First Steps Toward Promoting Paradoxical Lucidity: Meaningful Engagement When Least Expected at the End of Life

Abstract

Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations.

This mixed-methods exploratory study provides an overview of witnessed events of paradoxical (unexpected) lucidity displayed by people with major cognitive decline who were often close to death. Fifty respondents shared their stories. Gaining an understanding of the antecedents of paradoxical lucidity, such as music or other sensory stimulation, could lead to interventions that promote these emotional and often meaningful events of re-engagement near the end of life.

Primary Author and Speaker: Regula H. Robnett

Additional Authors and Speakers: Thomas Meuser, Claire Michael

Contributing Authors: Mary Garside, Brandon Gibson

Lucidity is the normal cognitive state of most people most of the time. Lucid persons are alert, interactive, coherent, and rational. These states of consciousness support engagement in meaningful occupations. Certain diseases and disorders can rob people of their usual clarity, including Alzheimer's disease (AD), terminal senescence, and other neurocognitive disorders. The National Institute on Aging is targeting research funding for the study of paradoxical lucidity (PL), defined as ‘an episode of 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' (Mashour et al., 2019, p. 1107). Anecdotal stories depicting PL are common, but its etiology and mechanisms are poorly understood (Chiriboga-Oleszczak, 2017). The phenomenon of PL defies what we know about the science of the brain. The purpose of this IRB-approved, mixed-methods project was to ‘gather the stories' of witnessed episodes of PL, first to describe them in detail and then to begin to understand potential triggers and contextual supports of these often-surprising events. ‘Snowball' recruitment was employed to identify witnesses willing to share their experiences via an online survey and follow-up interviews.

RESULTS: Fifty volunteers completed the initial survey, and twelve were interviewed in-depth. Two-thirds of the respondents were female, as were those who displayed PL in their accounts. Most episodes occurred in family members diagnosed with dementia such as AD. Most had died within six months of the episode. Episode duration lasted ‘moments' (no more than a minute or two) up to 5+ hours, with most being under an hour. The following themes emerged from a grounded coding process targeting antecedents of witnessed PL: 1) trusted professionals (pastor, health provider) perhaps unknowingly saying or doing the right thing could trigger an episode of PL; 2) PL frequently took place in a sacred environment in which engagement in routine spiritual practices were common, and these drew the person in for the moment (e.g. saying the rosary and singing hymns); 3) music was often cited as having the ‘power to unlock all sorts of emotional and cognitive responses' (male witness, age 79); 4) the return of one's professional persona or familial/friend role emerged when it was needed; and 5) hearing a familiar voice in the moment could trigger a familiar greeting. Currently, other than sound (e.g., music, voices) no stories have included other sensory antecedents (e.g. smell, touch, visual stimuli). Most often, the episode of PL was reported to be ‘out of the blue' and a surprise. Data analysis is on-going.

CONCLUSION: Deeper understandings of PL events may drive the development of interventions to make them even more common. Might directed stimulation, perhaps through music, create conditions whereby partial or full lucidity could be restored? Van der Steen et al. (2018) in a metanalysis of 21 studies involving 890 people living with dementia found music to decrease symptoms of depression and anxiety, as well as to improve behavior and overall emotional well-being. Thus, a reasonable hypothesis is that music may also be a catalyst for PL. To consider that late stage dementia could be reversible for even a few minutes up to days, incites the imagination and implores clinicians to seek ways to promote PL (Eldadah et al., 2019).

IMPACT STATEMENT: This exploration of paradoxical lucidity offers information on a phenomenon about which we currently have little scientific understanding. Increasing our knowledge base may lead to the promotion of purposeful engagement even when hope for meaningful interaction has ceased.

References

Chiriboga-Oleszczak, B. A. (2017). Terminal lucidity. Current Problems of Psychiatry, 18(1), 34-46. https://doi.org/10.1515/cpp-2017-0003

Eldadah, B. A., Fazio, E. M., & McLinden, K. A. (2019). Lucidity in dementia: A perspective from the NIA. Alzheimer's & Dementia, 15(8), 1104-1106. https://doi.org/10.1016/j.jalz.2019.06.3915

Mashour, G. A., Frank, L., Batthyany, A., Kolanowski, A. M., Nahm, M., Schulman-Green, D., Greyson, B., Pakhomov, S., Karlawish, J., & Shah, R. C. (2019). Paradoxical lucidity: A potential paradigm shift for the neurobiology and treatment of severe dementias. Alzheimer's & Dementia, 15 (8), 1107-1114. https://doi.org/10.1016/j.jalz.2019.04.002

Van der Steen, J.T., Smaling, H.J.A., van der Wouden, J.C., Bruinsma, M.S., Scholten, R.J.P.M., & Vink, A.C. (2018). Music-based therapeutic interventions for people with dementia. Cochrane Database of Systematic Reviews, 7. Art. No.: CD003477. https://doi.org/10.1002/14651858.CD003477.pub4.