Bangerter, Lauren R.

Purpose of Research Lucidity is the transient recovery of abilities and communication that were seemingly lost among people living with dementia (PLWD). This study describes lucid episodes reported by Alzheimer’s dementia (AD) and Lewy Body Dementias (LBD) caregivers. We analyzed survey data from 212 current AD ( n = 191) and LBD caregivers who reported the frequency, duration, and characteristics of 653 lucid episodes witnessed in the past month. Major Findings Most AD caregivers (67%) and LBD caregivers (81%) witnessed a lucid episode within the past month. LBD caregivers reported lucid episodes with greater changes in awareness and communication, compared to AD caregivers. LBD caregivers reported longer lucid episodes and that the PLWD knew about their change in lucidity, compared to AD caregivers. Conclusions Findings suggest that differences in lucid episode intensity, timing, and meta-awareness between AD and LBD are possible and may inform care strategies for PLWD.

Abstract Background and Objectives Lucid episodes (LEs) in advanced dementia are characterized by spontaneous, transient recovery of functional abilities. Despite recent increases in research on this previously understudied phenomenon, standard definitional criteria are lacking, presenting challenges for research. Researchers have proposed a preliminary framework to guide uniform labeling and operationalization of salient data elements for investigating LEs and developing definitional criteria. This study leverages this framework to characterize reports of LEs from caregivers and advance their definition and measurement. Research Design and Methods Family caregivers (N = 259) completed an electronic survey with quantitative and open-ended questions about LEs they witnessed (N = 479 episodes). Respondents were purposively sampled for qualitative interviews. Open-ended question responses (n = 208) and in-depth interviews (n = 24) were analyzed using content analysis. Results Caregiver descriptions suggest that the content and context of LEs are heterogeneous. Descriptions included observable changes from baseline, with behavior or communication that was distinguishable from routine cognitive fluctuations. LEs were sometimes, but not always specified by logically organized actions; recognition or awareness of people, emotions, and surroundings; and insight of their cognitive limitations. Many LEs required deep personal knowledge to attribute it as a meaningful shift. Discussion and Implications Findings suggest that definitional features may universally specify a significant return of ability with more flexible criteria for how this return manifests in observed actions and domains of recovery (i.e., insight, function, and communication). The impact of LEs on observers may be better measured separately, although further research should explore this.

Abstract BACKGROUND Some persons with late‐stage Alzheimer's disease and related dementias (ADRD) and seemingly very minimal cognitive abilities have transient episodes of unexpected, spontaneous, meaningful, and relevant communication or behavior. This phenomenon, referred to as lucidity, is not well understood, although it is frequently observed by family caregivers. METHODS An exploratory study using 24 qualitative interviews and 140 open‐ended response data documented family caregiver perspectives and experiences with lucid episodes during late‐stage ADRD. RESULTS Caregivers detailed their experiences witnessing a lucid episode and the resulting impacts. Caregivers revealed reasons they felt positive or upset about the lucid episode, discussed changes the lucid episode prompted, and shared the range of emotions they experienced. IMPLICATIONS Lucid episodes have a significant, enduring, and not always positive impact on caregivers. To better navigate and face sequelae associated with lucid episodes, caregivers should receive psychoeducation or consultation to help increase their understanding, set expectations, and cope with changes. Highlights Little is known about lucid episodes in late‐stage dementia and even less is known about how dementia family caregivers react to and are impacted by these episodes. Qualitative interviews can garner rich data on dementia family caregiving experiences with understudied phenomena such as lucidity. Lucid episodes have a varying but marked and long‐lasting impact on dementia family caregivers. The dementia care field must explore strategies for enhancing education and support to caregivers to build awareness and shape expectations of lucid episodes, a complex experience.

Introduction Alzheimer’s disease and related dementias (ADRD) are conditions with progressive cognitive decline. Still, people living with late-stage ADRD (PLWD) have been reported to exhibit transient recovery of communication or behavioural abilities that had seemingly been lost. These lucid episodes (LEs) are underinvestigated and poorly understood. This study aims to advance scientific understanding of the incidence, prevalence and predictors of LEs and assess from family caregivers if LEs are associated with changes they make in care planning or experiences with burden, distress or grief. Methods This study recruited 545 caregivers from five ADRD-related registries in the USA. Eligibility included caregivers over 18 years who currently provide care to someone with moderate to very severe ADRD and can complete online questionnaires. Using a longitudinal observational study design, consented caregivers will be assessed monthly for 1 year using online questionnaires that inquire about witnessing LEs. If witnessed, the context and content of the LE is reported. Changes in caregiver decision-making about care for the PLWD, and caregiver burden, distress and grief are assessed at baseline, 6 and 12 months. Analysis Analysis of baseline data will assess descriptive aspects of LEs that are currently unknown (eg, prevalence, content, antecedents, duration). Longitudinal analysis will examine the incidence of LEs, characteristics of PLWD and caregivers that are predictors of episodes, and the associations between LEs and caregiver outcomes (eg, burden, distress, grief). Ethics and dissemination This study is being conducted in accordance with all Federal Policies for the Protection of Human Subjects. The protocol has been approved by the Mayo Clinic Institutional Review Board (ID 22-006861). Findings will be presented at scientific conferences and disseminated through journal publications and outreach efforts with collaborating partners invested in brain health and caregiver support.

Abstract Background and Objectives Lucid episodes (LEs) in people living with late-stage dementia have been reported anecdotally. However, how this seemingly unexpected phenomenon is experienced by family caregivers is less known. Focusing on the two most common groups of informal caregivers, spouses and adult children, this study examined variability in family caregivers’ experiences with LEs—whether they exhibit differential appraisals of and responses to LEs. Research Design and Methods Using a sample of former/bereaved and current family caregivers from UsAgainstAlzheimer’s A-LIST, we conducted an online survey of spouse and child caregivers (N = 387). We conducted semistructured interviews among a subset of caregivers who witnessed a LE (n = 22). Results Overall, child caregivers were more likely to witness a LE than spouse caregivers. Among former/bereaved caregivers who witnessed a LE (n = 139), spouses were likely to report nonverbal communication during LEs, appraise LEs more negatively, and make changes in care decisions, such as end-of-life planning and financial decisions, compared to adult children. Among current caregivers who witnessed a LE (n = 80), spouses often reported no special circumstances preceding LEs, whereas children linked LEs to friend/family visits. No significant differences were found in positive and negative appraisals of LEs between current spouse and child caregivers. Content analysis of qualitative interviews revealed the contexts underlying these differences. Discussion and Implications Differences between spouses and adult children in their experiences with LEs are related to their different caregiving contexts, including relationship history, living arrangements, expectations, motivations, and caregiving resources.

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.

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 More than 6 million adults in the United States are affected by Alzheimer’s Disease and related dementias (ADRD), the majority of whom rely on assistance from an unpaid caregiver (family, friends). The goal of the 2021 Conference on Engaging Family and Other Unpaid Caregivers of Persons with Dementia in Healthcare Delivery, funded by the National Institute on Aging, was to establish a policy- and practice-aligned research agenda for enhancing ADRD caregiver engagement and support in healthcare settings. The Conference convened multidisciplinary thought leaders from across the United States to establish a set of actionable recommendations to advance the field. Recommendations centered on five key topics: 1) Identification and assessment of ADRD caregivers, 2) Reimbursement and financing for provider time spent on ADRD caregiver, identification, assessment, and support, 3) ADRD caregiver training and support, 4) Healthcare provider education, and 5) Technology. To support future work in each of the five priority areas, conference participants highlighted the importance of leveraging lessons from implementation science and models of equity and inclusion. Recommendations are intended to inform federal agencies and foundations about high-priority areas and motivate multidisciplinary collaborations to design care delivery systems that effectively engage and support ADRD caregivers.