The lucidity in dementia experience: perspectives from family and professional caregivers.

BACKGROUND: Family and professional caregivers of individuals with dementia often witness care-receiver's lucidity events. OBJECTIVE: A qualitative data analysis was performed of documented family and professional caregivers' experiences and their respective appraisals of lucidity events. RESEARCH DESIGN AND METHODS: Using a reduction method of selection, data from 10 in-home family caregivers and 20 professional caregivers to long-term care residents was content-coded and analysed. Framed by a priori research questions, a summative approach to qualitative content analysis guided the interpretation of findings. RESULTS: Eight of 10 family- and 15 of 20 staff caregivers gave an example of what they believed was a witnessed lucid event; 88% of family- and 40% of staff caregivers' provided examples that appeared to fit the conceptual definition of lucidity. The emotional impact that the events had on both sets of caregivers was reported. Family caregivers' characterization of lucidity events reflected appraisals of a puzzling occurrence while staff caregivers depicted elements associated with dementia, and lucidity descriptors. The enhanced verbal communication followed by the brief, unexpected quality of lucidity, were the main elements highlighted by both sets of caregivers in their description of lucidity to others. The variability and complexity of the lucidity phenomenon and the potential challenges it poses for both sets of caregivers were characterized. Commonalities and divergences across responses were highlighted. DISCUSSION: Findings validated previous studies' results. The notions introduced by both types of caregivers were thought-provoking and borne practical, clinical, ethical, and assessment (measurement) applicability.

Unexpected lucidity in dementia: application of qualitative methods to develop an informant-reported lucidity measure.

OBJECTIVES: Unexpected lucidity is a phenomenon of scientific, clinical, and psychological relevance to health professionals, to those who experience it, and their relatives. This paper describes qualitative methods used to develop an informant-based measure of lucidity episodes. METHODS: The approach was refinement of the operationalization of the construct; review of seminal items, modification, and purification; and confirmation of the feasibility of reporting methodology. Modified focus groups were conducted with 20 staff and 10 family members using a web-based survey. Themes included reaction when hearing the term; words that come to mind; description of and first reaction to referenced or observed 'lucidity' events. Semi-structured cognitive interviews were conducted with 10 health professionals working with older adults with cognitive impairment. Data were extracted from Qualtrics or Microsoft 365 Word® for analysis using NVivo. RESULTS: Conceptual issues, as well as issues regarding comprehension, interpretation, clarity, semantics, and standardization of definitions derived from an external advisory board, focus groups and cognitive interviews informed items' modification, and resulted in the final lucidity measure. CONCLUSIONS: An obstacle to understanding the mechanisms and estimating the prevalence of lucid events among individuals with dementia and other neurological conditions is the scarcity of reliable and valid measures. The substantive and varied data gathered from multiple methods including the collaborative work of an External Advisory Board, modified focus groups with staff and family caregivers, and structured cognitive interviews with health professionals were central in creating the revised version of the lucidity measure.