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Episodes of lucidity (EL) in Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD), also termed “paradoxical lucidity,” have garnered increasing attention as an important area of research. Efforts to study lucidity suffer from a lack of clear definitional criteria, inconsistent conceptualization and diverse approaches to operationalizing features of these events. To advance systematic investigation of EL in AD/ADRD, there is a need for clarity and precision in labeling event attributes, markers, and specific measurement strategies that enable operational harmonization across distinct approaches to investigating the relatively broad and nascent phenomenon. To that end, we propose a preliminary research framework to guide harmonization of approaches to investigating EL in AD/ADRD. Our goal is to provide a systematized approach to characterizing operational decisions that facilitates comparability across different methodological approaches and measurement strategies while allowing for exploration of multiple definitional criteria, measurement standards, and interpretive approaches.

Episodes of lucidity (EL) among individuals with advanced dementia, which are predominantly reported near end of life, are clinically and potentially epidemiologically significant events. Audiovisual observation offers a valuable approach to studying EL, providing opportunities to characterize verbal/non-verbal features of EL as well as their surrounding contexts. Approaches to capturing and characterizing audiovisual data and potential verbal/non-verbal indicators of EL near end of life are lacking. We determined the acceptability and feasibility of a multi-faceted observational study protocol among people with advanced dementia near end of life incorporating longitudinal audiovisual observation, informant field interviews/logs, and case review of high likelihood EL events. Five eligible individuals were enrolled, yielding a 100% enrollment/retention rate, 54 observations/140 hours of observation across participants. Task load and usability ratings indicate study procedures with iterative refinements were feasible; surveys and qualitative appraisal from participants and staff endorse high rates of acceptability and feasibility.