7 ms·

How Much a Dementia Patient Needs to Know

115 points by anuragsoni 8y ago

jquinby 8y ago
Related: entire self-contained 'villages' for dementia patients: https://gizmodo.com/inside-an-amazing-village-designed-just-for-people-with-1526062373 https://gizmodo.com/inside-an-amazing-village-designed-just-...
cmiles74 8y ago
Is it surprising that people are happier and better able to deal with their illness when they believe they are doing meaningful work and are useful to the people that surround them?
- kartan 8y ago
  > Is it surprising that people are happier and better able to deal with their illness when they believe they are doing meaningful work and are useful to the people that surround them? This is one of the many reasons that thinking that "poor people" are just lazy. To feel useful is a very basic human need. To the extend that even very rich people that does not need to work still does it. > The sisters who ran the home, though perceiving his confusion and delusion, respected and even reinforced the identity of this somewhat demented resident, who, they felt, might fall apart if it were taken away. Maybe a definition of sanity is the ability to deal with the lack of purpose. Most people is going to feel stressed and try to find a way to be useful again. Only when you are sick - whenever is dementia or depression - you stop being able to find your place in the world by yourself.
  - mirimir 8y ago
    For dementia, "deal with their illness" is the obvious way to frame it. But, on the other hand, many with physical limitations don't like being labeled as "disabled". Given how our minds work, self-reinforcement is a major factor. Negative commentary (and self-commentary) is hugely disempowering. I suspect that, in many cases, dementia is iatrogenic. In a way, it's like bullying someone in order to keep them irrational, defensive, and self-defeating. And yes, "lack of purpose" is a huge issue. Or rather, lack of a future worth living into. That's also a huge part of dementia.
  - velosol 8y ago
    > To feel useful is a very basic human need. I found it fascinating to read that sentence when I read from the article that routine is critically important. The article didn't seem to say that usefulness or value were what mattered or necessarily considered rather that things were familiar. More broadly I think that the belief you mention is primarily from the protestant work ethic [1 & 2]. Absent that social norm I'd argue that needing to feel useful and the associated need to work is not part of the fabric of humanity. Feeling needed and feeling that work is a reward is one path to happiness or pleasure but it is not the only one. I think a case can be made of not wanting to be a burden on a loved one but, sadly & cruelly, at some point dementia robs you of even that worry. [1]: https://psmag.com/economics/protestant-worth-ethic-real-65544 https://psmag.com/economics/protestant-worth-ethic-real-6554... [2 linked from 1 & more succinct summary]: https://hbr.org/daily-stat/2013/08/there-really-is-such-a-thing-a.html https://hbr.org/daily-stat/2013/08/there-really-is-such-a-th...
- scott_s 8y ago
  No, but it's also not necessarily obvious. By "surprising," I mean that it does not contradict my model of how people behave. But by "obvious," I mean that, unprompted, I may not have considered it an important part of treatment. My meta comment: don't dismiss something as "not surprising," and by proxy, not insightful or interesting if you had not already considered it.
jeffrallen 8y ago
Humans are complex, and being humane is too. But it's worth a try!
Deimorz 8y ago
This is another good (and very long) article from The New Yorker on the topic, from last October: https://www.newyorker.com/magazine/2018/10/08/the-comforting-fictions-of-dementia-care https://www.newyorker.com/magazine/2018/10/08/the-comforting...
mirimir 8y ago
Damn. I can barely read TFA. I mean, we'll all eventually face some sort of dementia. And death, of course. But when you're 70, it's much more immediate. There were times in my life when I didn't do much except drift, play with drugs, seek sex, put my life at risk, etc, etc. All the serious stuff could wait. And WTF, there'd be global nuclear war any day now. So why bother? Now I'm retired. There's no need to work, so all I do is putter. And my likely future is so short that there's no point in long-term planning. Also, and it's quite amusing, I don't need drugs to space out. I need them to stay focused. And to keep various physiological stuff from killing me. So maybe I'm a lot like that patient in TFA. But there's a key difference: I've never been diagnosed and institutionalized. And dog willing, I'll die before I am.
- gubbrora 8y ago
  > And my likely future is so short that there's no point in long-term planning. I've enjoyed your hn posts so thank you for that. I hope you can make the most of the time you have left.
  - mirimir 8y ago
    Hey :) By "short", I mean (dog willing) 10-20 years. So there plenty of time for y'all to get very tired of me. I have noticed, over the last decade or so, that I'm becoming increasingly adamant about doing whatever it is I'm committed to in the moment. And not spending time doing stuff that doesn't interest me, to make others happy. I've always been somewhat like that. But now I'm much more upfront about it.
    - CPLX 8y ago
      That's the best part about getting old.
      - mirimir 8y ago
        True. And more so, that you get less resistance about it. Also, it strikes me that startup founders are probably a lot like that. Or more generally, entrepreneurs.
WalterBright 8y ago
Dementia patients will forget that many of their loved ones are dead, and will ask to visit them, or why they don't come to visit. Reminding them that they're dead is a terrible thing, as I found out the hard way. Just say they're out of town for the time being. They've lost their ability to cope with reality, it's best to just go with the flow instead of upsetting them.
- mirimir 8y ago
  I don't think that lying to people is a good strategy. I mean, if I'd forgotten that my whatever was dead, I'd like to be reminded. Not humored. Because that's so dehumanizing. And if I'm so far gone that I can't handle it, I'll probably forget about it all, fairly quickly. Or if you can't deal with the upset, just distract them.
  - flocial 8y ago
    I think you underestimate the emotional toll of this disease on caretakers and sufferers alike. There's no point in aggravating someone with dementia unless you're goal is to hasten their demise by making them engage in self harm.
    - mirimir 8y ago
      Maybe that's why my wife lets me play on computers 24/7 ;)
  - DanBC 8y ago
    You say you'd forget, but that's the point. You forget you've asked, you forget the person is dead, you ask about them, you're told they're dead, you're shocked and you start grieving for them, and now you're in a loop of continuously asking about the person, and being told they're dead, and grief. Keeping someone trapped in this grief-loop is cruel. It's far better to just lie.
    - mirimir 8y ago
      I can imagine that it's like that for many. But so far, for me, it's mostly forgetting that they ever existed. So I can't imagine even asking. But maybe that will change.
brianberns 8y ago
Read all the way to the end thinking that it was remarkably well written, like an Oliver Sacks essay. And then I read the byline... Sacks was a treasure. What a gifted man.
simonsays2 8y ago
Do not be too quick to believe diagnosis of dementia. Doctors will diagnose it while patients are on medication like opiods. Then incompetence can be declared and the looting begun. There is evil afoot you would not believe. Dont argue. I am merely informing you, not convincing you.
black-tea 8y ago
It worries me to think that people would lie to me about my condition and I might not actually understand what's going on. I would like to die before this stage, but if somehow I reached this stage first they'd keep me alive and I'd no longer be able to kill myself.
sigi45 8y ago
Sometimes he calls out, “I want to die. . . . Let me die.” I personally will try to end it. The stigma and no real options makes it more difficult than it needs to be. Having control over your life should not stop when it is about your dead.

115 points by anuragsoni 8y ago

Related: entire self-contained 'villages' for dementia patients: https://gizmodo.com/inside-an-amazing-village-designed-just-for-people-with-1526062373 https://gizmodo.com/inside-an-amazing-village-designed-just-...

cmiles74 8y ago

Is it surprising that people are happier and better able to deal with their illness when they believe they are doing meaningful work and are useful to the people that surround them?

kartan 8y ago
> Is it surprising that people are happier and better able to deal with their illness when they believe they are doing meaningful work and are useful to the people that surround them? This is one of the many reasons that thinking that "poor people" are just lazy. To feel useful is a very basic human need. To the extend that even very rich people that does not need to work still does it. > The sisters who ran the home, though perceiving his confusion and delusion, respected and even reinforced the identity of this somewhat demented resident, who, they felt, might fall apart if it were taken away. Maybe a definition of sanity is the ability to deal with the lack of purpose. Most people is going to feel stressed and try to find a way to be useful again. Only when you are sick - whenever is dementia or depression - you stop being able to find your place in the world by yourself.
- mirimir 8y ago
  For dementia, "deal with their illness" is the obvious way to frame it. But, on the other hand, many with physical limitations don't like being labeled as "disabled". Given how our minds work, self-reinforcement is a major factor. Negative commentary (and self-commentary) is hugely disempowering. I suspect that, in many cases, dementia is iatrogenic. In a way, it's like bullying someone in order to keep them irrational, defensive, and self-defeating. And yes, "lack of purpose" is a huge issue. Or rather, lack of a future worth living into. That's also a huge part of dementia.
- velosol 8y ago
  > To feel useful is a very basic human need. I found it fascinating to read that sentence when I read from the article that routine is critically important. The article didn't seem to say that usefulness or value were what mattered or necessarily considered rather that things were familiar. More broadly I think that the belief you mention is primarily from the protestant work ethic [1 & 2]. Absent that social norm I'd argue that needing to feel useful and the associated need to work is not part of the fabric of humanity. Feeling needed and feeling that work is a reward is one path to happiness or pleasure but it is not the only one. I think a case can be made of not wanting to be a burden on a loved one but, sadly & cruelly, at some point dementia robs you of even that worry. [1]: https://psmag.com/economics/protestant-worth-ethic-real-65544 https://psmag.com/economics/protestant-worth-ethic-real-6554... [2 linked from 1 & more succinct summary]: https://hbr.org/daily-stat/2013/08/there-really-is-such-a-thing-a.html https://hbr.org/daily-stat/2013/08/there-really-is-such-a-th...
scott_s 8y ago
No, but it's also not necessarily obvious. By "surprising," I mean that it does not contradict my model of how people behave. But by "obvious," I mean that, unprompted, I may not have considered it an important part of treatment. My meta comment: don't dismiss something as "not surprising," and by proxy, not insightful or interesting if you had not already considered it.

jeffrallen 8y ago

Humans are complex, and being humane is too. But it's worth a try!

Deimorz 8y ago

This is another good (and very long) article from The New Yorker on the topic, from last October: https://www.newyorker.com/magazine/2018/10/08/the-comforting-fictions-of-dementia-care https://www.newyorker.com/magazine/2018/10/08/the-comforting...

mirimir 8y ago

Damn. I can barely read TFA. I mean, we'll all eventually face some sort of dementia. And death, of course. But when you're 70, it's much more immediate. There were times in my life when I didn't do much except drift, play with drugs, seek sex, put my life at risk, etc, etc. All the serious stuff could wait. And WTF, there'd be global nuclear war any day now. So why bother? Now I'm retired. There's no need to work, so all I do is putter. And my likely future is so short that there's no point in long-term planning. Also, and it's quite amusing, I don't need drugs to space out. I need them to stay focused. And to keep various physiological stuff from killing me. So maybe I'm a lot like that patient in TFA. But there's a key difference: I've never been diagnosed and institutionalized. And dog willing, I'll die before I am.

gubbrora 8y ago
> And my likely future is so short that there's no point in long-term planning. I've enjoyed your hn posts so thank you for that. I hope you can make the most of the time you have left.
- mirimir 8y ago
  Hey :) By "short", I mean (dog willing) 10-20 years. So there plenty of time for y'all to get very tired of me. I have noticed, over the last decade or so, that I'm becoming increasingly adamant about doing whatever it is I'm committed to in the moment. And not spending time doing stuff that doesn't interest me, to make others happy. I've always been somewhat like that. But now I'm much more upfront about it.
  - CPLX 8y ago
    That's the best part about getting old.
    - mirimir 8y ago
      True. And more so, that you get less resistance about it. Also, it strikes me that startup founders are probably a lot like that. Or more generally, entrepreneurs.

WalterBright 8y ago

Dementia patients will forget that many of their loved ones are dead, and will ask to visit them, or why they don't come to visit. Reminding them that they're dead is a terrible thing, as I found out the hard way. Just say they're out of town for the time being. They've lost their ability to cope with reality, it's best to just go with the flow instead of upsetting them.

mirimir 8y ago
I don't think that lying to people is a good strategy. I mean, if I'd forgotten that my whatever was dead, I'd like to be reminded. Not humored. Because that's so dehumanizing. And if I'm so far gone that I can't handle it, I'll probably forget about it all, fairly quickly. Or if you can't deal with the upset, just distract them.
- flocial 8y ago
  I think you underestimate the emotional toll of this disease on caretakers and sufferers alike. There's no point in aggravating someone with dementia unless you're goal is to hasten their demise by making them engage in self harm.
  - mirimir 8y ago
    Maybe that's why my wife lets me play on computers 24/7 ;)
- DanBC 8y ago
  You say you'd forget, but that's the point. You forget you've asked, you forget the person is dead, you ask about them, you're told they're dead, you're shocked and you start grieving for them, and now you're in a loop of continuously asking about the person, and being told they're dead, and grief. Keeping someone trapped in this grief-loop is cruel. It's far better to just lie.
  - mirimir 8y ago
    I can imagine that it's like that for many. But so far, for me, it's mostly forgetting that they ever existed. So I can't imagine even asking. But maybe that will change.

brianberns 8y ago

Read all the way to the end thinking that it was remarkably well written, like an Oliver Sacks essay. And then I read the byline... Sacks was a treasure. What a gifted man.

simonsays2 8y ago

Do not be too quick to believe diagnosis of dementia. Doctors will diagnose it while patients are on medication like opiods. Then incompetence can be declared and the looting begun. There is evil afoot you would not believe. Dont argue. I am merely informing you, not convincing you.

black-tea 8y ago

It worries me to think that people would lie to me about my condition and I might not actually understand what's going on. I would like to die before this stage, but if somehow I reached this stage first they'd keep me alive and I'd no longer be able to kill myself.

sigi45 8y ago

Sometimes he calls out, “I want to die. . . . Let me die.” I personally will try to end it. The stigma and no real options makes it more difficult than it needs to be. Having control over your life should not stop when it is about your dead.