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by jader201·1y ago·view on hn ↗
As someone with Alzheimer's being quite prevalent on my dad's side [1], I pay attention to pretty much any HN thread on Alzheimer's. But most of them end up not being super conclusive/actionable.

But also ack that Alzheimer's research has been going on for decades, and progress is slow. Still, I look for glimmers of hope anytime I see one reach the front page.

If fasting has even a chance at reducing the risks, would love to know more about the duration/frequency that is needed to be beneficial.

[1] All four of my dad's aunts + grandmother ended up with it, but none of the males to my knowledge, and my dad died at 76 having never been diagnosed with it. The males, however, died relatively young, so it's unknown whether they would've ended up with it.

9 comments
There are a lot of recent attempts to link Alzheimer's to metabolic diseases and disorders. Insulin dysregulation, liver diseases, LDLs and transport, immune dysfunction, inflammation or sclerosis during extravasation, etc.

We spent an awful long time chasing after amyloid and tau. There are enough eyeballs on these new ideas that I'm hoping we can find a preponderance of evidence soon.

Sticking to a keto diet these days is extremely easy, so I’d suggest trying that first before heading to water fasting which requires relatively more care and preparedness. (Disclaimer: I am not a doctor though and it’s highly possible I misunderstood the article, just offering advice based on familiarity with a keto diet and water fasting.)
As a health care worker at least let me assure you the ones who suffer from Alzheimer's in my honest opinion really have no self awareness of what they are going through. They are just in their own little world and slowly moving through life without much insight as to what they are doing. It is heartbreaking for the family and those who care, but for the individual it is not a painful existence.
I realize you likely mean your comment as a kindness and I appreciate that intent.

However, as the son of a mother who slowly died from early onset dementia, I can attest that just because the ego self has fractured and scattered into a million pieces does not mean that the afflicted person is in some peaceful state of not knowing. That they are somehow not suffering or in pain. It is just that the afflicted can no longer articulate their suffering in ways understood by the rest of us in consensus reality. If one pays close attention, the reality of their suffering is bright and clear.

One of many many examples was when my mother would compulsively pick up a pen and make rhythmic circles on and off for hours. I would watch her and wonder why. Turns out she had a severe (brutally painful) urinary tract infection and was trying to soothe her pain. She was a much beloved English teacher and writing was her refuge. She was doing her level best to alleviate her suffering.

The thought that a person dying from Alzheimer's is not having a painful existence is radically disconnected from reality.

I respectfully ask you and any caregivers for dementia patients to avoid conflating your own understanding of reality with the actual reality of your patients.

> The thought that a person dying from Alzheimer's is not having a painful existence is radically disconnected from reality.

While I understand your point I think you're talking from a perspective of the other extreme, the one where there indeed was a lot of pain but the person couldn't communicate it. Still, Alzheimer's itself mainly works in your head and it's probably more likely to assume that in most cases caregivers will have at least some means to see if patients are suffering.

The person you're replying to does probably have a lot of experience with sufferers, although, obviously, he also just states his anecdotal experience.

> I respectfully ask you and any caregivers for dementia patients to avoid conflating your own understanding of reality with the actual reality of your patients.

IMHO this would not help, but maybe even create a bigger gap between patients and caregivers. We are humans in the end, and the only thing we can do is to try our best to give them the best care and make the rest of their lives as good as possible. I think, what makes the difference, is being aware that any patient with Alzheimer's or some other kind of dementia could be in a position of not being able to communicate their pain in any way. But it doesn't help to generalize this, stopping to trust your feeling and assuming the worst.

That said, I’m truly sorry for the loss you experienced, and I hope you and your family find some measure of peace. I know how it feels. I hope I don't sound too rude or harsh, it definitely wasn't meant in that way.

You nailed it with this comment. Yes I was giving a generalized statement. I do believe the majority of patients are blissfully unaware and not suffering. They laugh and joke and tell the same story they enjoy telling over and over lol. There are some cases where they seem scared or panicked. In those cases you work on routines that they can fall into and communicate with the doctor and if possible use medications to make them more comfortable.

I worked in a advanced dementia facility for years. Ops mom having undiagnosed UTI is unfortunate but in facility it is much easier to spot for those who are experienced. The frequency of bathroom trips and believe it or not you learn the smell of a persons urine and bowel movements. So when things smell off you investigate.

I can't say I know exactly what the patients are experiencing but I have had years providing care for dementia patients and a huge part of that is family members. I really teach them about burnout and not to feel guilty asking for a break. I praise them for what they do. I am watching family members just as much as I am the clients (I am currently not in facility but work out in the community). Many of the family members are elderly also so may lack full understanding of everything. If they are crying or yelling things like that I discuss with the team strategies how we can make it easier for them.

So much to say here but your comment hit a lot of very good points. Many people genuinely care and want to help. Nothing is perfect and some cases are very hard to manage. I too am sorry to hear op struggled with his mom it is one thing to see it in a client and another to see it in a family member. I wish anyone experiencing it the best.

I am sorry to hear you had such an experience with your mother. Of course I made a generalized statement and that can not be true for everyone. There are also multiple types of dementia and dementia like conditions. Some forms do leave the person confused and scared and calling out and in rough shape for the caregivers perspective. But in general the vast majority of the clients I have worked with did not appear to suffer or be aware of their situation. I worked in an advanced stage dementia facility for almost 8 years.

When a population can not express what is wrong yes sometimes health issues get missed like your moms UTI. But with a lot of experience those things get noticed much faster. Having worked with someone for years as many clients did stay with us for years you get to know their routine very well. Suddenly they are using the bathroom non stop you question UTI. They suddenly start acting very strange - check for UTI. The system is not perfect but there are people out there that care and are doing their best to help those. I advocate for my clients and use my experience and knowledge to help these people get into the best situation possible.

When working with dementia patients you are not just working with the client but his family as well. I currently work in a community setting so see people at home and when I see the wife crying or yelling at the client I sit and ask how they are doing. I let them know that they are a good wife or husband and that getting upset does not mean they are bad. I then tell them that it is however important to recognize when they are burning out and getting frustrated. Thankfully for most of my clients there are services that can let the family get a break. We will do respite visits and the family can leave the house and get some errands done or just have lunch or relax. In those upset moments I help them through the situation and then discuss it with my team to try decide how to best help. Sometimes that means increased service. Sometimes it means they go to a respite facility for a week. Sometimes it even means they get placed into long term care facility.

I am drifting off on this post so again I am sorry about your mom. Dementia is cruel. Care is not perfect. But I genuinely feel for the majority of those who have dementia they just lack much insight as to what is happening.

Thank you for such a thoughtful, considered – and considerate – response. I appreciate your diligent attention to what is surely a highly demanding job. Thank you for your service.
My grandfather had Alzheimer's. My grandmother dementia.

My grandfather would, not uncommonly, escape from his care home. He'd be found, miles away, trying to "walk back home" -- and, despite his deterioration, he knew the routes, he was walking the right city streets to get to the right country roads, etc... He wanted to "get home" and make sure his garden was being tended to. Sometimes he'd have shit himself, or pissed himself, but had been walking for hours regardless. That isn't a painless existence. Through what I know of his experience alone, I've understood this to be deeply traumatic.

And my grandmothers experience was something else entirely. I believe I've commented on it here before, but her experience was also uniquely horrific. Bed-ridden, gangrene, do-not-resuscitate orders that were not acknowledged... I am terrified of what they went through.

Personally, I feel that our notions of "pain" don't really get even approximately close to what these patients endure.

When I went through this with my grandmother, I experienced that too. Like others said, it's important to note that in the later stages it may be hard for the patients to communicate their pain, so we cannot be sure, but at least in my anecdotal experience I would say that I can be pretty sure there was no acute pain involved.

The most important thing for me and others around her was to just vibe with her reality. Just give her the space. Not be mad, but laugh or help, again and again. Like you would do with a baby. Don't expect them to learn, don't expect anything.

Until the very end I think she had a good life. The end, obviously, will have been hard for her, because that's a time where they cannot even live their own little life anymore but probably experience higher pain in general, but that's what it is.

Thank you for your expert insight though I must confess--if this was meant to be reassuring it has the exact opposite effect... A disease that makes only your family suffer, wow. I thought cancer was bad.
To be fair, death seems pretty much the same.

That is, it's not the dead that are in pain, it's those left behind.

So, while I agree with you, it doesn't seem much worse than death, especially if the family accept/believe that the Alzheimer's patient is actually not suffering.

For example, if my dad lived long enough and ended up with it, had I been convinced that he actually wasn't suffering, it may be less heartbreaking as his son (but still heartbreaking for my personal loss of the relationship with my Dad, and him not knowing me).

It's hard for me to say, having not had someone super close end up with it -- only more extended family. So those closer/more affected may have other thoughts.

> So, while I agree with you, it doesn't seem much worse than death, especially if the family accept/believe that the Alzheimer's patient is actually not suffering.

While I agree that it’s not much different than death, it seems painful to know that family suffers the loss of the same person essentially twice

> it seems painful to know that family suffers the loss of the same person essentially twice

Speaking from second-hand experience -- that is, seeing my father experience the loss of his aunts/grandmother "twice".

One of his aunts was like a mother to him (his mother passed when he was 2, his father when he was 21). I feel that he really only suffered the loss once: when she succumbed to Alzheimer's.

The loss was mostly grieved then, and by the time she passed, he had already grieved. I'm not saying her death wasn't hard. But in a lot of ways, I feel like there was as much relief and peace, as there was suffering from her death. By the time of her death, she had been long gone anyway.

Of course, everyone is different, and every loss/Alzheimer's diagnosis is different. But it seems like you can lose someone you love in a number of ways, and often multiple ways, before their ultimate passing. And each one of those partial losses seem to add up to ~a single loss of mourning/grief, rather than experiencing full grief for each one.

Another example is simply having geographical distance from a loved one. Moving away (or them moving away from you) can result in experiencing (grieving/mourning) a loss. And then once they pass, you've already partially grieved, and the additional grieving is lessened from already having been distanced from them (vs. other loved ones that still live close, and grieve more from having them a part of their lives more frequently).

Again, this is just from my experience/observations from seeing how those close to me have grieved. Others may feel differently.

How would you know the difference between a lack of pain and a lack of ability to communicate it to you?
Maybe you only get to see the sufferers when their condition is already advanced? My Dad is in the early stages of Alzheimer's, and knows it, and is really down about it. He regularly goes off by himself to cry. It's pretty heartbreaking
That hasn't been my experience (n=1 thankfully, I hope it never increases involuntary). Lots of confusion, distress, trying to go outside/go back to where they lived when they were children, not recognizing the people around them ("he can't be my husband, my husband is young!").
They have plenty of time to suffer between diagnosis and not being able to be aware of the world at all though. Dad had years of depression due to the gradual decline before being incapable of communicating.
They have repeatet panic attacks, when they "wake up" in a foreign place, surrounded by foreign people. Think of "teleported to a strange city" every 3 minutes.
The end stages are not great for the individual or the family.
Neither are the gradual decline before that. At least there can be time to prepare for the inevitable.
sounds an awful lot just like people on the spectrum (note: that includes me)
imho everyone is on the spectrum, it's just a question of where (and possibly when)
What worked for me was doing two/three days of juice fast first. During this time you clear the colon. Once "empty" it is much easier to maintain the fast.

I usually the water fast for two/three days, and then do one day of dry fasting. If it goes really well I extend it by a day of two.

To get back to my regular diet (which is mostly "WFPB" https://www.doctorsfornutrition.org/general-public/what-is-w... ) from a dry fast, I usually take one day of fruit-only. This to gently start the GI back up.

I cannot recommend doing some fasting yourself enough. It really changed my attitude to food and "feeling hungry". I made some personal bests in sports while fasted!

The natural rhythm? Summer + Autumn feasting - Spring fasting with lean meats, then repeat?
>Alzheimer's research has been going on for decades

Based on some recent high profile cases so have massive scientific fraud.

Which rises the question: are we on a wild goose chase due to following fraudulent science from highly published "thought leaders" when it comes to Alzheimers disease?

On many other major disease categories we've had many major improvements from biologicals and immunotherapies. RA, MS? Compared to the past, they're a walk in the park. Cancer mortality dropping like a rock for the brutal killers of the past, glioblastoma is still a gnarly death sentence but there's hopeful news on the horizon even for that.

Alzheimers? Crickets mostly, biologicals where the error bars eat virtually all of the alleged observable effects? Sounds like we're barking up the wrong alley.

fyi, You can set up rss feed searches on pubmed and load them into your favorite rss reader for a much better, more up to date feed of what is actually being published around topics you care about. Its dramatically better than anything you will see on hacker news as long as you can get a good set of search topics so its a trickle of hits, nit a firehosex
There was an interesting article the other day mentioning a study where getting a BCG vaccine as an adult seemed to give a 75% reduction in Alzheimer's. The hypothesis being that it can be set off by an infection and the vaccine boosts the immune system. That's a bit of a simplification but the article is here https://www.theguardian.com/lifeandstyle/2024/dec/01/the-bra...
there are... probably better forums to be tracking the latest in biology research...
Are there any you can recommend, or are you just saying that from knowledge of the level of biological discourse here?
HN is the best place for this kind of "sensitive" topic in my opinion.

Youtube is full of self-promotion and "experts" that just try to rack up views. Good luck wading through that, and that's even if you find solid videos that aren't just "fad" shorts.

Reddit is, well, Reddit - I need not say more.

Trying to find information about anything medical on any search engine is a bust because there are millions of sites all offering medical information with no way for us to know their validity.

Scientific articles are also just glorified eyeball generators too, so can't trust them.

Reading the actual published papers is out of reach for most of us that aren't knowledgeable in the field.

Finally - real world Doctors are out of reach for most of us, and they'll only talk to you if you make an appointment. But even if you do, good luck having them take this sort of line of questioning/discussion seriously as it's not the normal and rote "diagnosis" function that they enjoy doing - even if they're up to date with recent research. Like lawyers, they safeguard their sacred priesthood's knowledge, and that's why they only "advise" you if you pay up.

>Reading the actual published papers is out of reach for most of us that aren't knowledgeable in the field.

Right, if we can even find the right publication search engine for the right area, then we're likely faced with a paywall with a dollar figure. I'd love a list of free resources for research.

level of discourse. you can just read journals