A few years back, I was taken to the hospital with meningitis. I've never been so sick in my life.
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.
> We don't realise how much of our identity is wrapped up in our intellect until it's removed.
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.
A significant part of my identity is in my body. I am an athlete: I am a skier, a runner, a biker, a swimmer, a disc golfer. I am someone who works with his hands: I am a programmer, a carpenter, an electrician, a painter, a mechanic.
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.
What good are your excellently developed periphery devices if the mind can't properly control them? They are as good as gone, except for maybe a little muscle memory for simple motions. But what good is the retained ability to perfectly hit the keys if the ability to remember a melody or formulate source code would be lost?
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.
This is actually completely false. There's no evidence that brain games or intellectually rigorous activities provide any benefit in preventing any neuro-degenerative disorders.
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.
> But ever since, I've been mortally terrified of alzheimers and the like.
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.
Dementia is the single thing I fear the most. Without my intelligence, I have literally no marketable skills (my body became unfit for heavy manual labor years ago).
I also watched my grandmother go through dementia in the last months before she passed away. It was hell.
Here in the Netherlands there is an ongoing trend in the care for the elderly with dementia to move away from the classical ward behind a locked door with keypad. This special village is one approach that works well with people who cannot function safely outside.
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.
I'm sure they exist but I don't think elderly care facilities are always locked wards. My grandfather recently had to move into an assisted living facility because he was forgetting to eat. The place is a couple miles from his house in a small rural town. He still gets freedom of movement and has his car but the staff monitor him and make sure his vitals are ok and he takes his meds/eats.
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.
> I'm sure they exist but I don't think elderly care facilities are always locked wards.
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).
Looks like a great way to allow some dignity and independence in ones final years. Would of loved this for my late grandfather or grandfather-in-law.
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.
> That said, it looks expensive. In my experience, nursing home care quality is correlated to cost.
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.
I imagine most people would only opt for euthanasia if they have an incurable disease or severely debilitated. If you are in reasonably good health in your 80's and 90's, you probably wouldn't choose death.
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.
And it does nothing for dementia sufferers because they cannot give informed consent and the nature of the disease is the mental equivalent of the frog in a slowly heated pot.
It's all fun and games until some old soldier figures out there is no functional exit and tragically kills a caretaker.
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?
While I was reading it, I was thinking that trapped-with-dementia might be a worthy ending for a paranoid fiction series such as The Prisoner or Nowhere Man. Did Philip K Dick run this?
The basic design is a circular corridor that the patients can pace without ever hitting a dead end. My grandfather made a successful escape attempt from such a place several years in such a place, with Alzheimer's. The gardener had left some barrels around. He managed to stack them and then climb the fence. Later arrested a couple of miles from the facility trying to get into an unoccupied car. Pride.
Having a Alzheimer's sufferer wander away is a story every single elder caregiver has in common. This solution seems much better than the usual solution of confinement to a room or apartment.
Apologies for the brief comment, but reading this I was struck with the thought: And this is what true AI will do about humans, if it's done right.
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?
From my experience watching grandparents with alzheimers in a nursing home whose primary treatment is pumping drugs into the patients, I wouldn't say they come off as happy.
Actually, if there is a hell on earth, those places are about as close to it as you'll get.
You can't keep them bed bound for N years until they die.
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.
Apparently, if they had any additional whitespace they'd fill it with mobile overlay ads that are near impossible to close. Too bad, the story concept was appealing.
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.
I wonder if they still tell people the truth, that they're in a facility. Even if people might not understand or remember that, I feel it's a very important distinction.
In prisons, even if the people can't leave, they aren't lied to.
Telling someone with dementia the truth can be difficult. I don't mean this figuratively, I mean it literally: it is a difficult process because they do not believe you. If you constantly try to tell them the truth, you will constantly argue with them. I found this segment from the This American Life radio program enlightening: http://www.thisamericanlife.org/radio-archives/episode/532/m...
It's something that happens organically already. People pick their news sources and have vastly different views of the world. Pick any world event and see what you can learn about it outside of mainstream sources or sites that feed from them.
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.