Lucidity for Persons Living with Advanced Dementia, from the Perspective of Caregivers

I've been working on an article examining lucidity in persons diagnosed as having some form of dementia.  My analysis has been largely focusing on the implications of lucid intervals for attorneys, including those involved in advising on estate planning and care-related needs.  This has helped me to tap into other ways of thinking about lucidity and most recently I read an article in The Gerontologist, titled "Caregiver Accounts of Lucid Episodes in Persons with Advanced Dementia," published in June 2024, by a research team lead by Jason Karlawish, M.D. at the University of Pennsylvania.  

The article begins with careful look at definitions used in a research study that relied in major part on telephone interviews with caregivers.  For example, threshold questions for the caregivers were whether they had observed or were aware of "any unusually lucid moments" during the most recent four months (or during the final for months of a person's life if they were no longer alive). This approach was to isolate a concept known to the researchers as "paradoxical lucidity."  The working definition for paradoxical lucidity, from a 2019 National Institute on Aging Study, was "unexpected, spontaneous, meaningful, and relevant communication or connectedness in a patient who is assumed to have permanently lost the capacity for coherent verbal or behavioral interaction due to a progressive and pathophysiologic dementing process."  Eventually the study focused on 30 caregivers (and a corresponding 29 individuals with advanced dementia).  All of the final participants were "family caregivers."

There is a lot to unpack in the findings.  Although the length of the lucid moments for a given individual were usually very short -- and the longest was just 45 minutes -- the incidence of such moments across the study population was  frequent.  The findings combined with other empirical studies, lead the researchers to "question the 'paradoxical' in 'paradoxical lucidity.' Here, 'paradoxical' denotes an observation that is inconsistent with disease theory."  The researchers suggested there may be a need to "modify the theory of disease" for "severe-stage dementia."  

The study's caregiver-participants uniformly reported that "witnessing a lucid episode did not influence decisions about medical care."  However, these researchers "found that lucid episodes affected approaches to daily care, shaping, for example how often they brought the person living with dementia into social situations, diet, and sleep schedules."  The article continued:

"Such changes are substantive and important but not framed by caregivers as critical decisions  They are alterations in what might be called the 'ordinary ethics' [citation] of caregiving, evincing shifted understandings of what constitute good care."  

Certainly this study is not being used to talk about legal implications of lucid moments.  That is important too.