An observational study protocol to capture, validate and characterise lucid episodes in people living with advanced dementia receiving hospice care.

INTRODUCTION: Lucid episodes (LEs) in advanced neurodegenerative disease, characterised by a transient recovery of abilities, have been reported across neurological conditions, including Alzheimer's disease and related dementias. Evidence on LEs in dementia is extremely limited and draws predominantly from retrospective case reports. Lucidity in dementia has received growing attention given the clinical, caregiving and potential epidemiological implications of even a temporary return of abilities in advanced disease. Following a funding initiative by the National Institute on Aging, several new investigations are focused on establishing foundational evidence on lucidity in dementia. The objectives of this study are to capture, characterise and validate potential LEs via audiovisual observation, computational linguistic and timed-event coding of audiovisual data, and informant case review for face validation of LEs. METHODS AND ANALYSIS: This prospective multifaceted observational study will investigate LEs in advanced dementia through longitudinal audiovisual observation within an inpatient hospice unit. Audiovisual data will be coded to generate variables of participant verbal output, verbal expressions, non-verbal communicative actions and functional behaviours to enable measurement of features that can be used to characterise LEs. Multiple methods will be used to identify potential LEs including field interviews with caregivers/clinicians who witness significant events during data collection, reports from research staff who witness significant events during data collection and detection by researchers during video data processing procedures. Potential LEs will undergo a structured case review with informants familiar with the participant to facilitate validation and enable triangulation across measures generated through coding. ETHICS AND DISSEMINATION: This study will be conducted in accordance with all Federal Policies for the Protection of Human Subjects and the protocol (ID 2021-1243) has been approved by the University of Wisconsin-Madison Institutional Review Board. Findings will be disseminated via scientific conferences, journal publications and newsletters shared with participants and through dementia-focused and caregiver-focused networks.

Feasibility and Acceptability of a Multifaceted Observational Protocol to Investigate Lucidity in Advanced Dementia.

OBJECTIVE: Episodes of lucidity (ELs), characterized by spontaneous, transient recovery of abilities, are reported across neurological conditions, including advanced dementia. Despite the significance of these events, existing research is limited to retrospective reports. Approaches to prospectively capturing and characterizing ELs in dementia are lacking. METHODS: This pilot study determined the feasibility and acceptability of a multifaceted observational protocol to capture, characterize, and validate ELs in individuals with advanced dementia in hospice. Feasibility was measured through enrollment/retention rates, workload/usability assessment of video observation, and data processing procedures to facilitate the measurement of verbal and nonverbal features for EL characterization. The acceptability of observation and informant validation procedures was qualitatively examined with clinician and family caregiver participants. RESULTS: Study procedures were endorsed as highly acceptable among clinician (N = 49) and caregiver (N = 16) participants, demonstrating higher than anticipated thresholds for observation duration. Enrollment and retention rates for patient participants (N = 6) were 100% and 84%, respectively. Workload and usability measures demonstrated low disruptiveness and high ease of use after training. DISCUSSION: Longitudinal video observation among individuals with advanced dementia in hospice care for the detection of lucidity was feasible and highly acceptable. Multidimensional, temporal coding of features of ELs is feasible but time-intensive.

The Impact of Episodes of Lucidity on People Living With Dementia and Their Caregivers: A Case Report.

People living with dementia (PLWD) may experience the episodes of lucidity (ELs), defined as a sudden return of abilities presumed to have been lost and presenting as meaningful communication and connection. Early research on ELs in advanced disease stages suggests these are predominantly positive events. This case report draws from 1 outlier case from a descriptive qualitative study on caregivers of PLWDs' experiences with ELs. The caregiver-reported events perceived as an EL being accompanied with unexpected self-awareness, leading to a negative emotional reaction and feelings of loss. This case report contributes insights to the current understandings of ELs as exclusively relevant in advanced stages of dementia, as similar events may present in earlier disease stages, and may be associated with the negative emotional experiences among PLWD. Future research is needed to consider the ethical implications surrounding ELs and to support the caregivers in anticipating and responding to ELs.

"It's You": Caregiver and Clinician Perspectives on Lucidity in People Living With Dementia.

BACKGROUND AND OBJECTIVES: Episodes of lucidity (ELs), or a transient return of abilities believed to be lost in people living with dementia, are a growing area of interest. These events hold important implications for care, caregiving, and our understanding of underlying etiologies. Research on ELs is largely limited to retrospective reports. The perspectives of professional and family caregivers on ELs and research approaches can inform efforts to define and study lucidity. The present study examined family caregiver and hospice clinician experiences with and perspectives on ELs in people living with dementia and observational approaches to studying these events. RESEARCH DESIGN AND METHODS: This exploratory, descriptive qualitative study employed semistructured interviews (N = 20 caregivers, N = 6 clinicians). Data were analyzed using Rapid Identification of Themes and subsequent duplicate review of interview data to enhance trustworthiness. RESULTS: Most participants readily recalled events they perceived as ELs, describing a transient return of abilities they felt was significant and/or meaningful. Defining features, interpretations, and the perceived impact of ELs varied, although ELs were commonly conceptualized as a manifestation of self. Caregivers described extensive efforts to detect patterns and supportive social conditions for ELs. Participants supported use of audiovisual observation to study ELs and provided recommendations for privacy, workflow, and caregiver engagement. DISCUSSION AND IMPLICATIONS: Interpretations of ELs are heterogeneous, and recognition of these events may necessitate close familiarity with the person living with dementia. Participants endorse observational approaches and integration of caregivers in this research.