Oddly enough, while many people with dementia grow angry and difficult, Jim was the opposite. The disease changed his personality. People would ask, Who is this guy? 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 another—mistake their daughter for their mother, or their son for their husband—and many forget that their spouse or their parents are dead. 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.
It is because of these characteristic confusions that dementia care has developed its characteristic lies.
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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.
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.
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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. In the class, the teacher told each patient his name, where he was, and the date. 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. 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.
For decades, reality orientation was extraordinarily influential—even now, it is a rare nursing home that does not have a reality-orientation board somewhere on display. 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.
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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. 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. Keeping track of the weather seemed unnecessary when a patient was rarely allowed outside a locked ward.
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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. In the early nineteen-eighties, a social worker from Cleveland named Naomi Feil began to practice what she called validation therapy, which rejected R. 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.
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Dementia-care facilities offer regular manicures and other salon services to break up the monotony of the days. 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. 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. Garner always went with it. She had no medical training—she was a stay-at-home mother living in the Cotswolds, a bucolic region just west of Oxford—but 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. 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.
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.
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 activity—that, 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. 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. In order to keep a person safely inside their world, it was necessary to figure out the boundaries and contents of that world—who lived in it, what activities took place there, and in what era—so 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 instance—because that person had moved away, or died—it 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.
It also called on the same skills—quick 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. 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. 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.
Her clients were living in reality—they were just using the reality of the past to understand the present. Some people in the dementia field believe that to think of the disease as a terrible harm is to think slightingly of people who are living with it. Sometimes relationships between a person with dementia and their family grow more emotional and intimate as talking falls away.
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. Would people want that? But she feels that dementia changes a person in a way that makes the calculation different. 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. 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. Jimmy Carter was one of the abler residents, in his mid-seventies—too able for tracing letters. The patients, some of them are bad. We have been for 4 years. The sketch was very good. Jim Beitel continued to wander, but his mood was very different from what it had been the day before.
He no longer seemed distressed, just restless. When he tried to open a locked door, which set off an alarm, he raised his hands in mock fright, giggled, and moved on. Carmen was not amused, and waited for him to stop. He arrived back in the central room and spotted the basketball hoop and the rubber balls. An aide saw him holding a small orange ball; she picked up a giant beach ball and showed it to him.