Liu, Yin

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.

Abstract Purpose of the Study Middle-aged adults are often called upon to support aging parents. However, providing support to an aging parent with health problems and disability may be a stressful experience. This study asked whether giving everyday support to parents in the context of health problems and disability has implications for middle-aged children’s diurnal cortisol and daily mood. Design and Methods During four consecutive days, 148 middle-aged adults (mean age = 55) reported the support they gave to their parents and provided saliva 4 times a day (wake, 30 min post-wake, lunchtime, and bedtime). Multilevel models estimated within-person differences in positive affect (PA) and negative affect (NA), cortisol awakening response and area under the curve with respect to ground (AUC-G) as a function of giving same-day and previous-day support. We examined whether these associations are exacerbated when a parent has health problems or activities of daily living (ADL) needs. Results Middle-aged children had significantly higher next-day AUC-G on days after they gave support to parents with ADL needs. When participants gave support to parents with ADL needs, they had significantly greater same-day PA and lower next-day NA. Giving support to parents with health problems was associated with significantly higher next-day NA. Implications Giving support to parents is an ambiguous experience with implications for biological stress and daily mood. A biopsychosocial approach reveals under what conditions giving support to parents may become detrimental to health and well-being; this knowledge is essential for the development and implementation of interventions.