Both of my grandparents were diagnosed with Alzheimers a few weeks ago. The disease had brewed inside them for several years, but nobody in my family knew they had it until it became severe.
Unfortunately, neither of my grandparents understand how dysfunctional their brain is. They still have the mindset that they are spry 70-year-olds, when in reality they are in their mid 80s and incapable of caring for themselves. We'd like to move them into a nursing home, but they reject the idea because they don't think anything is wrong with them.
I'd like to imagine this wouldn't be an issue had we detected the disease early enough. Early detection might not prolong life, but it certainly makes the transition to death easier for those involved.
I watched my father fade away from Alzheimers over the course of 5 years before he passed. Based on anecdotal stories in a support group, we were very lucky that he realized early on that something was wrong and he was very cooperative throughout. Other families in the support group experienced everything from lighthearted denial to emotions running amok.
Personally, I want some solid tests so I can have reliable information to make sure I end my days as myself.
My mum was diagnosed with it last week. My gran had it too. Its by far the worst disease I’ve encountered, it takes away everything that makes a person who they are and leaves them with nothing. The sooner we understand what’s causing it and the fewer people have to deal with it’s horrendous consequences the better.
I have an idea that's been floating around in my head for a while, and I don't know how I feel about it. So I'll float it here with a note that I am not strenuously advocating for the position I'm about to express, and instead wish to have it discussed.
I have the feeling that our modern medical obsession with keeping the body alive for so long is leading to negative outcomes. The rate of Alzheimer's diagnoses increases dramatically after about age 70[1]. In the US, we began to see the average life expectancy increase past 70 in the 1950s, and is now approaching 80[2]. As a result, I think the current crop of people who are alive are among the first to see the effects of truly advanced age. Prior to the 1950s, longer life was always seen as a good thing: you had more time to enjoy relative good health. Since few people lived into their 70s and beyond, we didn't see the "bad things" coming. Now that people are living into their 70s and beyond, we start to see the horrible effects of advanced age. So the question, which again I don't put forward with much conviction: is continuing to put forward the preservation of life worth it given the extreme decline in quality of life that we see past the age of 70? The gut answer is "obviously yes," but I think we are the first people to have to truly grapple with this question, as we watch our elders mentally fall to pieces while their bodies chug along. Is that gut answer just the result of centuries of trying to get past year 70? Now that we're past it, should we re-evaluate? I have a very close relative in his late 60s going through Alzheimer's right now. Would it truly be worse if he had passed away a couple years ago?
The key word here is "good health". If you start shifting from "living as long as possible" to "living with the most dignity up until the end", you end up questioning euthanasia, but also how people live post work-life: typically, how people are going to live decently through their last stage post 60s, can they enter a stage where they are relieved from the stress, pain, etc. You can't just say "well let them die earlier" if you don't provide some form of hope of relief for their last years.
Today I'd argue that the growing lifespan is used as an argument to make people work longer, which means in worse physical conditions. The "Work until your death" motto (the curse of people living in poverty) is not great for a healthy and attractive society. Questioning it ends up in a heated political/societal/philosophical discussion pretty quickly. And we're definitely not heading in the healthy direction: not because we don't want to shift the medical institution, but because we need a more profound society change. From a purely economical PoV, it's great that people die before around the beginning retirement, from a societal PoV it's a disaster.
Increases in lifespan correlate fairly strongly with increases in healthspan. I think we should invest a lot more into something like SENS to further improve our healthspan. I also think that we should make medically assisted suicide easier.
> As a result, I think the current crop of people who are alive are among the first to see the effects of truly advanced age.
You’re mistaking average for median life expectancy. People lived to older ages in the past. But lots of babies died, so the average life expectancy was way down. Add a lot of zeros to a number series and it gets pretty low.
Ancient comedy even had a stock character, sexex iratus: angry old man. Certainly there are many more very old people now, but it wasn’t something totally unknown.
The aging of people has also coincided with a decline in our physical health and diets. Strength is declining year on year: we have grip strength measures for college age students since the 1980s and it is a steady decline. Diets are worse, people are much fatter and with more health problems such as type 2 diabetes.
Certainly it is correlated with type 2 diabetes, and with obesity in mid life. (Not in late life, but this may be because sudden weight loss is a precursor of alzheimers https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6205180/)
There is more to this than just age. Our lifestyles increasingly leave us hobbled by ailments at young ages, and the medical system patches it up and lets us live through them longer. But this expresses in much more old age morbidity than would otherwise be biologically necessary.
Why is it that some people survive to 90+ without significant mental deterioration? My grandfather is 94 and reads the news, does crosswords and sudoku, and plays poker and bridge, at a level comparable to when he was 60. His knees have deteriorated so he stopped jogging 20 years ago, but he still walks and swims.
It's worth pursuing longevity science if we can help more people age this way.
Humans should live 500 years. Death is a disease. Aging is a disease.
We're not close to fixing this, and barring some tectonic shift in our capabilities, probably won't see substantial change within our lifetimes. But to take the stance that death and aging are acceptable seems so medieval to me.
It's a valid concern, and to answer your concern researchers often use Quality Adjusted Life Years (QALY) when measuring the effectiveness of treatment.
I wish I had more time to pull up references for you, but I believe that the answer to your question is "yes" -- extending people's life through intervention usually gives people more years of quality life and usually has little effect on the number of years of poor quality life.
> is continuing to put forward the preservation of life worth it given the extreme decline in quality of life that we see past the age of 70?
The breakthrough here is in a diagnostic test for Alzheimer's. You are making a generalization based on the assumption that this information will ultimately extend life rather than improve the quality of life. For jurisdictions that allow medical assistance with dying, this information can plausibly result in the opposite effect.
Not only do we attempt to extend life by any means irregardless of quality of life, we are encouraged by high costs of education, real estate, child-rearing to toil away the best/healthiest years of our lives. It's definitely a good opportunity to rethink our priorities.
I think the life expansion is merely a byproduct of other things that have ultimately led to a higher prevalence of Alzheimer’s and other amyloid plaque based diseases.
We have a few factors that have greatly attributed to this increase in life and increase in mental illnesses: decrease in tobacco (specifically smoking) use, increase in processed food eating, increase in life sustaining medicines, decrease in overall activity.
Tobacco: on one hand we know that smoking raises chances of having a shorter life span as it really accelerates cellular inflammation and deterioration. (1) On the other the stimulant aspect of nicotine helps the brain continue to stay active and helps resist atrophy. Personally, I notice more and more people I interact with on antidepressants. My parents and grandparents generations probably suffered the same levels of depression (more or less) but moderated this with smoking.
Processed Foods:
Modern processed foods started to flood grocery stores after the Second World War and became the staples of the American diet. Natural fats were replaced with unnatural and chemical based preservatives were put in many goods to increase shelf life. We know empirically that these foods also (like smoking tobacco) increase all cause mortality. Alzheimer’s prevention advice typically advocates for a diet removing such items. (2)
Better Medicine & Decrease in Activity: these two factors may need no introduction but we know that the older we get the less stem cells we have and the worse our cellular health is overall. Moderate Exercise helps slow the death of such cells. (3) Again, this is circumstantial, but all of the people I personally know with Alzheimer’s and other amyloid plaque based diseases did not lead active lifestyles and I would define their lifestyles as quite sedentary.
I work in this field and whilst it's true that there is no direct medications that can seriously slow or halt the progression, there are effective avenues for slowing it via diet, exercise, reduction of stress factors: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5546647/
Early identification absolutely matters, the question is HOW early. 5 years doesn't do much, 15 years? You can change your entire lifestyle and the changes can take effect with that much time.
For the individual yes it would still be bad news and folks likely won't want to get the screening. For the potential development of a therapy, identifying it early would let you have a pool of candidates to be tested.
Early identification allows you to better plan what the remainder of your life looks like for you and your loved ones, even if a protocol is not available.
As someone who has had to coordinate end of life care more than I’d like to have had to, this is invaluable.
There are plenty of diseases we can detect but not, yet, treat. There are other uses for such knowledge. The diagnoses person can adapt their lifestyle to accommodate the inevitable disease progression. That directly aids the individual. And knowledge of the person's inevitable decline can be used by the rest of society. Children can make necessary arrangements. Safety measures can be put in place, preventing unnecessary injury to the individual and others. If someone has been diagnosed with an inevitable rapid onset of Alzheimer's, they probably shouldn't retire to a cabin atop a mountain accessible only by helicopter.
“Early diagnosis is important because it could offer more opportunities to treat the disease.
Dr Rosa Sancho, head of research at Alzheimer's Research UK, explained that previous clinical trials of drugs had failed because the patients enrolled in them were too far advanced in their illness, and by that time it was "too late".
The scientific field is already doing a ton - Neuro is one of the most active areas of research right now. Behind COVID that is, currently pretty much everything is on hold for COVID. Pre-COVID however oncology and neuroscience were already among the biggest focus areas of research.
One of the basic problems is that we lack a fundamental understanding of how the disease works, so throwing more money at it gets diminishing returns beyond a point. It's like the war on cancer in the 1970s. We threw tons of money at cancer research which basically consisted of trying more newer combination chemotherapies in greater amounts and in new permutations trying to find the combination of chemicals that would eradicate all cancers. That only got us so far. However, at the same time, with a lot less funding and public support, scientists were making headway at understanding cancer not necessarily as a cellular disease, but as a genetic disease. By realizing that cancer is driven by genetic mutations, those scientists paved the way for the vastly more effective treatments and rush of immunoconcology/personalized/targeted therapies we see today. Throwing more money at Alzheimers at this point basically all but guarantees more trials of amyloid beta inhibitors at earlier stages and with bigger trials. We've already burnt tens of billions of dollars on that. The basic research to understand the disease is actually cheaper in the long run than running more of those clinical trials, but it's a stochastic, slow process with unclear goals and timelines.
> We should be doing a lot more research into this disease.
Trying to actually pin down hard numbers is difficult (searches invariably lead you to the cost of Alzheimer's disease rather than the cost of Alzheimer's research), but it looks like we're already at several billion dollars a year on Alzheimer's research. If it hasn't cost more than the Apollo project already, it likely will by the end of this decade.
Life expectancy in India is about 10 years shorter than e.g. the US and other developed countries. As such you'd expect to see far less Alzheimers for the simple reason that most people get diagnosed at an advanced age.
That's before taking into account potential differences in whether or not people are diagnosed.
That said, turmeric (and especially curcumin) is a subject of study. But these studies also suggest it is unlikely simply eating turmeric helps, as it's not absorbed well by the body and the amounts needed would be exceptionally high.
Despite this, quite a few people claim that Okinawa, Japan provides more than enough anecdotal examples of the effectiveness of turmeric in longevity. Additionally, the life expectancy of Okinawans has decreased as their diet has become more Westernized and similar to mainland Japan. Okinawans traditionally eat a lot of sweet potatoes, seaweed, soy, lean pork, fish, and a lot of turmeric, ginger, and green tea. The caveat is that each ingredient in isolation usually fails to show a measurable benefit.
Maybe I read the original research article incorrectly, or maybe this BBC piece is discussing something additional, but my impression after reading about it more closely was that this test is actually discriminating Alzheimer's from other forms of dementia, not Alzheimer's vs no dementia.
I haven't thought this through yet but it seems interesting and important but also not quite how it's being portrayed in the media, and not quite as significant in some ways.
Depends how many false positives and false negatives, but if there's 4% of false negatives and there's, say, 1% of the tested population that has the disease, then even a positive test may mean you have only 20% chances of being actually positive.
(someone double check my math, but the general idea stands, I think)
The actual data is more complicated than "96% accurate", but I'm not the best person to deep dive on the numbers and give a better analysis.
However from reading the abstract of the actual study, it seems the TLDR is "more accurate than current ways to test, and significantly cheaper too" - which would be a great step regardless of if it's not quite as perfect as a vague "high % accurate!" makes it sound.
Unfortunate that we have thrown billions upon billions and not a single viable treatment has made it out the pipeline. Truly one of the diseases that has escaped humans, thus far.
Age-related mental disorders are the final frontier for the human species.
Heart problems are basically mechanical problems, we're guaranteed to fix them in the next 100 years, if only by printing new hearts and blood vessels. Cancer is a cluster of rogue cells, and just it's a matter of time before we can focus poisons, blades, irradiation, and nano-bots precisely enough before treatment becomes as routine as annual dentist visit. Similarly bacterial infection - it's just a foreign object that needs to be killed with some precision. Viruses are trickier but maybe not that much - killing infected cells seem like it would do the job.
Brains are complicated though, you can't just seek and destroy something that's wrong. It's not a given that we can fix them in the near future, and as all other diseases recede we will end up with close to 100% of people succumbing to brain disorders at the end of their lives.
[+] [-] pubby|5 years ago|reply
Unfortunately, neither of my grandparents understand how dysfunctional their brain is. They still have the mindset that they are spry 70-year-olds, when in reality they are in their mid 80s and incapable of caring for themselves. We'd like to move them into a nursing home, but they reject the idea because they don't think anything is wrong with them.
I'd like to imagine this wouldn't be an issue had we detected the disease early enough. Early detection might not prolong life, but it certainly makes the transition to death easier for those involved.
[+] [-] entangledqubit|5 years ago|reply
Personally, I want some solid tests so I can have reliable information to make sure I end my days as myself.
[+] [-] FuckButtons|5 years ago|reply
[+] [-] coldpie|5 years ago|reply
I have the feeling that our modern medical obsession with keeping the body alive for so long is leading to negative outcomes. The rate of Alzheimer's diagnoses increases dramatically after about age 70[1]. In the US, we began to see the average life expectancy increase past 70 in the 1950s, and is now approaching 80[2]. As a result, I think the current crop of people who are alive are among the first to see the effects of truly advanced age. Prior to the 1950s, longer life was always seen as a good thing: you had more time to enjoy relative good health. Since few people lived into their 70s and beyond, we didn't see the "bad things" coming. Now that people are living into their 70s and beyond, we start to see the horrible effects of advanced age. So the question, which again I don't put forward with much conviction: is continuing to put forward the preservation of life worth it given the extreme decline in quality of life that we see past the age of 70? The gut answer is "obviously yes," but I think we are the first people to have to truly grapple with this question, as we watch our elders mentally fall to pieces while their bodies chug along. Is that gut answer just the result of centuries of trying to get past year 70? Now that we're past it, should we re-evaluate? I have a very close relative in his late 60s going through Alzheimer's right now. Would it truly be worse if he had passed away a couple years ago?
I don't know.
[1] https://en.wikipedia.org/wiki/Alzheimer's#Epidemiology
[2] https://www.macrotrends.net/countries/USA/united-states/life...
[+] [-] ux|5 years ago|reply
Today I'd argue that the growing lifespan is used as an argument to make people work longer, which means in worse physical conditions. The "Work until your death" motto (the curse of people living in poverty) is not great for a healthy and attractive society. Questioning it ends up in a heated political/societal/philosophical discussion pretty quickly. And we're definitely not heading in the healthy direction: not because we don't want to shift the medical institution, but because we need a more profound society change. From a purely economical PoV, it's great that people die before around the beginning retirement, from a societal PoV it's a disaster.
[+] [-] adrianN|5 years ago|reply
[+] [-] graeme|5 years ago|reply
You’re mistaking average for median life expectancy. People lived to older ages in the past. But lots of babies died, so the average life expectancy was way down. Add a lot of zeros to a number series and it gets pretty low.
Ancient comedy even had a stock character, sexex iratus: angry old man. Certainly there are many more very old people now, but it wasn’t something totally unknown.
The aging of people has also coincided with a decline in our physical health and diets. Strength is declining year on year: we have grip strength measures for college age students since the 1980s and it is a steady decline. Diets are worse, people are much fatter and with more health problems such as type 2 diabetes.
One of the theories of alzheimers is that it is a form of diabetes. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769828/
Certainly it is correlated with type 2 diabetes, and with obesity in mid life. (Not in late life, but this may be because sudden weight loss is a precursor of alzheimers https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6205180/)
Have a look at this chart. Japan has one of the oldest populations in the world, and yet its alzheimers death rate is less than 6x that of the usa: https://www.worldlifeexpectancy.com/cause-of-death/alzheimer...
There is more to this than just age. Our lifestyles increasingly leave us hobbled by ailments at young ages, and the medical system patches it up and lets us live through them longer. But this expresses in much more old age morbidity than would otherwise be biologically necessary.
[+] [-] cowmoo728|5 years ago|reply
It's worth pursuing longevity science if we can help more people age this way.
[+] [-] echelon|5 years ago|reply
We're not close to fixing this, and barring some tectonic shift in our capabilities, probably won't see substantial change within our lifetimes. But to take the stance that death and aging are acceptable seems so medieval to me.
[+] [-] bryanlarsen|5 years ago|reply
I wish I had more time to pull up references for you, but I believe that the answer to your question is "yes" -- extending people's life through intervention usually gives people more years of quality life and usually has little effect on the number of years of poor quality life.
[+] [-] sradman|5 years ago|reply
The breakthrough here is in a diagnostic test for Alzheimer's. You are making a generalization based on the assumption that this information will ultimately extend life rather than improve the quality of life. For jurisdictions that allow medical assistance with dying, this information can plausibly result in the opposite effect.
[+] [-] tcbawo|5 years ago|reply
[+] [-] adaisadais|5 years ago|reply
We have a few factors that have greatly attributed to this increase in life and increase in mental illnesses: decrease in tobacco (specifically smoking) use, increase in processed food eating, increase in life sustaining medicines, decrease in overall activity.
Tobacco: on one hand we know that smoking raises chances of having a shorter life span as it really accelerates cellular inflammation and deterioration. (1) On the other the stimulant aspect of nicotine helps the brain continue to stay active and helps resist atrophy. Personally, I notice more and more people I interact with on antidepressants. My parents and grandparents generations probably suffered the same levels of depression (more or less) but moderated this with smoking.
Processed Foods: Modern processed foods started to flood grocery stores after the Second World War and became the staples of the American diet. Natural fats were replaced with unnatural and chemical based preservatives were put in many goods to increase shelf life. We know empirically that these foods also (like smoking tobacco) increase all cause mortality. Alzheimer’s prevention advice typically advocates for a diet removing such items. (2)
Better Medicine & Decrease in Activity: these two factors may need no introduction but we know that the older we get the less stem cells we have and the worse our cellular health is overall. Moderate Exercise helps slow the death of such cells. (3) Again, this is circumstantial, but all of the people I personally know with Alzheimer’s and other amyloid plaque based diseases did not lead active lifestyles and I would define their lifestyles as quite sedentary.
(1) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4098701/
(2) https://en.wikipedia.org/wiki/Alzheimer's#Epidemiology
(3) https://www.google.com/amp/s/time.com/4776345/exercise-aging...
[+] [-] steve76|5 years ago|reply
[deleted]
[+] [-] hprotagonist|5 years ago|reply
we do not.
[+] [-] FL33TW00D|5 years ago|reply
Early identification absolutely matters, the question is HOW early. 5 years doesn't do much, 15 years? You can change your entire lifestyle and the changes can take effect with that much time.
[+] [-] ghransa|5 years ago|reply
[+] [-] toomuchtodo|5 years ago|reply
As someone who has had to coordinate end of life care more than I’d like to have had to, this is invaluable.
[+] [-] sandworm101|5 years ago|reply
[+] [-] melling|5 years ago|reply
“Early diagnosis is important because it could offer more opportunities to treat the disease. Dr Rosa Sancho, head of research at Alzheimer's Research UK, explained that previous clinical trials of drugs had failed because the patients enrolled in them were too far advanced in their illness, and by that time it was "too late".
[+] [-] brain5ide|5 years ago|reply
[+] [-] DoofusOfDeath|5 years ago|reply
- Whatever specific thing is being tested becomes a candidate for future interventions.
- It could give researchers a tighter pool of candidates for longitudinal studies.
- As others have mentioned: any treatments that require early intervention have a better chance of working. (Similar to cancer, I imagine.)
[+] [-] melling|5 years ago|reply
https://en.wikipedia.org/wiki/The_Bit_Player
Claude Shannon had Alzheimer’s. Nothing protects us from the disease. We should be doing a lot more research into this disease.
[+] [-] vikramkr|5 years ago|reply
One of the basic problems is that we lack a fundamental understanding of how the disease works, so throwing more money at it gets diminishing returns beyond a point. It's like the war on cancer in the 1970s. We threw tons of money at cancer research which basically consisted of trying more newer combination chemotherapies in greater amounts and in new permutations trying to find the combination of chemicals that would eradicate all cancers. That only got us so far. However, at the same time, with a lot less funding and public support, scientists were making headway at understanding cancer not necessarily as a cellular disease, but as a genetic disease. By realizing that cancer is driven by genetic mutations, those scientists paved the way for the vastly more effective treatments and rush of immunoconcology/personalized/targeted therapies we see today. Throwing more money at Alzheimers at this point basically all but guarantees more trials of amyloid beta inhibitors at earlier stages and with bigger trials. We've already burnt tens of billions of dollars on that. The basic research to understand the disease is actually cheaper in the long run than running more of those clinical trials, but it's a stochastic, slow process with unclear goals and timelines.
[+] [-] jcranmer|5 years ago|reply
Trying to actually pin down hard numbers is difficult (searches invariably lead you to the cost of Alzheimer's disease rather than the cost of Alzheimer's research), but it looks like we're already at several billion dollars a year on Alzheimer's research. If it hasn't cost more than the Apollo project already, it likely will by the end of this decade.
[+] [-] FabHK|5 years ago|reply
[+] [-] m463|5 years ago|reply
He said apparently the prevalence of alzheimers is less in india, where tumeric is found in much of the food.
(andecdotal evidence, but interesting)
[+] [-] vidarh|5 years ago|reply
That's before taking into account potential differences in whether or not people are diagnosed.
That said, turmeric (and especially curcumin) is a subject of study. But these studies also suggest it is unlikely simply eating turmeric helps, as it's not absorbed well by the body and the amounts needed would be exceptionally high.
[+] [-] cowmoo728|5 years ago|reply
https://www.alzheimers.org.uk/about-dementia/risk-factors-an...
Despite this, quite a few people claim that Okinawa, Japan provides more than enough anecdotal examples of the effectiveness of turmeric in longevity. Additionally, the life expectancy of Okinawans has decreased as their diet has become more Westernized and similar to mainland Japan. Okinawans traditionally eat a lot of sweet potatoes, seaweed, soy, lean pork, fish, and a lot of turmeric, ginger, and green tea. The caveat is that each ingredient in isolation usually fails to show a measurable benefit.
https://en.wikipedia.org/wiki/Okinawa_diet
[+] [-] graeme|5 years ago|reply
[+] [-] 0d9eooo|5 years ago|reply
I haven't thought this through yet but it seems interesting and important but also not quite how it's being portrayed in the media, and not quite as significant in some ways.
[+] [-] MikeCapone|5 years ago|reply
Depends how many false positives and false negatives, but if there's 4% of false negatives and there's, say, 1% of the tested population that has the disease, then even a positive test may mean you have only 20% chances of being actually positive.
(someone double check my math, but the general idea stands, I think)
[+] [-] swores|5 years ago|reply
However from reading the abstract of the actual study, it seems the TLDR is "more accurate than current ways to test, and significantly cheaper too" - which would be a great step regardless of if it's not quite as perfect as a vague "high % accurate!" makes it sound.
https://jamanetwork.com/journals/jama/fullarticle/2768841
[+] [-] donatzsky|5 years ago|reply
[+] [-] gzer0|5 years ago|reply
[+] [-] DenisM|5 years ago|reply
Heart problems are basically mechanical problems, we're guaranteed to fix them in the next 100 years, if only by printing new hearts and blood vessels. Cancer is a cluster of rogue cells, and just it's a matter of time before we can focus poisons, blades, irradiation, and nano-bots precisely enough before treatment becomes as routine as annual dentist visit. Similarly bacterial infection - it's just a foreign object that needs to be killed with some precision. Viruses are trickier but maybe not that much - killing infected cells seem like it would do the job.
Brains are complicated though, you can't just seek and destroy something that's wrong. It's not a given that we can fix them in the near future, and as all other diseases recede we will end up with close to 100% of people succumbing to brain disorders at the end of their lives.