Biggar, Virginia

Purpose: Lucid episodes (LEs: unexpected episodes of spontaneous, meaningful, and relevant communication or behavior) in Alzheimer disease and related dementias are a new area of scientific inquiry that lacks clinical consensus and require more conceptual attention. Methods: We aimed to measure consensus from an expert group on: (1) potential medical or clinical explanations for LEs; (2) necessary medical and clinical context to LEs; and (3) interpretation of LEs. Patients: We convened 13 experts from different disciplines (neurology, psychiatry, psychology, pharmacy, palliative care, hospice, nursing, social work, primary care, geriatrics, and professional home caregivers) to identify elements of LEs. Results: Experts provided a range of opinions on medical and clinical explanations and questions to understand LEs. Consensus on LEs when presented with clinical vignettes was not reached. Panelists highlighted key medical and contextual factors needed to make a definitive judgement about LEs. Conclusion: There is variability in how LEs are interpreted by clinical experts, which complicates the identification of LEs in Alzheimer disease and related dementias.

AbstractINTRODUCTIONThis study examined lucid episodes among people living with late‐stage Alzheimer's disease and related dementias (PLWD) and then developed a typology of these episodes to help characterize them.METHODSFamily caregivers of PLWD provided information about witnessed episodes, including proximity to death, cognitive status, duration, communication quality, and circumstances prior to lucid episodes on up to two episodes (caregiver N = 151; episode N = 279). Latent class analysis was used to classify and characterize empirically distinct clusters of lucid episodes.RESULTSFour lucid episode types were identified. The most common type occurred during visits with family and among PLWD who lived > 6 months after the episode. The least common type coincided with family visits and occurred within 7 days of the PLWD's death.DISCUSSIONFindings suggest that multiple types of lucid episodes exist; not all signal impending death; and some, but not all, are precipitated by external stimuli.

AbstractBackgroundParadoxical lucidity is characterized by spontaneous mental clarity with verbal or non‐verbal communication or behavior among people with AD who had previously been thought to lack the cognitive capacity to do so. With a paucity of data available, family caregivers (FCGs) provide critical perspectives on characteristics of these episodes of lucidity (EL).MethodTwenty‐four FCGs who witnessed at least one EL were interviewed about the experience. Qualitative data were transcribed, double coded, and analyzed to help characterize ELs.ResultFCGs described ELs as indelible moments, possibly triggered by music, food, holidays, or impending death. The spontaneity of the EL, its duration, the connectedness with FCGs, and coherence of communication varied. Instead of seeing them as cognitive fluctuations, FCGs often assigned metaphysical meaning to ELs.ConclusionFCG descriptions of ELs had few common patterns, suggestions they are heterogenous. Their impact on FCGs, however, was enduring.

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.

AbstractIntroductionLittle is known about how family caregivers who witness unexpected and spontaneous communication among people in late stages of Alzheimer's disease and related dementias (ADRD) appraise these episodes of lucidity (EL).MethodsIn an electronic, cross‐sectional survey for former and current caregivers who participate in UsAgainstAlzheimer's A‐LIST®, participants who reported witnessing an EL were asked how positive and stressful ELs were, if they made or changed decisions based on an EL, and what resources they sought out to explain ELs.ResultsCaregivers reported 72% of ELs to be quite a bit or very positive, 17% to be stressful, and 10% to be both stressful and positive. Twelve percent of caregivers changed care plans because of ELs and 13% sought out information about ELs.DiscussionThese exploratory data suggest caregiver reactions to EL vary. Caregivers may change or postpone care decisions due to EL, and few resources exist to address caregiver queries about EL.

Abstract To develop an operational definition of and typologies for episodes of lucidity (EL), we conducted a cross-sectional study of former/current family caregivers from UsAgainstAlzheimer’s A_LIST (N = 538). More than 60% of caregivers (n = 294, 62%) reported witnessing EL with their care recipient over the course of their dementia. Most episodes happened in late stages of dementia (71%). Only 10% happened within 7 days before death. The majority of episodes (71%) lasted <30 minutes. About half the episodes were characterized by uncharacteristic speech and communication. Caregivers perceived these experiences positively (M = 4.10; range = 1–5), but also expressed desire to know why/when EL occurs and how to best respond to it. Data will be used to refine definitions and typologies, and then a prospective, demographically diverse survey will be administered to family caregivers to assess predictors of EL, linking EL to caregiver well-being and bereavement response.

Family caregiver engagement in clinical encounters can promote relationship-centered care and optimize outcomes for people with Alzheimer’s disease and related dementias (ADRD). Little is known, however, about effective ways for health care providers to engage family caregivers in clinical appointments to provide the highest quality care. We describe what caregivers of people with ADRD and people with mild cognitive impairment (MCI) consider potential best practices for engaging caregivers as partners in clinical appointments. Seven online focus groups were convened. Three groups included spousal caregivers ( n = 42), three included non-spousal caregivers ( n = 36), and one included people with MCI ( n = 15). Seven potential best practices were identified, including the following: “acknowledge caregivers’ role and assess unmet needs and capacity to care” and “communicate directly with person with ADRD yet provide opportunities for caregivers to have separate interactions with providers.” Participants outlined concrete steps for providers and health care systems to improve care delivery quality for people with ADRD.