The village of the demented

[Syt]

Not Languish, but a project in the Netherlands.

http://www.guardian.co.uk/society/2012/aug/27/dementia-village-residents-have-fun

The village where people have dementia – and fun

How is society to look after the ever-growing number of people with dementia? A curiously uplifting care home near Amsterdam may have the answers

Jo Verhoeff twinkles; there's no other word for it. She bounces from her sofa beaming, and takes your hand. Welcome, she says. It's nice here; you'll like it. The people are friendly and there's so much to do: shopping, cooking, bingo, the classical music club.

So it's a nice place to come and visit, once in a while. Jo comes quite often when she's not at work; she's a secretary in an office, you see, in Amsterdam. Lives with her parents in Diemen, not very far from the city. Her father's a bookkeeper.

Except ... wait. She has a husband, hasn't she? And two children, still small. Darlings, both of them. How can that all work? Especially since – now she comes to think of it – she actually sleeps here, sometimes. Doesn't she? She certainly eats meals here; very tasty.

But never mind. "You really must," says Jo, pushing this unwanted rush of apparently irreconcilable realities firmly to one side, "come and meet my family. All of them. They would love it, I'm sure. If you like, one day next week you can come to my house and have coffee. Would you like that?"

I would, like that very much, I say. But it's not going to happen, of course. Jo Verhoeff is 86. Her husband died a decade ago; her parents many years earlier. The kids are getting on a bit themselves now. Jo is confused. This is where she lives; doctors have diagnosed her as suffering from severe dementia. But like most of the residents at this curiously uplifting Dutch care home, she seems remarkably serene. In fact, she seems happy.

Dementia is widely acknowledged to be one of the most pressing problems facing health and social care systems. A report published this year by the World Health Organisation predicted that a continually ageing population in the developed world would mean the number of people with the condition was likely to double, to more than 65 million, by 2030, and treble 20 years later.

In Britain, an Oxford University study puts the number of people with dementia at more than 800,000, rising to more than 1 million by 2025. We spend £23bn a year on caring for the condition in this country, double the sum we spend on cancer and three times that on heart disease. A quarter of UK hospital beds are now occupied by people with the condition.

In March David Cameron talked of a "national crisis". As we live longer, and more and more of us develop the degenerative brain illnesses such as Alzheimer's disease, which are the most common cause of the condition, how society cares for people with dementia, he said, has become "one of the greatest challenges of our time".

Over the past few months, experts from around the world – Germany, the US, Australia, soon Britain – have been flocking to the unassuming small Dutch town of Weesp, half an hour south-east of Amsterdam, to see how one pioneering institution is dealing with that challenge. Hogewey, where Jo Verhoeff lives, has developed an innovative, humane and apparently affordable way of caring for people with dementia.

"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?"

The answer turns out to be this smart, low, brick-built complex, completed in early 2010. A compact, self-contained model village on a four-acre site on the outskirts of town, half of it is open space: wide boulevards, cosy side-streets, squares, sheltered courtyards, well-tended gardens with ponds, reeds and a profusion of wild flowers. The rest is neat, two-storey, brick-built houses, as well as a cafe, restaurant, theatre, minimarket and hairdressing salon.

Hogewey's 152 residents – never, warns Van Zuthem, "patients" – have all been classified by the Dutch NHS as suffering from severe or extreme dementia. Averaging 83 years of age, they are cared for by 250-odd full- and part-time staff (most of them qualified healthcare workers, the rest given special training), plus local volunteers. They live, six or seven to a house, plus one or two carers, in 23 different homes. Residents have their own spacious bedroom, but share the kitchen, lounge and dining room.

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."

The homes belong to seven different "lifestyle categories": not periods frozen in time, such as the 50s or 60s, but more moods evoked through choice of furnishing, decoration, music, even food. One is gooise, or Dutch upper class – all ornate chandeliers, lace tablecloths, fine dark reproduction furniture, and a kitchen discreetly concealed behind a screen; here, says Isabel, "the carers behave like servants. Many of the people who are here will have had a maid."

Here, too, is Johan Jacobs, resplendent in freshly ironed pink shirt, navy trousers and polished loafers, sprawled in a damask-upholstered armchair, grinning. He is, he says, "a businessman, from Amsterdam. Buying and selling." What sort of stuff? "Oh, lots." In Hogewey, he appreciates "the classical music club. And dancing". He winks. You've lost none of your salesman's charm, I remark: "Not for the ladies, certainly," he shoots back.

Across the courtyard is a house in ambachtelijke style, for people who were once in trades and crafts: farmers, plumbers, carpenters. The furniture is heavier, the curtains darker, the decor simpler. Huiselijke is for homemakers: neat, spotlessly clean, walls hung with wooden display cabinets for dozens of brass and porcelain ornaments.

Toos Borst, also in her 80s, isn't sure she lives here: "Do I? I don't know really. It's very nice, though I'd really prefer to be home, in Wateringen. You know it? Near the Hague. My mother's there. My father has gone, sadly. He had his own business; don't remember what exactly, but it was his. Here are pictures, look: my great-grandchildren."

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." Bang on cue, an elderly gentleman, Mr Stomps, inches past, pausing to pop a butterscotch in his mouth. "Lekker!" he exclaims, delighted. "Delicious! Exceptionally good."

In the hairdressing and beauty salon, Ingrid Scheermeijer is finishing off a perm. "They do sometimes get a bit confused," she says. "Forget where they are, you know, try to leave. And you often have to explain what you're doing every five minutes. They just drift ... But the upside of it is, you don't need to bother with any of the normal boring salon chat. And you should see their faces when they look at themselves in the mirror aftewards. So happy."

Other houses are designated christelijke, for the more religious residents; culturele, for those who enjoy art, music, theatre (and, says Van Zuthem, "getting up late in the morning"); and indische, for residents from the former colony of Indonesia (rattan furniture, Indonesian stick puppets on the walls, heating two degrees higher in winter, and authentic cuisine).

Last comes urban, for residents who once led a somewhat livelier lifestyle: contemporary Scandinavian-style furniture, Do the Locomotion on the stereo. Here Theo Visser, who used to run his own road haulage business, is sitting playing cards with his wife Corrie, 79; he travels eight miles from Naarden to visit her every day.

"We've been married 57 years," says Theo. "She looked after me all that time; it's the least I could do." Hogewey, Visser says, is "unique. The people here keep their independence, as much as they can have of it, and they stay active. Here they still have a life. It's not the sort of slow, quiet death you get in other places. Here everyone feels at home."

By the time Hogewey was finished, it had cost ¤19.3m (£15.1m). The Dutch state funded ¤17.8m, and the rest came from sponsors and local fundraising. 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.
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.

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.

"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."

Across the piazza, in the warmly lit, wood-panelled cafe, careworker Helene Westerink is leading 30-odd residents in the weekly classical music club. Slowly, as Strauss, Offenbach and Beethoven fill the room, white-haired heads lift off chests, eyes brighten, feet tap, hands start to clap. Joe Jacob smiles delightedly as he recognises the can-can.

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."

[garbon]

I so feel like we covered this before.

[HVC]

Man, I never wanna get old.

[Brazen]

I've read about this place before and it paints a very pretty picture of dementia as just being a bit batty and forgetting things.

When they design homes that can treat incontinence with dignity; wash people's hair regularly; dress them in their own clothes rather than someone else's several sizes too small; talk to them despite the fact they're suicidal at having lost almost their entire vocabulary; explain who people are with patience again and again without breaking their heart that a loved one has been dead for many years; then that will be a breakthrough.

[Razgovory]

What a badly written article.  It's like someone wrote it over a instant message program.  The people I've met with dementia are a pretty sad bunch.  Suddenly falling on the floor screaming that the angels are coming for them or that claiming they have to masturbate for Bill Gates to keep the Chinese out.

[crazy canuck]

I've read about this place before and it paints a very pretty picture of dementia as just being a bit batty and forgetting things.

When they design homes that can treat incontinence with dignity; wash people's hair regularly; dress them in their own clothes rather than someone else's several sizes too small; talk to them despite the fact they're suicidal at having lost almost their entire vocabulary; explain who people are with patience again and again without breaking their heart that a loved one has been dead for many years; then that will be a breakthrough.

Crap, I need to make sure I never ever have this problem.

[Berkut]

The problem I see with "solutions" like this is that I suspect the real reason the particular instance works is that some individuals who are exceptionally competent and caring are running the show.

That is great for this particular facility, but how do you scale it to 50 facilities just like it where you are not going to get exceptionally competent and caring people to run them?

[Kleves]

claiming they have to masturbate for Bill Gates to keep the Chinese out.

Well, do you really want to risk it?

[Razgovory]

claiming they have to masturbate for Bill Gates to keep the Chinese out.

Well, do you really want to risk it?

I got this feeling that if that if met Bill Gates, whipped out my dick, and started jerking off I'd probably go to jail.

[Josquius]

I so feel like we covered this before.

Yeah, IIRC I posted an article about it a few months ago.
Louis Theroux did a show about it (and dementia elsewhere).

[Malthus]

claiming they have to masturbate for Bill Gates to keep the Chinese out.

Well, do you really want to risk it?

I got this feeling that if that if met Bill Gates, whipped out my dick, and started jerking off I'd probably go to jail.

Well, you could make an experiment of it. 

[Malthus]

I so feel like we covered this before.

That's one of the signs! 

[garbon]

I so feel like we covered this before.

That's one of the signs! 

And I'm so young!