November 29, 2022

A French Village’s Radical Vision of a Good Life with Alzheimer’s

A bright-green train car sits in the Village library, hitched to nothing in particular. A therapeutic tool, its interior is realistic, with metal racks for baggage and a flat-screen television, which plays footage shot from a train as it rolls through a forest. Nathalie Bonnet, a staff psychologist, told me that the simulacrum of travel appears to quell a simple desire to be elsewhere: she has seen agitated villagers fall asleep on the car’s cushy seats, or sit and articulate worries that they could not before.

Bonnet, who has silver hair and was wearing earrings shaped like droplets of water, led me to a terrace in one of the Village’s little neighborhoods and explained its philosophy. “As long as they can do, we must be able to leave them the liberty to do,” she said. “The spirit of security—of safety as a means to live longer—should be reconsidered. It’s not about opening up all freedoms, either. It’s not that. It’s, ‘What is the tolerable level of freedom to let the person live?’ ” Villagers can set the rhythm of their own existence, hour by hour, minute by minute. They can wash their own clothes, gather beneath expansive eaves, and walk unsupervised along looping wooded paths.

As Bonnet and I talked, a pair of residents ambled by. She asked a gloomy-looking woman, “How are you, Claudine?” Claudine, a former hairdresser, shrugged morosely, tugging at her sweater and pant pockets.

Bonnet asked again how Claudine was doing. Sensing that something was wrong, she rose out of her seat and took the woman’s hand.

“You’re looking for something?” Bonnet asked softly.

“Excuse me,” Claudine said sorrowfully, unable to explain.

“It’s all right,” Bonnet said, her voice softening even more. “I’ve got plenty of time.”

Time and intimacy are especially precious in understaffed nursing homes, and in families that care for those with dementia. Despite myself, I’d often felt irritated when I had to stop the clock in my world in order to accompany my grandma in hers. In Bonnet, I saw no sign of irritation. She asked Claudine whether she was worried that someone had taken her belongings. Claudine nodded, so Bonnet, still stroking Claudine’s hand, suggested that she go check that her bag and coat were safe in her room.

“There’s the style of communication where you have few words,” Bonnet told me as Claudine walked off. “We find a way of decoding.”

The Village’s operating costs exceed six million euros a year, of which about two-thirds come from public coffers. In exchange, researchers are studying the experiences of Villagers, from their behavioral troubles to their medication use and levels of depression and anxiety. “It does not suffice to want to do well,” Hélène Amieva, a researcher and professor of gerontology at the Université de Bordeaux who is independently studying the Village, said. The Village seeks to demonstrate that its philosophy of elder care has measurable positive impacts—that the day-to-day quality of life of its residents improves, or that their disease progresses more slowly. Research into medical outcomes is still ongoing, although a survey has suggested that, since the Village opened, members of the public who live nearby have formed more positive associations with Alzheimer’s, and may see those with the disease as warmer and more competent than they previously did. Another group of researchers is studying economic feasibility. Some families with financial need pay as little as three thousand euros a year, but others pay up to twenty-four thousand—and even that is not enough to cover the majority of the Village’s operating costs. It remains to be seen whether medical savings—for example, in the form of fewer hospital visits or reduced medication use—will offset some of these expenses.

In the U.S., where one in four nursing homes faces employee shortages, experts were skeptical that such a model could ever be implemented on a large scale. “That kind of staffing is not even there in our I.C.U.s,” Joe Verghese, a neurologist and the chief of geriatrics at Montefiore Health System, told me. Elena Portacolone, an associate professor of sociology at the University of California, San Francisco, went so far as to reject the Village’s basic design, and argued instead that Alzheimer’s patients should be integrated into society. “To me, it’s segregation,” she said. “I think it’s wrong.” Manon Labarchède, an architect and sociologist who recently completed her Ph.D. dissertation about Alzheimer’s, at the Université de Bordeaux, said that, if the village model remains closed off from the outside world, it will fail to change societal views of the elderly. Still, she said, it helpfully explores an alternative to traditional nursing homes. “It shows other things are possible.”

Dementia isn’t unique to our species—it also shows up in dogs, cats, horses, and rabbits—and has probably been with us for centuries. The writer Jonathan Swift is thought to have been afflicted by it in his old age, during the eighteenth century, when he complained of a fleeting memory, an ill temper, and a lasting despondency. “I have been many months the shadow of the shadow of the shadow,” he confessed in one letter. In another, he told his cousin, “I hardly understand a word I write.” When Swift died at seventy-seven, in 1745, dementia was seen less as a medical condition than as an inevitable feature of aging or, in some cases, a kind of madness. Not until 1906 did Alois Alzheimer, a German pathologist, argue that one of his patients had lost his memory because of a tangle of proteins identified in his postmortem brain. Over the years, studies have suggested that Alzheimer’s causes at least sixty per cent of dementia cases.

Americans long dealt with dementia by institutionalizing the people who experienced it. In the time of Alzheimer, the U.S. housed them in cramped poorhouses, where they frequently came down with infectious diseases, and suffered chronic neglect and abuse. One 1909 report describes a Virginia poorhouse warden who stopped an older woman from wandering by anchoring her with a twenty-eight-pound ball and chain. Eventually, poorhouses were replaced by mental hospitals, and mental hospitals were replaced by nursing homes. These facilities were a step forward, but they limit autonomy by design, and they often overuse antipsychotics as chemical restraints.

Dementia finally came to be seen as a public-health crisis in the late nineteen-seventies. In 1976, the National Institutes of Health spent $3.8 million on Alzheimer’s research; by the year 2000, federal funding for research on Alzheimer’s and other types of dementia had reached four hundred million. But this money has overwhelmingly been spent on trying to eradicate Alzheimer’s, and not on experiments in dementia care, like the Village. Even the Alzheimer’s Association, the country’s leading advocacy group for people with the disease, envisions “a world without Alzheimer’s,” rather than a world in which we try to live with it peaceably. But the dream of vanquishing Alzheimer’s has proved elusive. Alzheimer’s drug trials almost always fail. In June, the U.S. Food and Drug Administration approved aducanumab, the first novel Alzheimer’s drug in almost twenty years—against the recommendation of an advisory panel, which overwhelmingly concluded that there was insufficient evidence to deem the drug effective.

“Because the drugs keep failing, people are, like, ‘What do we offer people?’ ” Kristine Yaffe, a neurologist and psychiatrist at the University of California, San Francisco, told me. “What do we say to our patients?” In the U.S. alone, some 6.5 million people over 65, of whom a disproportionate number are women and people of color, already have Alzheimer’s. Between one-third and one-half of Americans aged eighty-five or older are estimated to have dementia. Most people live between three to eleven years after an Alzheimer’s diagnosis; some survive for decades. Because of a shortage of elder-care infrastructure and workers, many of them will face the disease with far too little support. “We’re not prepared,” Esther Friedman, a University of Michigan sociologist who studies elder care, told me.

News coverage of dementia is far more likely to focus on how to prevent it, or how much it burdens our health system, than to highlight the experiences of people who live with it. In surveys, many adults report fears that, if they were diagnosed, they might lose their health insurance, driver’s license, or job. More than half expect a person with Alzheimer’s to lose the freedom to make their own medical decisions, as my grandmother eventually did. “It’s a disease that scares, and that repulses,” Marie-Bailleul told me. As the sociologist Karen Lyman has written, people with dementia are often depersonalized into “merely disease entities.” In 2007, a bioethicist even explored the philosophical argument that, because dementia destroys personhood, a person who develops dementia has a moral obligation to kill herself. “Not killing herself would show selfish callousness,” he wrote. “She causes unnecessary harm to others by imposing significant burdens on them rather than autonomously solving the problem.”

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