A reader dealing with the strains of a family member suffering from Alzheimer's raised this interesting question:
"Our father always stressed how important it was to tell the truth. Now he has dementia, and my brother says he's been told it's okay to tell white lies so as not to further agitate our father. This makes me really uncomfortable. How can we resolve this?"
When a family member or friend begins to lose their memory and cognitive abilities because of dementia, it can be hard to know the best way to respond. What should you say, for instance, when the person with dementia repeatedly asks about a spouse or child who is no longer alive? How many times can you tell the truth and watch a loved one suffer the same loss again and again? Which is worse: telling a lie, or the harsh truth?
Your brother is describing an approach commonly called therapeutic fibbing, an effective yet controversial strategy, according to the Alzheimer's Association. In a nutshell, it's lying - or not correcting a misconception - to decrease agitation and anxiety in a person with Alzheimer's or dementia.
This is no small problem. An estimated 5.5 million Americans were living with Alzheimer's disease in 2017, reports the Alzheimer's Association.
In New Zealand the frequency of the disease is increasing as the population ages. According to Southern Cross, it is "estimated that the number of New Zealanders living with Alzheimer's disease will reach 70,000 by 2031 (from 28,000 in 2006)."
Elaine Schreiber, 79, is a Wisconsin woman with Alzheimer's.
Not long ago, I spoke with her husband, Martin, a former governor of Wisconsin and the author of "My Two Elaines: Learning, Coping and Surviving as an Alzheimer's Caregiver." He's perhaps the best-known proponent of therapeutic fibbing.
Justifying "therapeutic fibbing"
In a telephone interview, Schrieber, also 79, told me how he justifies this approach. "Elaine repeatedly asks, 'How are my parents?' Early on in her illness, I told her the cold truth, which is that both of them are dead. The shock on her face was so devastating because she worried that she might not have gone to the funerals or said goodbye." Over time (she's been diagnosed for 14 years now), Schreiber says he could clearly see the anxiety that the truth provoked, which is why he started to fib, telling her instead: "Your parents are very, very happy. In fact, your mom is at church."
Schreiber said that there's no benefit in repeatedly trying to correct loved ones and that a fib can actually draw the caregiver closer to the patient. "This is about the importance of joining the world of the person with Alzheimer's," he said.
Before we hung up, Schreiber relayed one last story. Not that many years ago, he says, Elaine told him matter-of-factly, "I'm beginning to love you more than my husband." He didn't correct her, nor did he ask about her "turkey" of a husband. "I just grabbed that moment of joy," he said.
What doctors say about employing white lies
Although doctors and medical ethicists are generally proponents of truth-telling, dementia experts tend to support these kinds of white lies - with certain caveats. "For people who are cognitively impaired to a level where they cannot absorb or process information well enough to understand it, therapeutic fibbing is a way to avoid upsetting them in ways that serve no purpose," said Amy D'Aprix, an ageing and caregiving expert and a developer of the Home Instead Senior Care Alzheimer's CARE Training Program.
But D'Aprix also cautions that caregivers must not justify telling a therapeutic fib in order to avoid difficult or painful conversations. "Once I was asked if a daughter-in-law should tell her mother-in-law, who had dementia, that her son had just died. I said, 'Yes, she deserves to be told, once or maybe twice.' That's because the mom deserved the right to be sad or grieve even if she couldn't retain the information. But more often that, that simply feels cruel."
I wish I had known more about all this after my mother died last year, because my father asked repeatedly - sometimes 10 times within the hour - where she was. I felt I needed to be honest and tell him the truth, and so I did. "Mum passed away, Dad." Each time I could see his face absorb the painful shock.
To gain more perspective, I spoke with Jason Karlawish, co-director of the University of Pennsylvania Memory Center. Karlawish prefers calling this approach "loving deception" and says whether or not to lie is about intent, reminding us that "the moral role of the caregiver is to respect the person's sense of identity and self."
He strongly advises that "the default is the truth and that the mere fact that the truth may be painful isn't sufficient to avoid it." Only if the patient cannot process and make sense of a particular truth is it okay to lie. After all, he said, "truth and trust are two important virtues of behaviour that allow us to get on in life."
Karlawish also strongly cautions that there's a big difference between accepting a patient's different sense of reality and mocking it, which he says he has witnessed with some frequency in more than 20 years of practice in this specialty. "You don't make eyes to people around you. You don't snicker. You don't joke that it's 1963 when it's 2018."
D'Aprix is adamant that therapeutic fibbing is not the one-size-fits-all answer. She also recommends that caregivers consider these other strategies:
• Try changing the subject. Instead of lying or getting into an argument, redirect the person to a new topic.
• Empathise. Listen for the emotion driving the patient's behavior and validate it, rather than argue with the facts. For instance, if the person is angry or agitated, acknowledge those feelings as real, which they are, even if the object of their ire is not.
• Don't be forceful. Avoid trying to make patients see things through your eyes. They simply may not be able to do so, and any efforts may lead to greater agitation or suffering.
• Accept their reality. Even when it differs from your own, if your loved one is okay and not in danger, let them be in their own world, D'Aprix counsels.
Hopefully this information will help the reader and his brother come to the same page.