By conducting in-depth interviews with family caregivers of people with severe dementia, researchers have documented how many of those caregivers witnessed paradoxical lucidity, an unexpected return of mental clarity in individuals with long-standing dementia or other neuropsychiatric conditions. The findings, published in The Gerontologist, have implications for how researchers interpret the concept of lucidity.
For this study, a team lead by researchers at the University of Pennsylvania sought to build on previous work examining the quantifiable aspects of lucid episodes, such as frequency, duration, and proximity to death. The goal was to better define and describe episodes of lucidity, given the pervasiveness seen in previous research.
The team recruited 30 family caregivers for 29 individuals living with dementia. The study’s research coordinator conducted telephone interviews between November 2021 and February 2022 with the caregivers, which included spouses, children, or siblings. The approximately 30-minute interviews included five sections of open-ended questions as well as scripted and spontaneous follow-up probes. The various sections were designed to help understand the nature and significance of any lucid episodes, for caregivers to describe any unusual behaviors, and for the caregivers to reflect on the nature of the mind during dementia.
Among the 30 caregiver participant interviews, 25 included descriptions of a total of 34 lucid episodes. The family members often called the lucid episodes a small, positive “blip” in an otherwise negative downward journey with their loved one. An episode tended to be the mentioning of a single word, a gesture, or a facial expression that gave the caregiver a sense the individual’s mind was momentarily back to normal. In one case, this happened when a woman sometimes briefly patted her caregiving husband’s back. In another, a mother was able to make a salty joke with her caregiving daughter.
Twenty-one of the 34 lucid episodes lasted only a matter of seconds. The other 13 were reported to be a few minutes consisting of a conversation, series of utterances, or possible increased alertness or engagement. The longest reported episode lasted an estimated 45 minutes. In this case, the caregiver described the person living with dementia asking for and having a cigarette and beer, singing songs with the caregiver and friends, and talking with them before going to bed. The next morning, he died.
Paradoxical lucidity is sometimes called “terminal lucidity” because it seems to occur at the end of life. In this study, all eight of the caregivers whose family members had already died reported a lucid episode, but it was difficult for them to describe when it happened in relation to death. Four of those eight caregivers described the episodes happening several months before death; the other four within a few days or weeks.
Among all participants, most caregivers reacted positively to the lucid episode. However, consistent with previous research, this study showed that caregivers did not typically discuss episodes of lucidity with health care professionals because they were unsure if the information would be useful. The researchers noted that for many caregivers, the lucid episodes affected their day-to-day approaches to care and helped justify ongoing care efforts, suggesting that clinicians should be encouraged to solicit whether caregivers have witnessed such events.
Because the participants described a wide range of unusual verbal and nonverbal behaviors, the authors recommend researchers define the concept of lucidity broadly, as well as consider the way it is referenced. For example, the researchers questioned whether the word “paradoxical” is necessary since it appears lucid episodes are occurring in most people with severe dementia.
Future research of this kind could reap benefits such as improved understanding of the neurobiology of dementia and a more nuanced concept of the minds of people living with dementia, especially those with severe dementia.
This research was supported in part by NIA grants R21AG069805 and P30AG072979.
These activities relate to NIH’s AD+ADRD Research Implementation Milestone 13.O, Care & Caregiving: Care integration.
Reference: Karlawish J, et al. Caregiver accounts of lucid episodes in persons with advanced dementia. Gerontologist. 2024. Epub June 1. doi: 10.1093/geront/gnad170.