Finnie, Dawne

Abstract Lucid episodes (LE) occur in people living with dementia who have seemingly lost cognitive capacity. Understanding LEs is a relatively new area of scientific inquiry. Most LE studies have utilized different conceptual and operational definitions. Reaching a definition of LE is critical foundation to facilitate more systematic investigation and new knowledge of LEs. The goal of this study was to convene a group of 13 clinical experts to brainstorm on the key components needed to understand LE among people living with dementia (PLWD). We aimed to reach consensus from the group on (1) potential medical or clinical explanations for LEs; (2) necessary medical and clinical questions to understand LE; (3) interpretation of the presence of LE. Thirteen experts from different disciplines (neurology, psychiatry, psychology, pharmacy, palliative care, hospice, nursing, social work, primary care, geriatrics, and professional home caregivers) participated in a virtual Delphi Method study. Experts provided a range of opinions on potential medical and clinical explanations for LE, necessary questions to understand LE, and did not reach consensus on the presence of LE when presented with clinical vignettes. Panelists highlighted key medical and contextual factors as well as a need to know more information about the general demeanor and typical behavior of the PLWD to make a definitive judgement about whether LE occurred. Clinical consensus on LEs is complex. There is great variability in how behaviors and cognitive fluctuations in PLWD are appraised by clinical experts.

Abstract Lucid episodes (LE) in people living with late-stages of dementia (PLWD) have been reported anecdotally, but less is known about how this seemingly unexpected phenomenon is experienced by family members. This study aims to examine variability in family caregivers’ experiences with LE, focusing on the two most common groups of informal caregivers, spouses and children—whether they may exhibit differential appraisals of and responses to LEs. Using a sample of former and current family caregivers from UsAgainstAlzheimer’s A-LIST, we conducted an online survey to spouse and child caregivers (N = 387). Qualitative semi-structured interviews were also conducted with a subset of these caregivers who have witnessed an LE (n = 22). Survey results indicate that child caregivers were more likely to witness a LE. Among “former” caregivers who have witnessed a LE (n = 140), spouses were likely to appraise LEs more negatively and make changes in care decisions (i.e., end-of-life planning and financial decisions) after LE, compared to child caregivers. Among “current” caregivers who have witnessed a LE (n = 80), spouses were more likely to indicate no special circumstances prior to LE, whereas children were more likely to indicate LEs associated with visits from friends and family; there was no difference in positive and negative appraisals of LE between current spouse and child caregivers. Content analysis of qualitative interviews revealed that observed differences between spouses and children were related to their different caregiving contexts, such as relationship history, living arrangement, expectations/motivation, and care resources.

Abstract People with late-stage Alzheimer’s disease and related dementias (ADRD) who are assumed to have lost coherent cognitive capacity may exhibit unexpected episodes of lucidity (EL). Given the transient nature and lack of scientific explanation of the phenomenon, EL is under-investigated and poorly understood. To better understand this phenomenon, we set out to develop an operational definition of EL. Based on survey data from former and current family caregivers participating in UsAgainstAlzheimer’s A-LIST® (N = 480), we defined four EL typologies. We then interviewed 25 caregiver respondents about their experiences and used analyzed qualitative data to refine the preliminary typologies. Finally, we conducted a Delphi consensus panel with clinicians, researchers, and health care providers with medical, pharmacological, and clinical expertise to describe potential explanations for EL to help further refine the typologies. Next we will test the validity of these typologies in a prospective, demographically diverse sample of current family caregivers.