Four years ago, I spent a morning cooking couscous with my grandmother Denise near Grenoble, France, where she has lived most of her life. We peeled carrots and turnips, seared lamb and chicken, tied bouquets of herbs, and mixed hot water into the grains with our bare hands. I wrote down her recipe as we went along. My mamie has Alzheimer’s, and I had to learn to make her couscous on my own, before she forgot how to do it herself. That day, I recorded a video of her on my phone. She was sitting in a familiar kind of wooden IKEA chair that you have probably sat on before and that I will always associate with her. As she gazed out the window, a thought occurred to her, and she turned to me and asked, “C’est samedi que tu pars?” You’re leaving on Saturday?
Yes, I told her. I was returning to the United States, where my parents moved our family when I was eighteen months old. I found it painful to leave; each time we visited France, the progression of her disease seemed to become more unignorable. Her pencil trembled when she practiced her handwriting. She moved her daily baguette from the kitchen counter into the plate drawer. Late at night, she muttered and puttered around her apartment. When her wandering inconvenienced us, we guided her back to her chair. My family talked about the chair as if it were her refuge; it was probably more accurately described as our refuge from her confusion.
In the summer of 2020, my grandmother stopped eating and getting out of bed. She had fallen, fractured a vertebra, and forgotten about it. I flew to France with a dozen of Mamie’s favorite sesame-seed bagels, and I lived with her as she recovered, fetching prescriptions for the pain she was constantly rediscovering, and rubbing her back when she coughed until she retched. I lay in bed with her until she fell asleep. I fed her. I learned, for the first time in my life, what it meant to care for someone. After five weeks, my mom took my place as Mamie’s at-home caretaker.
Like so many families that are affected by Alzheimer’s, we searched desperately for a new place where my grandmother could live. We viewed her isolation in her seventh-floor apartment as a risk to her health and safety, and felt that it was not only right but necessary to exchange what was left of her autonomy for the round-the-clock, structured care that she could receive at a nursing home. About half of the six hundred thousand people who live in France’s EHPADs, or “housing establishments for dependent elderly people,” have dementia. These are imperfect institutions: in 2018, French nursing-home workers went on strike to protest staff shortages and cost-cutting, and, earlier this year, disturbing reports of abuse and neglect, untrained staff, and the rationing of food and diapers by a for-profit nursing-home company put the country’s elder-care system under intense public scrutiny.
A nursing home in a nearby suburb finally offered her a place after weeks of uncertainty.
My grandmother’s life now seems safer, but smaller. Her memory-care unit is locked with keypads to prevent her from wandering out and is rarely unsupervised; the woman who taught me to cook couscous no longer has a kitchen. My family is satisfied with her care: the staff is affectionate, Mamie is often cheerful during visiting hours, and she regularly participates in Montessori activities such as vegetable peeling and sing-alongs. I never saw her with pets when I was younger, but she now lets the nursing home’s service dog, an enormous Labrador named Nova, cuddle with her in bed. Still, it seems inevitable that, as my grandmother’s condition declines, she will lose the few freedoms she has left. Last year, I stopped bringing her bagels after I noticed that they were furring themselves green inside their plastic bags. This year, she complained of being weaker, of fighting with her brain but not understanding why. She sometimes referred to her nursing home as her aunt’s house, or the children’s daycare where she worked for decades. Someday soon, she will no longer be able to play dominoes with me—she won’t understand how to win, or even how to count the dots on each tile. Later, she might be moved to the unit next door, where people with more serious cognitive limitations live under even closer surveillance.
Anyone who has cared for someone with Alzheimer’s is likely to be familiar with this transaction. We cede their freedom to gain a sense of security—theirs, but also ours. We attempt to resize their world, removing the choices that might pose a danger to them. But I often wonder whether the standard approach of a nursing home—the constant surveillance, the rigid schedules for waking, bathing, eating, socializing, and sleeping—is the best that we can offer to loved ones with dementia.
This summer, before going to see my grandmother in Grenoble, I visited a nursing home that aims to expand, not restrict, the liberties of people with Alzheimer’s. The Village Landais, situated in Dax, in southwestern France, is part of a movement to make memory-care units less like hospitals and more like small neighborhoods. Some of these facilities are designed to convince residents that little has changed—“that life is still as it was once, with children to take care of, and holidays at the seashore, and familiar homes to return to,” as Larissa MacFarquhar wrote for The New Yorker in 2018. But the Village seemed to convey a slightly different message: that life remains full of choices and that autonomy enriches life. Its residents can come and go from their homes as they please, whether through the unlocked door or through a window. They can wake and shower at their leisure; they can shout, pilfer sweets, make tea at 2 A.M., sweep with the broom upside down, and handle sharp knives in the kitchen. Advocates for this kind of care argue that, for people with Alzheimer’s, the risks of institutional dehumanization are just as profound as the physical dangers of cutting one’s hand, or falling and breaking a bone. “Their cognitive troubles don’t permit them to adapt to our world,” Gaëlle Marie-Bailleul, the Village’s head of medicine and a specialist in neurodegenerative disorders told me. “We adapt to them.” Most nursing homes devote themselves to the narrow and perfectly reasonable goal of keeping residents safe and healthy. The Village Landais contemplates a broader question: What might a good life with Alzheimer’s look like?
A hundred and eight people, of whom the youngest are fortysomethings and the oldest are centenarians, live full-time on the seventeen acres of the Village Landais. Its sixteen group houses are clustered into small neighborhoods, and each house features two staff members, who are trained in disciplines such as home care, occupational therapy, and gerontology. Living areas are filled with natural light and secondhand furniture. Hallways are designed as loops, without dead ends, to reduce confusion; each resident has her own bathroom, with a mirror that can be folded up when she no longer recognizes her own reflection.
In the Village’s restaurant, which is supposed to open to the public in 2023, I met Nadine Zoyo, who began baking as a child during the war and spent many years as a homemaker, catering the baptisms and weddings of loved ones. “She never stopped,” her daughter Béatrice, who was dining with her, told me. As her Alzheimer’s progressed, Nadine struggled with words, and repeatedly fell and injured herself. Because Béatrice could see her mother’s apartment from her own, she told me, “I was always looking out the window.” The Village seemed to reanimate Nadine: she used to sit still for long periods, Béatrice said, but now she knits, interacts with others, and seems to lose her train of thought less often. “It’s extraordinary,” Béatrice continued. “She is living again.”
In many respects, the Village lives up to its name. Residents can tend to a large garden each morning and feed Junon and Jasmine, two donkeys who keep the grass in check. A salon offers haircuts, and each house makes a daily grocery run to the épicerie, or supermarket. The store has no cash register or price labels, however; the cognitive work of budgeting and paying has been conveniently edited out. The Village’s hundred and twenty employees, along with sixty active volunteers, travel the grounds on foot, or on bikes that are parked haphazardly around the campus. The medical staff do not wear lab coats; they conduct house calls, not office examinations. Marie-Bailleul told me that she tries to set aside expectations when she speaks with villagers during meals and walks. “They oblige us to be sincere, spontaneous, and in the present moment,” she said. Does it matter if a patient mistakes her for a friend or a grandchild? If someone wants to eat yogurt with a fork, so what? As long as they have an appetite and feel cared for, these are positive experiences, she said.
One of the most radical aspects of the Village is its insistence that a person with Alzheimer’s is not just diminishing into the sum of her symptoms, but flourishing and evolving as a human being until the end. Leticia, a forty-one-year-old villager with early-onset Alzheimer’s, is learning to play the guitar. Many residents who never previously engaged in the arts take to painting or collage-making, staffers told me, and former marathoners and cyclists can re-create long runs and rides within the village. (Academic researchers have noted that some people with dementia appear to enjoy enhanced artistic abilities; Mary Mittelman, a research professor at New York University, told me that, in the chorus she founded for people living with dementia and their families, those who may not remember what they ate for lunch are able to learn as many as eighteen new songs for each concert.)
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. In a cultural and medical history of dementia, “Dementia Reimagined,” the psychiatrist and bioethicist Tia Powell notes that 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.” Powell notes in her book that, 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.”
Our fear and hatred of Alzheimer’s ultimately seems rooted in our modern attachment to the idea of the self. “The self is also a creation, the principal work of your life, the crafting of which makes everyone an artist,” Rebecca Solnit writes in “The Faraway Nearby,” a memoir that touches on her mother’s Alzheimer’s, among other subjects. “She was herself being erased.” By yoking our humanity to our cognition, however, we risk dehumanizing those whose grasp on memory, language, and perception slackens. Families may stop bringing loved ones with Alzheimer’s to restaurants and gatherings; they may take away quotidian things, like the freedom to run errands or set the table or have neighbors. This summer, with a twinge of guilt, I realized that my family did not refer to Mamie’s nursing home as her home, but rather as “là, ou elle est”—there, where she is. “We consider that, because you have lost your memory, you are incapable of anything,” Pascale Lasserre-Sergent, the director of the Village Landais, told me. “We consider that you no longer exist as a person.” The poet Tony Harrison wrote:
If we are what we remember what are they
who don’t have memories as we have ours,
who, when evening falls, have no recall of day,
or who those people were who’d brought them flowers.
In recent years, new philosophies of memory care have emerged. In 2009, a dementia village called the Hogeweyk opened in the Netherlands, funded mainly by the Dutch government. Its houses evoke various Dutch life styles—one is for urbanites, another is for culture lovers, and another is for people with religious affinities—and residents can visit a pub, restaurant, theatre, and supermarket. The Village Landais is not affiliated with the Hogeweyk, but the Village’s press representative, Mathilde Charon-Burnel, told me, “Their example inspired us.” The Village, she said, aims to take the ideal of autonomy even further, and to scrutinize its own impact by using a scientific approach. Even if researchers discover that the Village fails to improve patient outcomes, Charon-Burnel told me, they will still publish their results so that other organizations can learn from them.
These alternative approaches do not pretend that the disease is anything but cruel. Alzheimer’s takes away so much that we consider essentially human: knowing, remembering, expressing. But Bonnet, the psychologist, pointed out that people with Alzheimer’s often show a gift for rich presence that eludes many of us. When patients forget about their own condition, a development called anosognosia, they sometimes feel better, as my grandmother did. They inhabit the present moment and may let go of troubling memories or fears about the future. Even as their experience of the world is transformed, they find ways to describe it that the rest of us can understand. “It can be very imaginative, very symbolic,” Bonnet said. A resident might tell her that they took a flight to go grocery shopping; it felt like a long journey. If someone tells her “I saw my mother,” she understands that someone took special care with them. Marie-Bailleul told me about a conversation she had with a woman who was grieving the loss of a fellow-resident. The woman pointed to the leaves of a tree, which were riddled with holes. “Look, he’s crying,” the woman said. “He lost his friend.”
The author, Marion Renault (left), with her sister Emilie and grandmother Denise.Photograph courtesy Jocelyne Renault
My family tries to remember the things that my grandmother has forgotten. Her father fed seven children by farming someone else’s land. When she was twenty, she married my grandfather Angelo, a French Italian man twelve years her senior, who had survived eighteen months in a labor camp during the Second World War. Angelo worked at a bottling plant and later became a welder; Denise worked at a factory that made metal bearings, then at a day care.
My grandfather developed Alzheimer’s before my grandmother did. She knew the complicated feelings of pity and protectiveness, the uneasy impatience, the sweetness and sadness, of caring for a loved one with dementia. When they visited my parents in the U.S., he went out for a long walk while mistakenly wearing her size-five shoes, and she waited by the front door, fuming. She got embarrassed when he mistook the curtains at Olive Garden for giant hanging napkins. She was his primary caretaker until he died at home in France, from a lung infection after aspirating food. Then, within a year or two, she began to experience symptoms of her own. “I’m sick of this disease,” she cried out one morning from her chair, according to a journal I kept at the time. “What did I do to God that he did this to me?” More than once, she told me that Alzheimer’s was devouring her life. I grieve not only for the life she is forgetting but also for the hardship it has contained.
My grandmother will probably never relocate to a place like the Village, but I have started to wonder whether I have the power to bring parts of the Village to her. How would my grandma choose to spend time with me if I allowed her to set our itinerary? Are there new hobbies or activities that I could invite her to explore—or old ones, like cooking, that I could reintroduce with a simple gesture, like bringing her potatoes or carrots that we could peel together? “Discovery is possible in this disease,” Bonnet told me. Solnit, in “The Faraway Nearby,” wrote about how Alzheimer’s drew her closer to her mother: “In that era, I think my voice and other things registered as familiar and set her at ease, and perhaps she knew me more truly. And perhaps I her, as so much that was superfluous was pared away and the central fact of her humanity and her vulnerability was laid bare.”
During my latest trip to see my mamie, I asked her, “Who am I to you?” She paused for a moment, then smiled. “You are my little sister,” she said. Once, I might have fretted about how far from reality she had strayed. But this time I tried to share her interpretation of reality, instead of imposing mine onto hers. What does it mean to be a younger sister? It means that I am someone who has giggled, cried, cooked, and played with her. It means that she has protected me, and that she feels that she is safer when I am near. My grandmother’s answer was not accurate, but it was truthful.
A few days later, on my last visit of the summer, I found myself unable to say goodbye. I searched my mind for words that would capture how easy and familiar it felt to be with her, and that I wished I were not going, and that, as soon as I could, I would be back. “See you tomorrow,” I told her. “À demain, ma chérie,” she replied. See you tomorrow, my dear. ♦
An earlier version of this article failed to credit the work of Tia Powell.
Sourse: newyorker.com
