Dementia with Dignity

I’ve been interested in philosophy outreach to the community lately. I coached a high school ethics bowl team in the fall. In two days, I give my first philosophy lecture to a local retirement community. I am ridiculously excited about this.

Coincidentally, yesterday, beloved reader Kazzy gives me a heads up on a very interesting retirement community in the Netherlands. Hogeway consists in a self-contained village. Residents (not patients) may choose the decor of accommodations they prefer. All are homelike. Caregivers wear street clothes. Within the community, residents wander freely.  From The Guardian article (which is an excellent article, so forgive me, I quote freely):

“What happened,” says Isabel van Zuthem, Hogewey’s information officer, sitting at a cafe table on the home’s wide and welcoming piazza, an ornamental fountain playing behind her, “is that back in 1992, when this was still a traditional nursing home for people with dementia – you know: six storeys, anonymous wards, locked doors, crowded dayrooms, non-stop TV, central kitchen, nurses in white coats, heavy medication – two of the staff who worked here unexpectedly lost their mothers.

“Each said to the other: Well, at least it happened quickly, and they didn’t end up here; this place is so horrible. Then they realised what they’d just said, and started to think: what kind of home would we like for a relative with dementia? Where might we want to live, maybe, one day? How would we like our life to be; what would we hope to experience?”…

Two core principles governed Hogewey’s award-winning design and inform the care that’s given here, says Van Zuthem. First, it aims to relieve the anxiety, confusion and often considerable anger that people with dementia can feel by providing an environment that is safe, familiar and human; an almost-normal home where people are surrounded by things they recognise and by other people with backgrounds, interests and values similar to their own. Second, “maximising the quality of people’s lives. Keeping everyone active. Focusing on everything they can still do, rather than everything they can’t. Because when you have dementia, you’re ill, but there may really not be much else wrong with you.”

So Hogewey has 25 clubs, from folksong to baking, literature to bingo, painting to cycling. It also encourages residents to keep up the day-to-day tasks they have always done: gardening, shopping, peeling potatoes, shelling the peas, doing the washing, folding the laundry, going to the hairdresser, popping to the cafe. “Those small, everyday acts are just vital,” says Van Zuthem. “They stimulate; give people the feeling they still have a life.”

I could not agree with this anymore, and am admittedly choked up that someone took the initiative to do this. I have written before that sterile hospital environments contribute to compassion fatigue on the part of staff and family members, and depression and a sense of dehumanization for the patient. How much more is this magnified in a long term care setting? Every single medical setting that involves overnight stays should strive for an approximation of a home to the degree that it can. About costs:

Nor is the cost per resident of this radically different approach to dementia care much higher than most regular care homes in Britain: ¤5,000 a month, paid directly to Hogewey by the Dutch public health insurance scheme, to which every Dutch taxpayer contributes through their social security deductions. Some residents also pay a means-tested sum to their insurer. There is a very long waiting list…

“We can still do more. But in general, I think we get pretty close to normal. You don’t see people lying in their beds here. They’re up and about, doing things. They’re fitter. And they take less medication. I think maybe we’ve shown that even if it is cheaper to build the kind of care home neither you or I would ever want to live in, the kind of place where we’ve looked after people with dementia for the past 30 years or more, we perhaps shouldn’t be doing that any more.”

There is a suggestion from a couple of quarters that Hogeway involves deceit. From The Guardian:

Hogewey was, in its early days, dubbed a Truman Show for the elderly and sick, after the Jim Carrey film in which reality turned out to be the set of an elaborate TV show. The home is, admits Van Hal, “not completely normal. We pretend it is, but ultimately it is a nursing home, and these are people with severe dementia. Sometimes the illusion falls down; they’ll try to pay at the hairdresser’s, and realise they have no money, and become confused.

From another site:

But unlike the typical elder care facility, Hogewey does not try to get its residents to adjust to a new reality. Rather, Hogewey crafts a reality around their residents’ delusions.

This suggests that Hogeway is a Potemkin village, that it involves trickery. I just don’t see how this is the case. Some people need long term care. As long as you are not telling them they are somewhere they are not, as I certainly hope is not the case at Hogeway, why shouldn’t it be as close to normal as possible? That’s not crafting a reality around their delusions. That is creating a humane environment where people can thrive. This a real hairdresser. The cafe is real, where community members come and eat. The market is a real one, etc.

This isn’t solely about making an experience machine  or creating The Matrix for the residents. If it were, that would be one thing. My son has cognitive disabilities. When I think of his eventual flourishing, and the flourishing of anyone with cognitive disabilities, what is most required is the following: autonomy and community involvement. These sound opposed- they are not. Anyone with cognitive disabilities should be an active, participating member of the greater community. Both autonomy and community involvement should be maximized to the degree possible for the greatest quality of life not only for the residents, but also for the caregivers, families, and communities. And it seems that Hogeway at least says it does just that.

Outside in the sunshine, residents sit at garden tables in front of their houses eating ice-cream. Washing hangs on a line. No doors – apart from the main entrance, with its hotel-like reception area – are locked in Hogewey; there are no cars or buses to worry about (just the occasional, sometimes rather erratically-ridden, bicycle) and residents are free to wander where they choose and visit whom they please. There’s always someone to lead them home if needed.

Across the square with its boules and giant chess set, others are gathered round an old-fashioned sweet stall, sucking on humbugs and liquorice bonbons and swaying to traditional Dutch oompah music from the 1950s. “They did it themselves,” says Marjolijn de Visser, a cheery young careworker in jeans and T-shirt, pointing to the brightly-painted shutters on the stall.

“It’s really important that residents feel they’re contributing, doing absolutely as much as they feel able. And the sweets … Well, they may summon up a few memories. Take them back a bit.”

The home is proud of its relationship with the community, says Eloy van Hal, the facility manager, in his office behind the reception area: anyone can come and eat in the restaurant, local artists hold displays of their work in the gallery, schools use the theatre, businesses hire assorted rooms for client presentations.

Now Mary-Ann van den Brug’s fingers are playing Für Elise on an imaginary keyboard; she once taught at the conservatory. Another resident conducts the Blue Danube; a third starts tapping her teaspoon against her saucer in time to the Radetsky March. “There’s one woman here,” says Westerink, “who hasn’t spoken for years. But she sings along to all these tunes. You know, sometimes it’s not just the residents who feel good about being here.”

I don’t know if Hogeway is everything it is cracked up to be. If it isn’t, the ideas described in the article are a model for dementia care.

[UPDATE]: Had forgotten to link to the original article by Jon Henley from which I quoted so freely. Link now added. My apologies.

Rose Woodhouse

Elizabeth Picciuto was born and reared on Long Island, and, as was the custom for the time and place, got a PhD in philosophy. She freelances, mainly about disability, but once in a while about yeti. Mother to three children, one of whom is disabled, two of whom have brown eyes, three of whom are reasonable cute, you do not want to get her started talking about gardening.


  1. Thanks, Rose!

    As a bit of background, I initially read a far-less-thorough description of the facility and initially thought, “That’s awesome!” But then I thought more about it and wondered about the risk of deceit and the ethics therein. Then I remembered there is no one better than Rose to tackle such a topic and I came to her hat in hand and she wonderfully obliged. I have not been but my wife has been touched personally by Alzheimer’s, so it is a topic I am trying to better understand myself and it is great to hear that some apparently really impressive efforts are being made.

  2. Of my four grandparents, two suffered from some kind of dementia in their waning years. (The other two had strokes, so when I shuffle off this mortal coil, it’ll probably be my brain that goes.) All lived in extended care facilities/nursing homes before they died. This is the kind of place where I would have wanted them to go, and where I would want to go were I in need of this kind of care.

    I have essentially no qualm with the low-level dissembling that makes Hogeway work. Perhaps it’s not “real” in the way that the workaday world is, but its unreality is in service to its purpose, which is beneficent. Short of curing the dementia itself, is there a more humane, laudable solution to be found?

    • Considering that this is the first time I’ve heard about extended care for people with dementia that makes me think, “Hey, if I’m diagnosed, maybe I *won’t* want to kill myself”, this is something to shout about from the rooftops.

      Really loud shouting. We need to do this here.

    • I agree, Russell. My grandmother, aunt, and father all died with Alzheimer’s (or some sort of severe dementia that we all assumed was Alzheimer’s), and such a place would have been a better one for them, assuming it’s as it’s reported.

      We (to be truthful, my siblings…they did all the work while I was in school in Chicago) did try to find a nice place for my father that in some particulars seems to have resembled the place in the article, but he got too violent (he was more than 6′ tall and very, very strong, even in his 70s) and so he had to go somewhere more “institutional.”

  3. Mies van der Rohe: God is in the details.

    Buildings are for people. They are the stages for the plays of our lives. Ugliness betrays a lack of vision, often outright contempt for the inhabitants. It doesn’t cost any more to make an environment inviting than hostile. So what if it’s a bit artificial if it’s appropriate?

    A Grimm’s tale comes to mind. An old man lived with his son’s family. He was old and trembly and slobbered soup in his beard. They made the old man eat from a wooden bowl away from the table. The old man wept but he did as he was told.

    Their little boy began to make a wooden trough. Why are you making this, his parents asked. For you to eat from when you are old. Thereafter the old man was invited to eat at table and nobody said anything if he spilled a little soup.

    • Buildings are for people.

      Something modernist architects rarely understood.

      • Other than a few roofs leaking, I think midcentury modern seems to be pretty decent.

        • It’s dehumanizing. Not that I don’t like some minimalism, mind. But an excess of minimalism leaves the visual landscape devoid of interest. And the buildings tend to lack distinctiveness and personality (tend to; in the hands of an excellent architect, modernism can be awesome). And it tends to really lack a sense of play, of fun just for the sake of fun, which is so important to humans (and other species as well). And their insistence on being “true” to the materials, and focusing on making a building that is true to an abstract ideal instead of to the humans who have to interact with it meant that human needs were discounted except when absolutely necessary.

          Consider the World Trade Center buildings destroyed on 9/11 vs. the Chrysler Building. If we could set aside the human cost and just focus on which building(s) would be a greater loss of material culture if destroyed, the Chrysler Building wins hands down.

          I’m not against all modernism in architecture. I’m against an excess of it, and against sticking to it so devoutly that humans become merely a secondary, maybe even tertiary, consideration.

          • Aren’t we into postmodernism by now?
            Modernism seemed most fun when they were talking about bringing the outside in… glass walled buildings, etc.

          • the visually awesome thing about brutalism is its inhumanity. it says “you are as dust upon the wind, suckas”.

          • wow. dhex, that is really, really powerful.
            And a great representation of Church of the Light, in Osaka.


          • Kim–yes, making the outside more visible was the best part of modernism (well, that and its efficiency for rebuilding a ruined Europe). And I’ll admit that I really enjoy those modernist buildings that put the structural support on the exterior, for us to see how a building works. A whole city of that would be depressing, but a few examples scattered around are very interesting.

            And, yes, post-modernism is upon us and has been for some time. It’s sometimes pointless (as are all forms of post-modernism), but it brought a sense of playfulness back into architecture that was sorely needed.

            Dhex–Brutalism, yikes. What a bizarre concept. It’s like someone said “modernism is all right, but it’s not quite anti-human enough.”


            sorta, yeah. i see it as that kind of “nostalgia for the future” (as imagined in the past), though that seems to be more of a british thing than an american thing, to be sure. it’s a dream of the future that never happened. i’m reading a book called “militant modernism” right now that touches on a lot of these themes.

            but these considerations aside, how totally boss is that church? i want to live in it.

          • Ah, I should clarify, I wasn’t referring to that church. I meant things like this.

            re: “nostalgia for the future as imagined in the past, british ed.” – this would be then the sort of Ballardian thing?

      • I think that depends on the architect. I am not one for brutalism but I dislike houses that are overly ornate and clutred, Tudor gloom, or McMansion false grand.

        Though I think my ideals are New England Colonial with lots of natural light, loft, California Craftsman, Brownstone, etc.

  4. Hogewey does not try to get its residents to adjust to a new reality

    Is it just me, or does that criticism betray a critical lack of understanding about Alzheimers’ patients adaptability?

    • My grandmother with Alzheimer’s was of course adaptable in certain ways. But abrupt changes, although she could not name them, clearly were disorienting. She did not recognize me, and indeed was far nicer to me than she had been. But still reacted differently to me than a total stranger. Or, I hate to say it, people of different races, ethnicities, etc. (something she never voiced openly before).

      • To shift to a slightly different line, it’s odd enough that we would expect people with normal cognitive functioning to adjust to living in a highly institutional and non-stimulating environment, much less demand that of folks with diminished cognitive functions.

  5. As to this facility – I think it’s a great idea. And I would go further (please understand, this is not a joke):

    For the elderly, people who are going to spend the rest of their remaining lives in a facility like this, I would like to see them provided with relatively-free access to drugs of both the painkilling and/or recreational varieties. All of the arguments and reservations we have against younger, able-bodied and -minded people messing up their minds, bodies and lives, just don’t seem to apply anymore.

    So what if you get addicted to say opium and need a maintenance dose daily, or spend your time dreaming on a bed of pillows? You have no job to lose; no fine mind to dull; no family to break apart; no ambition to destroy.

    If addictive drugs strike some here as immoral even at advanced ages (though as I said, I can’t see why), well, how about pot brownies at afternoon teatime?

    In the twilight of people’s lives, why would we *not* provide them with maximum pain alleviation; and more than that, some small measure of pleasure, when so many others are now lost to them?

    • You’ll give people an odd incentive to fake being old.

      “NO! I swear! I’m 70! I just look young! Take me to the pillow bed!”

      • Maybe that’s how we’ll keep young people off them.

        We tell them, “don’t do drugs now, or we won’t give them to you when you are old and REALLY REALLY NEED THEM.”

        • So if I get a vasectomy, it’s hash and GILFs all day? Sign me up!

    • Maximum pain-relieving, no doubt. Pot brownies – why the hell not? I do worry about opiates not for pain relief. The autonomous choice to use them ironically decreases autonomy and activity.

      • And also increases risk of constipation, I gather from “Trainspotting”. OK, maybe not opiates then (or at least, no more than are medically indicated for pain relief).

        Still, the general sentiment stands. If our fear simply boils down to “they’ll get hooked”, I don’t think that “hooked” alone at that advanced age is much of a concern, since an addiction (so long as maintenance doses can be obtained) will not necessarily be detrimental to their lives in the way that it is to a younger healthier person with other alternatives (the inherent problem of addiction is the way its inexorable pull can make us potentially forgo other pleasures and positive aims).

        • Thinking about this some more, a perfect example would be nicotine. It’s my understanding that nicotine sharpens mental acuity, while obviously being extremely addictive and providing pleasure sensations.

          Giving these patients The Patch might be a win-win, so long as their hearts are strong enough for the stimulation (again, this is not a joke).

  6. My mother has dementia (but, thankfully, not Alzheimer’s) . There’s a lovely facility near where she lives (my wife and I would love to live there!), but they don’t care for residents with dementia, they’re way too expensive and she wants to stay in her home (it’s very comfortable, and one one story).

    Currently, her expenses vastly exceed her income. She has money in trust but it’s going to run out in about 2 years and she’ll probably have to move. I don’t know what will happen to her then…

    • Jeff, I hope there is a livable solution for you guys.

      My husband’s aunt has autism and mild intellectual disability and has never lived independently. Were she raised today, she possibly could have lived at least semi-independently and had some sort of job (movie ticket-taker, what have you). She is socially awkward and developmentally maybe 10 years old, but can read and has language. But as it is, she lives with and is utterly dependent on my mother-in-law. My mother-in-law is a widow who is in her 60s and, while not unhealthy, is obese. She has no money and has not made a will. We are dragging her to a lawyer soon to figure out what we can do so that we can have a humane living situation for my husband’s aunt, so we don’t end up living with both an elderly person and a child with cognitive disabilities.

  7. “Ah, I should clarify, I wasn’t referring to that church. I meant things like this.”

    city government should be as byzantine and kafkaesque on the outside as it is on the inside! it’s why so many soviet buildings are majestically hateful.

    on the other hand maybe i just like squares.

    “re: “nostalgia for the future as imagined in the past, british ed.” – this would be then the sort of Ballardian thing?”


    nsfw because of 70s sci fi boobs, if tasteful

    simon reynolds uses the failed promise of disney’s tomorrowland as an example of where an american might feel this (seemingly distinctly british) kind of longing for a promised future that never was and never could have been, probably. i’d point to nasa as a major driver of this, too. patriotism and aspiration and adventure and a vast engine of novelty just waiting to be ridden.

    heck, i know some ‘ardcore you know the score libertizzle types who absolutely adore the promise of space as sold to them when they were seven years old (and resold to them via dodgy paperback books for the next few decades).

    me, i don’t truck none with dogs nor the rockets that launch them into space to die cold and alone, hopelessly barking for a mercy killing denied them by a universe whose laws know neither love nor pity but only mindless endurance, but dang if i don’t like me some crazy square concrete blocks.

    but seriously though that church is totally boss. i used to think i only wanted to live in the warehouse gene hackman has in the conversation, but i was wrong wrong wrong.

    • heck, i know some ‘ardcore you know the score libertizzle types who absolutely adore the promise of space as sold to them when they were seven years old (and resold to them via dodgy paperback books for the next few decades).


      • see man? nasa got to you too!

        one small step for man, one giant leap for mind control.

  8. This suggests that Hogeway is a Potemkin village, that it involves trickery. I just don’t see how this is the case. Some people need long term care. As long as you are not telling them they are somewhere they are not, as I certainly hope is not the case at Hogeway, why shouldn’t it be as close to normal as possible? That’s not crafting a reality around their delusions. That is creating a humane environment where people can thrive. This a real hairdresser. The cafe is real, where community members come and eat. The market is a real one, etc.

    Heard a piece on All Things Considered this afternoon on workshops for families coping with alzheimers. And they recommended this very thing — finding and living with the patient’s reality, not trying to bring them to your reality.

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