A REPORTER AT LARGE
THE SENSE OF AN ENDING
An Arizona nursing home offers new ways to care for people with dementia.
BY REBECCA MEADMAY 20, 2013
Beatitudes aims at offering dementia patients—“people who have trouble thinking”—a comfortable decline instead of imposing a medical model of care, which seeks to defer death through escalating interventions. Photograph by Phillip Toledano.
Last summer, Frederick C. Hayes was admitted to the advanced-dementia unit at Jewish Home Lifecare, on West 106th Street. It was not an easy arrival. Hayes, a veteran of the Korean War, had been a trial lawyer for five decades. He was tall, and, though he was in his early eighties, he remained physically imposing, and he had a forceful disposition that had served him well in the courtroom. One of his closest friends liked to say that if things were peaceful Hayes would start a war, but in war he’d be the best friend you could have.
Hayes practiced law until 2010, when he went to the hospital for a knee operation. While there, he was given a diagnosis of Alzheimer’s disease. His combative tendencies had become markedly pronounced, and before arriving at Jewish Home he was shuttled among several institutions. Nobody could manage his behavior, even after Haldol, a powerful antipsychotic drug, was prescribed. In the advanced-dementia unit, he appeared to be in considerable discomfort, but when doctors there asked him to characterize his pain, on a scale of one to ten, he insisted that he was not in pain at all. Still, something was clearly wrong: he lashed out at the nurses’ aides, pushing them away and even kicking them. It took three aides to get him changed.
One day in September, a woman named Tena Alonzo stopped by Hayes’s room. Alonzo, the director of education and research at the Beatitudes Campus, a retirement community in Phoenix, Arizona, found Hayes lying in a hospital bed that had been lowered to within a foot of the floor, to lessen the risk that he would hurt himself by falling out of it. His face was contorted into a grimace, she later recalled, and he writhed and moaned. Alonzo, who is fifty-two, has spent the past twenty-eight years working with dementia patients—or, in her preferred locution, with people who have trouble thinking. She crouched next to the bed, and spoke in a quiet, intimate tone. “I’m here to help you—do you hurt anywhere?” she asked, moving her hand gently over his chest, his abdomen, his arms and legs. With each touch, she asked, “Do you hurt here?” When her hand reached his belly, the moaning ceased and Hayes spoke to her. “I hurt so bad,” he said. “I promise you, we are going to fix this,” Alonzo said, and he thanked her.
She told me, “It was heartbreaking, but this gentleman was there to teach us something. He was saying, ‘When I resist, it’s not that I don’t like you, or I don’t want your help. It’s that I can’t stand it when you manipulate my body in that way.’ ” Alonzo explained that it can be particularly hard for people with dementia to identify the source of pain, or to articulate their experience of it. But his body told the story. As Alonzo put it, “All behavior is communication.”
Hayes was placed on a higher dose of pain medication, and he gradually became more verbal—he could now respond, for example, when asked if he was cold. He also largely stopped making threatening gestures. Violence and irascibility are common among patients with dementia, but Alonzo argues that they are not inevitable. Nor are other behaviors that we associate with nursing homes: the man whose persistent, distressed efforts to escape the building must be foiled by frazzled staff; the woman who spends hours slumped before a television, shifting confusedly between dozing and waking.
More than five million Americans have Alzheimer’s or similar illnesses, and that number is growing as the population ages. Without any immediate prospect of a cure, advocacy groups have begun promoting ways to offer people with dementia a comfortable decline instead of imposing on them a medical model of care, which seeks to defer death through escalating interventions. The Green House Project, based in Arlington, Virginia, pushes for the creation of small group homes in which medical care is less intrusive; the Pioneer Network, based in Chicago, urges reforms such as less reliance on psychotropic medications.
Many of these approaches overlap with the methods of the Beatitudes Campus, which, over the past decade, has become an incubator for a holistic model of care. “When you have dementia, we can’t change the way you think, but we can change the way you feel,” Alonzo said. Ann Wyatt, the consultant on residential care at the New York City chapter of the Alzheimer’s Association, calls Beatitudes a “magical place”—a phrase rarely used to describe a nursing home. She is currently coördinating an effort to implement the Beatitudes approach in several New York City facilities, including Jewish Home. “Beatitudes has sort of put the pieces together,” she told me. “It all—embarrassingly and intuitively—makes sense.”
In the advanced-dementia unit at Beatitudes, the elevator is blocked by a velvet rope attached to silver stanchions. Visitors must unhook the rope to proceed. The rope is meant to dissuade a resident from wandering onto an elevator and out of the building; a black square of carpet in front of the elevator performs the same function, since people with dementia have been shown to be unwilling to step onto such a black space, taking it to be a hole. At other nursing homes, exits are often marked with “Stop” signs, or blocked with the kind of fluorescent banners that police use to cordon off crime scenes. The velvet rope at Beatitudes makes a subtle, more positive suggestion: that residents are ensconced in an exclusive club.
The unit is on the fourth, uppermost floor of a nineteen-sixties-era medical building. Its residents are men and women who can no longer live alone safely: they may not remember the location of the bathroom in the house where they have lived for fifty years, and they may have virtually lost the power of speech. (Residents on the lower floors have less advanced dementia, or are undergoing rehab for, say, a stroke.) Across from the elevator is a large, sunny sitting room, where the nurses’ station used to be. “We took that out because they deserved the real estate, and we didn’t need it,” Alonzo told me as she showed me around what is always referred to as the “neighborhood”—a semantic adjustment meant to signal that Beatitudes is a place where residents live, rather than an institution where they are confined.
There are no fixed bedtimes or rising hours at Beatitudes, and no schedules insisting that aides must have residents showered before 10 a.m. Residents may choose when, and if, to bathe, provided that they maintain basic hygiene, and there is no compunction among staff members to get uncoöperative residents spiffed up for visitors. Instead of the intimidating shower rooms typical of nursing homes—safety railings, trusses, plastic curtains—the bathrooms at Beatitudes are spa-like, with aqua tiles, rubbed-pine cabinets for towels, and frosted-glass blocks shielding the shower area.
Research has shown that endorphins released during a pleasant experience have a salutary effect on a person with dementia even after the experience is forgotten. Beatitudes tries to provide residents with pleasurable moments throughout the day. When people with dementia become hungry or thirsty, they are unlikely to look for food or drink independently, or ask for help; as a result, they often have difficulty maintaining their weight. One day when I visited, a plate of cookies and a pitcher of lemonade had been set on a rolling snack cart—an attractive wooden cabinet topped with a decorative cloth. Staff members periodically walk around with a plate of tiny sandwiches or other snacks, offering them like hors d’oeuvres at a cocktail party.
Breakfast, lunch, and dinner are served at conventional times, but residents can have a meal whenever they wish, even at two in the morning. In dining areas, the tables are covered with white tablecloths, and food is served on bright-colored Fiestaware. This is an aesthetic choice but also a practical one, Alonzo explained: the contrast between the vivid dish and the white cloth is helpful to visually impaired residents. Despite the touches of gracious living at Beatitudes, the average cost of care is roughly the same as the cost at a typical nursing home: just under eighty-five thousand dollars, not including medications, with half of the total going toward staff salaries, and ten per cent toward meals.
Meals take place without the ambient soundtrack common in restaurants. Musical preferences vary between residents, Alonzo explained, and one resident’s displeasure at being obliged to listen to another’s choice can prompt avoidable conflicts. Alonzo’s own taste runs to Metallica: “When I have dementia, don’t play country music to me—I am going to slug you,” she told me. Alonzo often says, “When I have dementia”; this phrasing, she explains, is based on a rational calculation of her odds, given her family history, but it also underscores that, for most of us, mental decline is inevitable.
Thirty-seven people live in the advanced-dementia neighborhood, whose layout is traditional: twenty-one bedrooms, most of them shared by two residents, set on a long corridor. On the first day I visited, several residents were napping in their rooms. Aides encourage anyone who looks weary to lie down; falling asleep in an armchair or a wheelchair often causes stiffness and pain. Several people were in a sitting area that features a tank of tropical fish, and a television set was turned off, as it usually is. In many nursing homes, televisions entertain the staff rather than the residents, who may find the programming too stimulating, or have trouble distinguishing between an onscreen drama and their own lives. (Talk shows that feature guests yelling at one another can provoke violence among residents.) Back in 2001, the staff at Beatitudes had not yet learned to turn off the television, and on September 11th, Alonzo said, “we had people crawling under their beds and trying to hide in their closets. Many of them felt like they were in World War Two again.”
One or two residents were walking along the corridor, which is painted in a sequence of hues: pale blue gives way to terra-cotta, and so on. This scheme helps residents find their rooms, and provides a more sensual experience for people who enjoy walking but whose movements are restricted. At one end of the corridor is a sunroom equipped with wind chimes and patio furniture; a cat likes to bask by the window. “One of the things that create comfort for people who have trouble thinking is space,” Alonzo told me. “If you are too blocked in, you feel frightened.” The sunroom overlooks a busy street; the hum of traffic, filtered through double-glazed windows, can be calming, as can the repetitive motion of the cars. “We have men who adore watching the cars for hours,” she said.
As Alonzo introduced me to various residents, she included short descriptions that captured how they might have wished to be defined in earlier years: a committed teacher, a great mother. The atmosphere was notably calm. “Most often, when you go on a unit with dementia you are going to hear somebody yelling ‘Help me,’ or hitting their knees, or rocking, or banging the table,” Jed A. Levine, an executive at the New York City chapter of the Alzheimer’s Association, said. Levine visited Beatitudes last fall. “What was most impressive was not what was going on but what wasn’t going on—the absence of palpable distress,” he told me.
Serenity cannot always be maintained. When I was at Beatitudes, a man called out for help several times; accustomed to being waited on by his wife, he frequently became impatient. A birdlike woman with wispy, strawberry-blond hair and an abject expression sat hunched in her armchair, heaving with sobs. This resident, who was only middle-aged, had frontal-lobe dementia, a particularly devastating form of impairment. The staff doctor had tinkered with her pain medication, and aides had sought to distract her by walking with her, to no avail. “We’ve done all the regular things, so we’re going to try chocolate, to see if that helps,” Alonzo said. Hershey’s Kisses are a mainstay at Beatitudes, as are lollipops, on the principle that it is hard to feel very bad when there is something tasty in your mouth; adults with dementia will sometimes soothe themselves by sucking, just as they did when they were babies.
Alonzo spoke briefly with the birdlike woman, who seemed consoled; Alonzo told me that the woman appears to believe she is a member of her family. Although it once was standard practice in nursing homes to “re-orient” residents who became confused about the identities of staff members, Alonzo said that it is more comforting to residents if staff members play along with their delusions. One former resident, a retired dentist, was often distracted from incipient distress by a female staff member requesting a dental exam; she then opened her mouth, so that he could peer inside.
Another resident hovered near Alonzo: a slender, upright woman in her early eighties who had a faded, elegant beauty. She seemed particularly hungry for attention, and was overwhelmed with joy when she received it. “Oh, my God, you’re perfect—I love you so much,” she told Alonzo. “I love you, too,” Alonzo replied.
When I sat in on a staff meeting, I learned that this woman spent most of every day walking up and down the corridor. There was concern that she needed additional painkillers: she started out well in the mornings, but, by the afternoon, a nurse reported, “she looks like she’s walking on eggshells. You can see her tippy-toeing.” For decades, she had worked in retail, and she wasn’t going to stop walking just because she was in a dementia unit. “You can tell—she’s got great legs,” another staff member observed.
I spent some time one day walking along the corridor with this woman, into the sunroom and out of it again. Her face brightened at the company, and she was eager to talk, even when her side of the conversation devolved into singsong nonsense. Sometimes she stopped to shimmy for a moment, and I could imagine what a figure she once must have cut at a dance. Being in her company triggered memories of being a child alongside my grandmother, now long dead. I recalled the at-a-loss-for-words feeling that I used to experience with her, even as she made me feel held within a sphere of affection. This woman’s powers of cognition were limited, but her capacity to experience emotion seemed unimpaired, and she demanded engagement in the way that a small child does: it made no more sense to resist her impulse toward intimacy than it would to withhold a smile from a baby. When she grasped my hands and told me that I was perfect, I told her that she was perfect, too.
The principles underlying Beatitudes were derived from the work of Thomas Kitwood, a British social psychologist who died in the late nineteen-nineties. Kitwood trained for the priesthood and worked as a chemistry teacher, in England and in Uganda, before returning to Bradford, England, where he founded the Bradford Dementia Group, which promoted “person-centered” care. In his landmark work, “Dementia Reconsidered: The Person Comes First,” published in 1997, Kitwood insisted that people with dementia, rather than being seen as debilitated, should be embraced for what they can teach the cognitively intact. Such people, he wrote, invite us “to return to aspects of our being that are much older in evolutionary terms: more in tune with the body and its functions, closer to the life of instinct.” Kitwood argued that, in advanced Western societies, where a sense of community is often weak, the evident frailty of people with dementia generates fear; this unease is socially managed by turning the demented into nonpersons, who are warehoused in nursing homes and pathologized with terms like “resisting care.” The problem, Kitwood concluded, “is not that of changing people with dementia, or of ‘managing’ their behavior; it is that of moving beyond our own anxieties and defences, so that true meeting can occur, and life-giving relationships can grow.” Only in this way could the personhood of people with dementia be conserved, even as their intellection declined.
Kitwood’s work has been particularly influential in Europe. In England, Prime Minister David Cameron is leading a campaign, the Dementia Challenge, that aims at providing sufferers with the “services and support they need.” And the Belgian city of Bruges recently declared itself “dementia friendly.” Stores can display a knotted handkerchief to indicate that they welcome customers who have trouble thinking: clerks are trained to anticipate that a shopper may have problems remembering what she wanted to buy.
Alonzo did graduate work in psychology at Northern Arizona University, but she did not read Kitwood’s work until she arrived at the Beatitudes Campus, as a social worker, in 1998. “It blew my mind,” she told me. The campus had been founded, in the nineteen-sixties, by the Church of the Beatitudes, a progressive Protestant congregation in Phoenix, and it followed the prevailing practices of the time: using lap restraints and dispensing Thorazine by the bottleful. Karen Mitchell, who is now the nursing director, and who has worked at Beatitudes for thirty years, recalls, “We thought it was the right thing to do. We had all these myths: everyone had to be on a schedule, for our convenience, in a way. And even though it was for the right reasons—make residents clean, make them happy—it wasn’t making them happy.”
Nursing homes, whether public or private, must follow detailed federal and state regulations. The New York State manual exceeds six hundred pages, covering everything from dietary services to the use of physical restraints, and it makes precise stipulations: each resident, for example, is entitled to at least eighty square feet of bedroom space. Such regulations are intended to protect the elderly, but they can also hinder innovation on the part of staff. (New York State regulations call for each resident to be supplied with “a separate bed of proper size and height”; at Beatitudes, one male resident’s bed has been replaced by a reclining armchair, to accommodate the way he prefers to sleep.) Changes to the rules happen slowly. Until the nineteen-eighties, it was considered effective and humane to manage unruly residents with vest straps and other restraints. Activists led a campaign that largely eliminated such restraints, but this was followed by an increase in the use of chemical restraints.
Today, psychotropic drugs are regularly used to sedate people with dementia into compliance, and nursing-home residents who have no diagnosis of mental illness are given off-label prescriptions for Haldol, Seroquel, and other antipsychotics. These drugs were developed for the treatment of conditions such as schizophrenia, not dementia, and are generally intended for young, robust patients; when such medications are given to the frail and the elderly, they induce a lethargy that can mask symptoms of other afflictions. Antipsychotics are also expensive: a Seroquel prescription can cost three hundred dollars a month. Over the past year, the Center for Medicare and Medicaid Services, or C.M.S., has made efforts to track the use of antipsychotics in nursing homes and reduce it; Alonzo serves on an advisory panel considering the issue. Alice Bonner, a director of C.M.S., told me, “People are starting to realize that, with some creativity and curiosity, we can figure out other ways of taking care of people with dementia. There really must be a very compelling reason to use these medications.”
At Beatitudes, antipsychotics are prescribed when a resident suffers from a prior mental condition—schizophrenics get dementia, too—or when a resident who is very close to death has distressing hallucinations. But in most cases every effort is made to reduce dosages or eliminate the drug altogether, especially with residents whose difficulties may be more effectively addressed with pain medication. Some residents are given opioids, but many of them take little more than Tylenol.
Residents who arrive with antipsychotic prescriptions are gradually weaned off them. One such person I met was Gisa DeBiasio, a ninety-three-year-old resident who, when I encountered her, was heartily singing pop songs from the nineteen-fifties with Kathy Deyo, the activities coördinator. “You remember the words better than I do,” Deyo told her, accurately. DeBiasio had arrived at Beatitudes a year and a half earlier, with a raft of prescriptions, after a brief stay at another nursing home. Her daughter-in-law, Maryjane DeBiasio, told me, “They drugged her so much that she was unrecognizable to us.” Maribeth Gallagher, a director at Hospice of the Valley, a service that works in tandem with Beatitudes, said of DeBiasio, “From their perspective, she was being disruptive, combative, aggressive, paranoid. She’s born in Sicily, she spent her whole life in Brooklyn, and she comes to Phoenix and is sitting next to people from a farm in Iowa. So are you surprised that they might be saying she’s guarded, she’s aggressive? They wanted me to change her behaviors. A siciliana from Brooklyn—there is no medication in the world that is going to change who she is!” DeBiasio stopped taking psychotropic medication.
A significant part of the work at Beatitudes involves helping family members comprehend that dementia is an inexorable, terminal disease. Understandably, they tend to grasp at a resident’s seeming moments of lucidity. But family members are encouraged to embrace their parent or spouse’s altered state. Peggy Mullan, its C.E.O., told me that she’d recently talked to a resident’s daughter who was upset that her mother now mistook her for her own sister. Mullan had urged her to consider that her impaired mother might find this comforting; as she explained to me, “I have a sister living in North Dakota, and I would give my eye teeth to sit and have a conversation with her.” Maryjane DeBiasio told me that Gisa no longer recognized her children or grandchildren. “There is no connection,” she said. “But she still makes us laugh, and, because of that, we still feel that we have a connection with her.” And Maryjane could see the vestiges of Gisa’s personality; when she did her nails, she noted, “if I hurt her a little bit, she will give me a look—she is very spunky and not afraid to say what’s on her mind.” (Gisa died not long after I met her.)
It took several years and a change in administration for the staff at Beatitudes to fully adopt Kitwood’s principles. One of the first things Alonzo did, in 1998, was to ask an aide who was born in Vietnam to talk to staff members in her native tongue. “It was the only language I could find that nobody else could speak,” Alonzo recalled. “So we had her tell us very sweetly, in Vietnamese, what she wanted us to do, and we couldn’t understand her.” The staff had to become attuned to the woman’s nonverbal cues.
On another occasion, Alonzo underwent a public bed bath, in front of the entire staff, of twenty-seven. She didn’t allow herself to move her limbs, and behaved as if confused. Afterward, she was able to describe the nature of her discomfort, and staff members analyzed their own activity in light of it. “Let me tell you, it sucked—it was incredibly uncomfortable,” she told me. Staff members then spooned food into one another’s mouths and brushed one another’s teeth, in order to be on the receiving end of activities that they performed for their charges every day. “You can feel how threatening it is to have something touch your mouth when you have not brought it to your own lips,” she said. This feeling is captured, with excruciating candor, in the recent film “Amour,” when a woman with dementia is prodded by her husband to drink from a cup of water.
In the most radical experiment, the staff wore adult diapers. “That was kind of life-changing for everybody involved,” Alonzo told me. “We all recognized just how uncomfortable it was to sit in a wet brief. Some of our front-line staff, who really wanted to know how bad that felt, did not change them for a couple of hours.” Previously, most residents had been dressed in diapers, as they tend to be in a majority of nursing homes. Not long afterward, aides decided to stop the practice with most residents, instead taking them to the bathroom fifteen or twenty minutes after mealtimes. This made residents happier while making the staff’s jobs easier, because they no longer had to change people who were agitated.
A storage closet once filled with diapers has become a nook where residents or visitors can sit; the décor can be changed, according to the interests of the residents. When I visited, it was set up as a library, with an armchair, books, and a handsome, old-fashioned clock. Earlier, it had been a crafts area, with a sewing machine, scraps of fabric, and containers full of buttons. It has also resembled a nursery, with a crib, a vintage high chair, a rocking chair, and a baby doll. Alonzo said, “We had a lot of people who thought they were young mothers.”
Beatitudes is effective in no small part because the people who work directly with residents initiate fresh approaches. Everyone on the staff, from consulting doctors to housekeepers, is expected to put the needs of residents first. It took time for some nurses and aides to adjust to the new thinking. Karen Mitchell, the nursing director, said, “I saw one resident walk up to another person sitting in a chair, and put her arm out, and I jumped up from my chair and ran down the hall, because I thought for sure that they were going to have an altercation. Instead, she put her arm around her, and was consoling her.”
In nursing homes, staff are held responsible if a resident falls; since they are watching over several people at once, there is an understandable tendency to insist that people remain sitting down, instead of altering the environment to make falls less likely, or using physical therapy to strengthen legs. Mitchell told me, “We have to give residents the right to fall.” I saw one resident tottering down the corridor toward the sitting room, carrying a foldout table that was still set with the dishes she’d used for lunch. Rather than rush to grab the table from her hands, Kathy Deyo watched her advance for a minute, then approached her slowly and suggested that she take a break. Then Deyo asked if she might take the table and stow it away—all without challenging the resident’s competency.
Last fall, Tena Alonzo came to Manhattan and delivered a talk to an audience of ninety dementia-care workers. She used a favorite metaphor to describe the progressive decline of a person with dementia, from forgetting keys to becoming unable to speak. “I think of it like being on the receiving end of a really bad cell-phone call—maybe a word gets through, but maybe it doesn’t,” she said. “For them, the call never ends.”
At one point, she asked the audience, “What are the things that you experience every day?” She started enumerating their responses: “There’s hitting. Verbal abuse. Pounding on the nurses’ station. ‘Shopping’—taking from other residents. Hoarding. Disrobing. Smearing. Falsely accusing the staff.” Audience members kept contributing. “Trying to escape,” one said. “Wandering the halls at night!” another called out. Voices chimed in from all over the room, amid the rising laughter of recognition: “I need my Metrocard!”; “Everyone’s crazy!”; “I’m a decent man—I don’t sleep with other women!”; “I’m going to shoot you!”
Alonzo’s speech was part of a daylong training session for staff members from Jewish Home and the two other nursing homes that are learning how to institute the practices of Beatitudes: the Isabella Geriatric Center, in Washington Heights, and the Cobble Hill Health Center, in Brooklyn. The program, which has a budget of six hundred and fifty thousand dollars, is expected to last thirty months, and will include a research element to gauge the success of specific protocols. According to a preliminary 2008 study that Alonzo co-authored with Carol O. Long, a director of palliative care at Beatitudes, their approach reduced drug costs by a fifth; in addition, residents maintained their weight without a dependence on dietary supplements. Their data set was limited, however, and more studies are necessary.
The New York City chapter of the Alzheimer’s Association selected the three nursing homes in the program precisely because their staffs were receptive to change. Tony Lewis, the C.E.O. of Cobble Hill, does not need to be introduced to the notion that behavior equals communication. He told me of one resident, a former longshoreman, who became enraged at mealtimes; after staff learned that, as the head of his family, he had always been served first, they began giving him his meals before other residents, and the outbursts stopped. Even so, these institutions sometimes do things that would not pass muster at Beatitudes. I was at the Isabella Geriatric Center on the morning of the Newtown school shootings, and nobody thought to turn off the television news.
For the retraining program, key staff members have travelled to Arizona to observe Beatitudes, and since December each institution has held weekly meetings to decide how new approaches might be adopted in New York. Suggestions made by the housekeeping staff are accorded as much importance as those made by the nursing director. At one meeting at Jewish Home, a nursing assistant who had visited Phoenix was particularly eager to emulate the Beatitudes snack cart, and to stock the refrigerator—currently filled with unappetizing dietary supplements—with yogurt and other soft foods.
Deirdre Downes, the corporate director of social-work initiatives at Jewish Home, told me that the program had inspired subtle but significant changes: among other things, aides had stopped talking about residents “resisting care.” Downes took me around the advanced-dementia unit and discussed possible changes to the décor, which was plainly unwelcoming, with cold tiled floors and drab paint. In the large dayroom, a TV sat atop a cabinet whose door hung loose on its hinge. Downes hoped that the room might be reconfigured into more pleasing, smaller spaces; she showed me a little room that is currently used as a storage space and a bolt-hole for staff, and said that it should be turned over to the residents. “They deserve nice spaces,” she said. There was a limited budget for renovation, however: Jewish Home plans to replace its current facility, which is in an unprepossessing hospital-like building, with one that follows the precepts of the Green House Project movement. The new facility will feature shared, self-contained apartments, and will evoke a college dormitory more than a hospital ward. The goal is to allow residents to “age in place,” cared for by staff but not overwhelmed by their presence.
In a corridor near the nurses’ station, Downes passed by a man who was reclining in a geriatric chair. “Hello, Mr. Hayes,” she said. “You are looking wonderful.” He gave her a watery but distinct smile. Frederick Hayes was unrecognizable from the man who had arrived at the unit, kicking and screaming, several months earlier. By observing his behavior carefully, nurses’ aides had learned that he liked to watch television as a distraction while he was being changed or washed, and that it was important not to block his view of the set. Now that Hayes was receiving enough pain medication, he enjoyed it when the aides talked to him, and even responded to their jokes. His son told me, “They understand how to get along with him. They know not to push too much.” Hayes particularly enjoyed being complimented: aides tell him he is a handsome man, which, in spite of everything, he still is.
In a celebrated passage of “Gulliver’s Travels,” Jonathan Swift describes the Struldbruggs—the immortal residents of the nation of Luggnagg. Gulliver, upon hearing of their existence, is thrilled; he imagines them to be repositories of wisdom, and asks to spend time in their company. He is quickly set right: Struldbruggs grow old, just as mortals do, and suffer the usual infirmities of age, along with others specific to their condition. Swift writes:
They were not only Opinionative, Peevish, Covetous, Morose, Vain, Talkative, but uncapable of Friendship, and dead to all natural Affection. . . . They have no Remembrance of anything but what they learned and observed in their Youth and middle Age, and even that is very imperfect. And for the Truth or Particulars of any Fact, it is safer to depend on common Traditions than upon their best Recollections. The least miserable among them appear to be those who turn to Dotage, and entirely lose their Understandings; these meet with more Pity and Assistance, because they want many bad Qualities which abound in others.
Swift, writing in 1726, was apparently describing dementia, a medical term not generally in use until the nineteenth century. “Every Man desired to put off Death some time longer,” he writes. But the condition of the Struldbruggs is even more gruesome than death. “No Tyrant could invent a Death into which I would not run with Pleasure from such a Life,” Gulliver reports. Today’s medical advances mean that death is easier to put off than it was in Swift’s time. But, like the Struldbruggs, people with dementia invite those who care for them to weigh the value of prolonging life, even as the health-care systems in which they are enmeshed attempt to sustain them with invasive procedures.
Practitioners of palliative care argue that such efforts are often pointless, and may reduce still further an individual’s already diminished quality of life. At first glance, it may look reckless to give ice cream to an elderly person who has diabetes—a condition that affects one out of six nursing-home residents. But giving pleasurable foods to people with dementia can help avoid conflict, and can provide a measure of satisfaction. “The glass of juice is not going to kill them,” Ann Wyatt, of the Alzheimer’s Association, told me. And—though caregivers for people with dementia refrain from saying such a thing aloud—would it be so bad if it did? “We can’t change the inevitable,” Wyatt said.
Death is a constant presence in nursing homes; when I visited Beatitudes, one resident was receiving what are known as eleventh-hour services. Hospice workers made sure that someone was always at her bedside, and played a CD of square-dancing music that her husband said she had loved. Often, the advanced-dementia unit, with its pervasive quiet and its slow-moving, kindly staff, seemed like an anteroom to another realm, filled with people in a state of suspended anticipation. Alonzo told me that she regarded the residents as being “closer to the higher being. This is who they are: real, honest, and sometimes raw. There is no ability to reason, or to cover up who you really are. And so, for much of the time, you see the loveliness of the soul—it is bare for everyone to acknowledge.”
Valorizing dementia as a higher state of being may strike many people as bizarre, and such sentiments are unlikely to comfort the children or partners of people who must endure living in a state of almost perpetual confusion. Yet our society does tend to prize cognition and executive function at the expense of other essential human qualities: sensuality, pleasure, intimacy. For people who can no longer think clearly, a life of small sensory pleasures is a considerable achievement. I watched one Beatitudes resident approach Alonzo with an ecstatic smile; when Alonzo bent to kiss her on the cheek, Maribeth Gallagher, who was standing nearby, said of the resident, “She just assumes that we are going to kiss her and love her. Wouldn’t you love to live in a world like that?” Not at the price of my intellectual faculties; but, under the circumstances, it seemed preferable to any available alternative.
Not long after I visited Beatitudes, I saw my mother-in-law, who in the past few years has undergone a swift decline into dementia. She lives in a retirement home outside Washington. For the dozen years I have known her, she has been an anxious, extraordinarily well-meaning woman, with a deeply concealed vein of impatience. Her dementia seems to have amplified these characteristics, and when I visit her, which is much too infrequently, I am dismayed by my own discomfort, and by my clumsy attempts to communicate with someone who can no longer have a conversation.
In some ways, the retirement home resembles a pleasant hotel, with a spacious atrium and a cheerful deck with flower-filled planters, which are tended by residents of the assisted-living wing of the facility. But to reach the dementia unit you must descend in an elevator and open a locked door; the windows look out on banked grass verges that rise to parking spaces above. The hub of the unit is the nurses’ station, which is next to a dining area and a living room. Like many well-regarded nursing homes, it’s a decent place with caring staff, run by an administration with the best of intentions; but, as a result of ingrained habits, it also adheres to the kind of rigid schedules, and delivers the kind of medical treatments, that Beatitudes has left behind.
My visit was close to Christmas, and I brought a gift of hand cream, with the plan of giving my mother-in-law a hand massage, as I had seen aides do in Arizona. But the scent was too strong for her, and I was embarrassed at the failure of my self-conscious effort to be beatific. Then I knelt by her wheelchair and began singing traditional carols—the same that she’d sung as a girl, eighty years earlier, in Cooperstown, New York—and she was transparently delighted, murmuring along with “O Come, All Ye Faithful,” and tapping her foot vigorously to “We Wish You a Merry Christmas.” It was the most satisfying moment we have spent together for a long time—for both of us—and when I have dementia I hope that someone will sing the same songs to me.
One resident I met at Beatitudes, Nancy Kay Beck, often seemed agitated, with a fretful look about her. Up until a year or so earlier, she had been living independently, but that had become unsustainable: she had begun calling her daughter seventy or eighty times a day, forgetting that she’d made any earlier calls.
Beck was angry about being placed at Beatitudes. She repeatedly begged her daughter to take her home, and insisted to staff members that she wanted to leave. Not long after arriving, she struck up a romantic relationship with a male resident. It is a not uncommon occurrence among people with dementia to couple up, even if their infirmities limit the relationship to hand-holding or a peck on the cheek. If one has been accustomed to having a husband or wife, but can no longer recognize him or her, it makes intuitive sense to put a fellow-resident in the place of a spouse. “We are wired for personal intimacy, and it can give us great pleasure and solace,” Alonzo told me. If you have shared a bed for sixty years, to sleep alone can be disconcerting; at Beatitudes, residents are sometimes given a body pillow to simulate the sleeping form of a spouse.
But coupled residents can also cause each other distress. Beck and her friend spent their days plotting escape. They would approach a nurse and ask to withdraw their money, as if they were at a bank, only to be told that the bank was closed and to come back tomorrow. This ritual heightened Beck’s anxiety. After her companion died, Beck became calmer; she did not seem to notice that he was gone, or remember that he had ever been there. Yet she remained convinced that she should not be where she was.
Before her retirement, some years earlier, Beck had worked in the administrative offices of a center for behavioral health, where patients with mental illnesses came for help with their insurance claims. She had liked her job, and had enjoyed working with this population, and when I met her she spoke of other Beatitudes residents as if she were working among them, rather than living with them.
“I try to keep track of them—they’re like my kids,” she told me one day, as we sat in the sunroom, watching the former retail clerk wandering by. “It’s odd what this disease does to you.” She offered an analysis of the passing resident that served as a slightly confused account of her own condition. “You want her to get out of that thing—to move on, have some life,” she said. “You don’t want to hope that she is going to have another—but you know she’s going to.”
Free-floating anxiety is characteristic of dementia, and honoring the personhood of residents, as Thomas Kitwood recommended, also means acknowledging their distress. Gillian Hamilton, the medical director of Beatitudes, told me that Beck, who is physically sturdier than most of the residents, is her biggest challenge. “She just wants to go home,” Hamilton said. “I’ve tried many different medications. I’ve tried sedating her. And I just can’t get anywhere. I would love a solution for her, but it’s not a medical solution. And we haven’t come up with something.” Often, Hamilton told me, a resident’s distress abates as the disease progresses; the most difficult time is the period during which a person with dementia recognizes that something very unwelcome is happening, but is unable to understand it. Hamilton told me that, with Beck, they would just have to wait out this period. “She’ll be better when she’s worse,” Hamilton said.
Not long ago, I called Tena Alonzo, and asked after some of the residents I had met. She told me that the woman who walked the corridor—the lady with the great legs—had gone into a decline, and that her family was at her bedside. I was surprised to hear this: she had seemed vital, even sprightly; but her girlish manner had masked the extent of her frailty. She died within a few days. “She was singing and dancing up until the day before she died,” Alonzo told me later. “If you have got to go, that’s a good way to go.” ♦
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