Finnie, Dawn M.

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.

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.

Chronic pain is common with aging. Yet, little is known about the attitudes, beliefs, and experiences of older adults with chronic pain regarding opioids, particularly in regard to effects on daily functioning and cognition. This qualitative analysis employed semi-structured interviews in 25 community-dwelling older adults with chronic pain and current or recent prescription opioid use. Interviews focused on perceptions, beliefs, and experiences of living with chronic pain, use of prescription opioids, and the impact of opioids on pain control, cognition, and daily function. Older adults display adaptability and acceptance in living with chronic pain, desire person-centered pain care, approach the risks-benefits of opioids with regards to cognition differently, and perceive stigma as a barrier to effective partnership with clinicians.

Objective Patients with heart failure (HF) perform a variety of self-care activities to control symptoms and minimise the risk of HF decompensations. The objective of this study was to understand how patients build capacity and manage the work of living with HF. Design A qualitative study using semi-structured telephone interviews. The interview guide was informed by the Cumulative Complexity Model, a conceptual framework that focuses on a patient’s workload and their capacity to manage that work. Interview transcripts were analysed using a mixed inductive and deductive coding approach with organisation into larger thematic categories. Setting Southeastern Minnesota USA (11 counties) with capture of data from local community healthcare providers under the auspices of the Rochester Epidemiology Project. Participants Intentional sampling of local patients with HF (n=24, median age 69.5 years, 54% women, 63% rural, 54% preserved ejection fraction) who reported high treatment burden and/ or poor health status on a questionnaire. Results Three major themes emerged: using capacity to manage workload, disruptions resulting in workload exceeding capacity and regaining workload-capacity balance. Participants described routinising the daily tasks associated with living with HF to minimise the associated burden and identified disruptions to their routines, including hospitalisations, emergency room visits, worsening health status and changes in healthcare access. To accommodate disruptions and regain workload-capacity balance, participants decreased workload and/or transferred tasks to others to maximise capacity. Conclusions Participants with HF described managing patient workload in times of stable health, but they sometimes struggled to accommodate disruptions and worsening health status. These findings can inform the design of interventions to minimise workload, maximise capacity and improve quality of life for patients with HF.

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.

Introduction Advancements in vascularized composite allotransplantation have made hand transplants possible for persons living with upper limb loss. Hand transplantation is not a life-saving procedure, but rather a quality-of-life enhancing procedure; hence the risk of morbidity and mortality must be weighed against improvements in function and appearance. This study explored the decision-making process of patients evaluated for hand transplantation. Methods/Approach A qualitative case series study using retrospective chart data of evaluations was conducted between January 1, 2011 and February 28, 2020. Notes were extracted and read by three reviewers. Each case was summarized noting similarities and differences. Findings Nine patients underwent evaluation. Eight were no longer under evaluation and did not receive transplant; one was still undergoing evaluation. Patient motivations for evaluation were dissatisfaction with prostheses or self-image, chronic pain, performing activities of daily living, occupation, burden placed on caregivers, and concerns about overuse of non-affected limbs. Patients chose not to pursue transplantation due to rehabilitation time, immunosuppression, alternative treatments, and social and financial challenges. The clinical team discontinued evaluations due to unmet evaluation requirements, medical contraindications, or treatment alternatives. Different modes of shared decision-making were present depending on the party most heavily featured in the charts as driving decisions. Discussion This was an examination of shared decision-making with hand transplant candidates who did not proceed to transplant. Reasons for choosing alternative strategies for management were multifactorial. Lessons learned regarding patient motivations and shared decision-making can inform future interventions to better support patients.

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.