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.

Experiences of in-hospital care among dementia caregivers in the context of high neighborhood-level disadvantage.

BACKGROUND: Persons living with dementia (PLWD) experience high rates of hospitalization and rehospitalization, exposing them to added risk for adverse outcomes including delirium, hastened cognitive decline, and death. Hospitalizations can also increase family caregiver strain. Despite disparities in care quality surrounding hospitalizations for PLWD, and evidence suggesting that exposure to neighborhood-level disadvantage increases these inequities, experiences with hospitalization among PLWD and family caregivers exposed to greater levels of neighborhood disadvantage are poorly understood. This study examined family caregiver perspectives and experiences of hospitalizations among PLWD in the context of high neighborhood-level disadvantage. METHODS: We analyzed data from the Stakeholders Understanding of Prevention Protection and Opportunities to Reduce HospiTalizations (SUPPORT) study, an in-depth, multisite qualitative study examining hospitalization and rehospitalization of PLWD in the context of high neighborhood disadvantage, to identify caregiver perspectives and experiences of in-hospital care. Data were analyzed using rapid identification of themes; duplicate transcript review was used to enhance rigor. RESULTS: Data from N = 54 individuals (47 individual interviews, 2 focus groups with 7 individuals) were analyzed. Sixty-three percent of participants identified as Black/African American, 35% as non-Hispanic White, and 2% declined to report. Caregivers' experiences were largely characterized by PLWD receiving suboptimal care that caregivers viewed as influenced by system pressures and inadequate workforce competencies, leading to communication breakdowns and strain. Caregivers described poor collaboration between clinicians and caregivers with regard to in-hospital care delivery, including transitional care. Caregivers also highlighted the lack of person-focused care and the exclusion of the PLWD from care. CONCLUSIONS: Caregiver perspectives highlight opportunities for improving hospital care for PLWD in the context of neighborhood disadvantage and recognition of broader issues in care structure that limit their capacity to be actively involved in care. Further work should examine and develop strategies to improve caregiver integration during hospitalizations across diverse contexts.

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.

Verbal and Nonverbal Expressions of Persons Living With Dementia as Indicators of Person-Centered Caregiving.

BACKGROUND AND OBJECTIVES: Improved measures capable of capturing the influence of person-centered caregiving by staff in formal care settings on people living with dementia beyond deficit-oriented outcomes such as absence or reduction of symptoms are important for measuring progress toward improvements in well-being. This exploratory ethnographic study aimed to identify verbal and nonverbal expressions evidenced by people living with dementia surrounding person-centered caregiving approaches and to consider their use in informing temporally specific observational measures. RESEARCH DESIGN AND METHODS: This study adopted a microethnographic approach through secondary analysis of 5.3 h of audiovisual observations of people living with dementia (N = 9) in nursing home settings at mealtimes. We observed expressions surrounding person-centered caregiving approaches. A systematic review of audiovisual observations generated codes (observable indicators) of expressions that were characterized at their most discrete and unambiguous level. RESULTS: Drawing from 82 observable verbal and nonverbal expressions by people living with dementia, 14 discrete observable indicators were identified, broadly evidencing shifts in engagement and communication. We found that people living with dementia's expressions served both responsive and initiatory communicative purposes. DISCUSSION AND IMPLICATIONS: Efforts to expand positive outcome measurement for people living with dementia should extend beyond characterizing them as passive respondents toward active participants in their lived experiences. Identified observable indicators can inform efforts to refine and validate measures of expressions among people living with dementia. Further research can extend this inquiry into different contexts and engage input from people living with dementia and caregivers.

Tailoring Research Recruitment for Acute Care Settings: Recommendations from People with Dementia and their Caregivers.

BACKGROUND: There is a pressing need to increase enrollment and representation in Alzheimer's disease and related dementia (ADRD) research. Current recruitment approaches focus largely on clinic and community settings, with minimal engagement of acute care environments despite their broad use across diverse populations. The objectives of this study were to examine views, preferences, and recommendations regarding acute care-based ADRD research recruitment among persons with dementia and their caregivers. METHODS: The authors conducted semistructured interviews with recently hospitalized persons with dementia (N=3) and family caregivers (N=28). Interviews were analyzed using thematic analysis. FINDINGS: All participants endorsed acute care as an appropriate time for recruitment into ADRD research studies and identified important elements of an appropriately tailored recruitment approach and an interpersonally effective research staff. Participants emphasized that this approach should consider the acute care context with respect to participant situation, uncertainty, and timing. Participant suggestions informed the design of a 5-step process to guide ADRD research recruitment in the context of acute care. DISCUSSION: Findings provide valuable insights from people with dementia and their caregivers regarding opportunities for research engagement surrounding acute care and can inform expanded recruitment in these settings.

Ethical and Methodological Considerations for Evaluating Participant Views on Alzheimer's and Dementia Research.

The urgent need to expand enrollment in Alzheimer's disease and related dementia (ADRD) research has synergized calls for an empiric science of research recruitment, yet, progress in this area is hindered by challenges to measuring views toward ADRD research. This paper reports ethical and methodological considerations identified through a prospective qualitative study investigating ADRD patient and caregiver views on research recruitment and participation surrounding acute illness. Ethical and methodological considerations were identified through a combination of memoing, collaboration with a Community Advisory Board (CAB), and analysis of interview data from ADRD patients (N = 3) and/or caregivers (N = 28). These included risk for undue influence attributable to role ambiguity/motivational misconceptions, divergent decision-making preferences, bias contributing to low referrals of ADRD participants, and difficulty answering abstract/hypothetical questions. Many considerations were successfully addressed with multifaceted, proactive strategies, and CAB input. Findings have implications for recruitment science research and the validity of inferences regarding research preferences.

Use of Direct In-Person Observation in the Care of Hospitalized Older Adults with Cognitive Impairment: A Systematic Review.

Hospitalized older adults with cognitive impairment (CI) due to dementia and/or delirium may require individualized care strategies such as direct observation to mitigate safety concerns and manage behavioral symptoms. Despite common use of direct observation as a strategy, little is known about its practice and outcomes. A systematic review was conducted to identify, appraise, and synthesize literature on direct observation among hospitalized older adults with CI. The search yielded 16 eligible studies, with four describing current practices, nine reporting quality improvement efforts to broaden direct observation, and three focusing on direct observation reduction. Strength of evidence across studies was weak, limited in scope, and lacking clarity in definitions, indications for use and discontinuation, and documentation. Overall, findings highlight differing views on direct observation and the need for future, rigorous evaluation of approaches (e.g., nursing autonomy in initiating and discontinuing observation) to better align direct observation with patient needs. [Journal of Gerontological Nursing, 46(5), 23-30.].