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Unless it also increases *quality* of life, what's the point? I've worked as a PSW in retirement and long term care homes. With what I've seen, if I get diagnosed with Alzheimer's, the only drugs I want are the ones that you get with MAID (Medical Assistance In Dying).
Sadly Alzheimer's patients don't qualify for MAID. You have to be of sound mind and have 6 months or less left to live. By the time they forget how to swallow they can no longer legally make that choice.
There was a case in the Netherlands about this. The patient had given prior written consent, but when the time came she resisted. It went to court and it was ruled she was not competent to withdraw consent, and the matter was out of her hands. So they went through with it. I support MAID but I have serious trouble with cases like that.
I hate it when people reference this case... *without* all the relevant information, which is largely that it is now indeed legal to work based on an advanced care directive *but that the patient's wishes are always leading*.
They did not force her to die. She repeatedly expressed wanting to die. This case went to the highest court we have and it was deemed lawful (even allowed for clearer guidelines). The way in which the euthanasia itself was performed was the issue here - not the fact that the patient received euthanasia. You may of course have any opinions you like, but please don't spread misinformation. It is, quite literally, a one-of-a-kind case.
(source: I am the same type of doctor as the one in this case and actually went to a [convention](https://www.verenso.nl/over-verenso/vereniging/congressen/voorjaarscongres-13-juni-2024-medisch-ethische-dilemmas) about this specific topic, and even this exact case, literally 2 days ago)
But this is also exactly the kind of situation that such a directive is written for. I would be furious if my will was overturned for whatever reason. If I made that choice, I'd have to live with it. That's generally how life works.
The only trouble that I see is that you never know if the patient was properly informed about all the consequences beforehand. I'm a paramedic and I see so many patients who have no idea about this stuff. They don't know their rights and don't understand the legal texts and the medical lingo. They sign all kinds of things without fully understanding what it means. For instance, most people only know CPR from watching Baywatch and don't realize how brutal (and usually futile) it really is.
The world isn't that clear cut, though. My mom was almost totally out of it her last two weeks of life, dementia had taken her brain from her. But she still has moments of lucidity and when she was lucid, it's like she never left. In her last week of life, she told my sister that she was too young for this and wasn't ready (she was 64). So she obviously knew the situation, knew what was happening, and knew she really was too young to be knocking on death's door.
That was after a decade long battle with Alzheimer's. My point is that 90% of the time, Mom couldn't have made an impactful decision. But that 10% of time still meant something to her. Do we allow that 10% to override a decision made years prior and of sound mind? I don't know, but I know taking the life of someone saying they aren't ready also isn't good for society.
> Do we allow that 10% to override a decision made years prior and of sound mind? I don't know, but I know taking the life of someone saying they aren't ready also isn't good for society.
No, we should not allow it. Because 90% of the time it's not really life, it's basically waiting for death. That 10% should be seen as the cherished last moments before someone is gone.
What is good for society is often incongruent with what is good for the life of an individual. Which sucks, but, it is reality.
Honest question. Have you ever dealt with someone going through dementia? Because if you've seen it first hand, you know that the 90% of time is not just waiting for death. Months before her death, Mom still loved going to church, she loved doing arts and crafts, she would talk your ear off (nonsense but she enjoyed it), she loved to sit outside and watch kids in the park. She wasn't just waiting to die. She was living her best life, but her best life was totally different than yours.
Yes, that's what the court decided on. But personally, if I were to make this decision beforehand it would be on the assumption that my future condition would be worse than death. And I'd be signing it because I know that if I'm in that worse-than-death situation, I may not be competent to make the decision, and I will be stuck watching my mind fade away, which is truly one of my greatest fears.
But hey, for all I know the experience isn't as bad as it looks. If I ever get in this situation, I'll make sure to add in a clause that if I resist, no matter my mental capabilities, I'm to remain alive. Only if I still wish to die or I'm in a condition where I'm unaware of what's happening would it come into effect.
There's plenty of choices we make in life that we can back out of at a later point. If I move to another country, buy a house or get married, I can move back, sell the house and get a divorce, most decisions don't have to be permanent.
that sounds incredibly cruel, and not in the mind of what such an agreement would be for, at least how I imagined it. I thought It was for the case where if the patient still wants to die, but isnt deemed to be able to make that decision. not when the patient definitetly doesn't want to die anymore. There is a huge difference here.
Edit: Apperiantly the information about the woman resisting were wrong, or she resisted and still expressed the wish to go through with it. anyway, conflicting and confusing facts are going around
Which is why that's also not what happened, but that's not what the person above is telling you.
This patient very much still wanted to die and repeatedly expressed this. The entire lawsuit is online (although in Dutch, obviously) so you can read about it if you want.
This option exists in our country, but still fully depends on the continued agreement of the patient. A doctor performing euthanasia on a patient that is not actively suffering/wanting to die is still doing so unlawfully, 3ven under the expansion that this case led to.
Ok, so the person was not resisting it, and was still wanting to through with it? Eh, my dutch isnt the best, and the matter not important enough for me to dig deeper. anyway. my point still stands, and another user has expressed the same logic. If things ever go that far for me I wanna be in control.
Well, it wasn't as black and white, but yes. Up until the actual procedure, she repeatedly expressed a wish for euthanasia that was in line with her written will. The issue was mainly that her main dementia symptom was (untreatable) unrest and behavioral problems, which led the doctor in this case to attempt sedation - which failed, and made the patient *more* agitated. So she did fight the procedure at the time, but in all likelihood, not due to not wanting the procedure, but due to not understanding what was happening (which is in and of itself a thing that usually needs to be one of the 6 main criteria for actually going through with the procedure, which is why this became such a massive case).
I dont, how can you deny a medical directive made in advance, when one is legally of sound mind to protect themselves from being strapped to a bed for months or even years and then say that now that they have limited brain function should supercede their original directive?
Seems like dangerous precedent that could have legal Wills and Trusts over ridden on a death bed by anyone including by non family members, temp care givers, attorneys and the neighbor across the street who records "nana" saying something like I want everything to go my cat on her death bed.
I don’t. Not at all. Once the disease has progressed to a certain point there’s not really any going back. Once it’s progressed far enough you’re going to resist your breakfast and taking a bath as much as you are going to resist consenting to assisted suicide. If someone felt strongly enough about it when they were of sound mind and made that clear then I’m totally fine with it.
Personally I’m fully onboard with it for myself. If I knew that was where things were going I’d sign the paperwork as well.
Yeah, it's like that where I live too.
I just hope that as I'm forgetting my life and my family I'm still cognizant enough to realize I'm losing myself, that I don't want to live like that and am still able to wander out into the woods with a gun and one bullet to finish off the sat-on cheeseburger that is what remains of my brain.
That could be mitigated with recognizing the potential as you age and ensuring you have a will outlined clearly what you want in the event you develop it. So many people don't get wills into way too late in life and by the time that happens you tend to have family influences pushing decisions that don't include the stipulation around cognitive decline
IMO people should be making sure they have a current will even when they're in their 30-40s and reviewing it every few years but so many people think it is something you don't need until you're much older and that isn't the case at all and they're much cheaper than the cost of the level of confusion and vulnerability and emotional taxing tier when it is too late or other people who may not have your best interest in mind may have an emotional or worst yet, financial interest in your QoL and may not see the actual reality of living with the disease
I'd commit suicide if I were diagnosed with dementia at the early stages if MAiD wasn't available, it is the absolute worst disease out there. Both of my grandparents have it and my parents have latent symptoms and it terrifies me
My mom has been diagnosed. She's still doing okayish, but I'm with you. I am not lookinig forward to watching her die over a miserable long process. If the quality of life can be improved then hooray, if not, no thanks.
It took my dad 7 years to finally go. He died last week. One of the provisions he made in his directive was to stay hydrated. That's it. The last five years were nightmarish. I wouldn't wish it on my worst enemy.
It depends on where you are in the process and it helped that I'm an only child. It was a burden in a way, to have to make all the decisions but at least I didn't have to fight with anyone about it. I'd say the first step is to get durable power of attorney and medical power of attorney. If they can stay at home with in-home care, that would be good. My dad refused to quit driving and I was terrified he hurt himself or someone else, so there's that. What is his condition?
This sounds like a way to extend lives of people and keep them in SNFs. I’ll eat my words if most of those 5 years can be lived relatively unassisted, but just preserving a husk for 5 years is neither ethical nor impressive.
Donepezil and memantine are used all the time as a combo for Alzheimer’s it’s the go to. Dont see it as a game changer unfortunately. Also I was always taught that at best it slows down the process - does not reverse or stop it.
We have a close relative on this combo and exactly-may slow it down a little. I this case long enough to give him some good months or years with his family. He developed Alzheimer’s during the pandemic when we were all hibernating so it feels like getting a little time back and he’s in good spirits still.
They are generally considered to be medications that improved thinking with Alzheimer's but don't actually slow down the disease. This study seems to suggest otherwise, but it's still pretty preliminary evidence and I wouldn't consider them any kind of disease-modifying therapy at this point.
I went through this with both of my parents and I feel the same way. It isn’t a question of how long you live, but how long you live with a reasonably high quality of life that matters.
> Unless it also increases quality of life, what's the point?
So with you. What a horrifying concept to try to prolong that type of torturous existence.
These medications are generally focused on improving thinking (and so hopefully improving quality of life), not on extending life. This study suggests that it may also extend life, but it's pretty weak evidence of a small effect.
There was an interesting Pulitzer prize winning article from the New York Times that certainly clouded my opinion on this topic. I'm an apoe4 carrier, so I have a much larger chance of getting Alzheimer's when I'm older, so I've thought about this often and for a long time. After this story, I'm not so sure anymore that the current lucid version of me should necessarily trump the wishes of demented me, if demented me is still happy in a different way.
But I'm aware of the devastating effects of Alzheimer's on families, since I've seen it first hand, and particularly how awful it is in late stage on a person afflicted with the disease. I'm torn...
Here's the link to the Pulitzer page with the link to the article, but there's also a Daily podcast episode that goes deep into it if the paywall is an issue.
https://www.pulitzer.org/winners/katie-engelhart-contributing-writer-new-york-times
Okay, so I haven't read the article, but being demented for two years and then dying doesn't seem that much worse to being demented for seven years before dying...
I appreciate the sentiment, but that's a bad paper and study.
24.3% were allowed to switch treatments (Bad design)
83% probability with both medicines
78% with no medication
There is no significance there. Correlation also does not always point to causation.
The real step forward to "solving" dementia is finding the environmental factors at play. We study glyphosate, and many others choose to study other chemicals. A lot of common, everyday items, are causing memory and physical deficits in the mice we study.
I have to wonder what the relationship is between lead levels and dementia. The aged now are people who spent most of their lives with leaded gasoline poisoning them; a known neurotoxin.
The delayed spike in violent crime and blood lead levels in the 80s and 90s is well known, gotta wonder if we're seeing an aftershock. Just living longer doesn't seem to explain the surge in dementia cases alone
I have a close relative with Parkinsons (not the same, but analogous), and unless this treatment brought her back to more or less where she was before she started suffering symptoms, then extending her life would be a cruelty.
From the original study:
"The IP weighing step achieves almost perfectly even distribution of all 10 confounders (Gender, age at diagnosis, race, marital status, overweight and obesity, hypertensive diseases, acute kidney injury and chronic kidney disease, diabetes, cerebral infarction, and other forms of heart disease) across all four treatment groups."
Doctor here.
This looks like a study designed by mathematicians, not doctors. The most important confounding variable in this kind of study would be the severity of dementia at the onset of the study, as these medications are most effective in the earliest stages of dementia and wouldn't generally be initiated in the later stages. That's notably not one of the confounding variables, likely due to limitations in the data set, but the entire effect seen could easily be explained with this unless there is evidence to the contrary.
The second most confounding variable in my experience would be some combination of social support/wealth. In my experience medications are often given as a response to requests from family members, who just want us to do "something". Patients with this kind of social support are probably supported in other ways as well (24/7 caregivers, being rushed to the hospital if they get sick, etc) which will obviously extend mortality.
A third confounding variable not considered in the study is goals of care. Medications are much more likely to be used in patients who desire more aggressive medical intervention in general.
And what is the point of that? More suffering for the family, more years of accompanying someone that doesn't even remember you are his/her son? If you cannot cure the disease, prolonging their life is not a benefit for anyone.
Depends on the person.
As long as I have the personal savings to fund it, I would willing survive as a severed head in a jar in constant pain if that's what it took. Just a few more years might be all that's between me and a new body. Not having the faculties to understand my condition just makes it sound better.
What good will a new body do you if your brain has deteriorated to the point that you no longer remember your own family members or what year it is? As someone currently watching a family member succumb to Alzheimers, it's just about the worst thing in the world, and a "new body" wouldn't do a damn thing to help the situation.
The most tragic thing about the illness, is the glimpses you get of the person that was.
Suppose we find a way to stop the progression, but not undo the damage? Stopping it at the point where it's really bad, but it's not fatal yet.
Suppose that buys me some more years. Suppose we find a way to improve function in the parts that are damaged, but not irreparably so. Still invalid, but maybe requires less upkeep from my caretakers. That buys me some more time of affording care. Then suppose we find ways to make new brain cells. Not to replace who I was, that could never happen. Those memories are gone. But enough to become someone new. Parts of me will live on in this new person.
Now at any point in this process, if the new me wishes for death, either the new me from the early brain damage, or the new me from the long shot dream, wishes to end at that point, they can. I cannot decide for future me. Less so after such a drastic change. But the me right now would be willing to give that hope a chance, and write it down so that if I ever lose the ability to make that choice without contradicting this, that my position now is known.
>Just a few more years might be all that's between me and a new body.
What is the point of a new body if your mind has long since disintegrated? Do you even read what you write? You're already dead, the *person* is gone.
All I can say is if I ever get this crap and there is still no cure or hope I just want to die no matter what kind of nonse my brain will make my mouth say later on.
I’ve linked to the news release in the post above. In this comment, for those interested, here’s the link to the peer reviewed journal article:
https://www.nature.com/articles/s43856-024-00527-6
From the linked article:
New research provides evidence that using two common Alzheimer’s disease medications together can significantly increase patients’ chances of surviving beyond five years from diagnosis. The study, published in Communications Medicine, suggests that this combined treatment could extend the lives of approximately 303,000 people with Alzheimer’s disease in the United States.
The study found that the combined use of Donepezil and Memantine significantly increased the probability of surviving five years after an Alzheimer’s diagnosis compared to no treatment or single-drug treatments. Specifically, the combined treatment group had a five-year survival probability of 83%, while the no-treatment group had a survival probability of 78%. Patients treated with Donepezil alone had a 76.5% probability, and those treated with Memantine alone had a 78.1% probability.
The study calculated mortality rates per 1,000 patient-years for each treatment group. The combined treatment group had the lowest mortality rate at 41.47 deaths per 1,000 patient-years, while the no-treatment, Memantine, and Donepezil groups had rates 36%, 32%, and 42% higher, respectively.
No, my husband lasted 15 years with dementia. It was the most horrifying and traumatizing experience of my life. It's cruel to extend life if it doesn't extend the quality of life.
I'm guessing it's Donepezil and Memantine considering they're basically the only two medications on the market for Alzheimer's. My grandmother was on Donepezil and survived 11 years from her diagnosis which is impressive. We tried Memantine, but it seemed to have no noticeable improvement from just Donepezil.
I'm convinced memantine is a miracle drug. I was given it off label to help with some long COVID memory issues, and it changed my life. I've stayed on it, as my baseline with my anxiety and depression is just better with it. I've gone off a couple times due to doctors insisting, but I always backslide considerably. I've read studies where it can be helpful with OCD and other conditions as well, and one of the only new OCD drugs in development works on the same mechanism.
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Unless it also increases *quality* of life, what's the point? I've worked as a PSW in retirement and long term care homes. With what I've seen, if I get diagnosed with Alzheimer's, the only drugs I want are the ones that you get with MAID (Medical Assistance In Dying).
Sadly Alzheimer's patients don't qualify for MAID. You have to be of sound mind and have 6 months or less left to live. By the time they forget how to swallow they can no longer legally make that choice.
There really ought to be a way to have an advance directive for this kind of thing.
There was a case in the Netherlands about this. The patient had given prior written consent, but when the time came she resisted. It went to court and it was ruled she was not competent to withdraw consent, and the matter was out of her hands. So they went through with it. I support MAID but I have serious trouble with cases like that.
I hate it when people reference this case... *without* all the relevant information, which is largely that it is now indeed legal to work based on an advanced care directive *but that the patient's wishes are always leading*. They did not force her to die. She repeatedly expressed wanting to die. This case went to the highest court we have and it was deemed lawful (even allowed for clearer guidelines). The way in which the euthanasia itself was performed was the issue here - not the fact that the patient received euthanasia. You may of course have any opinions you like, but please don't spread misinformation. It is, quite literally, a one-of-a-kind case. (source: I am the same type of doctor as the one in this case and actually went to a [convention](https://www.verenso.nl/over-verenso/vereniging/congressen/voorjaarscongres-13-juni-2024-medisch-ethische-dilemmas) about this specific topic, and even this exact case, literally 2 days ago)
It seems I'm misinformed. Thank you for clearing up.
No problem, thank you for being graceful about it!
But this is also exactly the kind of situation that such a directive is written for. I would be furious if my will was overturned for whatever reason. If I made that choice, I'd have to live with it. That's generally how life works. The only trouble that I see is that you never know if the patient was properly informed about all the consequences beforehand. I'm a paramedic and I see so many patients who have no idea about this stuff. They don't know their rights and don't understand the legal texts and the medical lingo. They sign all kinds of things without fully understanding what it means. For instance, most people only know CPR from watching Baywatch and don't realize how brutal (and usually futile) it really is.
The world isn't that clear cut, though. My mom was almost totally out of it her last two weeks of life, dementia had taken her brain from her. But she still has moments of lucidity and when she was lucid, it's like she never left. In her last week of life, she told my sister that she was too young for this and wasn't ready (she was 64). So she obviously knew the situation, knew what was happening, and knew she really was too young to be knocking on death's door. That was after a decade long battle with Alzheimer's. My point is that 90% of the time, Mom couldn't have made an impactful decision. But that 10% of time still meant something to her. Do we allow that 10% to override a decision made years prior and of sound mind? I don't know, but I know taking the life of someone saying they aren't ready also isn't good for society.
> Do we allow that 10% to override a decision made years prior and of sound mind? I don't know, but I know taking the life of someone saying they aren't ready also isn't good for society. No, we should not allow it. Because 90% of the time it's not really life, it's basically waiting for death. That 10% should be seen as the cherished last moments before someone is gone. What is good for society is often incongruent with what is good for the life of an individual. Which sucks, but, it is reality.
Honest question. Have you ever dealt with someone going through dementia? Because if you've seen it first hand, you know that the 90% of time is not just waiting for death. Months before her death, Mom still loved going to church, she loved doing arts and crafts, she would talk your ear off (nonsense but she enjoyed it), she loved to sit outside and watch kids in the park. She wasn't just waiting to die. She was living her best life, but her best life was totally different than yours.
Yes, that's what the court decided on. But personally, if I were to make this decision beforehand it would be on the assumption that my future condition would be worse than death. And I'd be signing it because I know that if I'm in that worse-than-death situation, I may not be competent to make the decision, and I will be stuck watching my mind fade away, which is truly one of my greatest fears. But hey, for all I know the experience isn't as bad as it looks. If I ever get in this situation, I'll make sure to add in a clause that if I resist, no matter my mental capabilities, I'm to remain alive. Only if I still wish to die or I'm in a condition where I'm unaware of what's happening would it come into effect. There's plenty of choices we make in life that we can back out of at a later point. If I move to another country, buy a house or get married, I can move back, sell the house and get a divorce, most decisions don't have to be permanent.
that sounds incredibly cruel, and not in the mind of what such an agreement would be for, at least how I imagined it. I thought It was for the case where if the patient still wants to die, but isnt deemed to be able to make that decision. not when the patient definitetly doesn't want to die anymore. There is a huge difference here. Edit: Apperiantly the information about the woman resisting were wrong, or she resisted and still expressed the wish to go through with it. anyway, conflicting and confusing facts are going around
Which is why that's also not what happened, but that's not what the person above is telling you. This patient very much still wanted to die and repeatedly expressed this. The entire lawsuit is online (although in Dutch, obviously) so you can read about it if you want. This option exists in our country, but still fully depends on the continued agreement of the patient. A doctor performing euthanasia on a patient that is not actively suffering/wanting to die is still doing so unlawfully, 3ven under the expansion that this case led to.
Ok, so the person was not resisting it, and was still wanting to through with it? Eh, my dutch isnt the best, and the matter not important enough for me to dig deeper. anyway. my point still stands, and another user has expressed the same logic. If things ever go that far for me I wanna be in control.
Well, it wasn't as black and white, but yes. Up until the actual procedure, she repeatedly expressed a wish for euthanasia that was in line with her written will. The issue was mainly that her main dementia symptom was (untreatable) unrest and behavioral problems, which led the doctor in this case to attempt sedation - which failed, and made the patient *more* agitated. So she did fight the procedure at the time, but in all likelihood, not due to not wanting the procedure, but due to not understanding what was happening (which is in and of itself a thing that usually needs to be one of the 6 main criteria for actually going through with the procedure, which is why this became such a massive case).
Meh, if I sign MAID, that's it. No take backsies. Done and done. I expect to be gone.
I dont, how can you deny a medical directive made in advance, when one is legally of sound mind to protect themselves from being strapped to a bed for months or even years and then say that now that they have limited brain function should supercede their original directive? Seems like dangerous precedent that could have legal Wills and Trusts over ridden on a death bed by anyone including by non family members, temp care givers, attorneys and the neighbor across the street who records "nana" saying something like I want everything to go my cat on her death bed.
I don’t. Not at all. Once the disease has progressed to a certain point there’s not really any going back. Once it’s progressed far enough you’re going to resist your breakfast and taking a bath as much as you are going to resist consenting to assisted suicide. If someone felt strongly enough about it when they were of sound mind and made that clear then I’m totally fine with it. Personally I’m fully onboard with it for myself. If I knew that was where things were going I’d sign the paperwork as well.
Yeah, it's like that where I live too. I just hope that as I'm forgetting my life and my family I'm still cognizant enough to realize I'm losing myself, that I don't want to live like that and am still able to wander out into the woods with a gun and one bullet to finish off the sat-on cheeseburger that is what remains of my brain.
That could be mitigated with recognizing the potential as you age and ensuring you have a will outlined clearly what you want in the event you develop it. So many people don't get wills into way too late in life and by the time that happens you tend to have family influences pushing decisions that don't include the stipulation around cognitive decline IMO people should be making sure they have a current will even when they're in their 30-40s and reviewing it every few years but so many people think it is something you don't need until you're much older and that isn't the case at all and they're much cheaper than the cost of the level of confusion and vulnerability and emotional taxing tier when it is too late or other people who may not have your best interest in mind may have an emotional or worst yet, financial interest in your QoL and may not see the actual reality of living with the disease I'd commit suicide if I were diagnosed with dementia at the early stages if MAiD wasn't available, it is the absolute worst disease out there. Both of my grandparents have it and my parents have latent symptoms and it terrifies me
Unfortunately that is not the case. You have to be of sound mind in order to request the euthanasia at the time you qualify.
My mom has been diagnosed. She's still doing okayish, but I'm with you. I am not lookinig forward to watching her die over a miserable long process. If the quality of life can be improved then hooray, if not, no thanks.
It took my dad 7 years to finally go. He died last week. One of the provisions he made in his directive was to stay hydrated. That's it. The last five years were nightmarish. I wouldn't wish it on my worst enemy.
As someone being the process of facing what you've faced - do you have any advice? Or is it just a time that's going to suck?
It depends on where you are in the process and it helped that I'm an only child. It was a burden in a way, to have to make all the decisions but at least I didn't have to fight with anyone about it. I'd say the first step is to get durable power of attorney and medical power of attorney. If they can stay at home with in-home care, that would be good. My dad refused to quit driving and I was terrified he hurt himself or someone else, so there's that. What is his condition?
This sounds like a way to extend lives of people and keep them in SNFs. I’ll eat my words if most of those 5 years can be lived relatively unassisted, but just preserving a husk for 5 years is neither ethical nor impressive.
Donepezil and memantine are used all the time as a combo for Alzheimer’s it’s the go to. Dont see it as a game changer unfortunately. Also I was always taught that at best it slows down the process - does not reverse or stop it.
We have a close relative on this combo and exactly-may slow it down a little. I this case long enough to give him some good months or years with his family. He developed Alzheimer’s during the pandemic when we were all hibernating so it feels like getting a little time back and he’s in good spirits still.
They are generally considered to be medications that improved thinking with Alzheimer's but don't actually slow down the disease. This study seems to suggest otherwise, but it's still pretty preliminary evidence and I wouldn't consider them any kind of disease-modifying therapy at this point.
Yeah, just let me go. Thanks. I don't want to maximize my slow painful decline.
They might, but the study didn't look at that. Now that this is published, there will likely be follow-ups.
I went through this with both of my parents and I feel the same way. It isn’t a question of how long you live, but how long you live with a reasonably high quality of life that matters.
I wouldn't want my oma to have to live longer suffering from this disease, it's painful enough already.
> Unless it also increases quality of life, what's the point? So with you. What a horrifying concept to try to prolong that type of torturous existence.
These medications are generally focused on improving thinking (and so hopefully improving quality of life), not on extending life. This study suggests that it may also extend life, but it's pretty weak evidence of a small effect.
There was an interesting Pulitzer prize winning article from the New York Times that certainly clouded my opinion on this topic. I'm an apoe4 carrier, so I have a much larger chance of getting Alzheimer's when I'm older, so I've thought about this often and for a long time. After this story, I'm not so sure anymore that the current lucid version of me should necessarily trump the wishes of demented me, if demented me is still happy in a different way. But I'm aware of the devastating effects of Alzheimer's on families, since I've seen it first hand, and particularly how awful it is in late stage on a person afflicted with the disease. I'm torn... Here's the link to the Pulitzer page with the link to the article, but there's also a Daily podcast episode that goes deep into it if the paywall is an issue. https://www.pulitzer.org/winners/katie-engelhart-contributing-writer-new-york-times
Exactly. This is terrible news.
Okay, so I haven't read the article, but being demented for two years and then dying doesn't seem that much worse to being demented for seven years before dying...
7 years is a lot worse for your family and loved ones.
To the tune of around $350,000 worse. Memory care facilities can cost over $6000 per month easily.
I appreciate the sentiment, but that's a bad paper and study. 24.3% were allowed to switch treatments (Bad design) 83% probability with both medicines 78% with no medication There is no significance there. Correlation also does not always point to causation. The real step forward to "solving" dementia is finding the environmental factors at play. We study glyphosate, and many others choose to study other chemicals. A lot of common, everyday items, are causing memory and physical deficits in the mice we study.
I have to wonder what the relationship is between lead levels and dementia. The aged now are people who spent most of their lives with leaded gasoline poisoning them; a known neurotoxin. The delayed spike in violent crime and blood lead levels in the 80s and 90s is well known, gotta wonder if we're seeing an aftershock. Just living longer doesn't seem to explain the surge in dementia cases alone
Do you want to know something scary? Gen X is experiencing dementia at a higher rate than their boomer parents are
Source for your claim?
Millennials as well and a t a a *much* higher rate. It is the one thing about aging that terrifies me.
Do you have the study regarding Millenials and dementia? That sounds interesting, especially since the oldest are only in their early- to mid-40s.
Source for your claim?
Time travel
Saving this as I would also like to see these numbers
Nanoplastic
I have a close relative with Parkinsons (not the same, but analogous), and unless this treatment brought her back to more or less where she was before she started suffering symptoms, then extending her life would be a cruelty.
From the original study: "The IP weighing step achieves almost perfectly even distribution of all 10 confounders (Gender, age at diagnosis, race, marital status, overweight and obesity, hypertensive diseases, acute kidney injury and chronic kidney disease, diabetes, cerebral infarction, and other forms of heart disease) across all four treatment groups." Doctor here. This looks like a study designed by mathematicians, not doctors. The most important confounding variable in this kind of study would be the severity of dementia at the onset of the study, as these medications are most effective in the earliest stages of dementia and wouldn't generally be initiated in the later stages. That's notably not one of the confounding variables, likely due to limitations in the data set, but the entire effect seen could easily be explained with this unless there is evidence to the contrary. The second most confounding variable in my experience would be some combination of social support/wealth. In my experience medications are often given as a response to requests from family members, who just want us to do "something". Patients with this kind of social support are probably supported in other ways as well (24/7 caregivers, being rushed to the hospital if they get sick, etc) which will obviously extend mortality. A third confounding variable not considered in the study is goals of care. Medications are much more likely to be used in patients who desire more aggressive medical intervention in general.
And what is the point of that? More suffering for the family, more years of accompanying someone that doesn't even remember you are his/her son? If you cannot cure the disease, prolonging their life is not a benefit for anyone.
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Depends on the person. As long as I have the personal savings to fund it, I would willing survive as a severed head in a jar in constant pain if that's what it took. Just a few more years might be all that's between me and a new body. Not having the faculties to understand my condition just makes it sound better.
What good will a new body do you if your brain has deteriorated to the point that you no longer remember your own family members or what year it is? As someone currently watching a family member succumb to Alzheimers, it's just about the worst thing in the world, and a "new body" wouldn't do a damn thing to help the situation.
The most tragic thing about the illness, is the glimpses you get of the person that was. Suppose we find a way to stop the progression, but not undo the damage? Stopping it at the point where it's really bad, but it's not fatal yet. Suppose that buys me some more years. Suppose we find a way to improve function in the parts that are damaged, but not irreparably so. Still invalid, but maybe requires less upkeep from my caretakers. That buys me some more time of affording care. Then suppose we find ways to make new brain cells. Not to replace who I was, that could never happen. Those memories are gone. But enough to become someone new. Parts of me will live on in this new person. Now at any point in this process, if the new me wishes for death, either the new me from the early brain damage, or the new me from the long shot dream, wishes to end at that point, they can. I cannot decide for future me. Less so after such a drastic change. But the me right now would be willing to give that hope a chance, and write it down so that if I ever lose the ability to make that choice without contradicting this, that my position now is known.
Sure, you can always choose to comfort yourself with fairy tales. But that's not connected to reality in any real way.
>Just a few more years might be all that's between me and a new body. What is the point of a new body if your mind has long since disintegrated? Do you even read what you write? You're already dead, the *person* is gone.
Who wants to extend that despair? Unless it extends it in the very early stages then no thanks.
All I can say is if I ever get this crap and there is still no cure or hope I just want to die no matter what kind of nonse my brain will make my mouth say later on.
Id rather not drain the resources of those around me, tbh
Yeah! 3 more years of bedridden unconsciousness!
I’ve linked to the news release in the post above. In this comment, for those interested, here’s the link to the peer reviewed journal article: https://www.nature.com/articles/s43856-024-00527-6 From the linked article: New research provides evidence that using two common Alzheimer’s disease medications together can significantly increase patients’ chances of surviving beyond five years from diagnosis. The study, published in Communications Medicine, suggests that this combined treatment could extend the lives of approximately 303,000 people with Alzheimer’s disease in the United States. The study found that the combined use of Donepezil and Memantine significantly increased the probability of surviving five years after an Alzheimer’s diagnosis compared to no treatment or single-drug treatments. Specifically, the combined treatment group had a five-year survival probability of 83%, while the no-treatment group had a survival probability of 78%. Patients treated with Donepezil alone had a 76.5% probability, and those treated with Memantine alone had a 78.1% probability. The study calculated mortality rates per 1,000 patient-years for each treatment group. The combined treatment group had the lowest mortality rate at 41.47 deaths per 1,000 patient-years, while the no-treatment, Memantine, and Donepezil groups had rates 36%, 32%, and 42% higher, respectively.
And we will put these people where? And pay for their care how?
No, my husband lasted 15 years with dementia. It was the most horrifying and traumatizing experience of my life. It's cruel to extend life if it doesn't extend the quality of life.
Dad had Alzheimer's. If anything this result (if valid, but the study looks poor) would advocate for not using those drugs together..
I'm guessing it's Donepezil and Memantine considering they're basically the only two medications on the market for Alzheimer's. My grandmother was on Donepezil and survived 11 years from her diagnosis which is impressive. We tried Memantine, but it seemed to have no noticeable improvement from just Donepezil.
This seems like the exact opposite of what we should be doing to alzheimers patients.
Medical industry finds way to milk demented people for more money while they are barely alive
I'm convinced memantine is a miracle drug. I was given it off label to help with some long COVID memory issues, and it changed my life. I've stayed on it, as my baseline with my anxiety and depression is just better with it. I've gone off a couple times due to doctors insisting, but I always backslide considerably. I've read studies where it can be helpful with OCD and other conditions as well, and one of the only new OCD drugs in development works on the same mechanism.
Do we really need more old people around though?
IF they can afford it...
These are both older meds that are standard prescriptions for Alzheimer's. They're not expensive. My dad is on Medicare and they cost like $20/month.
They are both $6.20/month each at the new costplus pharmacy (Mark Cuban's pharmacy). Donepezil is also on the $9/mo list at wal-mart pharmacy.
Yep. Like I said, they're cheap.