A reader who was concerned about the burden of a family member with Alzheimer's disease raised the following interesting question: "Our father always emphasized the importance of telling the truth, now he has dementia and my brother says he was told to tell white lies so as not to excite our father, which really makes me uncomfortable, how can we resolve that? "
When a family member or friend loses their memory and cognitive skills due to dementia, It can be difficult to know how to react the best. For example, what should you say if the person with dementia repeatedly asks for a spouse or child who is no longer alive? How many times can you tell the truth and see a loved one suffer the same loss over and over again? What's worse: a lie to tell, or the hard truth?
Her brother describes an approach commonly referred to as therapeutic fever, an effective but controversial strategy, according to the Alzheimer's Association. In short, it is lying ̵
This is not a small problem. An estimated 5.5 million Americans were living with Alzheimer's in 2017, reports the Alzheimer's Association. Ten percent of over-65s suffer from this disorder. With increasing age, the prevalence increases: among the 65- to 74-year-olds, 3 percent have Alzheimer's; that jumps to 17 percent from those 75 to 84, and a staggering 32 percent in those 85 and older.
Elaine Schreiber, 79, is one of those with Alzheimer's. Recently, I spoke with her husband Martin, a former governor of Wisconsin, and author of "My Two Elaines: Learning, Coping, and Surviving as an Alzheimer's Caregiver." He is perhaps the most well-known proponent of therapeutic fibbings.
In a telephone interview, Schrieber, also 79, told me how he justified this approach. "Elaine keeps asking, 'How are my parents?' Early in her illness, I told her the cold truth that both are dead, the shock in her face was so devastating because she feared that she would not Over time (she has been diagnosed for 14 years), Schreiber says he can clearly see the fear that provokes the truth, why he started cursing and instead told her, "Yours Parents are very, very happy. Mum is in the church. "
Schreiber said there is no advantage in repeatedly trying to correct loved ones, and that a Fib can bring the caregiver closer to the patient. "It's about joining the person's world with Alzheimer's," he said.
Before we hung up, Schreiber told a recent story. Not so many years ago, he says, Elaine said matter-of-factly, "I'm starting to love you more than my husband." He did not correct her, nor did he ask about her "turkey" from a husband. "I just got that moment of joy," he said.
When is not it okay?
Although physicians and medical ethicists are generally proponents of truth-finding, dementia experts tend to support such white lies – with certain reservations. "For people who are cognitively impaired to a level where they can not absorb or process information well enough to understand it, therapeutic fever is a way not to upset them in a way that serves no purpose," she said Amy D & # 39; Aprix Expert and Developer of the Home Independent Senior Care CARE Training Program
But D & # 39; Aprix also warns that carers should not justify giving a therapeutic glow to difficult or painful conversations to avoid. "One day, I was asked if a daughter-in-law's daughter-in-law, who had dementia, would tell her that her son had just died, and I said, 'Yes, she deserves to be said once or maybe twice.' That's because the mother deserves the right to be sad or grieving, even if she can not keep the information, but more often that just feels cruel. "
I wish I had learned more about it after mine Mother last died year because my father repeatedly – sometimes 10 times within the hour – asked where she was. I felt that I needed to be honest and tell him the truth, and so did I. "Mom died, dad." Every time I could see his face absorbing the painful shock.
To gain more perspective, I spoke with Jason Karlawish, co-director of the Memory Center of the University of Pennsylvania. Karlawish prefers to call this approach "loving delusion" and says whether or not lies are intentional and reminds us that "the moral role of the caregiver is to respect the person's sense of identity and self". He strongly advises that "the mistake is the truth and that the mere fact that the truth can be painful is not enough to avoid it". Only if the patient can not process and understand a certain truth is it okay to lie. Finally, he said, "Truth and trust are two important virtues of behavior that allow us to move forward in life."
Karlawish also warns that there is a big difference between accepting and mocking a patient's different sense of reality, which he says he has seen at a frequency of more than 20 years of practice in this specialty. "You do not make eyes for people around you, you do not chuckle, you're not kidding that it's 1963 when it's 2018."
D & # 39; Aprix is adamant that therapeutic fever is not one thing – all answer. She also recommends that caregivers consider these other strategies:
• Try to change the topic. Instead of lying or getting into a dispute, turn the person around to a new topic.
• Empathize. Pay attention to the feeling that drives the patient's behavior and confirm it instead of arguing with the facts. If the person z. For example, being angry or upset, recognize these feelings as real to what they are, even if the object of their anger is not.
• Do not try to force patients to see things through your eyes. They just can not do it, and every effort can lead to greater agitation or suffering.
• Accept their reality, even if it is different from your own. If your loved one is in order and not in danger, let her be in her own world, says D & # 39; Aprix.
Hopefully this information will help the reader and his brother to come to the same page.