No Exit: Dementia Village Dwellers Live in Alternate Reality
weburbanist.com
weburbanist.com
The scariest part was that I lost use of a lot of my short term memory, and I had problems concentrating. I couldn't even really participate in conversations because I'd spend minutes trying to comprehend a sentence, and by the time I decoded it the conversation had moved on.
Luckily, my mental abilities returned after a couple of weeks. But ever since, I've been mortally terrified of alzheimers and the like. We don't realise how much of our identity is wrapped up in our intellect until it's removed.
Since then I've seen grandparents slowly succumbing to alzheimers and dementia. It's heartbreaking. This place sounds great, I wish my country had a similar thing for my grandmother.
Mumps triggered it with some pancreatitis on the side. Double the 'itis', double the fun they say.
Spending weeks in quarantine, I only saw my parent through a glass window. Luckily my memories of the whole experience is a blur now. Maybe it's better not to remember the ordeal.
The only scar that's stayed is stuttering, which is sometimes better, sometimes worse.
I'm afraid what else might have gotten damaged back then, that might come out when I'm old.
What part of your identity is not wrapped up in your brain? I define myself by what my brain does. Alzheimers or a similar degenerative disease would have me seek out assisted suicide.
But I expect many of these physical abilities to degrade as I age. It is sometimes emotional to realize I will never again best some of the personal records I set in college athletics, but I can still enjoy the activities and work towards self-improvement in other areas.
But yes, there is little I fear more than a degenerative mental disease. Both my maternal grandmother and paternal grandfather have Parkinson's, and there is a significant genetic component. It's very hard to steel myself against the potential dementia.
But being a programmer is likely a sort of defense against Alzheimer's: straining your brain, by writing code or playing scrabble or solving puzzles, is said to resist the onset of it somehow.
The only benefit has been that people who do these things tend to have it detected early, when some treatments can help delay, but not prevent the onset.
What good is a mind if you don't have peripheral devices to produce output from it?
It is terrifying, the worst part is that neurological diseases are misdiagnosed every so often. Many patients will first see their whole life ruined before they can even put a finger on what is wrong.
I also watched my grandmother go through dementia in the last months before she passed away. It was hell.
Another approach that is getting more popular is to let those who can, roam around outside the facility freely with a bit of guidance and the help of local citizens (shopkeepers who keep an eye out) and technology (GPS trackers in their clothes or shoes).
Both approaches have huge benefits: it provides the sufferers from dementia with much needed stimuli. A stimulating environment helps prevent a rapid degeneration of the mind — that is, research has shown that use it or lose it is doubly important for elderly suffering from this disease. It also helps preserve a sense of identity.
The classical response was always to simply give up on the patients freedom and lock them up in a closed ward where everything is clinically clean, but that also means depriving them of a world that stimulates and intrigues.
I've noticed some concerns about the ethics of this secluded village concept, but compared with the alternatives (the closed ward in an elderly care facility) this is about as humane as you can get. People who live there are not maliciously kept unaware of the outside world, and some will regularly go outside with family and friends to celebrate something or to visit a park or a museum; the outside world is not a secret that is being kept from them! But these people do live in a reality of their own; that's just what dementia does to you. To them, left to their own devices, this village is the real world — but at least they can safely wander around without feeling cooped up in a small ward.
There are several dementia patients at the same location. While they don't have as much freedom they are certainly not locked up in a ward. The staff does daily activities, there's a farm next door they visit with cows, they take field trips to different places, families are free to come and visit etc...
I think only people with serious cases of dementia are hospitalized. It's important to be contained because many simply walk away and are never seen again or are unable to identify themselves. GPS trackers would help but how do you force them to wear it everyday.
From the article, only 150 people live in this village. How many people have dementia in the Netherlands? A quick search says there are 5.4 million Alzheimer's patients in the US, roughly the population of Denmark.
How could a village like this scale?
No certainly not! These are reserved for the cases that can not be left alone safely; that is, severe dementia. This closed village concept is of course not meant for the elderly who can safely navigate their environment with a decent degree of autonomy.
> How could a village like this scale?
One way is to successfully proof to the insurance companies that this is in fact cheaper than over-medication and closed wards.
You see, there are health benefits to keeping people active and mobile in a safe area. The classical closed ward is very restrictive; not just in terms of space, but also in terms of stimuli. If nothing challenges you, you soon give up on a lot of your daily activities, and soon these folk resort to a sedentary lifestyle. That causes a spate of health issues, from pressure ulcers to loss of muscle power. That in turn necessitates curative treatments, and those are expensive. For the elderly at risk of this, such as closed village concept should be seen as preventive medicine! A daily trip to the local shop inside the village means using your brain to purchase something, and using your body to get there and back to your room, all without having to pay a penalty when you fail (i.e., if you forget what you were doing, the staff can help, and if you trip and fall you are never far from medical attention).
Hopefully this village concept will gain traction in the US.
Linearly? I mean, it's right there in the description.
The alternative I have seen is a locked down area of a nursing home. They are segmented from the rest of the nursing home residents as they can be trusted with the same freedoms. All bets are off once a dementia patient exits the front door.
This also seems like a far nicer place to visit a relative suffering from dementia.
That said, it looks expensive. In my experience, nursing home care quality is correlated to cost.
My grandfather died in a nursing home that resembled a palatial hotel, with lots of staff making sure he was comfortable. He could afford it and it was well worth it.
A fancy village style campus, at the same or higher price, would have not made his experience any better.
Delivering high quality care at a low cost will disrupt the industry, a different high quality experience at an equally high cost won't.
Yes, according to the wikipedia article costs are similar to normal nursing homes, although part of the village (the café-restaurant and the theatre) are open to or used by the surrounding community in order to help towards costs:
> The café–restaurant is to some extent open to the public and the theatre is hired by local businesses, both of which help towards the running costs. The cost per resident is similar to more traditional nursing homes at around €5,000 per month.
> A fancy village style campus, at the same or higher price, would have not made his experience any better.
I don't know about that though, this scheme provides normalisation and possibly more stimulation (and more natural socialisation opportunities) than a more traditional nursing home, which according to Atul Gawande (in Being Mortal) can do a lot towards staving off degenerescence.
I have seen significant speedup of degenerescence of the elderly once they're removed from their home and moved to more hospital-like facilities, the kind of facilities shown here can help a lot especially if patients can carry over a significant fraction of their previous environment (decoration, knick-knacks, …). Regular hospital or hospice/care facility visits also tend to be a bit weird and pretty uncomfortable (due to the odd/alien atmosphere) for families especially children, I'd expect this facility to be much more enjoyable to friends and families.
The article notes pretty much that:
> Patients can roam much more freely than in many elder car facilities. Patients here require fewer medications, eat better and live longer.
A better "disruption" would be to find a cure, or at the very least slow the progress so people die from something else. There will be over 100 million people with dementia by 2050.
Some families get alzheimer's in their 40's. Your disruption is euthanasia? http://www.nytimes.com/2010/06/02/health/02alzheimers.html?p...
Plus, Alzheimer's can end up severely debilitating.
Other cancers can be screened for, but screening doesn't help your chances.
Yes, I understand the current state. That's why I said better detection. You die from pancreatic cancer, for example, because by the time you know you have it, it's too late.
It'd make a hell of a Twilight Zone episode! Old war buddies walk around with a notebook, counting their steps, methodically constructing a map, just for fun. When they realize there's only one exit, they argue back and forth about which one of them is senile... They bring in a couple more octogenarians to check their work. The ragtag group stakes out the one exit, they see young people coming and going freely... etc. Maybe it should be a comedy?
It's not a pleasant scenario to contemplate, but from the comments here (and my own feelings), I take it that it's a good thing as long as the people being manipulated are happy?
"It sounds at first like the dystopian plot of Dark City or The Truman Show..."
Actually, if there is a hell on earth, those places are about as close to it as you'll get.
The problem with severe dementia is that people forget - not only where they live, but whole swathes of time. They forget people, places, faces, all sorts of things (varying based on their particular condition). So they wander off, trying to go home or just to go somewhere else.
In many nursing homes this is handled by having locked wards, which are often completely indoors or have small fenced areas.
This is a more village like aspect, so someone can go and do normal activities without putting themselves at risk.
If you can't limit the freedom of the press, you can limit the access to it.
It seems wrong on an absolute level.
The alternative for patients with severe dementia is to be locked up - they have lost the ability to reason with the world.
Earlier in life, we do this with children: it's called preschool or daycare.
They're a danger to themselves and perhaps others if allowed to roam free.
There's the slippery slope.
Severe dementia -> some dementia -> wrongthink -> dissidents.
Not saying I agree with it, as such, but that's the chain.
The slope for this one is not particularly steep, and there's been no greasing of said slope (quite the opposite).
But spending time in nursing homes with many dementia patients gave me perspective on this. I don't know of a pleasant solution; this one sounds like an attempt to minimize the evils. Another alternative is to live with family members, but not everyone is willing to do that, and at some point it can get overwhelming to care for an angry, incompetent person.
In prisons, even if the people can't leave, they aren't lied to.
This story is great material for conspiracy theorists.