Gaugler, Joseph E

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.

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 Research has established that unpaid family members, friends, or others who care for persons with dementia (ie, caregivers) may encounter socioemotional and physical health concerns as a consequence of providing extensive assistance. Similarly, caregivers for people living with traumatic brain injury (TBI) often experience a range of stressors and negative mental health outcomes due to care demands. Individuals with TBI often develop Alzheimer’s disease and Alzheimer’s disease-related dementia (AD/ADRD). This history of TBI may introduce complications to AD/ADRD caregiving. A comprehensive intervention grounded in the understanding of the complex caregiving context of both diagnoses is warranted to address the unique needs and concerns of TBI-AD/ADRD caregivers. Research Design and Methods This study evaluated the feasibility of the TBI-AD/ADRD Caregiver Support Intervention (TACSI) psychoeducational program, designed to support the unique subset of caregivers facing the challenge of assisting relatives with AD/ADRD and a history of TBI. TACSI, a 6-session telehealth intervention, provides tailored psychosocial and psychoeducational coaching. In partnership with the 2 national healthcare centers, 15 caregivers enrolled in the 3-month feasibility study evaluating the design and subsequent refinement of TACSI. Mixed methods data were collected from 3-month follow-up surveys and qualitative data from postintervention interviews. Results The feasibility, utility, and acceptance of TACSI were established. Caregivers liked the telehealth delivery and the personalized nature of TACSI, yet some expressed it would have been more beneficial earlier in their caregiving journey. Discussion and Implications Caregivers valued the TACSI program. Their feedback has been applied to improve TACSI content and delivery for a larger pilot randomized controlled trial that is currently underway.

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.

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.

There is a growing emphasis on delivering services for persons with early-stage dementia (ie, ‘‘persons with memory loss,’’ or PWMLs) and their family members (care partners). The goal of this evaluation was to determine whether participation in the Memory Club, a 10- to 13-session joint support group, would result in decreased distress, enhanced preparation for care, and improved feelings of confidence managing the challenges of early-stage dementia. The single group, pre-/post-test evaluation included 63 PWMLs and 61 care partners who participated in three Memory Club sites in Minnesota. Paired T-test results found that care partners reported significant (P < .05) increases in preparation activities, feelings of preparation, and confidence in managing memory loss. The results suggest that the Memory Club can fill an important gap in early-stage dementia care by offering care partners the opportunity to plan, prepare, and increase coping skills in the face of early dementia progression.