Dementia Village: Holland’s civilized approach to treating the elderly

The Netherlands has a novel approach to treating dementia. And it’s called “Dementia Village.”

The reality of Alzheimer’s Disease

I wrote a bit earlier on Alzheimer’s Disease (AD), a type of dementia. I discussed how Alzheimer’s is a progressive, ultimately fatal, disease that causes a number of problems including memory loss, confusion and some others.

Millions of Americans have Alzheimer’s, and other millions will get it. (And there are other kinds of dementia people suffer from as well.) There is no good treatment to stop or even slow the progress of Alzheimer’s.

Let’s take a look at what could happen to the “average” Alzheimer’s patient.

Currently, diagnosis is almost always made after the patient begins to display symptoms. Often it starts with memory loss. At first, the patient may just need to leave himself reminders to do things like keep appointments, refill prescriptions and pay bills on time. With progression, he may need someone else to help provide reminders. He may become disoriented and get lost. He may become more irritable and withdrawn. He may start to hear voices, or see people who aren’t there, and may become suspicious of family members. He may eventually need help with activities of daily living (ADLs) like bathing, dressing, eating and using the bathroom.

As the disease progresses, he’ll usually need more and more assistance from others. Often these others are family members, a spouse, children, siblings and other relatives or friends. As the dementia worsens, he may need someone available around the clock to make sure that he doesn’t wander off or injure himself (some patients, but not all, may spend a good part of the night wandering around the house, while sleeping during the day — making it even more stressful for family members). At this point, it sometimes becomes too much for the family members to take care of him. They may need to hire an outside caregiver to help the patient and provide a break for the family. With continued progression, the patient may need to be placed in a nursing facility.

The nursing staff in such a facility has a limited amount of time to spend with each patient. Patients with dementia (and not just Alzheimer’s patients) can easily require a lot of time per patient. One reason may be that the patient with dementia often gets up and wanders. The nursing staff then has to guide him back to his room. The patient may be interested in TV or a movie, but often only for a short time. Then, becoming restless, he’ll be on the move again. In a nursing facility, the number of things available to distract or entertain dementia patients is limited. The patient, and staff, can become frustrated.

Dementia Village

There is an alternative care setting available in the Netherlands. It’s called “Dementia Village” (De Hogeweyk).

Dementia Village is an area set up in a small town, where Alzheimer’s patients, and other patients with dementia, live and receive care. Instead of being set up like a nursing facility, the patients live in apartments, on landscaped grounds. The “village” also has a supermarket, and other shops, a theater, bingo hall, coffee shops, a cinema and other places for the patients to visit. The whole area is discretely walled off so that the residents can’t wander off the property.

A room at Dementia Village.

A room at Dementia Village.

The residents live 6 to 8 each in a large apartment. There are several different themes for the apartments to try to make them more home-like for the patients. The nursing staff, during their shifts, actually lives in the apartments with their patients. They’re not at a nurses’ station that may be far away from the patients’ rooms. The nurses and nursing assistants wear street clothes.

They encourage the patients to interact with each other and the staff in the apartment. The patients who can, are encouraged to help with tasks like cooking, cleaning, bed making and other things that they would normally be doing at home. The patients are free to leave the apartment and meet with other patients, or visit them in their apartments, go shopping, have coffee at a cafe, get their hair styled, see a movie or do anything else that the “village” offers.

A room at Dementia Village.

A room at Dementia Village.

All of the shopkeepers and other employees at the village are trained to deal with demented patients. For example, if a patient says he is buying dinner at the supermarket, and then selects inappropriate foods, the shopkeepers will remind him of what he needs to buy. Or the merchant can call the apartment where the patient lives and a nursing assistant will come to help.

Visitors are permitted to see the patients any time, and can stay for as long as they want to stay. They can visit in the apartment or take the patient out into the village to play bingo, watch a movie, go for a walk or do something else. Administrators at the village say that they are disappointed that not as many visitors come as they would like. That may be in part because it can be difficult to visit a relative who no longer remembers you, or who forgot your last visit entirely.

The cost for living in the village is approximately what it would be to live in a nursing facility. Most of the cost is covered by the Netherlands’ version of Medicare.

Some other countries in the EU are looking at opening similar villages as long-term care facilities for those with dementia. It may be something that might get copied in the US, as well. Certainly this seems like a more comfortable and humane way to treat dementia patients than to keep them in a nursing facility.

Mark Thoma, MD, is a physician who did his residency in internal medicine. Mark has a long history of social activism, and was an early technogeek, and science junkie, after evolving through his nerd phase. Favorite quote: “The most exciting phrase to hear in science... is not 'Eureka!' (I found it!) but 'That's funny.'” - Isaac Asimov

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24 Responses to “Dementia Village: Holland’s civilized approach to treating the elderly”

  1. bandanajack says:

    i made it out the other end of that tunnel alive, but it broke my health. stress like you cannot imagine, when a parent, even one estranged, is suddenly absolutely dependent on you, and at the same time is a danger to both you and themselves. i hope you have family to support you and the full weight does not fall on your shoulders. the alzheimer’s association was useless, and florida has no resources thanks to years of republican administrations. ask loudly and often for help.

    i escaped to hawaii, to live out my days the best i can on social security here, not an easy task, but a challenge i welcome.

  2. skiidahonorthsouth . says:

    Have to wonder how many commenters supporting this concept have any clue that this is pretty close to what we had here well into the mid 1900s. Church run hospitals, city and county run convalescent homes, and county-state-federal cooperatively funded veterans homes.
    Why did they disappear? Because “We the People” demanded it. Nothing to do with the wealthy, this was pure middle-class penny-pinching…ironic (maybe poetic?) that the generation responsible for the downfall of these “Inefficient” services are now the ones who need them.
    LONG before it was a national issue, communities used to take care of their own. The gullible masses flocked to the idea that somehow, someone else could pay, and voted accordingly.
    Yes, absolutely this concept is a great idea…we’ve been there, done that, and CAN get back to it…As soon as people stop trying to get someone else to cover the cost of their care and decide that maybe a nominal local tax (Sales, property, income, etc) is not devil’s spawn. Biggest hindrance at this time?..the notion that we’re all saved by Obamacare.

  3. Husserl says:

    I am a Dutch citizen. I looked around a bit and wonder exactly how this works. Every resident of the Netherlands has to buy a private insurance policy, as the privatised care system is quite like Obamacare. But this is financed from a special fund. It’s public. To use these homes your municipality must medically assess you and determine the degree of your care needs. Then there is a waiting list. The complex is in one of the country’s most expensive areas. What I have read in Dutch confirms this article. But as healthcare and living allowances are being cut throughout Holland, I am doubtful that this set-up will be expanded much, *especially* as this special fund is being cut itself. Still, a great idea from a country which never had a general single-payer system and whose assistence to the elderly is vanishing thanks to European right-wing political policies.

  4. Dan Cobb says:

    This is what a civilized country looks like. Michelle Obama had it right before the 2008 election when she was quoted as saying that America is a MEAN country. The Koch brothers are mean, and they, and their .1% buddies are shaping this country with their billions in campaign contributions to make it as Darwinian as possible. And MEAN. Elderly and sick are punished and not provided for… for being elderly and sick. Their usefulness has been exhausted. The USA is sociopathic in its laws related to a social safety net.

  5. emjayay says:

    There is a movement in the United States in this direction on a smaller basis. No doubt the main difference is lack of the evils of Socialism.

  6. BeccaM says:

    That is a good question. Or, for that matter, how do they handle a patient who simply won’t respect the space or privacy of others? But I suppose the ‘combative’ patient scenario comes even before that.

  7. docsterx says:

    All of the insurances I’m familiar with have a 6 month maximum for hospice care. I’m sure they want to limit the maximum benefits they have to pay out per patient. I think in the rare event that a patient needs more than 6 months, the insurance company should review the individual case. If the patient still meets criteria for hospice, it should be continued.

    No, it’s impossible to give an idea with any certainty as to when someone will die. I’ve seen patients who, I thought, would be dead within minutes survive and go home. I’ve seen others, ready to go home have a cardiac arrest, stroke or some other catastrophic event and die. But more often, when a patient is near the end of a terminal illness it becomes apparent that the end isn’t far off. And that end usually happens in much less than 6 months’ time.

  8. docsterx says:

    Right. Having some autonomy is important. But autonomy is extremely limited in a hospital or skilled nursing facility setting.

    I agree that the kind of relaxed watching and gentle guidance seems to be the way to go in dealing with patients, any patients, demented or otherwise.

    One thing that none of the articles I read mentioned was, what do they do with a patient who becomes combative. Some patients can become violent and strike out at fellow patients and staff. I wonder how they handle that situation in an apartment setting-after all, the other patients and staff need to be protected.

  9. Silver_Witch says:

    Every time I hear a republican whining about Socialism – I want to ask them what exactly is so wrong with it. This post is the perfect demonstration of what is right about it….and yet we americans vote against our own better interest every time…just because we think we might get the golden ticket and join the 1%. Not very likely.

    So sorry about your Mother-in-law, so happy though that she is getting good care.

  10. Silver_Witch says:

    Actually – I believe that you have to be within six months of dying to get hospice through Medicare (which a lot of people end up on after a devastating illness). My neighbor lived beyond the six months (not much but beyond) and they were threatening to take away her hospice care. How, exactly do we know when someone is within a few months of death? Should there really be a time limit so short?

  11. Silver_Witch says:

    Especially those who have worked hard all their lives and then have the gale to get such a horrible disease as Alzheimer. It is always like that if you are mentally ill…..a village like this for the mentally ill, would be swell too.

  12. Mark_in_MN says:

    It looks like a wonderful idea. I hope it does get imported to the United States. I’m particularly like that the village tries to provide safety and necessary care while also offering some semblance of normalcy, options for daily life that don’t need to be super structured, and possibilities for more normal social interaction. I would think that the last bit is particularly important. I don’t know if there is any research to bear this out, but I suspect that such interaction and stimulus may actually be beneficial. As a whole, it appears to be humane and compassionate.

  13. BeccaM says:

    You’re probably right — litigiousness is definitely an issue, as is the fact we seem to have such a difficult time accepting the inevitability of our own deaths. You’re totally right, how we really don’t use hospice care or even assisted living anywhere near as much as we ought to.

    Sadly, that notion right there, of somehow feeling it’s just ‘not safe’ for an adult suffering from dementia to have even a small degree of normalcy is telling. I don’t know about you, but from my own feelings on it, one of the worst aspects — besides forgetting those you love — is the loss of dignity. Something as simple as deciding your own bedtime and how long you want to sleep, or what you want to eat for dinner, or anything, they’re the little things you’d want most to hang onto. The sense of just a little autonomy and self-determination.

    One of the details you mentioned in there really struck me. How instead of simply no longer allowing someone to try to shop for themselves, the Dementia Village approach is only to intervene when a mistake is being made. And to do so in a gentle way, just the reminder.

  14. docsterx says:

    But there are differences. The patients in the Netherlands are loved, the politicians, not so much. The politicians shouldn’t be allowed out without escorts. The Dutch and the government pay for those in the Dementia Village. In the US, the lobbyists would pay for Congressmen to be admitted. The Congressmen/patients would want to control the nursing staff, including their sex lives at home. Congressmen would want to be able to have concealed carry in the village. Congressmen would want private suites, not group apartments with the plebeians. And they’d require a gated community. Though, if it would keep them off of TV and away from the Hill, it might be worth it.

  15. docsterx says:

    I wonder how popular a program like this would be in the US. Look at the hospice program that was imported from Europe decades ago. It’s certainly grown in the time it’s beei operational in the States. But the majority of patients who enter a hospice program die within the first few days. Most of them are eligible to enter the program earlier and could benefit from pain management, pastoral care, home visits (or may be placed in an inpatient hospice), social services and many other features. But often, the patient and/or relatives decide that hospice is “giving up” and don;t want the patient admitted for terminal care until the last minute.

    I’d think that some Americans would probably find fault with a dementia village, too. I can imagine people saying things like it’s not safe to let the patients out on their own. They might go out in he rain or snow and get wet, or fall. They shouldn’t be allowed to cook-might burn or cut themselves.

    Also, since many Americans seem to be prone to sue if an accident DOES happen, I’d guess that a Dementia Village in the US would be very wary of letting patients do just those things that make the village so homey go out on their own, cook, clean, etc. because of the possibility of injury.

  16. BeccaM says:

    Fantastic idea, and incredibly compassionate. The idea of being surrounded by people that will take care of us, and with the possibility of newly made friends nearby, would come close to making a diagnosis of dementia almost bearable.

    Unfortunately here in America, our culture is that sick people are supposed to suffer horribly, and to be a soul-crushing burden on their immediate families. We’re supposed to turn over all our savings and worldly possessions to those who don’t need them — the wealthy — and then crawl off to die somewhere, forgotten.

    To do otherwise would require us to stop confusing righteousness and self-reliance with cruelty and selfishness.

  17. 2karmanot says:

    So true.

  18. 2karmanot says:

    I know that story. My heart goes out to you!

  19. SL Abrin says:

    The sort of common-sense compassionate and thoughtful care-giving offered in Europe will NEVER happen in the USA. Never. This is why I keep a revolver with one bullet handy. I know that my country doesn’t give a shit about its citizens enough to support them in time of need.

  20. askog says:

    We have been dealing with my mother-in-law’s dementia for the past several years. It has been difficult, as my husband is an only child and she lives in another country. We are eternally grateful, however, that the country she lives in is Sweden. Every step of the way — from getting in-home help to moving her to a managed facility — we have dealt with professionals who were caring and supportive. When we first started going through this process, people asked us why we didn’t just move here here. Two answers: First, she has lived in Sweden her whole life, and dementia is hard enough without moving her to a new country. Second, we never could have afforded the care she needs here. In Sweden, she is staying in a very nice facility that charges her less than her monthly pension, so that there is some leftover money for hair care, pedicures, wine/beer, etc. (I believe, but am not sure, that they charge each person a percentage of their incomer.) She is 89 years old and in very good health other than the dementia, and we are comforted by the fact that she will never be destitute, thanks to Swedish-style socialism.

  21. nicho says:

    We have a taxpayer-funded dementia village here. It’s called Congress,

  22. I feel terrible for you. Have been dealing with some dementia issues, on and off, with my bad since his surgery last year. And I don’t see how family members survive. Forget about financially, just emotionally. But financially too. Who can afford these retirement homes? It pretty much guarantees that whatever savings your parents have, or their home, is gone. And if they don’t have savings, they’re in even more trouble.

  23. zerosumgame0005 says:

    very much in line with the American tradition we have of punishing the sick and elderly for the “crime” of being sick and elderly or having a terminal sickness….

  24. bandanajack says:

    oh my, after 2+ years of trying to deal with my mothers previously undiagnosed dementia by myself in a state with little to no available funding for supporting the ill or the caregivers, what i wouldn’t have given to see my mother set up in this type of place. i did get her in an independent living apartment building that managed to do quite a bit of this, but only in the earlier stages. once medicines had to be managed or opportunistic illnesses further disabled the patients, the cost rose exponentially and beyond what most care plans could manage. so the only place i could get my mother into was a step or two above a snake pit, there was nothing to be done that could have prevented it. sad and incredibly draining, as i was already a senior myself and living on social security,

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