The Comforting Fictions of Dementia Care | Hacker News Reader

The Comforting Fictions of Dementia Care

newyorker.com

73 pointsokket42 comments

This brought back many bad memories. My mother had dementia, she didn't even recognize me the last year of her life. This is a woman who did the NY Times crosswords in ink, read 2-3 books a week in English as well as French for my entire life. She didn't know who was president or what she ate fifteen minutes before.

My dad soldiered on until he had his first auto accident at 97. My sister told him he should give up driving, I helped him sell his car and his condo. He moved into the same home my mother lived in.

At 99 he started getting super forgetful, made it hard for me to take him to his doctor appointments. Then he had a severe fall after turning 100. He seemed totally out of it and I thought it was the drugs he had while in rehab. A nurse took me aside one day and said it wasn't the drugs he was suffering from dementia.

I got my share of 2-3 am panicked phone calls. He was always upset that he didn't have any money in his wallet. Got tired of telling him he didn't need it. Just started putting a wad of ones in the wallet but he kept either losing them or tipping the waitresses at his meals. Kept losing hearing aids which were expensive to replace.

I sincerely hope that they find a cure, I sure as hell don't want to put those close to me through it should I live that long.

I’ve lost two grandmas to dementia now. The first I lost was an RN professor specializing in geriatric care. She said her one wish was to never have dementia/Alzheimer’s. And yet it came for her. It’s just cruel.

Sad, but essentially this article is about benign warehousing of individuals with senile dementia in their waning years with a description of bland distraction methodologies employed by institutions. A question arises as to whether the possibility of coupling individually tailored AI with VR headsets or even OLED panels in rooms could be utilized to provide suitable stimulation for these individuals in this state. Reverence was made to Nozick's 1974 thought experiment called the experience machine (his intent then was to refute thesis of hedonism) which was to provide an individual any experiences the person chose, for the rest of their life but one of his arguments against its use was We want to do certain things, and not just have the experience of doing them but as medical ethicist Schermer points out When there is only pain and no capacity left to deal with that pain, to really understand or come to grips with it, nor even to remember it for very long, then the truth cannot contribute to a good life So I see no reason why an individually tailored interactive VR environment couldn't be used to provide these entities with some degree of stimulation to alleviate their sense of depression and frustration.

Because the person with dementia does not have a stable level of cognition. It changes continuously. The article mentions this. At higher levels of cognition they will know whatever the simulation is false and it will upset them.

Spend some time with dementia patients and you'll quickly realize the issue.

Any VR would have to be able to determine current cognitive ability to not cause as much frustration and harm as relief.

Good point, but it's also the case they forget being upset quickly. My father-in-law had dementia, and as he progressed I found it useful (for me) to interact with him as if he was like an X yr old child (without a medium/long term memory). e.g. If X was 6-8 we would talk about family, have a walk, point things out, express preferences, tell stories. If X was 3-4 we would talk about people and things in the room, discuss food, check he was comfortable, smile and be upbeat.

I had much better time with him like this, than seeing other families who were trying to be 'grown up' and have serious conversations. YMMV. Dementia is awful.

Declining cognitive state is very random.

Not being able to recognize oneself from a mirror and being spooked by stranger in the mirror. Shadows or even floor lamp in the corner may be scary person. The rest of life can become scary hell where you don't know what is going and where you are. Even very peaceful persons become aggressive when they are confused and scared.

Forget VR. If I get Alzheimer I want euthanasia or drugs. Maybe gradually increasing opiates that take all pain away and I eventually stop breathing at night.

I like the way you think. If not AI right off the bat, we can certainly build a gradual ramp up to it. For example, at level 1 the person has access to a radio, tv, a certain level of guaranteed interaction, notification of N local volunteer groups that they are in the facility and could use visitors at times; at level 2 we introduce media of specific types calculated to fulfill what we know of the subject's interests, or specific kinds of people--maybe they love firemen, so those people are notified, etc.; At level 3 we go more immersive with technology, including maybe even remote access to others or even participatory access for others, so they can be in the same virtual world as Grandpa and watch or try to interact.

Well, anyway with some kind of universal levels or standards in place, there is this new level of awareness, and everyone has a more helpful point of reference rather than trusting random bullet points on a facility flyer, or whatever.

This is a really ideal use for advance medical directives to allow people to choose what kind of care they want before they lose their cognitive abilities.

For example, for myself, while I'm young and healthy, I want the world to know: if I get dementia someday, LIE TO ME. Lie your ass off. If I can't think for myself, I just want to be kept happy in a blissful illusion. If you can get an AI robot to keep me as a pet, that would be ideal.

The article addresses the issue of advance care directives. It turns out they might not always be the ideal solution they might seem at first glance:

"It might be possible to deal with the problem of lying and dementia by means of advance directives. People already specify what sorts of medical treatment they want and don’t want in the future, in case they later lose the capacity to make those decisions; could they not also specify how they want to be treated in other ways? Someone who most values happiness, however simple, might choose lies and medicine; someone who feels that life with late-stage dementia, without a certain degree of awareness, is not worth living might choose truth and death. The trouble is, advance directives themselves bring up all kinds of problems in the context of dementia. Suppose a woman signs a directive that she is not to be lied to but, at a later stage of the disease, suffers terrible bereavement each day as a consequence--should her family feel obliged to respect her wishes? Or suppose a man believes that life with late-stage dementia is not worth living, and signs an advance directive to have all medical treatment withheld, even antibiotics, once he reaches that point; but then, when he does reach it, he seems very happy with his life--he still enjoys visits (even if he can’t identify the visitor), his meals, beloved music, walks in the sun. Should his directive be respected, ending his life?

"The late philosopher Ronald Dworkin believed such advance directives should be respected. People don’t just live for pleasure, he argued; they also want to preserve their dignity, and to feel that their life as a whole has integrity and coherence. When people dread the total dependency of late-stage dementia, they don’t just dread its effect on others; they dread the way it warps the shape and story of their life. For some, the prospect that they might live their last years content with childlike pleasures, kept happy with benevolent lies, would not be a relief but a horror. In the case of such a person, Dworkin believed, it is no more legitimate or kind to contradict their advance directive in late-stage dementia than it would be if they were in a permanent vegetative state.

"Dworkin assumed that the man who dreaded late-stage dementia and the one who is perfectly happy are the same person. But what if the happy person can no longer remember anything about the man he once was--is he still the same person in any meaningful sense? And, if not, is it right to end his happy life in order to preserve the dignity of, in effect, somebody else? Also, does it make a difference what his family thinks about this? Whether they feel, in the later stages, that the person they loved is gone; or whether they feel that that person, though much changed, is still there--still recognizable in his body, in his smell, in his eyes, in his hands when held, in some of the things he appears still to delight in? Why should a person be defined by thoughts and memories? Aren’t emotions and bodies enough?"

> Should his directive be respected, ending his life?

That's the big ethical/philosophical conundrum of planned euthanasia. Is a personal decision made by the person who still had all their faculties of thought still valid when that same person is suffering from dementia and can no longer relate to that decision?

This is a highly personal matter, and the choice may well best be left to individuals (who can choose to defer to their loved ones as well), but that would imply accepting that some people will get to set the conditions for a facilitated death, and have those honoured.

In the Netherlands this is an ongoing topic for debate, with a couple of recent cases highlighting the difficult position this type of euthanasia places carers and family — although not acting on the express wishes of their loved one emburdens them in no less a manner.

Part of the solution may be a shift in society's perception of a self-chosen death, in that it becomes much more accepted; something that has been happening for the past two decades in countries where euthanasia is possible.

There is a kind of middle ground in such a case. Give the person every comfort he/she needs but deny him/her invasive intensive care, essentially no visits to the hospital (but of course basic medical care inside the care facility).

For two reasons: First they said they didn't want this life and second, hospitals are ill equipped to deal with elderly with dementia. Usually it is a horror trip for those individuals and they come back in a much worse condition than when they were admitted.

What if the comfort they need is not living a life with dementia and not wishing to burden their loved ones with that status quo?

With dementia some people revert into a blissful state of ignorance, while for others every day is a new day awakened into a nightmarish state of constant agitation, anger, confusion, and loss. Often this is a state that no amount of therapy or care can address. Couple that with a strong body, and you can be kept 'comfortably' alive for a decade or more. Hardly a humane solution to not wishing to allow people to choose their own death.

It also means that in countries with that view codified in law, anyone wishing to avoid that level of personal hell will have to commit suicide long before the need is there — depriving themselves and loved ones of an unknown length of time spent as they please.

The thing I hated about the care they gave my grandma is they kept trying to feed her bland shit with a "Low Sodium Diet." What a cruel joke on someone slowly dying of Parkinsons. She was dying for god's sake. Let her eat what she wants! We had to fight to get her a freaking salt shaker. I still feel ashamed that I didn't spend every day bringing her real food and candy.

Some of the doctors and managers that supervise those places deserve to go to jail. Hospice clinics are even worse. Just ask the nurses that work there.

> If a woman asks for her husband, having forgotten that he is dead, should you tell her the truth and cause her terrible grief, knowing that this fresh bereavement will likely repeat itself, over and over, day after day?

I learned that the hard way. My father forgot his father was dead, and asked to go see him. I said he'd died long ago. His face filled with grief. It was awful.

I never did that again. I'd just say his father was away on a trip or something.

If a woman asks for her husband, having forgotten that he is dead, should you tell her the truth and cause her terrible grief, knowing that this fresh bereavement will likely repeat itself, over and over, day after day? Or should you just tell her that he is at the office? And is direct lying different from various forms of passive lying—encouraging delusions, or allowing existing delusions to persist? What is more important—dignity or happiness?

This is not a dignity or happiness question, this is an agency question: who is charge of this person's life? It gets directly to the definition of consciousness (but not sentience, which is a different animal entirely). My working definition of consciousness is the ability to receive stimulus in such a way that your internal mental model is changed.

If you cannot understand your husband has died in such a way that prevents you from keeping that thought in your head tomorrow and continuing with your grief, you are not conscious in the same way the rest of us are. You certainly may be able to speak and move around, but you are not fully awake. You may never be.

In this case, and this case only, you have lost agency. That is, others must make decisions for you based on their ability to receive new data and adjust their mental models. That's not the nursing home's job. That's probably a close family member, somebody you trust with your life.

It's an evil thing when other people take away your agency. The elevator button appears to make the elevator speed up, but it doesn't. The doctor uses meds as chemical restraints because that's easier for the staff. The emergency responder tells you that you're doing fine when in fact he knows you only have minutes to live. It's evil. There's no getting around it. Somebody is purposefully taking away your ability to make choices by creating a fake universe for you to live in so that their life is better. (Same goes for online forums that give you voting buttons that do nothing, or ghost you, but I digress)

But it's not an evil thing when you do it to yourself, when you select somebody to create a wistful fantasy for you to live in for your final days. It's probably the most humane thing we have going for these folks.

This was a fascinating read. Also, refreshing to see a story about elder care that doesn't involve some kind of miserable abuse.

I’m hoping more research and ultimately therapies are developed around treating neurodegenerative diseases with psychedelics. A cursory google search seems promising.

Cursory google searches often do

If I ever get dementia, put me on a steady diet of psilocybin.

I come down firmly on the side of allowing people with late stage dementia to think things that may be untrue but nonetheless make them happy.

If a patient is incapable of remembering that their beloved spouse is dead, it's simply unkind to insist on making them relive the death trauma over and over again when doing so has no effect on what they can remember ten minutes from now.

I hope to God I have the right to suicide by the time that happens to me.

Personally, I’m hoping we put more of an effort behind solving the problem so people won’t need to commit suicide.

Sometime in the 21th century we’ll come up with some sort of treatment. It’s just a matter of which decade.

Maybe we should increase funding now?

https://thehill.com/opinion/healthcare/392585-heres-why-we-s...

There are 50 million people with Alzheimer’s and that number will increase significantly:

https://www.alz.co.uk/research/statistics

Why ? Assisted suicide is already feasible, cost is low, and makes room for the (sadly literal) billions of people waiting for a better life.

It doesn't sound very moral to me to be willing to spend tens of thousands from insurances and such (so not exactly one's money) on individual treatment, just to get a bit more time for myself as an elderly person.

Solving the problem? You mean immortality?

if you get to that point you would probably not be able to conceptualize that anything is wrong. dementia starts mild, so i suppose someone with mild dementia could consent to suicide, but I think most people would hold out in the possibly of a cure or improved treatments

My father had AZ, and knew something was wrong with him through the entire course of the disease.

Same with my grandparents.

Though I do hope I have the type of personality to take permanent lack of context/memory with some form of levity. Laughing at the absurd.

There are still interesting, funny moments. Once, I had done something that angered him. He gave me the third degree, yelling at me. I started chuckling. He stopped, and angrily asked why I was laughing. I replied he hadn't yelled at me for 20 years, and it felt oddly good and familiar to have him yelling at me. It was good to have my old man back.

Of course, that took all the steam out of his anger, and he soon slipped back into the mist.

Thank you for sharing. That was a vivid and moving scene.

Not to be too blunt about it, but why would you need the right? It's not like there would be repercussions.

Unless you meant some kind of contract to be euthanized by the state/caregiver if you lost your faculties. That kind of thing would scare me. What if some interviewer decides they think you have lost it when you're still hanging on? We have a lot to learn about elder care in the modern world I guess.

I suppose there are practical issues, especially once someone has gotten debilitated enough they don't have a lot of personal autonomy or privacy. If it were legal then one could imagine making a autonomous decision and "getting help" with the practicalities.

I think he meant the right to be killed moreso then the right to suicide. However, there are other contexts where the right to suicide makes sense, such as terminal illnesses that leave your mental faculty intact. If you are stuck in a hospital bed, surrounded by doctors, with a machine reading your vitals continously, it can be very hard to commit suicide. Even if you manage to, it would probably not be as pleasent as the morpheme overdose a nurse could give you.

Speaking from the personal experience of having watched a family member die of dementia, I absolutly agree that we should have a right to die. The only arguement should be about where to draw the line.

In my case we had a woman who watched her own mother go through dementia and was very clear in both her will, and in speaking with her immediate family that she never wanted to be kept alive in that state. In addition, by the end, the entire family was in agreement that she should be put down, and (as far as I am aware) every medical professional we spoke with agreed with our decision to put her on a DNR and avoid life prolonging treatments to the extent possible. I cannot imagine that a hypothetical ethics board would come to a different conclusion.

Despite this, she stayed alive until she died of dehydration as a result of loosing the mental faculty necessary to swallow when water was placed in her mouth.

If a nurse was comin at me with a lethal dose of morphemes..

https://en.wikipedia.org/wiki/Morpheme

Yeah, still way more pleasant than any suicide I could manage on my own.

I was told by a former physician (turned engineer) that the interval between realizing that you're starting to lose it and then indeed losing the wherewithal to act on your own is "a matter of weeks."

That seems too quick for me based on my grandmother's experience.

You would need the right because there are severe repercussions for failure in suicide.

- The stats are against you with a far higher risk of surviving any suicide attempt. Yes, in older age that risk "goes down" probably due to subconscious acceptance of the killing action, whereas a youth might use suicide as desperate cries for attention and not fully commit to go through because there's a glimmer of hope in the back of the mind that someone will save you from yourself. You can look up the stats, even shooting yourself with a gun in the head is usually _survivable_ although you may end up in far greater pain both emotionally and physically, locked in a comatose or paralyzed state and sustaining heavy damage. The 'easy' ways out that are entirely painless, even euphoric, and completely reliable methods of extinguishing consciousness are heavily guarded by gatekeepers who will make sure that it's not accessible so as to keep miserable, dependent, but profitable people in the land of the living even if that means torture in this worldly purgatory.

- The resulting involuntary commitment to psychiatric "services" which will most likely involve a long-term chemical straightjacket and physical confinement that externally may appear to be vegetative and without markers of sentience or apparent pain, but internally are a hell that few truly experience while here on Earth.

- Succession legalities that are currently minefields including the specifics of property transfer, insurance payouts, and in more theocratic/authoritarian states/communities the family members left behind may be the victims of ostracization, excommunication, or even incarceration.

Suicide bag is simple fast and painless method that can be self-administered or assisted. You just need a bottle of nitrogen and some other items.

A lot of people botch their home-brewed suicide attempts, and wind up in a much worse state than they were before they tried.

Professionally assisted suicide would ideally be as certain, pain-free, anxiety-free, and dignified as possible.

The scary - or comforting, depending on how you look at it -thing about dementia is that at some point you become a different person, possibly one who no longer desires to die by suicide.

I thought more states had this, Wikipedia says it's mostly the crazy west coasters again. It should only be a last resort. One grandmother got it, it was devastating for all. If I was in her boat, I don't know how I'd handle it. She just got worse over 3 or 4 years. It also killed my grandfather. https://en.wikipedia.org/wiki/Assisted_suicide_in_the_United...

Everyone in my family who has lived into their nineties suffers dementia. It is really hard to know what to wish for. Compassionate children, I guess, and the agency for them to do what they think is best.

My grandmother, on good days, thinks my mom is her sister, that some mysterious individual is going to buy them all new homes and take her away from the nursing home. Most days though, my grandmother is mean to anyone around. Nursing home staff must grow very thick skin.

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