People living with dementia commonly experience different realities and beliefs from those around them.
Barton Bernstein, an emeritus professor of history at Stanford University, has experienced this firsthand with his 79-year-old wife, Donna, who has advanced dementia. He’s been her caregiver for the past two and a half years at home until recently, when a fall required her to be moved to a Sunrise Assisted Living/Memory Care Facility. Barton, 82, bicycles to the memory care facility twice daily to be with his wife through lunch, dinner, and bedtime.
“Occasionally she’ll say, ‘I want to go home.’ And I’ll say, as I wheel her into the room, ‘Oh, now we’re home.’ She’ll look at me and smile, I’ll kiss her and she’ll go to sleep,” Bernstein said. He knows that if he were completely honest with her and told her that she was in a memory care facility, he would just upset her for the moment and not accomplish anything.
Donna Bernstein Lied to Her Own Mother Out of Compassion
Before she became ill, Barton and Donna had many occasions to discuss the problem of lying to people with dementia. In fact, they had seen her mother through years of Alzheimer’s disease before she died in the early 1990s, and although difficult, often felt like they had to lie to her.
Due to her family history of Alzheimer’s, Barton and Donna discussed what their preferences would be if either of them was diagnosed in the future. According to Barton,”(w)hat we hit upon, roughly, was that in the early stages, when there’s still a lot of understanding, you try to be reasonably truthful but, as understanding lapses, lying for the sake of comfort is acceptable and she reluctantly agreed.”
Barton believes that after the early stages, people with dementia are confused and anxious. As a loving caregiver, he feels that it is important to be attentive to the emotions of the other person, and maximize their emotional welfare, even if it involves telling white lies to the person.
Hear more of Bernstein’s story and his thoughts on “compassionate deception” in this webcast video.
Expert Larissa MacFarquhar Discusses the Advantages of Compassionate Deception
As you can see from Barton and Donna Bernstein’s situation, there is often confusion and uncertainty in those with dementia beginning after the early stages. Should you be honest to a person with dementia about painful truths (e.g., their parents or siblings are dead) or should you lie to keep them happy? Is there anything wrong with lying in this situation? If you had dementia, how would you want to be treated?
Journalist Larissa MacFarquhar, author of The New Yorker article, “The Comforting Fictions of Dementia Care,” agrees with Barton Bernstein. She examines how the concept that withholding truths, or even promoting outright falsehoods, is a “reasonable and even ethical choice for those caring for patients with dementia.” MacFarquhar presents several convincing arguments that “compassionate deception” is a valid approach in the care of dementia patients, as follows:
- To the extent that it helps a person with dementia feel happier and calmer, compassionate deception allows them to believe in a gentler reality (one in which, for instance, their spouse is still alive).
- Avoiding the disclosure of potentially devastating information to patients does avoid precipitating distress or depression that may be detrimental to the patient’s well-being.
- MacFarquhar notes that “(b)y helping people with dementia to avoid panic and misery and to live out their last years in a state of happy delusion — how could that be wrong?”
Her article revealed how a growing number of nursing homes are creating nostalgic environments lobbies designed to look like small towns with street lights and building facades as a means of soothing the panic and rage residents with dementia often experience. These illusions, she reported, “have proven successful in many situations, challenging policies and practices aimed at truth-telling at all costs.”
Tactics to Use for Compassionate Deception
When a loved one with dementia can’t recall painful events from the past, such as the death of a spouse, reminding them about such a painful event may result in significant distress, and if you remind them about this painful event repeatedly, it results in significant distress every time. Instead, consider using compassionate deception tactics to respond:
- Distraction: If your loved one asks to see someone who has passed away, rather than remind them of their loved one’s passing, use distraction to shift their focus. For instance, you can distract your loved one by engaging him or her in an activity or changing the conversation to another subject.
- Bend the truth a little, if you have to: Rather than state that your loved one’s mother passed away years ago, you can simply say that their mother is unable to visit. When asked why, reassure your loved one that her mother is doing well.
- Therapeutic fibbing: In some cases, you may resort to compassionate deception after attempting distraction techniques and bending the truth, only for your loved one to persist in their request. Don’t feel guilty about resorting to therapeutic fibbing. Reassure yourself that using white lies to validate a loved one’s feelings and reassuring them is certainly not the same as lying for a malicious reason.
Barton Bernstein and Larissa MacFarquhar make compelling arguments about why you shouldn’t feel guilty about telling white lies to loved ones with more advanced stages of dementia. If you need to do so, hope it brings comfort to your loved one during a time when they may feel confused and agitated.
Planning for a Loved One with Dementia
Do you have a loved one who suffers from Alzheimer’s or another form of dementia? Persons with dementia and their families face special legal and financial needs. At the Farr Law Firm, we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones. At the Farr Law Firm, we help preserve a family’s hard-earned assets while also preserving comfort, dignity, and quality of life by ensuring eligibility for critical government benefits such as Medicaid and Veterans Aid and Attendance. If your family is facing a diagnosis of Alzheimer’s disease or any other type of dementia, please call us as soon as possible to make an appointment for an initial consultation:
About Evan H Farr, CELA, CAP
