📑 The Comforting Fictions of Dementia Care

Bookmarked The Comforting Fictions of Dementia Care by Larissa MacFarquhar (The New Yorker)
Many facilities are using nostalgic environments as a means of soothing the misery, panic, and rage their residents experience.
This lengthy read provides an interesting insight into the life and times of those with dementia. It reflects on the changes in care, with the move away from drugs and creating the conditions to support memory. Associated with this is the problem of lying and memory.

Marginalia

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 stake—they 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.

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. “I believe that deep down, they know that it is better to lie,” Barry B. Zeltzer, an elder-care administrator, wrote in the American Journal of Alzheimer’s Disease & Other Dementias. “Once 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 patient’s behaviors in a way that promotes security and peace of mind.” Family members and care staff lie all the time, and can’t imagine getting through the day without doing so, but, at the same time, lying makes many of them uncomfortable. To ease this “deception guilt,” lying in dementia care has been given euphemistic names, such as “therapeutic fibbing,” or “brief reassurances,” or “stepping into their reality.”

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.

There is the issue of inconsistency among all the people with whom the person comes in contact. What if a person with dementia asks for his mother, and one person says, “She’s out shopping,” another says, “I’m afraid she’s dead,” and a third says, “Are you feeling sad?” This problem is not a minor one. Many people with dementia are already suspicious of those around them. Some suspect that people are lying to them (and, of course, they are often right), or that someone who claims to be a relative is actually an impostor. Some suspect that their belongings have been taken (they may be right about this, too—residents of nursing homes often wander into one another’s rooms and pick things up), or that they’re going to be attacked. Some believe that the care staff have abducted their children. Even if they don’t suffer from these more extreme fears, they will likely be aware that, since their diagnosis, other people suspect them of being confused whether they are or not, and so may be second-guessing what they say, or making decisions without consulting them. So the risk of arousing suspicion is a big risk to take, especially if the whole idea is to ease a patient’s anxiety.

via Austin Kleon

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