When my father was declining from Alzheimer’s disease, one of the things my siblings and I used to argue about was whether to correct his confusions.
For example, my father, in his impaired state, expected his live-in aide to work for room and board and would lash out at her (and us) whenever he learned that she had been paid. My siblings tended to think that it was fine to lie to him about matters like this if it helped him (and us) get through one of his rancorous moods.
I fought against this practice as a matter of principle. As a doctor, I had seen how even well-meaning deception, such as withholding bad news, could be damaging. To me, a healthy relationship with our father, even in his debilitated state, could be based only on truth and trust. Small lies, even if told with the best of intentions, would undermine his dignity and erode what little connection we had left with him.
As it happens, the disagreement between me and my siblings mirrored a larger debate in the medical community over the past few decades about how best to treat dementia patients. Should the ethical demands of truth-telling give way to the everyday needs of dementia care? Or is telling the truth always the best way to uphold the dignity of patients and serve their mental health?
Though I began the journey through my father’s illness with the view that being straight with him was paramount, my experience caring for him, as well as research and reporting I did for a book, led me to change my position. I now think that lying can be the best strategy a dementia caregiver can use, not just practically but also morally. Deception, I now believe, may uphold a different conception of the patient’s dignity — respecting the integrity of his worldview, however askew it may be.
Lying to dementia patients was consistently discouraged until the 1980s or 1990s. Instead, so-called reality orientation was the norm: forcing dementia patients to face hard truth even if it entailed considerable anguish — that a loved one was really dead, for example, or that the patient was now living in a nursing facility and would never go home. The idea was to provide the person with a greater understanding of his or her time, place and surroundings. It was a view about treatment but also about the ethics of care and respect.
But in the 1990s, an English homemaker named Penny Garner, whose mother, Dorothy, had dementia, began to advocate a new approach. Ms. Garner noticed that allowing Dorothy to have her perspective, no matter how absurd, kept her calm and happy.
This was the genesis of an approach often known as therapeutic deception (an earlier concept was called validation therapy), which encouraged caregivers to go with the flow of a patient’s thoughts, even if they were wrong or deluded or in conflict with reality. Caregivers were told they should not introduce fictions that patients didn’t already hold but should not fight against their comforting delusions either. Ms. Garner introduced her system as a volunteer at a hospital, and it was eventually laid out in a book by her son-in-law, the psychologist Oliver James.
Not surprisingly, many experts disagreed with this approach. The British Alzheimer’s Society has issued the following statement: “We struggle to see how systematically deceiving someone with dementia can be part of an authentic trusting relationship in which the person’s voice is heard and their rights promoted.”
Nevertheless, Ms. Garner’s idea is now being used in dementia care facilities in the United States, Canada, France and other countries. While doing research on Alzheimer’s, I took a handful of trips to such facilities, including one in the Netherlands just southeast of Amsterdam. The Hogeweyk, as it is called, introduced an innovative model of care when it opened a “dementia village” in 2009. Its 150 or so residents, most with advanced disease requiring round-the-clock support, could move freely through the buildings and outdoor spaces, albeit under the watchful eye of cameras and 250 or so caregivers.
The residents live in individual houses, each with a distinctive style — haute bourgeois or Craftsman, for example — selected to match their tastes and preferences before they were moved to the village. During the day, they can wander about, watched over by the caregivers who run the supermarket and the hair salon and so on. They can go to the market with a caretaker, encouraged to believe that they are helping him shop for the evening meal. If they get lost, there is always someone around who will help them get home.
The amenities in the village are extraordinary, but during my visit I was skeptical. Wasn’t the facility a sort of Potemkin village, with its carefully curated homes and caretakers posing as gardeners? Wasn’t it a stage set, like in the movie “The Truman Show,” designed to convince residents of something that wasn’t true — that they were still at home?
My guide took exception to my questions. “That is not lying,” he said. “It is dealing with dementia the way it is.” He went on: “If a patient is asking for her daughter, and you know the daughter isn’t coming, you say, ‘She will come in a couple of hours.’”
It was better to validate a resident’s perspective than to futilely try again and again to reorient it, he explained. If a resident wanted to go home and you knew it wasn’t possible, it was better to distract the person, even if it meant letting him wait at a fake bus stop till he got tired and forgot what he was waiting for.
In the course of visiting nursing homes and talking with doctors, as well as doing the hard work of caring for my father, I became sympathetic to this view. I still don’t believe that we should be lying to our loved ones with dementia as a matter of course. However, I have come to learn that the relationship between ethics and treatment in dementia is a complicated one. The demands of truth-telling exist in tension with other moral imperatives, such as consolation, reassurance and empathy.
For me, this shift in perspective began the day that my father expelled his aide, Harwinder, from his house after he learned again that she had been paid. I went over to the house to try to reason with him. I knew that if Harwinder stopped working for him, that would surely be the end of his independent living. He would end up in a locked memory unit like so many other dementia patients.
When I drove up to the house, Harwinder emerged to meet me. She told me that after my father kicked her out, she sneaked back in and hid in a closet in the guest room so she could keep an eye on him till I showed up.
I asked her to stay in the driveway and I went inside. After giving my father some lunch, I took him upstairs for a nap.
When he was nodding off, I went downstairs and motioned for Harwinder to follow me up to the bedroom. She was standing behind me when my father opened his eyes.
“Look, Dad, Harwinder came back,” I said. He eyed her suspiciously.
“She says she is sorry,” I said. “She told me she will work for free. No money. Just food and shelter.”
His face relaxed, and I discerned a faint smile. “OK,” he said to her. “Please come in.”
Sandeep Jauhar (@sjauhar) is a doctor and the author of the forthcoming book “My Father’s Brain: Life in the Shadow of Alzheimer’s,” from which this essay is adapted.
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