
The Comforting Fictions of Dementia Care - okket
https://www.newyorker.com/magazine/2018/10/08/the-comforting-fictions-of-dementia-care
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rmason
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.

~~~
ianai
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.

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escherplex
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.

~~~
trimtab
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.

~~~
jimduk
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.

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foxyv
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.

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WalterBright
> 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.

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DanielBMarkham
_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.

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

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

~~~
darepublic
Cursory google searches often do

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GeekyBear
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.

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

~~~
ehnto
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.

~~~
gizmo686
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.

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

[https://en.wikipedia.org/wiki/Morpheme](https://en.wikipedia.org/wiki/Morpheme)

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

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anon7429
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.

