In a way I find this kind of manipulation tragically sad, but in reality the true tragedy is the cognitive decline associated with Alzheimer's. I'm glad nursing homes have figured out a way to mitigate some of the problems until scientists can cure or prevent Alzheimer's for good.
I always feel sad when I see someone who is completely unaware of what is really going on. But then I realize that a much smarter being than a human might feel the same way about us. Maybe we look just as tragically sad to some genius aliens.
I couldn't agree more, my grandad has Alzheimer's and he often forgets that my grandma is dead and says he wants to see her, we have given up trying to explain to him what's happened as it always causes heart ache for everyone so now people lie to him, which I hate to do.
I wish that we had thought of something this simple to distract him, some people may say it's unfair, but isn't 5 minutes of trickery worth sparing them the heart ache that their life has vanished behind them and they have the decrepit body of an 80 or 90 year old person?
I was responding to the suggestion that such "manipulation" was tragically sad. The fact of the illusion being necessary is tragically sad but it happens all of our lives, why stop with senility?
Yes, the best solution would be cure the disease, but the nursing home staff are not going to be the ones working on a cure. They have a different set of responsibilities than the noble goal of finding a cure for Alzheimer's.
Oh for God's sake! These are OLD people, they remember public transport (which also still exists in Europe). A fake cafe, a fake second hand bookshop, anything that will make them pause and get less agitated.
What made you upset? muyuu's point is that if public transportation wasn't an effective method of transportation when they were younger, the patients won't associate the sign with going home.
And I don't see how a fake cafe or bookshop will attract them? They want to go home, not drink coffee.
If you're going to go to the trouble of making a fake cafe or bookshop, you might as well make the real thing. The point of the fake bus stop is that it's trivially easy to do.
More importantly, the bus stop attracts seniors who are trying to leave the facility, which is dangerous because they aren't able to do so safely, and are likely to end up lost and dying of exposure or exhaustion.
A fake cafe or bookshop wouldn't really be any more useful than the cafeteria or day room that the facility probably already has.
Well, it could be useful to create a more comfortable atmosphere. This hypothetical assisted living center would be set up to look just like a small open air mall surrounded by apartments, except all the workers in all the shops are nurses.
Just to comment on myself: I may have misunderstood the meaning of the word "fake" in this context. A "fake cafe" could still serve coffee, just not to the public at large.
The fake bus stop could be on a private road or driveway that the actual buses never travel on.
Hell, the fake bus stop could probably be on a gravel path that doesn't actually connect with public roads, as long as the ends of the path are hidden behind trees.
There was a nursing home in my home town that had a rural American analogue: a car that didn't start in the nursing home's back yard.
The anecdotes I heard weren't about rushing home to their families, but rather, using the car for things like getting groceries. Apparently it was a very successful tool.
I can envision future nursing homes with roaring fake Humvees and other SUVs. Fake tube stations where it may apply.
I find it very endearing to be honest. I know how it feels to be lost and confused, wanting to be home. When you're extremely tired, when you've lost a loved one... I feel for these frail older people.
At first I was going to say "what a sad reflection on American culture" (the fact that the car is the enduring anchor of the Alzheimer patient), but then I realized they could use the same single car for all their patients, so it is, in a way, mass transit.
Actually, it is also an effective way to help patients relax and alleviate their anxiety. And, it is for the good of patients. Even if it is manipulation, it's a great deal better than situations where a manipulator is trying to get an advantage. E.g. you are told partial truth at work by the management. etc...
The only "tragically sad" part is the fact that most people in developed nations end up in institutions, rather than being cared for by their families.
If you want to see "tragically sad," volunteer at any nursing home in the US with a dementia/Alzheimer's ward. It's a prison where everyone's on death row, the only difference is the food sucks.
What they're doing by going along with their delusions is offering these elderly people more peace in their confusion. Interrupting a delusion abruptly is like slapping a baby for crying - they can't help their situation and limitations and they won't understand the punishment.
Is leaving them completely alone for ten hours a day, five days a week really that much better? Especially with dementia, where they could wander off with no one even attempting to stop them.
Looking after someone with dementia is a full time job which is very emotionally draining and people can live many years with dementia. A lot of people could not afford to look after their loved ones, economically or mentally.
I imagine you'll quit your job when the time comes to look after your parents?
If I ever get dementia I'd like to be euthanasied, rather than have my children suffer through it.
My grandfather had Alzheimer's for over a decade. It was always the goal to give him the best care. When possible, the family took care of him. But it's taxing. Eventually, my grandfather--not a violent person at all--started to become violent. (I've heard this is common for people with his condition.) That's when we know that he needed professional care. There are times when its in everyone's best interest to seek help from an institution.
As terrible, sad and somewhat terrifying as it is, I find Alzheimer's disease quite fascinating. For those who want to find out more, Louis Theroux's documentary on the subject is very insightful.
They also have these in the US. My grandfather was in a home that had a whole 1940s small town-type setting in the backyard area complete with bus stop, sidewalk, and a little bit of fake street.
Man, I really wish that my grandfather had that. For the last few years of his life he was completely stuck in the 1940s -- he woke up from an accident and believed he was back in a field hospital during WW2. The homes he was in were sterile, unfeeling places; I would've loved for him to have something there. I don't know how comfortable he was there, but I certainly wasn't when I visited; getting him out and about (I hope) helped though...
Wish I could upvote and draw a giant red arrow bringing attention to your comment. That URL is incredible. Would've posted this comment earlier but I've just got back from reading out the URL to the rest of the office.
And yet the page's URL still had a ?id=1665 story id. id=1666 is a different Alzheimer's success story from the IACP State Associations of Chiefs of Police's Missing Alzheimer's Disease Patient Initiative!
Well, one the one hand you get a lot of words in the URL nobody will ever search for, especially not concatenated as they are -- on the other hand that page looks to be 9 levels deep from the domain root. I doubt there is an actually good reason, it's just a crappy CMS.
It appears that most of the directories that appear between the domain name and the final file name are optional. The following URL points to the same page:
Hmm, I guess the difference here is that the few people who will pick up on garbage query strings would likely miss an altered path, if it was made carefully.
They use DotNetNuke, a god awful CMS running on ASP.NET WebForms. Together with Umbraco, it's the most popular open source CMS in the Microsoft world. It's really sad.
DotNetNuke uses a system similar to Joomla (at least I think so) where a page is composed of instances of modules that are placed inside "panes", these panes in turn are defined by the theme a given page uses.
Alas, I guess they have a custom news module where an article can be accessed by supplying an id parameter in its query string.
Oh god, I hate DNN. I had to use it for my fraternity's site when I was redoing it because one of the alumni is the director of training for it. The sad part is he would never respond or help. That thing was such a pain to use. Trying to actually get into the nuts and bolts (css, html, js, ect.) of any of the pages was horrible.
I'm sorry you had a difficult time reaching me and working with DotNetNuke. Anyone else having trouble trying to learn/use DNN, feel free to email me at chris.hammond@dnncorp.com or call me at 650-288-3153
I can't tell whether I find this crushingly sad or not. On the one hand, I cried like a baby at the end of the Notebook. On the other hand, this basically reminds me of what it's like dealing with my 2 year old daughter.
Is it necessarily a tragedy that someone's mind dies before their body does? It's undoubtedly painful for those waching - but for what reason?
I guess "potential" isn't tragic (ie. my daughter will eventually become a completely coherent adult) where as this kind of mental decline is like some sort of extreme nostalgia that basically picks out every sense of loss we've ever felt and makes it resonate like a tuning fork.
A story that turns that crushing sadness to 11 is Part Four (The Scholar's Tale) in Dan Simmons' "Hyperion", where a young woman catches a strange sickness that has her age backward - each morning when she wakes up she's physically two days younger and has lost one more day of her life memories. I think it's the saddest thing I've ever read.
Completely different scenario. In Hyperion, it's a constantly repeating process.
SPOLERS AHEAD
The girl tries to keep herself updated via a diary for years, but eventually the information about this life she lived but can't remember becomes overwhelming (requiring hours to digest and come to terms with, repeated every day) and too disconnected from what she does remember. She asks her parents to simply lie to her and act as if nothing had happened and it really were the day after the one she last remembers (i.e. one day earlier for every day that passes) and there's just some unexpected problem that prevents her from going to school, meeting her friends, have a birthday party, etc. (since it's SF, it's possible for the parents not to age).
The parents agree, since watching their daughter struggle with that mind-boggling revelation every day anew had been painful, but the resulting charade is in some ways worse, especially after the mother dies in an accident.
A lot of the current post seems to be taken straight from there. Compare, for example:
> in Alzheimer’s patients their short-term memory hardly works at all, but the long-term memory is still active. They know the green and yellow bus sign and remember that waiting there means they will go home.
with Goebel's quote:
> 'Their short-term memory hardly works, but the long-term memory is still active. They know the green and yellow bus sign and remember that waiting there means they will go home.'
Good point - this wouldn't such be a great solution if it caused problems for other people. That has been accounted for, though: the sign actually says "Sonderfahrten" (special trips) in the area where the bus number(s) would be, to indicate that there is no regular scheduled service.
I wonder if it will work in a decade or two, when people prior to Alzheimer's learn about the trick and would perhaps be subconsciously more suspicious.
Or more directly, do they keep doing this with the same patient?
People knowing about fake stuff NOW, who will have Alzheimer in 40 Years, will NOT forget that there are fake bus-stops and stuff in the backyard.
So they will know that nursing homes have fake stuff and they will complain about it.
My opinion about "it's sad":
Alzheimer is not very sad for the pacients, but for their families. The patients, like my grandfather and grandmother, don't really know they _have_ it, and they don't really care. They still have 100% functional feelings and experiences. Just their short time memory will let them forget anything very soon. But old memories persists.
Sorry, but this a very limited description of the disease. Alzheimer's, like all dementias, is a disease of the brain, not "just memory". It comes with a whole suite of symptoms and difficulties that are experienced directly by the patient, including depression, irritability, aphasias, and often physical limitations in advanced cases.
Long-term memory loss dominates public perception of the disease, but as anyone who works with dementia can tell you, most of the time it is as distressing for the patient as it is for the family.
Dementia is a part of my condition (which seems to be idiopathic, presenting symptoms of both Parkinson's and Huntington's). The motor difficulties and aphasic episodes are the things that I can't explain away, even though the explanations for other things are often quite convoluted. There was a period of some weeks a couple of years ago now when I amassed what must have been the largest privately-held collection of tomato ketchup in Canada, apparently by going shopping for food I needed and, having no idea why I was in a grocery store (or, for that matter, which store I was in) deciding that I was probably nearly out of ketchup anyway, and that I could get out of the store without embarrassment if I bought a bottle. I lost nearly thirty pounds that month, and wound up in the hospital twice due to extreme dehydration. Apparently I was not particularly nice to the people who were trying to help me, since I didn't need their damned help anyway, and they were trying to poison me. Things are considerably better now with medication, but there are still times when I find myself completely lost in what should be familiar territory. And I'm no longer really attached to anybody; it's like that part of me is missing now, and I can't sustain anything like caring. I don't know how much of the depression and irritation is part of the pathology and how much is just frustration and fear (terror, really) that never really goes away. Sometimes I think that if there is ever a root cause found and a cure effected, it would take me many years before I would trust normal life again.
I've wondered about this. In my mid-20s I decided upon a signal that I would send myself should I be stricken with a mental illness like Alzheimer's. I don't know if it'll work, but I remember it very strongly and wonder if I will be able to recall it should such a situation arise. I'm in my mid-30s now and have hopefully a long time to go before I should start letting people in on my plan.
The idea is that if I am aware that I am suffering from dementia or Alzheimer's, I will hopefully make life easier for those caring for me (e.g., stay calm when my son/daughter I do not recognize is attempting to care for me).
107 comments
[ 3.6 ms ] story [ 183 ms ] threadI don't find this sad at all, I find it innovating. This is actually a great 'hack' that seems to work and only has positive results.
I wish that we had thought of something this simple to distract him, some people may say it's unfair, but isn't 5 minutes of trickery worth sparing them the heart ache that their life has vanished behind them and they have the decrepit body of an 80 or 90 year old person?
I think it's tragic because it's an indication of a) how terrible some diseases can be, and b) how powerless we are to stop them.
And I don't see how a fake cafe or bookshop will attract them? They want to go home, not drink coffee.
A fake cafe or bookshop wouldn't really be any more useful than the cafeteria or day room that the facility probably already has.
In fact, they still use almost every corner as a bus stop.
Hell, the fake bus stop could probably be on a gravel path that doesn't actually connect with public roads, as long as the ends of the path are hidden behind trees.
The anecdotes I heard weren't about rushing home to their families, but rather, using the car for things like getting groceries. Apparently it was a very successful tool.
I find it very endearing to be honest. I know how it feels to be lost and confused, wanting to be home. When you're extremely tired, when you've lost a loved one... I feel for these frail older people.
http://www.aegisliving.com/aegis-living-of-aptos/gallery/
Tragically sad would be to keep fighting with the patients every day.
It shouldn't be regarded as manipulation IMHO.
If you want to see "tragically sad," volunteer at any nursing home in the US with a dementia/Alzheimer's ward. It's a prison where everyone's on death row, the only difference is the food sucks.
What they're doing by going along with their delusions is offering these elderly people more peace in their confusion. Interrupting a delusion abruptly is like slapping a baby for crying - they can't help their situation and limitations and they won't understand the punishment.
I imagine you'll quit your job when the time comes to look after your parents?
If I ever get dementia I'd like to be euthanasied, rather than have my children suffer through it.
One of my dad's coworkers did exactly that. He gave up his high paying six-figure job to go back to India to take care of his dad.
http://www.radiolab.org/blogs/radiolab-blog/2010/mar/23/the-...
http://www.theiacp.org/This/Is/Something/That/Does/Not/Exist...
You can access the page (internally called a "tab") by its "TabId", for instance: http://www.theiacp.org/tabid/1007/Default.aspx?id=1665
or, just by using query string parameters: http://www.theiacp.org/Default.aspx?tabid=1007&id=1665
DotNetNuke uses a system similar to Joomla (at least I think so) where a page is composed of instances of modules that are placed inside "panes", these panes in turn are defined by the theme a given page uses.
Alas, I guess they have a custom news module where an article can be accessed by supplying an id parameter in its query string.
http://www.theiacp.org/tabid/1007/Default.aspx?id=1660 will point to a different news article. It's technically still the same page however.
Edit: Yep, posted earlier today: http://www.reddit.com/r/todayilearned/comments/yp94q/til_tha...
If your account is less than a year old, please don't submit comments saying that HN is turning into Reddit.
Now get out of my lawn!
Hmm...
Is it necessarily a tragedy that someone's mind dies before their body does? It's undoubtedly painful for those waching - but for what reason?
I guess "potential" isn't tragic (ie. my daughter will eventually become a completely coherent adult) where as this kind of mental decline is like some sort of extreme nostalgia that basically picks out every sense of loss we've ever felt and makes it resonate like a tuning fork.
Just think 'Eternal Sunshine of the Spotless Mind' with some extra rejuvenation added for fun!
I would gladly write some stuff in a diary and go back to 12 years old.
SPOLERS AHEAD
The girl tries to keep herself updated via a diary for years, but eventually the information about this life she lived but can't remember becomes overwhelming (requiring hours to digest and come to terms with, repeated every day) and too disconnected from what she does remember. She asks her parents to simply lie to her and act as if nothing had happened and it really were the day after the one she last remembers (i.e. one day earlier for every day that passes) and there's just some unexpected problem that prevents her from going to school, meeting her friends, have a birthday party, etc. (since it's SF, it's possible for the parents not to age).
The parents agree, since watching their daughter struggle with that mind-boggling revelation every day anew had been painful, but the resulting charade is in some ways worse, especially after the mother dies in an accident.
http://news.ycombinator.com/item?id=209955
A lot of the current post seems to be taken straight from there. Compare, for example:
> in Alzheimer’s patients their short-term memory hardly works at all, but the long-term memory is still active. They know the green and yellow bus sign and remember that waiting there means they will go home.
with Goebel's quote:
> 'Their short-term memory hardly works, but the long-term memory is still active. They know the green and yellow bus sign and remember that waiting there means they will go home.'
http://www.bernerzeitung.ch/region/bern/Pflegeheim-realisier...
(Link leads to a German article.)
Or more directly, do they keep doing this with the same patient?
My opinion about "it's sad": Alzheimer is not very sad for the pacients, but for their families. The patients, like my grandfather and grandmother, don't really know they _have_ it, and they don't really care. They still have 100% functional feelings and experiences. Just their short time memory will let them forget anything very soon. But old memories persists.
Long-term memory loss dominates public perception of the disease, but as anyone who works with dementia can tell you, most of the time it is as distressing for the patient as it is for the family.
The idea is that if I am aware that I am suffering from dementia or Alzheimer's, I will hopefully make life easier for those caring for me (e.g., stay calm when my son/daughter I do not recognize is attempting to care for me).