Feasibility and Acceptability of a Multifaceted Observational Protocol to Investigate Lucidity in Advanced Dementia

Episodes of lucidity (ELs), characterized by spontaneous, transient recovery of abilities, are reported across neurological conditions, including advanced dementia. Despite the significance of these events, existing research is limited to retrospective reports. Approaches to prospectively capturing and characterizing ELs in dementia are lacking.

This pilot study determined the feasibility and acceptability of a multifaceted observational protocol to capture, characterize, and validate ELs in individuals with advanced dementia in hospice. Feasibility was measured through enrollment/retention rates, workload/usability assessment of video observation, and data processing procedures to facilitate the measurement of verbal and nonverbal features for EL characterization. The acceptability of observation and informant validation procedures was qualitatively examined with clinician and family caregiver participants.

Study procedures were endorsed as highly acceptable among clinician (N = 49) and caregiver (N = 16) participants, demonstrating higher than anticipated thresholds for observation duration. Enrollment and retention rates for patient participants (N = 6) were 100% and 84%, respectively. Workload and usability measures demonstrated low disruptiveness and high ease of use after training.

Longitudinal video observation among individuals with advanced dementia in hospice care for the detection of lucidity was feasible and highly acceptable. Multidimensional, temporal coding of features of ELs is feasible but time-intensive.