The Comforting Fictions of Dementia Care

Many facilities are using nostalgic environments as a means of soothing the misery, panic, and rage their residents experience.

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A few miles southeast of Amsterdam, in the small town of Weesp, is De Hogeweyk: a nursing home for people with advanced dementia which is both the source and the most fully realized version of many of the ideas in dementia care that are now being experimented with in Chagrin Valley and around the world. De Hogeweyk, which was founded in 2008, is far more elaborate than the Chagrin Valley streetscape: it is a three-and-a-half-acre campus of two-story buildings which looks like a modern neighborhood in a Dutch city. The front entrance opens onto a large outdoor courtyard with a fountain planted with trees and flowering bushes. In one corner stands a theatre, which hosts regular performances. On the other side of the courtyard, a glass door leads into a small indoor mall that houses a restaurant; a pub, the Café de Hogeweyk; a room for art and cookery classes; and a little supermarket. From the main courtyard, a passage leads past more storefronts—a physiotherapy center; the Mozart room, where the classical-music club meets—to other courtyards, where the residences are.

Staff at De Hogeweyk refer to the places where residents gather, and which are designed to look like normal homes or shops or courtyards, as “onstage.” “Backstage”—the administrative and medical infrastructure of the nursing home, the charts and the records, the medications and the stretchers—is kept out of sight. Everywhere in De Hogeweyk, the physical and psychological atmosphere is curated with attention to the tiniest detail. The Mozart room, for instance, is decorated with chandeliers, gilt mirrors, and busts of well-known composers, so as to create a setting congenial to aficionados of classical music. Activities, it is thought, are more convincingly enjoyable if they take place in appropriate surroundings, and it is also important, if the houses are to feel like homes, that club activities take place elsewhere. After all, in a normal living room you don’t have strangers coming in and telling everyone to start knitting or baking or listening to Mozart. But although De Hogeweyk is in some ways a stage set, to call it fake would be too simple. The supermarket, for instance, is part real, part fake: there are few price tags, and most transactions don’t involve money, but the store stocks real food that is needed to cook real meals in the houses, and, when the aides bring residents to shop there, their purchases are tallied at the checkout.

Spread across the complex, there are twenty-seven housing units, divided among four different “life styles.” De Hogeweyk’s founders wanted life there to feel normal, which to them meant that you lived in a small, family-size group—no more than seven—consisting of people like yourself in matters of background, taste, and ideas. At the haute-bourgeois “Gooise” houses, for example (named for Het Gooi, a prosperous region in the middle of the Netherlands), classical music is played, apéritifs and wine are drunk, and manners are formal; residents eat on tablecloths under a chandelier, and dinner is served on individual plates, as in a restaurant, rather than family style, on platters. The “urban” life style denotes informal, gregarious manners, brightly colored décor, popular music, and beer. In the “homey” houses, décor is plain, the residents listen to folk music, and meals are traditional, involving lots of potatoes and avoiding anything too foreign, such as pasta. There used to be houses for other lifestyles, too: a Christian house and a house for the inhabitants of the former Dutch East Indies, whose rooms were kept warmer and more humid than those in the other units.

Once a person has dementia, the time for novelty and cosmopolitanism is past, the staff thought. The guiding principles at De Hogeweyk are familiarity, comfort, like-mindedness. And although some houses are more materially luxurious—the linens and the glassware in the Gooise houses are of a finer quality than those in the other houses, for instance—the cost to the resident is the same: the life styles are not supposed to be aspirational. Before a new resident arrives, their family is interviewed to determine the life style that seems most appropriate, which means the one that they are used to.

In an effort to make the houses feel as homelike as possible, the domestic tasks are not centralized but performed house by house, as they are in a normal neighborhood. In the morning, an aide from each house, often accompanied by a resident, goes to the supermarket to pick up supplies for the day. Each of the houses has its own kitchen where the meals are made. The residents can help to prepare the meals, chopping vegetables and washing dishes, all of which breaks up the monotony of the days. Even if they don’t want to help (and in the Gooise houses they rarely do), they smell the meals as they are cooking, in the way that you do in a normal home, and so they are less likely to be taken by surprise when a plate of food appears in front of them and they are invited to eat.

The staff of De Hogeweyk wanted to get away from traditional institutions, Eloy van Hal, one of the founders, says—“where you’re locked up indoors, where you are living in a big group with nice nurses running around in white uniforms saying, ‘Please be seated, please be seated.’ ” In a traditional nursing home, residents sit around on chairs in large, clattery dayrooms, the television turned up loud, surrounded by noisy crowds of odd-seeming people and nurses bustling about. The lights are too bright, the furniture and pictures are ugly. There is nothing to do other than some childish crafts, and nowhere to walk to. The residents almost never go outdoors. Small wonder, van Hal and his colleagues thought, that they began acting in ways that staff found difficult to deal with—banging on tables, shouting, kicking at doors, trying to get out.

The door from De Hogeweyk to the outside world has to be locked. Many people with dementia wander and become lost, so they can’t go outside on their own. But within De Hogeweyk residents who can get about by themselves are allowed to wander where they like—along the brick paths, through the indoor mall, up and down in elevators. The staff were told by experts that it was too dangerous to allow such a thing, that unsupervised residents would climb into the fountain or eat the leaves off the bushes. But the founders believed that it was better to accept some risk for the sake of freedom, and that Dutch people didn’t eat bushes or climb into fountains, and, in fact, in all the years that De Hogeweyk has been open only one resident has ever climbed into the fountain, and she did it on purpose, to annoy the staff, because she was angry that she couldn’t leave. So the residents walk about freely and sit around in the courtyards, watching people go by.

Early in the morning, aides and some residents came from the houses to shop at the supermarket. Members of the baking club turned up for their meeting at the cookery room. Aides gathered for a morning coffee at the table outside the pub. It was pleasantly noisy in the indoor mall—supermarket carts rattling along the brick floor, aides calling to one another as they walked by, jazz audible through the open door of the Café de Hogeweyk. An elderly woman wearing a lilac scarf and a hot-pink jacket scooted past in a motorized wheelchair. Another woman, in red jeans and a purple fleece, strode rapidly through the mall, carrying a large zippered bag, and soon afterward strode equally rapidly back in the other direction. A woman with a long gray braid and a stricken look wandered slowly around, murmuring to herself.

In the late morning, a group of young mothers and their toddlers began to gather at the tables in the main courtyard. Some weeks earlier, a staff member had spotted a mother playing with her child on a tiny lawn on a nearby street, and had invited her to bring the child to play in the spacious courtyards of De Hogeweyk. Now groups of ten or twelve mothers came for lunch every Wednesday, and their toddlers ran about with their toys. Since the residents of De Hogeweyk can’t go outside, the staff tried to cultivate a more normal atmosphere by bringing the outside in. The restaurant was designed to emulate a chic urban establishment, with statement ceiling lamps and a fifteen-foot-high backlit bar, in order to attract people from the town to eat there. At midday, two coroners, a man and a woman, both wearing black suits, walked quickly through the mall to the residences on the other side. Sometime later, they returned, wheeling a coffin out through the courtyard, past the mothers and children.

After lunch, the mothers packed up and left. A little later, an elderly man in a beige windbreaker who had been walking restlessly around all morning came upon their now empty tables and chairs. He picked up the chairs one by one and rearranged them by type; then he moved about the area, picking up dead leaves and tiny bits of rubbish from the ground and depositing them in a trash can.

At two-thirty, there was to be a piano-and-harp concert in De Hogeweyk’s indoor mall. Two rows of chairs were lined up to face the piano, and each resident was guided to a seat. Before the performance, an aide wheeled a cart around, offering wineglasses filled with advocaat, a traditional Dutch alcoholic drink resembling thickened eggnog, which isn’t drunk much anymore but used to be served at special events by older generations.

The pianist played and sang old songs that everybody knew—“Edelweiss,” “ ’O Sole Mio,” “The Blue Danube,” “Moon River.” Many in the audience sang along: some people with dementia who can no longer speak can still find the words to sing. Then the harpist took her turn, and she, too, played well-loved music that was deeply familiar—“Jesu, Joy of Man’s Desiring,” “Ode to Joy,” Brahms’s “Lullaby.” A woman in a blue cardigan knew the words to Brahms’s “Lullaby,” and sang along in a strong alto voice. A man in a wheelchair wearing a pale-gray blazer beat time to the music with his eyes closed, a look of intense joy on his face.

After a while, some people—those who could—began to dance. They stood up from their chairs, holding hands with aides, and shifted slowly from side to side. The woman with the gray braid and the stricken expression walked to the middle of the floor but then stopped to listen to the piano. The harpist, standing there while the pianist played, smiled at her and offered her hands; the woman smiled back and accepted her hands and began to sway to the music. The man in the beige windbreaker, who had not stopped moving all morning, had stopped now, and sat in the back row. The music was neither fake nor true. It was both past and present, and could be understood without fear of mistakes or forgetting.

The harpist played “Greensleeves.” The pianist played “Für Elise.” Administrative staff emerging from a meeting on the second floor of the mall leaned on the railing of the balcony outside and stood with the residents to listen. ♦