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Fake Bus Stops For Alzheimer’s patients in Germany (2011) (theiacp.org)
418 points by iamwil on Aug 24, 2012 | hide | past | web | favorite | 104 comments



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.


You know what? They're not causing harm and they're helping these patients be in a safe environment so that they do not hurt themselves or others.

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 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 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.


Be honest. You've felt that way about other humans sometimes.


well, yes, that's exactly what they said


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.


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.


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.


> I imagine you'll quit your job when the time comes to look after your parents?

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.


I know that some people can do this and good on them for doing it, but not everyone will be in the position to do it.


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.


"Tragically sad?" This is brilliantly creative, and much more humane than keeping them under lock and key or in restraints.


It's a brilliantly creative solution to the problem, but that does not change the fact that the situation is tragic and sad.


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?


tragic and sad are suggestive emotions. Thus you should understand that there are people like him and I that don't find that tragic and sad at all.


It's a treatment, not a cure. It's for their good, but it's still deception. I find it creepy. A true solution would be making them not forget.

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.


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.


Sadly this only works in places where public transportation is effective and has been so for a long time.


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.


The Aegis assisted living facility in Aptos, CA has a non-running old car installed in the back. Residents can polish it and sit inside.

http://www.aegisliving.com/aegis-living-of-aptos/gallery/


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.


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.


Here in Colombia a fake bus stop would mean buses would use it anyway.

In fact, they still use almost every corner as a bus stop.


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.


What you think is tragically sad, I find very funny, very clever and a real life-hack.

Tragically sad would be to keep fighting with the patients every day.


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...

It shouldn't be regarded as manipulation IMHO.


This made me pause and think about what might be needed when I get old. Will the nursing home need to have a vintage Macbook seeded with data from The Internet Archive so I can obsessively check Hacker News and Twitter to see if anything is "new"?


Make it in advance, and make it in C.


OT, but that is one hell of a hierarchical URL


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.

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.


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


There are a number of ways to utilize URLs in DotNetNuke, the IACP website is definitely not what I would consider a best practice for their use.


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:

http://www.theiacp.org/This/Is/Something/That/Does/Not/Exist...


The /By is also unnecessary. This certainly makes it easier to submit a story to HN multiple times.


It's not too difficult to trick a filter on any page. I assume you can append a garbage query string for the same effect.


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.


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.


http://www.theiacp.org/tabid/1007/Default.aspx?id=1665 appears to point to the same page, so the long URL might just be SEO.


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.


Rather this is a result of this particular USAGE of the CMS, not the CMS itself.


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!


[deleted]


No, it's not.


Well, it's a cop website -- same difference :P


A discussion from 2008:

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.'


In Switzerland, a virtual train is used for the same purpose:

http://www.bernerzeitung.ch/region/bern/Pflegeheim-realisier...

(Link leads to a German article.)


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...


If Alzheimer's disease isn't solved within the next 60-100 years, will there be 1990s-style interpretations of cyberspace behind future nursing homes?


That sounds beautiful. Can you give us a link with more info?


I can't seem to find a link. It wasn't very large. Maybe 8 feet by 20. But it was just enough to make it feel like the way things used to be.


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.


The med industry would love the technology to make that possible.

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.


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.


See you later alligator...


There was a good radiolab podcast about this:

http://www.radiolab.org/blogs/radiolab-blog/2010/mar/23/the-...


Such stop was used as a trap for "patients" escaping from elderly home in a short movie Harvie Krumpet. I highly recommend to watch it, it's only 22mins long and can be found on Youtube: https://www.youtube.com/watch?v=ouyVS6HOFeo


Meanwhile, the visiting tourist is wondering why no bus has come in hours... lol


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.


Well, a tourist would probably not know German(as was my case when I visited Austria a couple of weeks ago)


Sure, but one would hope that they -would- know how to look to see whether the number for the bus they wanted was present.


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.


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).


I assumed it was to be parsed as "(fake bus) stops" but it turns out they've merely gone to the lengths of "fake (bus stops)"!


I'm a med student. I remember this topic came up in our exam on ethics and philosophy.


Please elaborate on a few of these aspects (again!). Thanks if you do.


Interesting. The nursing home where my grandma was, had a car in the courtyard for patients with dementia to sit in.


I guess this is what goes as a "psychological hack".

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
That's more than a little hyperbolic. 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.

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."
I'm sure this doesn't apply to you specifically (nor anyone in the HN crowd), but your statement really made me think of this article. http://www.nydailynews.com/new-york/video-man-pranks-times-s...

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.


You raise a good point about advertising, we are constantly bombarded with attempts to manipulate and coerce into specific ways of thinking. Even those who acknowledge this are likely still being manipulated, though more subtly.


Given the number of people on here who appreciate a good life hack, has anyone got any ideas for other solutions? My family's currently going through the to home or not to home question. Arguments for standard solutions are essentially:

- 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 immediately thought of the end of the movie 'Ghost World' for some reason.


I am actually living next to one (in Berlin)... It's interesting, because I never saw a single person there, I have no idea how successful it is here, but always wanted to ask.


It is a compassionate approach.


I can't wait for the google van to take me home.


The broader question is: when is it ethical to deceive people for their own good? Only when they are suffering from severe dementia?

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.


My grandfather was a railroad worker, replicating that would have been a bit more of a hassle.


If your in the area and he can make the trip, http://www.oerm.org/ is cool.


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?



Maybe it's a German thing; it reminded me of "Goodbye Lenin!" http://www.imdb.com/title/tt0301357/


Love that kind of real life/mind hacks !


I wish we had fake red lights in Germany, to keep all the crazy obedient bureaucrats occupied. The longer they wait at red lights, the fewer Wikipedia pages they can delete or create new tax forms.


I read the title as fake-bus stops...


Germany and Europe

Hmm...


This reminds me of the old guy in Ghost World who waits for the bus that doesn't run anymore, until it picks him up at the end of the film.


A mildly interesting old article that has nothing to do with anything. Am I on Reddit?

Edit: Yep, posted earlier today: http://www.reddit.com/r/todayilearned/comments/yp94q/til_tha...


http://ycombinator.com/newsguidelines.html

If your account is less than a year old, please don't submit comments saying that HN is turning into Reddit.


They noticed a behavioral pattern and used it to protect/leash patients: if anything, it's entirely appropriate for HN.


It's a hack in the true sense of the word; I found it entirely appropriate.


I come here for the comments, as I used to go to /.

Now get out of my lawn!


Reminds me of that joke: last week my doctor told me I had AIDS & Alzheimer's. I said, "Sh*t, at least I don't have AIDS!". :)




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