The large central room of the memory-care unit was designed to look like an old-fashioned American town square. There was a small fountain, surrounded by plants and a low stone wall; there were a couple of lampposts, and benches, tables, and chairs set about. The carpet was mottled with darker and lighter shades of green, to resemble grass growing and bending in different directions. Along the walls were the faĂ§ades of what looked like clapboard houses, with wooden shutters and shingled pitched roofs and porches that extended into the room. Two long hallways, which led off from opposite sides of the central room, looked like streets in the same town, with more clapboard faĂ§ades and porches on either side. These faĂ§ades were not altogether fake: each front door opened onto a suite of small roomsâliving room, bedroom, bathroomâthat was a residentâs home.
Some of the porches had rocking chairs that you could sit in and watch people go by. Many of the residents were quite restless, and there was nowhere else to go, so people did walk by fairly often. Daylight came in through high windows just below the ceiling, and the ceiling itself consisted of bright light panels painted to look like a blue sky dotted with clouds. In the evening, as it began to grow dark outside, lights on the porches came on. Sometime later, the street lamps were lit; and finally, around eight oâclock, the ceiling sky was switched off, so that the unit came to look like a small-town street at night.
The illusion was surprisingly effective. While the central area didnât feel like outdoors, exactly, it didnât feel like a room, eitherâit was halfway between the two, at once enclosed and public. People who spent time there found themselves referring to the hallways as streets, and the suites as houses. And although the unit was conceived as a kind of nostalgic stage set, a harkening back to an America of eighty or ninety years ago, when many of its residents were children, in fact it looked much like the town outside: Chagrin Falls, Ohio, in the Chagrin Valley just east of Cleveland, a town of clapboard houses with wooden shutters and shingled pitched roofs and rocking chairs on the porches.
The impression that the unit was outdoors and public was all the stronger because the people who gathered each day in the central room had no common purpose or shared understanding of what they were doing there. Some knew that they had come to live in the memory-care unit because they could no longer manage living on their own: they could no longer drive, or they tended to forget their medication or leave the stove on, or if they went for a walk they might get lost. Some knew that they were in a memory-care unit but didnât believe they needed to be there and tried to get out. Others did not know where they were, or knew sometimes but not at other times, or else seemed to have reached a point at which the question of where they were was no longer important.
The staff tried to keep the residents busy. They played hangman and trivia and bingo and beanbag toss. They performed stretching exercises and cognitive exercises every morning. There was Bible study and crafts and manicures each week. They watched Indians games on TV in the summer, and Cavaliers and Browns games in the fall. Elsewhere in the facility, there was an artificial main street, with a library, a gift shop, a beauty salon, a chapel in which services were held on Sundays, and a couple of faux storefrontsâan oil company, a hardware store. Sometimes the residents were taken on outingsâpicnics or fishing at a nearby lakeâand sometimes relatives came to take them to lunch, but most of the time the clapboard streetscape of the memory-care unit was their world.
The streetscape at the Lantern, the home at Chagrin Valley, is particularly encompassing and detailed, but comforting fictionsâscenery, props, and other simulationsâare employed in many homes for people with dementia. Some nursing homes offer their residents realistic vinyl baby dolls, along with diapers, bottles, and clothes. Some residents grow so attached to the dolls that it seems they believe they are real babies, although it is difficult to tell. Many people become visibly calmer when they are holding the dolls; but some relatives and staff find the dolls demeaning, and wonder whether itâs possible not to infantilize a person who is cuddling a toy baby.
People with dementia often ask to go home. Some ask even if theyâre still in the house theyâve lived in for years; but people in institutions can ask many times a day. Telling a person in an institution that they live here now, that this is their permanent home, is usually neither comforting nor convincing, so, to address this problem, many nursing homes and hospitals have installed fake bus stops. When a person asks to go home, an aide takes them to the bus stop, where they sit and wait for a bus that never comes. At some point, when they are tired, and have forgotten what they are doing there, they are persuaded to go back.
Some years ago, a company in Boston began marketing Simulated Presence Therapy, which involved making a prerecorded audiotape to simulate one side of a phone conversation. A relative or someone close to the patient would put together an âasset inventoryâ of the patientâs cherished memories, anecdotes, and subjects of special interest; a chatty script was developed from the inventory, and a tape was recorded according to the script, with pauses every now and then to allow time for replies. When the tape was ready, the patient was given headphones to listen to it and told that they were talking to the person over the phone. Because patientsâ memories were short, they could listen to the same tape over and over, even daily, and find it newly comforting each time. There was a sĂ©ance-like quality to these sessions: they were designed to simulate the presence of someone who was merely not there, but they could, in principle, continue even after that person was dead.
In recent years, many more of these kinds of props and simulations have been devised: not just fake bus stops but fake buses, with screens for windows, on which footage of a passing scene gives the impression of movement; one home has made a simulated beach, with heat lamps, sand on the floor, and the sound of waves. There are versions of the Chagrin Valley streetscape in many countries around the worldâin the Netherlands, Italy, Canada, Australia. Many homes have rooms that re-create, with period details and vintage artifacts, a past world that their residents remember from childhood: the Dutch countryside of the nineteen-forties; small-town California in the nineteen-fifties; East Germany under Communism. All these fantasies are conceived of as a means of soothing the misery, panic, and rage that sometimes accompany dementia: to convey to people in later stages of the disease the impression 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.
Fifty years ago, it was common in nursing homes to use physical restraints to tie a resident to a chair or a bed, to prevent them from causing trouble or coming to harm. Then, in 1987, a federal law was passed that limited the use of physical restraints to situations where the safety of the resident or someone else was at stakeâthey were not to be used for punishment or for the convenience of the staff. The physical restraints were then often replaced by chemical ones, and residents were tranquillized with powerful antipsychotics such as Haldol. Many people thought the use of such drugs was a terrible thing, so they began searching for non-pharmaceutical alternatives to quelling troublesome behaviors, and psychological placebos such as fake bus stops proved to be quite effective. One patient who had been given Haldol every night to stop him from screaming was so calmed by Simulated Presence Therapy that he no longer had to be tranquillized at all.
But psychological placebos, like any placebos, are a form of deception, and so they make people uncomfortable. They seem like a throwback to a time, not long ago, when it was normal and acceptable for a doctor to lie to a patient. Until recently, for instance, it was thought that telling the truth about a fatal illness was pointless and cruel. The Hippocratic oath said nothing about lyingâit only proscribed doctors from doing harm. And what was harmful if not delivering a death sentence and destroying hope? Lying to most patients in this way now seems obviously wrong; but when it comes to people with dementia there is no consensus. To lie is to violate the respect that one person owes another; but lying to a person with dementia can protect them from awful truths that they have no power to alter. If a woman asks for her husband, having forgotten that he is dead, should you tell her the truth and cause her terrible grief, knowing that this fresh bereavement will likely repeat itself, over and over, day after day? Or should you just tell her that he is at the office? And is direct lying different from various forms of passive lyingâencouraging delusions, or allowing existing delusions to persist? What is more importantâdignity or happiness?
In Chagrin Valley one evening in early summer, Rachel and Jane sat eating dinner together at a small table by the window. (Some names have been changed to insure privacy.) Rachel had a bob of curly gray hair, and wore little metal-framed spectacles. Every now and again she made an anxious, high-pitched squeaking sound. âWhatâs that noise youâre making?â Jane asked. âAre you O.K.?â Jane wore a red hoodie and a red-and-white gingham shirt. Rachel didnât answer. For a while, they ate without talking.
âSweetheart, youâre making noises,â Jane said.
âI know,â Rachel said. âI canât help it.â
âYes, you can.â
Becky sat by herself in the opposite corner. She had a strong face with vivid blue eyes; her cheeks were ruddy and her wild gray hair was escaping from a loose bun, as though she had just come in from a walk across a windy moor. Every so often she tried to stand up, but bumped against the table and fell back down into her wheelchair. Becky was married to another resident, Cal, but she no longer knew him, although sometimes his presence distressed her, which the nurses thought might be a sign of recognition. Cal sometimes seemed to recognize herâsometimes he would sit next to her and stroke the back of her headâbut at other times he did not. Becky could not speak anymore, and spent most of her time being cared for by an aide.
George, Angela, and Carmen sat together at a long table in the middle of the dining room. Eleanore came into the room, wheeling her walker, and went up to the table. âO.K., ladies, what would you want for dinner tonight?â she asked. Eleanore had been a Girl Scout troop leader for many years, so she was used to taking care of people. Her hair was short and fine and colored a pale brown, and she wore round glasses. She had trouble with her memory and sometimes grew confused, but she knew that she was living in a nursing home and was still very much herself.
âI didnât bring anything for dinner tonight,â Angela told her.
âI didnât think you would bring anything,â Eleanore said. âI want to know if we can make anything for you.â
âWho is that back here?â George cried out, clutching the arms of his wheelchair and twisting around, trying to see behind him. âWhy are you back there? Why arenât you talking to me?â There was nobody there just then, but sometimes aides came up behind him and started wheeling his chair away without alerting him first, so he knew that someone might be lurking at his back where he couldnât see them.
âI am talking to you,â Eleanore said. âIâm trying to ask you what you want for dinner.â
âWhat are you doing?â George said. âWhatâs going on back there?â
âWill you tell us what you want to eat?â Eleanore repeated. âDo you like spaghetti? Do you like macaroni or spaghetti?â
âI donât know what to do,â George said. âWhat the hell am I supposed to do?â
âTell me yes or no, do you like macaroni?â Eleanore asked him patiently.
âWhat is she talking about?â Carmen asked Angela.
âSheâs talking too much,â Angela said.
âYou eat things, you drink things, you donât have a goddam thing,â George said.
âDonât swear,â Angela said.
An aide told Eleanore that there was a set menu for dinner, so she went to sit at her customary table by the door with Dr. Joe, a retired dentist. Dr. Joe did not talk much, so they usually ate together in silence. But at other times Eleanore would muse aloud about the course of her life. During the Second World War, she had worked as a switchboard operator for the military. She then stayed home to raise her children and never worked for pay again, but she had loved that job and still talked about it.
Later that month, she was going to turn one hundred, and she was trying to figure out how to think about this strange event. âI mean, thatâs ridiculous,â she said cheerfully. âWho lives a hundred years? So I never believed it. If they have a party for me at a hundred, then Iâll be a hundred. Iâm not objecting. But Iâm not going to stay that way. After all, the year keeps going, and Iâll keep going along with it, and next yearâs going to be a hundred and one, and then a hundred and two, and pretty soon Iâll be a hundred and five, and then what are they going to do with me? Theyâll put me on a fence post and say, Look at that lovely lady, she lived a hundred and five years and nobody knows why, so weâre trying to find out why. Whatâs the point in living all that long if you canât live it? And I donât think Iâve been living it. Iâm just existing. And when the time goes by and I say, Yeah, another year passed, and Iâm a hundred and two, a hundred and three, a hundred and four, and then what? What number do I have to reach before something changes? Do I have to go to a hundred and ten, and then be something else? Or what? Whatâs it all for? Thatâs the question Iâm asking, and I canât get any answers.â
Jim Beitel was too upset to sit down for dinner. He had come to Chagrin Valley only a couple of days before; for the first forty-eight hours his wife, Sondra, had stayed with him all the time, both of them miserable. A little while earlier, Sondra had forced herself to leave. Jim was fifty-eight; he had been given a diagnosis of Alzheimerâs at fifty-three. Now he barely spoke. He was a big, athletic man, six feet two, two hundred and twenty-five pounds. He was wearing a Led Zeppelin T-shirt, a rope necklace, black surf shorts, flip-flops, and a pair of sunglasses on his head. He had short, bristly gray hair and a short gray beard. He paced continuously, up and down the corridors, in and out of the dining room, into doorways and out again. Every now and then, he stopped suddenly and threw his arms out wide in a gesture of utter bewilderment.
Later in the evening, Sondra came back. She was a tiny woman in her late forties, with short blond hair. She stood with Jim in the central room and demonstrated how to throw a rubber ball into a toy basketball hoop. Then she gave the ball to him. Jim looked up at the hoop as though he didnât know what it was. He hugged the ball to his chest and began to cry.
Jim and Sondra had both worked as engineers in the Columbus, Ohio, office of a multibillion-dollar construction company. Jim oversaw big commercial projectsâconvention centers, hospitals, ballparks. They had met twenty years earlier, playing on a local soccer team. In 2009, Jimâs brother, to whom he was very close, died of kidney cancer in his early fifties, and Sondra thought that might have triggered something in Jim, because his symptoms started soon afterward.
The first thing she noticed was his reaction time: one day she said, while they were working on the computer together, âClose that window and open another,â and she noticed that it took him time to process what she had said. She then saw that in meetings he had begun asking people to repeat things and writing down what they said. Then one day he had an appointment with a doctor heâd been seeing for twenty-five years and he couldnât remember how to get there. Because he was so young, nobody thought of dementia. Doctors tested him for inflammation and hepatitis and mad-cow disease and autoimmune diseases; they gave him spinal taps and put him on steroids. Finally, they ordered a PET scan of his brain and diagnosed Alzheimerâs.
Jim went on disability, and Sondra bought a trained English setter to keep him company while she was at the office. The dog brought Jimâs medication to him at the sound of an alarm. When Jim was still able to drive but grew disoriented in large parking lots, he could tell the dog, âTruck,â and the dog would find his truck. If he got lost walking in the neighborhood, the dog tracked him down. The dog enabled Sondra to keep working awhile longer. But after a year it took so much out of Jim just to manage simple tasks like finding his coffee cup that he was exhausted by the end of the day, and she stopped working so that they could spend time together while he was still aware of it. They decided to check off some items on their bucket list. They took money out of Jimâs retirement account and travelled to New Zealand and Italy and Hawaii.
Sondra decided that if Jim did something weird, or said something that wasnât true, she wouldnât correct him. If he put on four baseball caps at once, or put a flip-flop on one foot and a sneaker on the other, she would just go with it. Then again, he had always been a pretty obstinate person, so this wasnât a big change in their relationship. âEveryone knew if Jim says the grass is blue itâs not worth trying to talk him out of it,â she said. âAnd that just rolled right into when he was sick.â
Eventually, things got to the point where Sondra couldnât manage taking care of him alone anymore, so she began looking into nursing homes. Chagrin Valley was much nicer than other places she sawâno funeral-home carpeting, no grim hallways with wall protectors and handrailsâbut it cost about the same. She dreaded leaving him there, but she also hoped that finding someone else to help with daily tasks would allow them to be close again. âI spent so much time taking care of him that I had no time to be his wife anymore,â she said. âBy the time where I can sit down on the couch and hold his hand, Iâm so completely drained mentally and physically that I canât even go through a photo album with him. Iâm hoping now I can hold his hand and go for a walk and just have that husband-wife relationship. We still have it; itâs just that we havenât been able to really experience it in a long time.â Many people said this: that while they were taking care of their wife or their father at home they were no longer a husband or a childâjust a nurse.
Jim mostly lost his ability to speak early on, but he could still recognize faces, and he could show emotion. Oddly enough, while many people with dementia grow angry and difficult, Jim was the opposite. âHe got a lot nicer,â Sondra said. âNot that he was mean before, but he was always very businesslike, very serious and by the book. The disease changed his personality. People would ask, Who is this guy?âhe was just so kind, and there was a softer side to him that they hadnât seen before.â Before, when he was frustrated he would get angry; now he was more likely to cry.
In losing his language so early but remembering faces, Jim was unusual. Most people with dementia start to become confused long before they stop speaking. Many people mistake one relative for anotherâmistake their daughter for their mother, or their son for their husbandâand many forget that their spouse or their parents are dead. It is common to imagine that you are somewhere else, such as a hotel or a prison or a ship, and to believe, therefore, that those who tell you youâre in a nursing home are trying to trick you. Some people believe that dramas on television are real. People with Lewy body dementia often experience visual and auditory hallucinations, and people with dementia of all sorts have problems with depth perception and find it difficult to distinguish dark patches on the ground from holes. Many imagine themselves to be living through an earlier time, when they had an office to go to or small children to pick up from school, or even earlier, when they themselves were small and dependent on their parents. Doctors have observed that there seems to be a âreminiscence bumpâ: that people whose memories are failing tend to remember the period of their late childhood and early adulthood more vividly than other stages of their life.
It is because of these characteristic confusions that dementia care has developed its characteristic lies. âI think for the most part itâs kinder to just go with the moment,â Jennifer Karp, the former acting director of nursing at Chagrin Valley, says. âBecause the chances are within the next few minutes theyâre not going to remember what just occurred anyway. To tell them repeatedly that their spouse has passed away, or when theyâre crying out for their mother to say, âYouâre ninety-four years old, where do you think your mother is?â Thatâs just cruel. So we say, âHey, maybe theyâre at the store.â Someone asked me yesterday, âWhere do you think all the kids went?â And instead of saying, âWhat kids?â I said, âI think theyâre playingâitâs a beautiful day outside.â And she said, âThatâs good, they can go play.â That was all she needed to hear.â
In dementia care, everybody lies. Although some nursing homes have strict rules about being truthful, a recent survey found that close to a hundred per cent of care staff admitted to lying to patients, as did seventy per cent of doctors. In most places, as in Chagrin Valley, there is no firm policy one way or another, but the rule of thumb among the staff is that compassionate deception is often the wisest course. âI believe that deep down, they know that it is better to lie,â BarryÂ B. Zeltzer, an elder-care administrator, wrote in the American Journal of Alzheimerâs DiseaseÂ & Other Dementias. âOnce the caregiver masters the art of being a good liar and understands that the act of being dishonest is an ethical way of being, he or she can control the patientâs behaviors in a way that promotes security and peace of mind.â Family members and care staff lie all the time, and canât imagine getting through the day without doing so, but, at the same time, lying makes many of them uncomfortable. To ease this âdeception guilt,â lying in dementia care has been given euphemistic names, such as âtherapeutic fibbing,â or âbrief reassurances,â or âstepping into their reality.â
The current prevalence of lying is in part a reaction to the opposite approach, which was favored in the middle of the last century. Oddly, at the time when doctors routinely lied to ordinary patients about their diagnoses, experts in dementia care advocated confronting confused patients with facts and truth. In the early nineteen-sixties, Lucille Taulbee and James Folsom, a nurse and a doctor working with a range of geriatric psychiatric patients, including some with dementia, at the V.A. hospital in Tuscaloosa, developed a program they called âreality orientation.â Small groups of patients were taught by an instructor standing at the front of a classroom with a pointer, which he used to indicate various props: a clock, a calendar, a picture, a map, plastic numbers, and, most important, a âreality-orientation board,â on which were listed such things as the name and location of the hospital; the year, month, and day of the week; the name of the next meal; the next national holiday; and the dayâs weather. In the class, the teacher told each patient his name, where he was, and the date. The teacher rehearsed these facts over and over until the patient managed to retain them, at least for the moment, at which point the teacher moved on to a new set of facts, such as the patientâs age, home town, and former occupation. These lessons were not confined to the classroom but reinforced continually throughout the day. Each patient wore a nametag at all times; there was another nametag attached to their bed, and a third tag identified their seat in the dining room. Before the patient ate each meal, they were reminded of what time it was.
Taulbee and Folsom claimed considerable success as a result of this program. Mr. R., for instance, who had lived in a psychiatric hospital since 1923, and at the time of his entry into the program had not spoken a word for fifteen years, could after seven and a half months not only read the entire reality-orientation board out loud but had begun to chat with staff outside the classroom. The core of the program was not giving up hope that even the most bewildered, isolated patient could, with enough training, return to the world. And the key was facts: these were the handles that the patients would cling to, to pull themselves back in. âWhen they arrived, they all were frightened, unhappy, and uncomfortable people,â Taulbee and Folsom wrote. âBut their look of hopelessness soon changed to hopefulness when we told them their names, where they were, and what date and day of the week it was.â
For decades, reality orientation was extraordinarily influentialâeven now, it is a rare nursing home that does not have a reality-orientation board somewhere on display. R.O. was one of the first efforts not only to halt but actually to reverse the cognitive symptoms of dementia, and as such it gave the staff of nursing homes something to do that felt more hopeful than the endless round of washing, dressing, and feeding. But, even as reality orientation became mandatory in many places, its rigid methods were resisted and mocked by patients and staff. A pair of sociologists who spent time in some Midwestern nursing homes in the early nineteen-seventies discovered that reality-orientation training had degenerated into farce:
Aide [pointing to the weather on the R.O. board, which reads ârainingâ]: Whatâs the weather like today, Emma?
Emma turns her head slightly and quickly looks out the window.
Emma: Well, it looks like the sun is shining kinda bright.
The sun happens to be shining at the moment.
Aide: Are you sure? It says itâs raining. Doesnât it? [finger still pointing to board]
Emma: Well, it doesnât look like it from here.
Aide: What does it say here, Emma? [directing Emmaâs attention to the board].
Emma: It says itâs raining.
Aide: [warmly] Thatâs correct. Very good.
In some cases, the training seemed worse than pointless, forcing patients to confront realities that might have been better left unconfronted. One patient the sociologists encountered had been relatively calm until she started R.O. training, during which she was continually reminded that she lived in a nursing facility. Once this sank in, she began to cry all the time and pace around the ward, saying that she wanted to go home. It was far from clear that R.O.âs version of reality was relevant or helpful for long-term patients. Keeping track of the weather seemed unnecessary when a patient was rarely allowed outside a locked ward. And keeping track of calendar and clock time only drew attention to the dreariness of nursing-home life, where each day was more or less like the last. The kind of reality most relevant to dementia patients was not the kind that would be represented on an R.O. board: not âToday is Monday/Tuesday, the weather is rain/sunâ but âYour spouseâs name is ___. He/she is alive/dead.â
In the early nineteen-eighties, a social worker from Cleveland named Naomi Feil began to practice what she called validation therapy, which rejected R.O.âs absolutist position on truth. She believed that it was wrong to lie outright, but also wrong to correct: the thing to do was to enter into the emotional world of the person with dementia and validate their feelings, because feelings were more important than facts. To many people working with patients, the idea that rigorous truthfulness was unnecessary and even harmful came as an enormous relief.
To advocates of reality orientation, Feilâs validation therapy seemed not empathy so much as collusion. But the validation approach grew more and more popular, to the point where the idea of sticking to the truth came to be an unconventional position. Then, in the nineteen-nineties, an Englishwoman named Penny Garner came up with an approach to dementia care that was considerably more radical in its rejection of truth-telling, and aroused considerably more hostility.
Garnerâs mother, Dorothy, began to notice, in her late fifties, that her memory was failing and she was getting confused, and she grew sufficiently worried that she insisted on a brain scan. The scan revealed extensive atrophy, but her husband, a doctor, thinking it best, didnât tell her. He told her only that she didnât have a tumor, and not to worry; if she wanted to remember things, she should just try harder. Dorothy grew disturbed when confronted with her mistakes, so Garner found that the best way to keep her mother happy was to go along with everything she said, no matter how peculiar. Dorothy had travelled a lot, and Garner saw that, when surrounded by strangers, in a line at the supermarket, or in a doctorâs waiting room, she often guessed that she was at the airport, happily anticipating boarding a flight. Garner always went with it. Her father couldnât adjust to this strategy at allâhe insisted on setting Dorothy straightâbut Garner discovered that she quite enjoyed the Alice in Wonderland quality of those days with her mother.
After Dorothy died, Garner decided that she ought to use what sheâd learned taking care of her. She had no medical trainingâshe was a stay-at-home mother living in the Cotswolds, a bucolic region just west of Oxfordâbut in the early nineteen-nineties she started volunteering with dementia patients at her local hospital, in Burford. During the next ten years, she refined her ideas into a system. First among her rules: Never ask questions. Questions, she thought, put you on the spot: they could cause a person with dementia to panic by demanding an answer that they might not be able to give. Instead, she learned to start a conversation by rambling on about something boringâusually the weatherâin order to ease her way into the personâs attention in an unthreatening manner. Once they started talking, she would use words they had used, mirror their gestures, and declare herself fascinated by what they said, to create a sense that at last they were with someone who really understood them.
Another of her rules was: Never contradict anything the person said, no matter how distant from reality, in order to spare them a distressing confrontation with their own decline. But it wasnât enough simply to avoid correcting; to keep the person truly happy, she thought, you had to identify the roles in which they were happiest and which fit common situationsâas Dorothy was happy, while waiting for something, to believe she was a traveller at the airportâand then you had to keep them playing those roles as much as possible. Garner instructed each personâs family to figure out what those roles might be. For instance, one woman in the hospital, Alice, had been a crack bridge player. Garner arranged for two bridge novices to ask Alice to teach them. After a while, she could not play very well anymore, but she no longer needed to: Garner found that all it took to trigger Aliceâs sense that bridge was being played was a certain velour tablecloth. âAs time went by, most of Aliceâs waking life revolved around Bridge,â Oliver James, a psychologist and Garnerâs son-in-law, wrote in âContented Dementia,â his book about her technique. âPenny created a loop for her in which a large part of every day consisted of waiting to play, playing, having tea while playing, recovering from having played and discussing plans for playing tomorrowâlike a happy version of the film Groundhog Day.â
Alice was not unusual, Garner found: often, a single prop or gesture was all that was needed to keep a person feeling that they were playing their accustomed role in a beloved activityâthat, and a caregiver who could keep the scene going. The requirements were few enough that Garner found she could keep several scenes going at once. âYou might have ten or twelve people with dementia in the same room, but theyâd all think it was something else,â Jan Dewing, who was the director of the Burford hospital in the nineteen-nineties and is now a professor of nursing at Queen Margaret University, in Edinburgh, says. âOne guy who used to work in London, in the City, years ago thought it was his club. Someone else thought it was a church hall where they came to practice the piano. There was an ironing board there, and someone thought it was an offshoot of the laundry where she used to work. One used to be a Wren in the Royal Navy and thought she was having a reunion with her Wren friends.â
In order to keep a person safely inside their world, it was necessary to figure out the boundaries and contents of that worldâwho lived in it, what activities took place there, and in what eraâso that there would be as little dissonance as possible when the person used information from that past world to interpret the present. If there was someone missing from the present, for instanceâbecause that person had moved away, or diedâit was necessary to arrive at an explanation for this absence that the person with dementia would accept. This had to be done by a careful process of trial and error. If, for example, the person asked often where their son was, it was necessary to find out, by experimenting with answers and watching their reactions, how old they believed their son to be at that moment. If they believed him to be a small child, then telling them truthfully that he was out of town at a medical conference, say, would cause bewilderment or suspicion; but if they believed their son to be a college student, telling them that he was playing in the garden would also be a mistake. Continuity was essential. Even a momentary glimpse of another reality that led patients to doubt their understanding of things could be horribly traumatic; all the more so because they would not remember exactly what they had been traumatized by, and so would be left only with a feeling that something was threatening and incomprehensible.
Garnerâs method had much in common with improv comedy, following the same rules: Never say no to the reality youâre given; say âYes, and,â building on whatever the other person said; donât ask questions. It also called on the same skillsâquick thinking, refusal to be embarrassed, delight in the absurd. The best preparation for caring for a person with dementia, Garner thought, was learning such techniques at drama school. And, indeed, professional actors elsewhere were making that connection. Northwestern Universityâs medical school was working with the Lookingglass Theatre Company, in Chicago, and Karen Stobbe and Mondy Carter, improv artists, were travelling around the U.S. giving workshops on the uses of improv in dementia care.
Some relatives worried that they couldnât make Garnerâs method work because they werenât good actors. They found the constant manipulation upsetting, and feared that their deceptions would be detected. Garner recognized that sticking to her method with the necessary consistency required a certain emotional remove. She concluded that in order to put her method properly into effect it was necessary for the relative to stop thinking of the person with dementia as their mother or father or husband or wife; they must start thinking of them, instead, as their client.
Other relatives worried that to lie was to betray a trust. To them, Garner said, âGrow up.â To insist on the truth seemed to her immature and selfish when a vulnerable personâs happiness was at stake. Having witnessed the desperate anxiety that could make life with dementia a hell for both the sufferer and their family, she felt that to worry that lying was bad was to miss the whole point.
Some dementia experts felt that Garnerâs method was unethical, because it encouraged delusions. The British Alzheimerâs Society felt strongly enough about this that it issued a formal statement on the subject: âWe struggle to see how systematically deceiving someone with dementia can be part of an authentic trusting relationship in which the personâs voice is heard and their rights promoted.â But to Garner the reality of people with dementia was not a delusion in the way that a belief that they were Queen Victoria or Napoleon would be: it was not a delusion but a memory. Her clients were living in realityâthey were just using the reality of the past to understand the present. Besides, she wasnât promoting delusions; she was just refusing to correct them. âYouâre not actively reinforcing the idea that Fred is alive when you know heâs died,â she said. âYou are simply not disturbing the idea that Fred is alive that the person with dementia already has. Imagine a conversation between two people in which one says, âFred is so good at tennis,â and the other person says, âYes, Fred is good at tennis, but we canât forget that heâs deadâ!â
Garner was an outsider with no medical training, which made experts suspicious, but some were sufficiently impressed by what they saw at Burford to conduct studies. Positive results were published in AgingÂ & Mental Health and in the Journal of Social Work Practice, and, more recently, Niall McCrae, a senior lecturer in mental health who specializes in the elderly at Kingâs College London, embarked on a multiyear study of Garnerâs techniqueâboth its effectiveness in improving patientsâ well-being and the feasibility of putting it into practice in places larger than Burford. âIn a textbook of mental-health care, you will not see advice that you should meet the person with delusions halfway,â McCrae says. âBut, in reality, the best nurses, the best carers, do that.â Garnerâs method allowed many people with dementia to avoid panic and misery and to live out their last years in a state of happy delusionâhow could that be wrong?
Years ago, the philosopher Robert Nozick proposed a thought experiment: a person could be hooked up to an Experience Machine, which would provide any experiences the person chose, for the rest of their life, and which the person would experience as their lifeâthe only catch being that it wouldnât be real. Would people want that? Nozick thought that they would not, because, as the medical ethicist Maartje Schermer puts it, people ânot only want to experience certain things but also to do things, to be a certain kind of person and to live in contact with reality.â Schermer believes that deceptive treatments of dementia patients have something in common with the Experience Machine, and to that extent they are suspect. But she feels that dementia changes a person in a way that makes the calculation different.
âThe Experience Machine shows that there is more to the good life than merely experiences,â she writes. âWell-being comprises more than just âfeeling good.â But this does not necessarily show us that illusory pleasant experiences have no value at all.â To reject happy delusion on principle seems to her too puritanical, too rigid. Besides, she believes, once a person with dementia has lost the capacity to tell the difference between truth and falsehood, or, really, to hold beliefs at all, that person has also lost the capacity to be lied to. âWhen there is only pain and no capacity left to deal with that pain, to really understand or come to grips with it, nor even to remember it for very long, then the truth cannot contribute to a good life.â
In the memory-care unit at Chagrin Valley, it was time for the Tuesday-morning cognitive exercises. Kelly, a nurse, handed out pieces of paper on which the letters of the alphabet were written with dotted lines, so that they could be traced. Some of the residents could trace them easily; others could not do it at all. Rachel traced the letters carefully, with intense concentration, but she saw only the letters on the left side of the paper. âJimmy, write me a sentence, any sentence,â Kelly said, and held out a pencil. Jimmy Carter was one of the abler residents, in his mid-seventiesâtoo able for tracing letters. He took the pencil from Kelly and wrote, âI Jim Carter would like to get out of this mud, out of hope.â
Jimmy Carter was always cracking jokes, but he was also very unhappy that he couldnât leave. âI donât understand how I got here,â he said. âThey didnât tell me, they just dropped me off. The patients, some of them are bad. Itâs not for me, to be in a place like this.â Kelly looked over Jimmy Carterâs shoulder and read his sentence. âWhy donât you tell me something about your company?â she suggested. He wrote, âMy wife and I started our business forms company along with our 3 daughters. We have been for 4 years.â A resident named Paul sat opposite Jimmy Carter and sketched him. The sketch was very good. George, who had been dozing, woke up and started singing âYankee Doodle Dandyâ in a rich bass voice, beating time on the arms of his chair.
Jim Beitel continued to wa