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.