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.
8 December 2025 in Journal of the American Geriatrics Society
Introduction: Of the 6 million people living with dementia (PLWD) in the United States, half visit an emergency department (ED) annually. Little is known about the specific emergency care preferences and priorities of PLWD and their care partners. This descriptive qualitative study engaged PLWD and care partners to identify their ED care priorities and the factors that influence their overall evaluation of ED care. Methods: We recruited PLWD receiving care in a large academic ED and their care partners to participate in individual or dyadic interviews. Interviews were analyzed using thematic analysis and member checking interviews were completed to confirm and expand on study findings. Results: We conducted interviews with 55 participants ( N = 19 PLWD, 24 care partners, 6 dyads). PLWD and care partners evaluated ED care experiences through a summative lens shaped by: (1) universal priorities common across all participants and (2) individual values that varied in importance and quality between individuals. Universal priorities included feeling respected, clear communication, and being informed about and involved in their emergency care decisions. Individual values included preferences around the who and how of decision‐making, attention to cognitive health, and degree of escalation of care. Several contextual factors shaped the appraisal of ED visits including the timing of evaluation and nature of the precipitating event (acute/unknown cause vs. chronic/known or suspected cause). Conclusion: Findings suggest that interpersonal interactions, including being informed about care and involved in decisions, strongly influence the evaluation of ED visits for PLWD. These findings can support the development of person‐centered outcome measures capable of evaluating these priorities.
Background: Alzheimer’s disease and related dementias (ADRD) are progressive neurodegenerative diseases believed to cause irreversible cognitive and functional losses. Episodes of lucidity (ELs) are described broadly as spontaneous and unexpected return of abilities believed to have been lost in individuals living with advanced ADRD.1 These events have been qualitatively identified by caregivers and healthcare staff but have yet to be quantitatively described.1 This study aimed to measure potential quantitative verbal/nonverbal indicators of ELs in individuals living with advanced ADRD.Method: Five participants living with advanced ADRD in a regional hospice unit were enrolled, from which 281 hours of audiovisual data were collected. A behavioral coding scheme captured potential verbal/nonverbal indicators that may characterize lucid events. Indicators were coded (timed‐events) independently by two coders using Observer XT. Descriptive statistics for verbal/nonverbal indicators of ELs included: indicator frequency, rate, duration, and proportion. Additionally, we compared descriptive statistics for verbal/nonverbal indicators in high‐likelihood ELs identified by the research team, caregivers, or hospice staff to verbal/nonverbal indicators in the participant’s baseline typical behavior with similar stimuli.Result: Ten potential ELs were identified by the research team, with three of these episodes endorsed by caregivers and hospice staff. For endorsed ELs, the average proportion and duration of all coded indicators was greater than that of their respective comparators, except for three nonverbal indicators (shakes head, manipulates object, directed attention). The average rate and frequency of all coded indicators was greater than that of their respective comparators, except for two nonverbal indicators (shakes head, directed attention).Conclusion: Our preliminary analyses found that a comparative analysis approach to characterizing ELs provides an opportunity to identify substantial variability of potential ELs from individual baseline. While verbal/nonverbal indicators were generally more frequent/intense during ELs, this was not always true. Given the current lack of a formal definition for ELs, efforts to identify and characterize the content of ELs benefit from triangulation across event indicators with qualitative data collected from informants. References:[1] Mashour GA, Frank L, Batthyany A, et al. Paradoxical lucidity: A potential paradigm shift for the neurobiology and treatment of severe dementias. Alzheimers Dement. 2019;15(8):1107‐1114. https://doi.org/10.1016/j.jalz.2019.04.002
Background: Recruiting care partners (CPs) of hospitalized people living with dementia is challenging due to rapid discharge timelines and complex inpatient workflows. This study identified barriers to CP recruitment encountered during the first year of a hospital-based randomized controlled trial and the strategies implemented in response to them. Methods: A qualitative descriptive study using thematic analysis of twelve study coordination and implementation meeting transcripts was conducted. Recruitment outcomes were examined to assess changes before and after implementation of the enhanced recruitment workflow. Results: Eight recruitment barriers were identified, including fragmented electronic health record (EHR) documentation, uncertainty in CP presence, limited clinician availability, passive study promotion, and inefficient clinical–research team collaboration. Nine strategies were developed and implemented in response to these barriers. The enhanced recruitment workflow was temporally associated with an increase in average monthly enrollment from 0.25 participants (April–July 2024) to 4 participants (August 2024–December 2025). Over the same periods, the cumulative enrollment rate was 3% and 23%, respectively. Conclusions: Care partner recruitment in inpatient settings is highly context-dependent and requires iterative, implementation-informed adaptation. Effective recruitment may be supported by embedding processes into routine inpatient workflows, clarifying recruitment roles, leveraging EHR-supported identification, and maintaining close clinical–research team collaboration to respond to the unpredictable presence of care partners and short discharge windows.