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. Ten percent of people 65 and older have the disorder, and as the population ages, the prevalence increases: Among those 65 to 74 years old, 3 percent have Alzheimer’s; that jumps to 17 percent of those 75 to 84, and to a harrowing 32 percent in those 85 and older.
Elaine Schreiber, 79, is one of those 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.
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 aging 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. “Mom passed away, Dad.” Each time I could see his face absorb the painful shock.
To gain more perspective, Jason Karlawish, co-director of the University of Pennsylvania Memory Center, 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 behavior 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.Leave a reply