1:53pm July 14, 2013

➸ Okay, this actually creeps me out more than a little...

youneedacat:

turbulentbeauty:

jackiesbutt:

xabulove:

sturmtruppen:

youneedacat:

feliscorvus:

A Dutch dementia facility where carers act as shopkeepers to keep an eye on residents attracts global interest.

I don’t normally do trigger warnings but I will say that some of this article literally made me nauseous. Proceed with caution if “real life dystopia" stuff freaks you out. :/

I know dementia isn’t the same thing as autism, but I am 100% sure that this is exactly what a lot of people have in mind when they imagine an “ideal care facility" for people with any sort of cognitive and/or developmental disability.

And that’s not even getting into the whole mess surrounding how people with dementia are viewed and what assumptions are made about them. I know it can be really really difficult and scary for both the person who has it and their family members, etc., but that doesn’t make it remotely okay to treat someone like their personhood is gone because they have dementia.

Nor does it make it okay to lie to them and essentially “trick" them. I don’t necessarily claim to have a solution for safety-related stuff but I am sure there has to be something better than deception. Especially given that the one constant I have seen in interacting with people in varying stages of dementia is a terrible fear that someone is trying to put something over on them, or isn’t telling them something.

But anyway, the part that freaked me out the most was this:

‘Dementia Village’ - as it has become known — is a place where residents can live a seemingly normal life, but in reality are being watched all the time. Caretakers staff the restaurant, grocery store, hair salon and theater — although the residents don’t always realize they are carers — and are also watching in the residents’ living quarters.

Residents are allowed to roam freely around the courtyard-like grounds with its landscaped trees, fountains and benches — but they can’t leave the premises.

Their two-story dormitory-style homes form a perimeter wall for the village, meaning there is no way a resident can accidentally wander out. And if they do approach the one exit door, a staffer will politely suggest the door is locked and propose another route.

Seriously, humans?! Again, I do NOT claim to have all the answers to how to actually address certain kinds of difficulties people might have. But this does not strike me as a step in the right direction as long as it relies on deception. It literally reads like some sort of sci-fi dystopia.

I said this on FWD agrees ago about a much less expansive idea if something very similar. A fake bus stop. I described my own experiences in the process.

I got jumped on hard by tons of people. Who said I just didn’t understand dementia. I think I understand it better than they did. But then they were the same people I described in a recent post, who pretty much believed that it was ableist to question psychiatry.

Anyway I was eventually, IIRC, just told to calm down and stop being furious about not only the fake bus stop but their reaction to it. I have no words. This literally is my nightmare. I’ve had nightmares about this place. Almost exactly.

And everyone thinks their fucking dystopia is really a utopia.

Jesus Christ this sounds like the plot to a god damn horror movie, that this exists and that people willingly send their loved ones to it is terrifying.

Almost sounds like the Truman show, but centered on multiple people and no audience,

It’s probably just me but.

I’m not seeing what’s so horrible about this.

But then again I don’t really understand Dementia that much either.

I also don’t agree with what everyone else has said. I wonder if they have any loved ones with dementia, as I have two. Luckily one is able to be cared for by his wife and several family members live on the same block. However, another relative had a lot of fear when she began to get disoriented and took to carrying around a knife. This became dangerous as she was in her 80s. We had to put her in a nursing home eventually. She could not remember who people were anymore. She had to be reminded all of the time why she was there and who family, the nursing staff, etc. were too. This was really stressful, so I really do believe that she would have felt more at peace if she could live in a more natural manner.

And as far as having everything watched, that’s not really surprising for a nursing home. They want to make sure someone doesn’t injure themselves.

Have loved ones with dementia. Have taken care of people with dementia. Live in a building with many people with dementia. Have a knack for being able to notice the thought processes and awareness levels of many people with dementia, due to cognitive disabilities of my own (both temporary and permanent).

Can’t stand the mentality that you have to have loved ones with a particular diagnosis to have a clue about the ethics of how disabled people are treated.

In the same way that you wonder if any of us have loved ones with dementia, I wonder if you actually bothered to notice what our real concerns are. (“People being watched for their safety” - not one if then unless you grossly misinterpret what people are saying.)

Also can’t stand the mentality of “you just don’t understand… anything at all is justifiable if it’s done in the name of treatment…. don’t you understand what dementia is?“ As if a bunch of mostly cognitively and mentally disabled people objecting to practices we may have actually experienced, is somehow irrelevant.

As noted in another post, I’m developmentally disabled (in several ways), a former mental patient, and have recurring delirium (because of physical illnesses and hospitalizations)and seizures.

Those last two give me a very good idea what it’s like to everything from mild confusion, to hallucinations, to severe disorientation, to actually walking around doing things and responding to elements of my environment while fully unconscious. And I have a wide variety of possible cognitive impairments, some temporary, some permanent.

So while I don’t have dementia, I have had an array of cognitive impairments that strongly resemble ones people with dementia may encounter. Except in many cases I also go back to not having them, or at least having them less. And my experiences as cognitively, physically, and mentally disabled and needing assistance from others, mean I’ve also had a wide range of techniques used to provide me that assistance.

And I can tell you that being tricked and lied to when confused and disoriented, and experiencing “home like” institutions, are traumatic experiences it’s taken me ages to recover from. Far longer than, say, physical abuse in the context of treatment.

When your grasp on reality is already tenuous, you need anchors to reality. You need people telling you the truth, even when they don’t think you can understand. Because first off people understand long after they stop looking like they can, but second off even when you don’t fully understand you’re possibly picking up pieces.

You need people orienting you to the here and now. Where you are. When you are. What is happening. Lying only compounds disorientation. And if people are keeping an eye on you, then they need to be honest about what they are doing. Pretending to be something they’re not, only makes matters worse.

I doubt if you have any idea how scary it is to experience severe disorientation. To experience a world that shifts and twists and turns with no apparent rhyme out reason.

You’re in one place. Then suddenly you’re somewhere else. You don’t remember anything in between. You get used to everything shifting like that. Often you don’t even have the cognitive skills to question what is happening. You’re floating around with no anchor. You may also be hallucinating. And when you try to bring your brain into gear, and try really hard, and you still don’t actually have the capacity to understand what’s going on… then the force involved creates delusions, and they seem as reel as anything seems to you or me right now. If you’re hallucinating, then the hallucinations will often lend support to the delusions, because they reflect to some degree what you’re thinking about or fearing the most. And when you don’t even have it together well enough to form delusions, then the whole world is chaos, chunks are taken out but you lack the awareness necessary to feel that, other than as pain, or something missing or empty.

And in that swirl of confusion, you need to be brought back to reality in as firm but kind a way as possible.

Pretending you’re in an ordinary village when you’re actually in an institution is not bringing someone back to reality. It’s letting all that slipping and sliding take over. It’s also not doing anyone a kindness except maybe the company that makes it and the relatives who no longer have to take care of you. But you yourself? No.

And the options are not just a shitty nursing home or a fake city. People really can live at home even with very severe conditions. It’s done all the time.

But the problem is that most people spend no time at all thinking what it’s like - really like, not imaginary like - to be treated lie this. They only think what it’s like to be a relative of someone with a particular medical condition. And then they think entirely in a view from outside, a view from above, a view from anywhere but what it’s like to be the person treated like that.

And while I might have more clue than most, what severe disorientation is like. You don’t need that in order to see why this is an awful idea. All you need is some basic awareness of what it means to be a human being, combined with the all too rare understanding of what factors make some institutions better and worse than others.

Hint: when people try to come up with humane institutions, they’re usually actually worse than the institutions people come up with when they are barely trying.

And also — disoriented doesn’t mean totally lacking in ability to notice attributes of your environment.

It doesn’t mean that people can’t notice that the place they’re in is very, very different from a real town. Or that the way they are being treated is very different from how people claim they’re treating them.

It doesn’t mean they can’t notice the violence or threats of violence. (And yes, there’s violence in places like this, you can’t force people to pretend everything’s all normal without serious violence.)

This village thing — it’s not to make the inmates feel better. It’s to make people in power feel like they’re not controlling others. And that’s dangerous.