensive, but perhaps that price comes down significantly?
« Last Edit: June 07, 2021, 12:37:41 PM by HeadedWest2029 »

Sibley

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I think the real question is what's going to push the US over the edge into doing something about price gouging in medicine?

Frankly, given the aging population and the expected increase in Alzheimer's patients.... at some point it becomes a necessity not a luxury because the costs of caring for the sheer number of patients becomes unmanageable.

kanga1622

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You might check if they have some way to “help” cover the copay.

I have a coworker on a biologic drug that requires her to give herself a shot each week. It is WILDLY expensive but the company had a “copay” card. Essentially the pharmacy processes it through insurance and then my coworker takes her copay card provided by the manufacturer that covers the rest of the cost. I believe her copay card covers some crazy high amount like $20k per year that isn’t covered by insurance.

And prices generally reduce over time on drugs as generics become available. So the price could be significantly cheaper if you truly need it years down the road.

TrMama

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This particular drug has been controversial because it's not clear that it actually works. If it doesn't, then the price is irrelevant.

Paul der Krake

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Best I can do is $3.50.

wageslave23

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Just for fun. Let's say you make $100k a year after taxes.  And the drug completely takes away the symptoms of alzheimers.  I don't think I would trade one year of working while in my prime for two years of non alzheimers when I'm in my 70s or 80s. 

If I was still capable of working and earning $50k a year take home while in my 70s or 80s and I just needed to work in order to pay for each year of alzheimers cure, then it's definitely worth it.

kite

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Not one cent.
No evidence that it works.

Moreso, I'm on my second and third relatives with the disease.  Care for Alzheimer's can quickly surpass $100,000 annually. When you go broke, you get Medicaid.  And maybe check out a Medicaid facility before ramping up spending like that late in life.

wenchsenior

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This particular drug has been controversial because it's not clear that it actually works. If it doesn't, then the price is irrelevant.

This.  Not worth an investment, IMO.

Dictionary Time

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If it worked…

And I was making $56,000/year…

I would work to pay for it. It would be worth it to me. Because when you work, you still get nights and weekends and vacations, but when you have dementia you don’t.

My mom got it in her late 50s, so it can happen to younger people, even if it usually strikes the elderly. If she were still here and working to pay for her mind, it would be worth every penny.

CodingHare

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If it comes out, works, and is affordable (IE, not $56k a year, that's more than our FIRE budget), sure.  But this reminds me that I need to get a lawyer to write up my living will.  I'd like a nice bed and a shot to put me to sleep well before I get to the crapping myself stage of Alzheimers or any other neurological condition.  I don't have kids and I don't my SO draining the bank dry to keep me alive if I'm on that path.  I'd rather spend the money on our prime years + a good retirement home if we are sound of mind.

dblaace

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Relatively cheap compared to some cancer drugs.

Abe

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This drug was approved through a process called Accelerated Approval, a somewhat controversial mechanism that originally was meant for severe, life-threatening disease with no other effect treatment. There are a few caveats for accelerated approval that are worth clarifying:

Accelerated approval does not require meeting a specific clinically relevant endpoint (i.e. overall survival, disease-free survival in cancer) but can be granted if there is an objectively measurable lab/imaging finding that corresponds to some clinical measurement. For example, in cancer trials we may use how many patients have a specific amount of tumor shrinkage rather than how many patients die of their cancer. There are several reasons for this, including speeding up trial evaluation, but downsides also (sometimes what we think is a good sign in the short-term doesn't matter in the long term).

For this drug, the FDA gave approval based on three trials showing a reduction in the Beta-amyloid plaques seen on PET, and one trial showing a statistically significantly lower decline in certain dementia scales (but not in others).

The controversy arises in the clinical outcomes using various scales. They were not as impressive. For example, some of the differences in two largely used scale translates to a better score on a single question on average after 18 months of treatment. Interestingly, patients at baseline had scores on a commonly used dementia screening tool that were well within the normal range. The severity of decline (both treatment groups and the placebo group did decline on average) was less in the high-dose treatment groups for one of these trials, but this difference was not observed in a second study. No group had stabilization of clinical symptoms. 

I'm not a neuropsychiatrist so can't comment further on the validity of the dementia scales used regarding Alzheimer's dementia specifically, but overall the clinical results are not impressive. My parents are specialists, and I can ask them on their general opinions of this drug if people are interested.
« Last Edit: June 07, 2021, 07:20:43 PM by Abe »

Metalcat

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I'm on drugs right now that theoretically cost tens of thousands. My insurance pays for most of it and the drug company covers the rest. My mom is on even more expensive drugs and has never paid a cent out of pocket for them.

So I'm not certain it actually would involve needing to continue working. It would all depend on how it rolls out financially.

That said, I've already spent over 20K this year on medical (not medications), so yeah, I'm absolutely willing to spend large sums on not letting my body fall apart.
« Last Edit: June 07, 2021, 09:04:36 PM by Malcat »

SAR

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If I were very concerned about Alzheimer's, then I'd look closely at the drug.

But I'd spend more time looking at diet and other interventions. Google scholar shows a good number of observational studies on the role of diet.

https://scholar.google.com/scholar?hl=en&as_sdt=0,5&q=alzheimer%27s+diet

Avoid omega 6s, get plenty of whole plants, fruits, veges . . .

Metalcat

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If I were very concerned about Alzheimer's, then I'd look closely at the drug.

But I'd spend more time looking at diet and other interventions. Google scholar shows a good number of observational studies on the role of diet.

https://scholar.google.com/scholar?hl=en&as_sdt=0,5&q=alzheimer%27s+diet

Avoid omega 6s, get plenty of whole plants, fruits, veges . . .

Also floss every day. Not even kidding, gum disease is considered a modifiable risk for Alzheimer's.

namasteyall

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If I were very concerned about Alzheimer's, then I'd look closely at the drug.

But I'd spend more time looking at diet and other interventions. Google scholar shows a good number of observational studies on the role of diet.

https://scholar.google.com/scholar?hl=en&as_sdt=0,5&q=alzheimer%27s+diet

Avoid omega 6s, get plenty of whole plants, fruits, veges . . .

Usually feel we humans will do anything, pay anything, except heal the earth's surface and let it recover, and heal the soil/water/clothing/buildings, etc. as priority. We will do almost anything except exercise, sleep adequately, have quiet times and happy socializing and eat really well.

wageslave23

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If I were very concerned about Alzheimer's, then I'd look closely at the drug.

But I'd spend more time looking at diet and other interventions. Google scholar shows a good number of observational studies on the role of diet.

https://scholar.google.com/scholar?hl=en&as_sdt=0,5&q=alzheimer%27s+diet

Avoid omega 6s, get plenty of whole plants, fruits, veges . . .

Usually feel we humans will do anything, pay anything, except heal the earth's surface and let it recover, and heal the soil/water/clothing/buildings, etc. as priority. We will do almost anything except exercise, sleep adequately, have quiet times and happy socializing and eat really well.

I completely agree.  I think that philosophy has some ties to MMM.  MMM says to ride your bike, go hiking, cook a meal vs. buy a fancy car, go on cruise, eat at a restaurant.  Good health starts with sleep, nutrition, exercise vs. pop a pill, surgery, devices.  Not that there isn't a place for the latter interventions, but ignoring the former ones is a huge mistake.

HeadedWest2029

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Turns out there was good reason for the underwhelming results.  The original premise was doctored in the name of career advancement.  Quite possibly 16 years of wasted research.  https://www.science.org/content/article/potential-fabrication-research-images-threatens-key-theory-alzheimers-disease

TLDR twitter thread from the author  https://twitter.com/cpiller/status/1550181254972067840
« Last Edit: July 24, 2022, 06:57:08 AM by HeadedWest2029 »

Dicey

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Wow, I don't know how I missed this thread the first time around, but that's a very interesting and disturbing update. I'm currently participating in the Alzheimer's Disease Neuroimaging Initiative (ADNI) at UCSF. I'd be mighty pissed if all the money and time spent comes to naught because of a small number of misguided scientists. Of course, if I develop Alzheimer's, I won't remember any of it.

maizefolk

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@Dicey I read up on ADNI after seeing you post here about it. Sounds like an extremely useful project and one that should benefit research for years regardless of whether the designers have the right or wrong ideas about the root causes of alzheimer's.

Even before this latest news, there has been more and more worry that something is fundamentally wrong with our models for alzheimer's, because that model suggests a lot of drug targets, and those drug candidates just keep failing to alter disease progression in humans (at much higher rates than other drugs, which already fail at high rates).

If anything, having a bunch of time series data from initially healthy participants continuing on to through the onset of symptoms for the subset of people who end up developing the disease is going to help to get at the actual root cause(s) of the disease. So thank you for what you're doing, Dicey. My guess is that we're all going to benefit from the dataset you're helping to build.

Sibley

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I saw that article this morning. Not sure if I'm more pissed about the doctored Wakefield study on autism or the doctored Alzheimer's study. My grandmother had severe dementia. My dad has cognitive impairment. Based on our demographics, large portions of the world is going to be drowning in dementia patients in the coming decades. 20 years of wasted research has real consequences, because we don't have another 20 years to spend.

Catbert

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This particular drug has been controversial because it's not clear that it actually works. If it doesn't, then the price is irrelevant.

This.  Not worth an investment, IMO.

Also has some potentially life threatening side effects (e.g. brain bleed).  Not for me (or Mr. Cat who has mild Alzheimer's now).

DeniseNJ

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I think another important question is what would you do to prevent Alzheimer's, not just how much would you spend.  Like, would you exercise?  Would you eat a healthy diet of fruits and veg every day? Would you tend to your sleep?  Would you get outdoors?  Would you try new and difficult things to keep your brain active?

People might work longer, disrupting their lives and plans, but we don't seem willing to live a lifestyle that will protect from disease.

BTW, estrogen loss at menopause causes heart disease, osteoporosis, and Alzheimer's.

EchoStache

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I think another important question is what would you do to prevent Alzheimer's, not just how much would you spend.  Like, would you exercise?  Would you eat a healthy diet of fruits and veg every day? Would you tend to your sleep?  Would you get outdoors?  Would you try new and difficult things to keep your brain active?

People might work longer, disrupting their lives and plans, but we don't seem willing to live a lifestyle that will protect from disease.

BTW, estrogen loss at menopause causes heart disease, osteoporosis, and Alzheimer's.

Agree.  I find most people would not do anything in your first paragraph(not in the context of Alzheimers's, specifically, but health in general).  Sadly, the norm is to be unwilling to change behavior at all to improve ones situation, whether it be financial or health related.  If it can't be fixed with a pill, it won't happen for most.

Kind of off topic but kind of not, my mom was experiencing bone density loss and was on meds for it.  After some years, she started following a pretty simple resistance training regimen at home that I helped her with.  Not only did she slow down or stop the bone loss, but her bone density began increasing.  At the age of 70, she can do 20 full pushups from her toes(as in not from the knees, although she did as she worked her way up)

Metalcat

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I think another important question is what would you do to prevent Alzheimer's, not just how much would you spend.  Like, would you exercise?  Would you eat a healthy diet of fruits and veg every day? Would you tend to your sleep?  Would you get outdoors?  Would you try new and difficult things to keep your brain active?

People might work longer, disrupting their lives and plans, but we don't seem willing to live a lifestyle that will protect from disease.

BTW, estrogen loss at menopause causes heart disease, osteoporosis, and Alzheimer's.

Agree.  I find most people would not do anything in your first paragraph(not in the context of Alzheimers's, specifically, but health in general).  Sadly, the norm is to be unwilling to change behavior at all to improve ones situation, whether it be financial or health related.  If it can't be fixed with a pill, it won't happen for most.

Kind of off topic but kind of not, my mom was experiencing bone density loss and was on meds for it.  After some years, she started following a pretty simple resistance training regimen at home that I helped her with.  Not only did she slow down or stop the bone loss, but her bone density began increasing.  At the age of 70, she can do 20 full pushups from her toes(as in not from the knees, although she did as she worked her way up)

As someone who spent years helping patients modify their daily health habits, I would say it's a little more nuanced than you're describing.

Most patients actually care pretty deeply about their health and are theoretically willing to do just about anything if they have a good grasp of their actual ability to influence their outcomes.

Instead, what they end up hearing is "blah, blah, blah, unrealistic expectations of ideal behaviour, blah, blah, blah, no one actually does this, blah, blah, blah, there is a pill you can take." Whether that's a fair representation of what their doctor actually said is a whole other issue, but that's what a lot of them hear.

Some will brush everything off with a cavalier "fuck it, just give me a pill/surgery/etc" attitude, but they're often, surprisingly the easiest to reach and the most willing to change if you can crack their hard candy coating. If they're that defiant, then it's usually because they're scared. Ironically, the hardest people to motivate are the ones who easily agree to do what you ask, because they're just people pleasers and the next person who demands their resources will get them.

I personally had a lot more success motivating my patients to change their behaviour than my colleagues did, but that's because I went out of my way to do courses in motivational interviewing and behavioural modification.

Go figure! Getting people to behave differently is a learnable skill, just like surgery. And yet, medical systems are specifically set up in a way that makes this kind of intervention less probable.

ETA: most people aren't actually stupid and lazy, contrary to popular opinion. Most people have just never been effectively motivated, have felt realistically empowered to govern their own physical outcomes, and always just been made to feel shame, which is a very, very poor behaviour improvement motivator.
« Last Edit: July 25, 2022, 01:49:09 PM by Malcat »

Dicey

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I think another important question is what would you do to prevent Alzheimer's, not just how much would you spend.  Like, would you exercise?  Would you eat a healthy diet of fruits and veg every day? Would you tend to your sleep?  Would you get outdoors?  Would you try new and difficult things to keep your brain active?

People might work longer, disrupting their lives and plans, but we don't seem willing to live a lifestyle that will protect from disease.

BTW, estrogen loss at menopause causes heart disease, osteoporosis, and Alzheimer's.
Well I must be pretty messed up since I went thru a very early menopause at age 30 ;-). It actually seemed to have a positive physical effect on me as I seemed to retain more health and youthfulness then the average person my age (more then 25 years after menopause). None of the short term symptoms most women go thru and so far (knock on wood) none of the long term ones either. I personally believe that it is natural aging that accounts for most of the medical issues women have and not menopause. If I had gone thru menopause at say age 50 instead of 30 and was now 75 or 80 instead of 50s I'd expect some medical and possibly cognitive decline. So far that's not the case. At least not physically but ...um...what was I saying ;-).

As for the OP: I wouldn't pay anything to keep my career lgoing longer, but I'd pay and do whatever I could afford to keep my (healthy mind and body) life going as long as possible.
Malcom Gladwell has an essay in which he explains that our bodies weren't meant to experience as many periods as women do in the modern era. Perhaps that has something to do with it. Staying fit and active surely helps, too.

Wolfpack Mustachian

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I think another important question is what would you do to prevent Alzheimer's, not just how much would you spend.  Like, would you exercise?  Would you eat a healthy diet of fruits and veg every day? Would you tend to your sleep?  Would you get outdoors?  Would you try new and difficult things to keep your brain active?

People might work longer, disrupting their lives and plans, but we don't seem willing to live a lifestyle that will protect from disease.

BTW, estrogen loss at menopause causes heart disease, osteoporosis, and Alzheimer's.

Agree.  I find most people would not do anything in your first paragraph(not in the context of Alzheimers's, specifically, but health in general).  Sadly, the norm is to be unwilling to change behavior at all to improve ones situation, whether it be financial or health related.  If it can't be fixed with a pill, it won't happen for most.

Kind of off topic but kind of not, my mom was experiencing bone density loss and was on meds for it.  After some years, she started following a pretty simple resistance training regimen at home that I helped her with.  Not only did she slow down or stop the bone loss, but her bone density began increasing.  At the age of 70, she can do 20 full pushups from her toes(as in not from the knees, although she did as she worked her way up)

As someone who spent years helping patients modify their daily health habits, I would say it's a little more nuanced than you're describing.

Most patients actually care pretty deeply about their health and are theoretically willing to do just about anything if they have a good grasp of their actual ability to influence their outcomes.

Instead, what they end up hearing is "blah, blah, blah, unrealistic expectations of ideal behaviour, blah, blah, blah, no one actually does this, blah, blah, blah, there is a pill you can take." Whether that's a fair representation of what their doctor actually said is a whole other issue, but that's what a lot of them hear.

Some will brush everything off with a cavalier "fuck it, just give me a pill/surgery/etc" attitude, but they're often, surprisingly the easiest to reach and the most willing to change if you can crack their hard candy coating. If they're that defiant, then it's usually because they're scared. Ironically, the hardest people to motivate are the ones who easily agree to do what you ask, because they're just people pleasers and the next person who demands their resources will get them.

I personally had a lot more success motivating my patients to change their behaviour than my colleagues did, but that's because I went out of my way to do courses in motivational interviewing and behavioural modification.

Go figure! Getting people to behave differently is a learnable skill, just like surgery. And yet, medical systems are specifically set up in a way that makes this kind of intervention less probable.

ETA: most people aren't actually stupid and lazy, contrary to popular opinion. Most people have just never been effectively motivated, have felt realistically empowered to govern their own physical outcomes, and always just been made to feel shame, which is a very, very poor behaviour improvement motivator.

Are there any general tips to improve motivation in these or similar situations (other than don't use shame)?

Metalcat

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I think another important question is what would you do to prevent Alzheimer's, not just how much would you spend.  Like, would you exercise?  Would you eat a healthy diet of fruits and veg every day? Would you tend to your sleep?  Would you get outdoors?  Would you try new and difficult things to keep your brain active?

People might work longer, disrupting their lives and plans, but we don't seem willing to live a lifestyle that will protect from disease.

BTW, estrogen loss at menopause causes heart disease, osteoporosis, and Alzheimer's.

Agree.  I find most people would not do anything in your first paragraph(not in the context of Alzheimers's, specifically, but health in general).  Sadly, the norm is to be unwilling to change behavior at all to improve ones situation, whether it be financial or health related.  If it can't be fixed with a pill, it won't happen for most.

Kind of off topic but kind of not, my mom was experiencing bone density loss and was on meds for it.  After some years, she started following a pretty simple resistance training regimen at home that I helped her with.  Not only did she slow down or stop the bone loss, but her bone density began increasing.  At the age of 70, she can do 20 full pushups from her toes(as in not from the knees, although she did as she worked her way up)

As someone who spent years helping patients modify their daily health habits, I would say it's a little more nuanced than you're describing.

Most patients actually care pretty deeply about their health and are theoretically willing to do just about anything if they have a good grasp of their actual ability to influence their outcomes.

Instead, what they end up hearing is "blah, blah, blah, unrealistic expectations of ideal behaviour, blah, blah, blah, no one actually does this, blah, blah, blah, there is a pill you can take." Whether that's a fair representation of what their doctor actually said is a whole other issue, but that's what a lot of them hear.

Some will brush everything off with a cavalier "fuck it, just give me a pill/surgery/etc" attitude, but they're often, surprisingly the easiest to reach and the most willing to change if you can crack their hard candy coating. If they're that defiant, then it's usually because they're scared. Ironically, the hardest people to motivate are the ones who easily agree to do what you ask, because they're just people pleasers and the next person who demands their resources will get them.

I personally had a lot more success motivating my patients to change their behaviour than my colleagues did, but that's because I went out of my way to do courses in motivational interviewing and behavioural modification.

Go figure! Getting people to behave differently is a learnable skill, just like surgery. And yet, medical systems are specifically set up in a way that makes this kind of intervention less probable.

ETA: most people aren't actually stupid and lazy, contrary to popular opinion. Most people have just never been effectively motivated, have felt realistically empowered to govern their own physical outcomes, and always just been made to feel shame, which is a very, very poor behaviour improvement motivator.

Are there any general tips to improve motivation in these or similar situations (other than don't use shame)?

Understand stages of readiness for change and work with people where they are in those stages. But first, always earn their trust. This is also a learnable skill.

Lol. I have shamed plenty of people, but only once I've earned their trust and know that they're ready to hear it. That doesn't have to take long, usually I could get there with most people in about 5-30 minutes.

I approached everyone with a deep sense of respect for their autonomy and authority over their own bodies. I also operated from the assumption that they cared deeply about their health and well being, even if their behaviour didn't reflect that.

I would often flat out say "I'm going to assume your issues have developed not because you don't care, or are lazy, but because there's just always been something in the way of you being able to take really good care of yourself. Sound about right?"

If I treat someone with respect, and earn their trust, then paradoxically, I can say outright rude shit and have it taken really well AND have it increase their trust in me and take the message more seriously.

Patients are so used to medical staff being cruel and dismissive while sounding so polite, so I hit them hard with the opposite by showing genuine respect while saying crazy shit, so they know I'm for real.

My staff had a collection of "shit Dr. Malcat says" that they would quote back to me like "You're 28, it's time to grow the fuck up" and "Dude, face it, you're gross" and my favourite "No big deal, you'll just die a lot younger and make me a lot richer."

Think about how respected someone has to feel in order to take comments like that well. In clinical counselling we call it unconditional positive regard. No matter what criticism I'm directing at them, it's coming from a place where I will never think poorly of them as a person. I'm on their side. I'm like a sports coach who is criticizing their form *because* I respect them as an athlete. I'm on *their* team. I work for *them*.

Lol, I had one young male patient come back and say with a laugh that after meeting me the first time, he sat in his car for awhile and contemplated how he was failing himself as a human being. I had given him more respect than he usually gave himself.

And THAT is the major crux of people not prioritizing their health. Most people in today's society lack A LOT of dignity and self respect.

You take care of the things you value. How can we expect people to take care of themselves when their self worth is shit?

DeniseNJ

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I think another important question is what would you do to prevent Alzheimer's, not just how much would you spend.  Like, would you exercise?  Would you eat a healthy diet of fruits and veg every day? Would you tend to your sleep?  Would you get outdoors?  Would you try new and difficult things to keep your brain active?

People might work longer, disrupting their lives and plans, but we don't seem willing to live a lifestyle that will protect from disease.

BTW, estrogen loss at menopause causes heart disease, osteoporosis, and Alzheimer's.
Well I must be pretty messed up since I went thru a very early menopause at age 30 ;-). It actually seemed to have a positive physical effect on me as I seemed to retain more health and youthfulness then the average person my age (more then 25 years after menopause). None of the short term symptoms most women go thru and so far (knock on wood) none of the long term ones either. I personally believe that it is natural aging that accounts for most of the medical issues women have and not menopause. If I had gone thru menopause at say age 50 instead of 30 and was now 75 or 80 instead of 50s I'd expect some medical and possibly cognitive decline. So far that's not the case. At least not physically but ...um...what was I saying ;-).

As for the OP: I wouldn't pay anything to keep my career lgoing longer, but I'd pay and do whatever I could afford to keep my (healthy mind and body) life going as long as possible.

Look up Dr. Barbara Taylor on YouTube.  She does not preach or tell you what to do.  She just gives you the scientific facts, and possibilities and limitations of all treatment options.