Fake Bus Stops For Alzheimer’s patients in Germany (2011)
theiacp.org
theiacp.org
I 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.
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.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.
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.)
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://www.radiolab.org/blogs/radiolab-blog/2010/mar/23/the-...
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).
Definitely interesting to see how you can play the same tricks on people as you can on machines as long as you know enough about how they work internally.
Interesting and scary I guess. We all know how big corp is going to be spending billions on this to manipulate us all.
We all know how big corp is going to be spending billions on this to manipulate us all
Back on topic, my girlfriend works at a nursing home and she has often spoke to me about the residents being eager to go home, and just as in the article the residents often express their intent to find a bus stop. The approach my girlfriend takes is to tell them that the bus will arrive shortly, and they simply sit and wait in the home itself, waiting to be notified of the bus's arrival. Interestingly, some of the residents even think that the nursing home itself is a bus, and in that case they tell them that their stop is just around the corner, and they happily sit and wait to alight from the "bus".
To me, the scariest thing is that occurence of Alzheimers will likely increase as medicine further increases the lifespan of our bodies, but medicine is rarely successful in increasing the lifespan of our brains. And with that I sincerely hope that by the time any of us are that old, euthanasia is no longer a taboo and is a socially-accepted norm.
"No matter how much money someone spends, while I'm sane I will not (cannot?) be manipulated to stand next to a fake bus stop."
But to add some substance to this comment, let me add something. Be it marketing drivel or just the flurry of advertisements we see every day, we are being conditioned and manipulated. To a society where we need to buy to be happy, where you need Tide for clean clothes and McDonalds for happy children. Where brand names matter, and showing wealth is more important than fulfilling interests. Not to sound all hippy dippy, but I think it's naive to say that we aren't being manipulated.
I do want to also agree with your last point though. I'm amazed that in our current society that we have no "right to death". I too hope this changes by the time I start to turn.
- A care home offers full time protection, but displaces the person from their familiar environment. Some care homes also don't attend their patients but focus on making a profit; though we hope that by visiting often and looking at existing patients we can get an idea of which ones are suitable. It costs money, but the money in this case comes from my Nan's savings, and she's not going to be spending it on anything more than basic living costs anyway. My family don't need the money, so though in some cases inheritance is a concert (i.e. people save up through their lives to provide for their family even in death), that's not a concern for our situation.
- Leaving the person in their own home seems the nicest but least practical option. Having family members or carers visit frequently to keep an eye on the person adds in some security, but family can't be there all the time (we're talking a 90 minute drive there in good traffic; so 3 hours round trip) and carers aren't immediately recognised so can seem an intrusion to the sufferer, often leading to stressful confrontations.
- Having the person move in with their children gives full time protection by people who know and love them, but strips their children of freedom (their lives essentially becoming that of full time carers with the added depression of watching someone they love fade away).
On top of the above there are also internal family conflicts; for example my aunt is pushing for the state to fund any care solution (by not doing anything to help ourselves so the state acts as a catch statement) whilst my mum feels we should do all we can as well as taking what the state offers - but both working together (i.e. my mum & aunt have been given responsibility over my nan's care and assets on the condition they use those assets to my nan's best interest - trying to squeeze more out of the state isn't in her best interests, but may mean that my mum & aunt would lose their rights because by not using my nan's assets they're being irresponsible; the state could then take control of those assets and make all decisions without my mum or aunt's input).
Given all of these factors (and I'm sure you can all think of more), what other ideas can you come up with to improve the system to provide a solution which gives people security and dignity, whilst ensuring that families still maintain some freedom to experience their own lives?
I deceived a psychotic person into taking an antipsychotic drug once, and I think it was probably the best thing I could have done, and at the same time, one of the worst things I've ever done.
Or more directly, do they keep doing this with the same patient?
Hmm...
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!