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Comment by mabbo | Hacker News Reader

Alzheimer's is the cruelest of illnesses and the loved ones of the victims suffer as much as the victims. The allure of this theory, in my view, is that if you could somehow turn this into a treatment, people would give you whatever money you demanded for it. You want $200,000? We'll find it, somehow, just make Mom remember who I am, please.

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The amusing thing about your "cynicism" here is that $200,000 would be a substantial savings compared to what happens now, never mind the huge value an effective treatment would provide.

In the US, the government (and thus society at large) bears much of the cost:

http://act.alz.org/site/DocServer/2012_Costs_Fact_Sheet_vers...

4-5 years of a nursing home vs cured alzheimer's isn't even a hard decision

Looking at ~350k-400k for my dad if he lives another 5 years. Given his spending before Alzheimer's 200k would be an easy choice for us even even from a purely cold financial perspective.

And you have fallen into a different statistics trap. The number that matters isn't the cost of treating the patient. What matters is the increased lifetime costs of a paticular disease over the average. We all have to die of something. Diseases like lung cancer are cheap. The patients are either cured or dead relatively quickly. Demential is slow. Costs pile on for decades, starting often with forced early retirement long before formal medical costs are noticed. But we still have to normalize for the fact that, be it cancer, heart disease or dementia, most all of us will eventually need expensive care for some number of years.

Nursing homes are among the cruelest and most in humane institutions, worse than prison in many ways. Anything that avoids nursing home days is worth it’s weight in gold.

I have worked in many as a care aid providin direct care to residents. I worked for 7 years in one facility that worked with advanced Alzheimer's and dementia like condition clients. I would not describe the nursing home as cruel or in-human, though to a person with sound mind it certainly would. The people who resided there simply could not live alone. They would soon be seriously hurt or die. So yes when they enter the facility they don't have all the same freedoms as you and I. It is not safe. They leave ovens on, let strangers have access to their money, go wondering in the night no regard to weather or other important factors and so on. Now on the family side of things they have been probably spending months trying to manage their loved one and at the same time are grieving the loss of that loved one as they watch the person they once knew fade away. Every hour for the family is spent wondering if mom or dad is safe at home and eventually their lives come to a halt and they start to experience care giver burn out. The facility provided a safe harbour for their loved ones. We ensured medications were taken on time. That they would get up in the morning and put on clean clothing and wash up as needed. We tried to entertain the residents with music, games and various activities. The facility I worked at made it so the families could finally breath and know their loved on me was safe at the end of the day. I hope others find the nursing homes they deal with to be the same experience.

There are indeed excellent facilities for elder care. But there are many horrific ones, and the difference between them can be hard for outsiders to determine (whether for families, or for yourself).

Case in point: My parents had one hell of a time finding good care for my grandfolk (incl. siblings of grandparents). In their state, there is an entire industry of corrupt nursing homes, which also have all sorts of "awards" for the excellence of their care. Just the tip of the iceberg: staff physicians who never, ever appear on site, yet who collects a paycheck by prescribing tranquilizing drugs for any resident at the facility's request, all sight unseen. The facility routinely dubs its residents as "troublesome" or "aggressive" to dope them up and 1) mean they have to provide no active care, because turnips in wheelchairs/beds don't do anything and 2) ensure a relatively quick decline in all residents, because total immobility is a great slow-acting poison, especially on the vulnerable elderly. Thus quick turnover and higher profits are ensured, all while labor costs are kept low. Eventually good facilities were found, the best of which was a wonderful VA program in a home with a live-in nurse, specializing in care for those with dementia. But not before the horror shows had taken their toll.

> staff physicians who never, ever appear on site, yet who collects a paycheck by prescribing tranquilizing drugs for any resident at the facility's request, all sight unseen

My mother and her siblings have had EXACTLY this experience with my grandfather – and they've had prior experience choosing nursing homes. It's horrible. They dope him up on who knows what medications for perceived illnesses without consulting family. Thank goodness my attentive and no-bullshit aunt discovered they were medicating him for "pneumonia" and "congestive heart failure" prescribed by a call-in quack for what turned out to be a bit of aspirated fluid. She forced them to get him off the meds and he returned to normal (modulo Alzheimer's) in days.

The whole industry is based around appearing like they're doing something to oblivious or disinterested families (which unfortunately exist), while doping their helpless patients into a slow meaningless death. There are good individuals (my folks made sure to make ties with them, else my grandfather would quite literally have died due to negligence by now), but the industry as a whole is rotten.

> quick turnover and higher profits

Why would turnover increase profits for a nursing home?

Often what another poster said: there's a large admittance fee and/or you sign all of your assets over. Combined with the Medicare/Medicaid issues cited by another sibling post, there's a strong financial disincentive to have residents live longer.

Most people don’t have a lot of assets. Medicare pays a decent reimbursement rate that declines over time. Medicare also pays for rehab tied to outcome, and nursing homes tend to have bad outcomes so they only get 90-180 days of that.

Once you’re off Medicare, if you cannot private pay (or once you run out of cash), you go on Medicaid. The county seizes your remaining assets and pays a very low reimbursement.

The ideal nursing home patient either has cash or requires short term rehab, and either leaves or dies in <180 days. The old ladies watching judge Judy or playing checkers are low margin.

Some also charge a $80k+ admittance fee. They try and make it sound nice by saying the fee is so they will never kick them out if they run out of money.

I would suspect there must be some fine print somewhere that states that you would be kicked out if you ran out of money eventually. The facility I worked at charged $4500 a month which was considered really cheap as another one near by had no problem charging $6500 a month but provided half the care my facility did, just a nicer setting along a lake with a beautiful view. At even $4500 a month it is $54,000 annually. I can also tell you things can move very slowly in the medical field for these elderly people so say if something big in the family did happen and they suddenly could not pay, that $80k would get eaten up very quickly as they tried to locate additional funds for that individual. The facility that I worked at only required a single months deposit. When people could not afford to pay my boss would often cut them deals to have them stay longer.

The quick turnovers are likely caused by being understaffed and underpaying employees. Both of which would help with profits.

My grandpa spent the last several years of his life with Alzheimers in a nursing home. Furthermore, I spent several years as a telephone technician, and I worked plenty in nursing homes. My overall impression (at least of the ones in my county) is that they are poorly managed and the employees are overworked, and presumably are very underfunded. My grandpa received excellent care, but that was because my grandma went in almost every day to check in on him. There were several occasions when she raised hell because he wasn't being taken care of properly.

Can you provide referrals and / or known good facilities? Direct email welcome.

The linked pdf says that (in 2012), end of life care for Alzheimer's and other dementia patients was $110,000 more expensive than a couple of types of cancer.

I remember a professor talking about the tobacco industry trials and they were talking about damages that the tobacco companies should pay to the state for increased healthcare costs due to lung cancer, and he said that the supremely ironic thing was that people who die from lung cancer at 45 have much less lifetime medical spending than people who die from most everything else at old age. He said exactly what you did, that people forget we all die of something, and the older we get, the more likely we are to have repeated long hospital stays or need long term care.

Obviously that isn't to say it's good for people to die young from lung cancer, but analyzing anything medical from a money perspective is tricky.

Thy dystopian Logan's Run [1] featured a society optimized for total lifetime cost, where everyone gets euthanized at a certain age. Not sure we want to go that way :)

1: https://en.wikipedia.org/wiki/Logan%27s_Run

If anyone has been looking at TauRX's phase 3 trials[1], methylene blue is ridiculously cheap, has been around for 100 years and stops Alzheimers progression better than any other drug. Tau is working on a slightly modified form that is basically putting it in a capsule and they'll sell it for $50 a pill probably, but that's the only way that anyone will believe it actually works.

Methylene blue is a potent antimicrobial that easily penetrates the blood brain barrier, so it working so well would be consistent with Alzheimers being an infectious disease.

[1]https://content.iospress.com/download/journal-of-alzheimers-...

Other studies of mild to moderate Alzheimer's patients showed no improvement with Methylene blue,

https://www.alzforum.org/news/conference-coverage/first-phas...

Also I'd generally be more skeptical as the green urine it produces could be a strong placebo enhancer that is hard to control against.

Monochromatic red light in the bathroom should take care of placebo problem? Or red glasses, something like that. Maybe artificial piss color.

Methylene blue is also an monoamine oxidase inhibitor. I add it to my dog’s food to boost her metabolism. She blew her knee out a year ago (common injury for large 10yo dogs) but has mostly recovered without the surgery the vet said she’d probably need. (I use a variety of interventions with her.)

Methylene blue should not be combined with the later anti-depressants that focus more on serotonin (SSRIs, etc.), as this can cause serotonin toxicity: https://www.apsf.org/article/methylene-blue-and-the-risk-of-...

> Tau is working on a slightly modified form that is basically putting it in a capsule and they'll sell it for $50 a pill probably, but that's the only way that anyone will believe it actually works.

Patent medicines [1] are still as popular as they ever were. Science made some inroads in the early 20th century, before the hucksters regrouped, with new prescription-only FDA approved nostrums.

[1] https://en.m.wikipedia.org/wiki/Patent_medicine

thanks for your post. That would be funny if the cure is to drink the "Methylene Blue Kool Aid"

And that is but one reason why our system of health care is immoral. Not amoral. People who are sick, their families watching, are not able to make rational economic decisions. These things should be decided when we are rational, as a society, and my preference is the "veil of ignorance" approach provided by John Rawls. If you don't know what disease you get, what your native tongue is, whether you're rich or poor, whether you're Muslim or atheist, man or woman or agender or other, family person or nomad - what kind of society would you want to build, and how should and would that society treat everyone as fairly as possible.

There is an exploitation in waiting, literally waiting, for people to get sick to have this conversation and decision making, as if health care is a product like any other, where some people will choose to buy even a chance, and others will admit defeat even with decent odds of success just because they can't afford it.

But we also take it farther, where a bulk of the cost and the cost increases, are masked from the actual consumer by employer paid health care. Every single time I talk to people who do not buy their own "aging and sick care maintenance plan" I'm impressed by how incredibly ignorant they are of cost. Average cost for a sore throat doctor visit, $603. If you aren't shopping, or aren't able to shop, how is this in any way an informed free market? It's like we've gone both anti-socialism and anti-capitalism at the same time to come up with the world's worst possible way of doing health care.

Imagine being behind the veil of ignorance and saying: only rich people should not have to worry about their health and sickness and aging, the middle class and poor properly should always wonder. And if really bad things happen through no fault of their own, they should properly be bankrupt. And none of this should be transparent or obvious or understandable by the average person. That is a good society that builds trust.

Of course no one would say that, except maybe comedians and wicked people.

I haven't thought or Rawls in quite a while.

The idea of a "veil of ignorance" as a mode of capturing the implications of some political position is a useful, wide-ranging, and easily digestible ethical concept; I'm going to add it back into my intellectual tool bag for when I am trying to discuss ethics with folks.

Thanks for the reminder.

> The allure of this theory, in my view, is that if you could somehow turn this into a treatment, people would give you whatever money you demanded for it. You want $200,000? We'll find it, somehow, just make Mom remember who I am, please.

Experts please correct me if I'm wrong, but even if this theory were to be proven true, how could it help anyone once the damage is done?

I won‘t speculate about the feasability in humans, but at least in a mouse model, it looks like it‘s possible to at least partially reverse some symptoms: https://www.sciencedaily.com/releases/2018/02/180214093712.h...

I'm wondering, after the recent finding that herpes anti virals can reduce the chance of getting alzhemiers by up to 10x whether its worth trying them on my dad who's got some kind of dementia. Not sure if it's got a chance of working. The drugs are fairly cheap widely available and low side effects - the same stuff you take for cold sores. I guess the idea would be if you could control viral stuff the bodies normal repair mechanisms could help.

It sounds like you take some concern into your dads health and that you care. I would encourage you to be open and ask questions and find the information you need to help how you can. Maybe that is talking to your mom or if he is alone perhaps start a conversation with his doctor. If this is just something you have noticed but hasn't gone through the doctor I highly encourage you to do so. There are several causes to dementia. One being Alzheimer's as most know example but there are other types of dementia like vascular dementia where medications absolutely can help to some extent. Anyways don't be afraid to ask the questions. Wish you and your family best regards with all this.

IT may be more like - give mom the ability to re-learn who I am. Once AD hits, the memories are destroyed, so if things get restored, it may very well be a new a different person. Albeit one with the ability to learn and retain memories.

Is that something we actually know, that it's the storage area that's damaged and not the retrieval pathways?

Presumably you would treat during early onset.

The adult brain has some limited ability to recover from injuries. It's quite possible that if an aggravating factor was removed, Alzheimer's patients could slowly improve.

This research could make it only more cruel. Proof that it is caused by a germ, that is may be catching, would suggest that sufferers should be isolated from healthy people to prevent spread of the infection. Id be happy if it were caused by bacteria or a virus. Those we can deal with. But what if it is a prion like bse? Could it linger in houses? Are nursing homes now a biohazard? Dark days.

The link between viruses and some cancers already points to some scary realities. Perhaps the kids shouldnt visit grandma in hospital. Imagine being a kid with cancer when your classmates learn that they might catch cancer from you? It could be like the early days of the AIDS panic again.

Infectious etiology is not the same as being contagious. We know HPV causes increased cancer risk, but we don't treat folks with those cancers as contagious. They're not. But their malignancies do have an infectious cause - infection earlier in life. That's the relationship being proposed here with Alzheimer's. Understanding the nature of a disease is a prerequisite for developing better treatments. We should not the imaginary social fears of the uninformed get in the way of that exploration.

It's almost certainly not infectious in that kind of way or you'd notice the nurses in the old folks homes getting it.

From an article cited in the OP:

"Neurosurgeons were more likely to die of Alzheimer disease, other nonneoplastic nonvascular nervous system disease, leukemia, and aircraft accidents, when compared with the general population."

That looks like persons exposed to the brains of patients may be catching something.

What if it was a germ? How would one go about finding it? Where would one find the non-infected population with which to compare? It may be a combination of a germ and genetics and that germ may be pervasive in our environment, but that doesn't mean the germ cannot be isolated or even eradicated. So it is worth investigation. We may need to find people (monks?) who have lived without exposure to people with dementia, an interesting anthropological problem imho.

There are some viruses that basically everyone gets that then lay latent for the rest of your life. So yes if one of those were a cause then epidemiological data wouldn't be much help.

Not a crazy thoery, one of the complications of measles is a fatal encephalitis that occurs 5-20 years later.

Be nice if they figured it out, Alzheimer's Disease means years of suck quality of life for everyone.

Worst case: they are getting it, but not finding out until they themselves reach old age.

I think even that would be noticed by now. If almost every person that worked in a nursing home 30 years ago are getting Alzheimer's.

But why assume that people who work in nursing homes will be more exposed? Work is only part of the day. A great many more people live with elderly/dementia patients in their homes. We are all in contact with such people daily. If there were a germ that we could 'catch', I wouldn't assume that people in nursing homes were a special population. We may all have it.

This is not specific to Alzheimer but applies to the general concept of market-driven medical research.

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