Griffin, Joan M.

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.

Introduction: Health promotion programs focused on cardiovascular disease are underutilized with im/migrants. The one-time referral to group-based interventions model ignores (1) the complex sociocultural influences on behavior change and (2) the socio-historical context of migration, racialization of immigrants and refugees, and the roles these play in differential social integration of refugees. One solution may be to apply community-based participatory research (CBPR) and Public Health Critical Race Praxis (PHCRP) to social network interventions with opinion leaders. Yet, these interventions are challenging to scale. There is a critical need to understand how to scale community-driven social network interventions to effectively address cardiovascular disease inequities resulting from systemic racism experienced by im/migrant populations. Developed using CBPR and informed by PHCRP, this work builds upon Healthy Immigrant Community (HIC), a collaborative effort between Latinx and Somali im/migrant partners and Rochester Healthy Community Partnership. Our aim is to explore opinion leader recruitment, their characteristics, and expectations for HIC scale-up. Qualitative Hypothesis: Learning more about the opinion leaders’ background and experience in the Healthy Immigrant Community social network intervention will prepare us for a future efficacy study. Methods: We conducted a process evaluation by: (1) interviewing community partners who recruited opinion leaders (n=8) and (2) conducting three pre-intervention focus groups with opinion leaders (Latinx n=4; Somali women n=8; Somali men n=8). We used PHCRP to deductively form codes yet allowed for new ideas that arose from the data by inductively generating additional codes. Results: Interview participants described their decision-making process, qualities considered, recruitment strategies, and expectations for an implementation study. Focus group participants discussed their personal motivations for participation, how they hoped the study would help their community, and the barriers to health they experience because of structural determinism (macro-level forces that sustain inequities). Conclusions: This work will enhance our ability to translate HIC to other communities by expanding our knowledge of opinion leader characteristics that are important in a community-driven, social network intervention. Because social network interventions have been demonstrated to cause positive behavior change, further adapting these interventions in a community setting would be expected to provide a more effective approach compared to individually targeted behavior change strategies. Additionally, selecting OLs is neither time nor resource intensive and could enhance organizational strategies for implementing health promotion programming.

Objectives Compared to urban family caregivers (FCG), rural FCG experience greater burdens accessing coordinated care for their loved ones during and after hospitalization. The impact of technology-enhanced transitional palliative care (TPC) on caregiver outcomes is currently being evaluated in a randomized control trial. This study evaluates resource use and health system costs of this FCG-focused TPC intervention and potential Medicare reimbursement mechanisms. Methods Rural caregivers of hospitalized patients were randomized into an 8-week intervention consisting of video visits conducted by a registered nurse certified in palliative care, supplemented with phone calls and texts (n = 215), or attentional control. Labor costs were estimated for a registered nurse and compared to scenario analyses using a nurse practitioner or social worker wages. Medicare reimbursement scenarios included Transitional Care Management (TCM) and Chronic Care Management (CCM) CPT codes. Results In the base case, TPC cost was $395 per FCG facilitated by a registered nurse, compared to $337 and $585 if facilitated by a social worker or nurse practitioner, respectively. Mean Medicare reimbursement in the TCM-only scenario was $322 and $260 for high or moderate complexity patients, respectively. Reimbursement in the CCM only scenario was $348 and $274 for complex and non-complex patients, respectively. Reimbursement in the TCM+CCM scenario was $496 and $397, for high/complex and moderate/non-complex patients, respectively. Conclusion TPC is a feasible, low cost and sustainable strategy to enhance FCG support in rural areas. Potential reimbursement mechanisms are available to offset the costs to the health system for providing transitional palliative care to caregivers of patients recently hospitalized.

Abstract More than 6 million adults in the United States are affected by Alzheimer’s Disease and related dementias (ADRD), the majority of whom rely on assistance from an unpaid caregiver (family, friends). The goal of the 2021 Conference on Engaging Family and Other Unpaid Caregivers of Persons with Dementia in Healthcare Delivery, funded by the National Institute on Aging, was to establish a policy- and practice-aligned research agenda for enhancing ADRD caregiver engagement and support in healthcare settings. The Conference convened multidisciplinary thought leaders from across the United States to establish a set of actionable recommendations to advance the field. Recommendations centered on five key topics: 1) Identification and assessment of ADRD caregivers, 2) Reimbursement and financing for provider time spent on ADRD caregiver, identification, assessment, and support, 3) ADRD caregiver training and support, 4) Healthcare provider education, and 5) Technology. To support future work in each of the five priority areas, conference participants highlighted the importance of leveraging lessons from implementation science and models of equity and inclusion. Recommendations are intended to inform federal agencies and foundations about high-priority areas and motivate multidisciplinary collaborations to design care delivery systems that effectively engage and support ADRD caregivers.

Abstract People with late-stage Alzheimer’s disease and related dementias (ADRD) who are assumed to have lost coherent cognitive capacity may exhibit unexpected episodes of lucidity (EL). Given the transient nature and lack of scientific explanation of the phenomenon, EL is under-investigated and poorly understood. To better understand this phenomenon, we set out to develop an operational definition of EL. Based on survey data from former and current family caregivers participating in UsAgainstAlzheimer’s A-LIST® (N = 480), we defined four EL typologies. We then interviewed 25 caregiver respondents about their experiences and used analyzed qualitative data to refine the preliminary typologies. Finally, we conducted a Delphi consensus panel with clinicians, researchers, and health care providers with medical, pharmacological, and clinical expertise to describe potential explanations for EL to help further refine the typologies. Next we will test the validity of these typologies in a prospective, demographically diverse sample of current family caregivers.

Abstract The goal of the 2021 Conference on Engaging Family and Other Unpaid Caregivers of Persons with Dementia in Healthcare Delivery, funded by the NIA, was to establish a policy- and practice-aligned research agenda for enhancing dementia caregivers’ engagement and support in health and long-term care settings. Using the CITRA model as a guiding framework, Dr. Griffin will discuss important planning decisions leading up to the event, including the formation of a Steering Committee, selection of expert panelists and conference participants, and preparation of the non-technical background report. Her presentation will also describe the format of the consensus conference itself, focusing on the structure of the panel presentations and consensus activities, including small group breakout sessions in which conference attendees were charged with generating research recommendations; the process for voting on and prioritizing the identified recommendations; and method for refining and organizing the recommendations into major priority areas.

Abstract Episodes of lucidity (EL) in Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD), also termed “paradoxical lucidity,” have garnered increasing attention as an important area of research. Efforts to study lucidity suffer from a lack of clear definitional criteria, inconsistent conceptualization and diverse approaches to operationalizing features of these events. To advance systematic investigation of EL in AD/ADRD, there is a need for clarity and precision in labeling event attributes, markers, and specific measurement strategies that enable operational harmonization across distinct approaches to investigating the relatively broad and nascent phenomenon. To that end, we propose a preliminary research framework to guide harmonization of approaches to investigating EL in AD/ADRD. Our goal is to provide a systematized approach to characterizing operational decisions that facilitates comparability across different methodological approaches and measurement strategies while allowing for exploration of multiple definitional criteria, measurement standards, and interpretive approaches.

Abstract Compared to urban caregivers, rural caregivers experience greater burdens accessing coordinated care for their loved ones during and after hospital discharge. The impact of technology-enhanced transitional palliative care (TPC) on patient and caregiver outcomes is currently being evaluated in a randomized control trial. This study evaluates resource use and health system costs of this caregiver-focused TPC intervention. Rural caregivers of hospitalized patients in Minnesota, Wisconsin, and Iowa were enrolled in an 8-week intervention consisting of video visits, conducted by a registered nurse, supplemented with phone calls and texts (n=207). Labor costs were estimated using the Bureau for Labor Statistics median hourly rate for a registered nurse and compared to a scenario analysis using a nurse practitioner or social worker wages. Hours spent conducting the visits and charting were calculated using study data. A one-way sensitivity analysis estimated resource use over a range of visits per caregiver and time per visit. Caregivers received 8.8 visits on average over the study period at 45 minutes per visit. In the base case, TPC cost $330 per caregiver facilitated by a registered nurse, compared to $281 and $489 if facilitated by a social worker or nurse practitioner, respectively. The number of visits had the greatest influence on total costs of the intervention (low of $198, high of $463). TPC is a feasible, low cost strategy to enhance caregiver support in rural areas. These results pose an opportunity to consider reimbursement mechanisms to evaluate the sustainability of transitional palliative care interventions to support caregivers.

Managing the complex care needs of seriously ill patients transitioning from hospital to home can have detrimental effects on family caregivers (FCG). Multi-component interventions tailored to FCG needs are most effective at reducing caregiver burden, distress, and depression. However, gaps exist in determining best methods to assess, document, and analyze intervention components for FCGs. Common methods used to capture patient data during transitions in care may not be appropriate or allowed for FCG needs. As such, we present a methodological approach for electronically capturing, reporting, and analyzing multiple intervention components. This approach uses a standardized terminology and pathway for tailoring intervention components in real time while evaluating intervention effects across time. We use examples from a randomized controlled trial to illustrate the benefits of the current approach for analyzing the effectiveness of multi-component interventions in the context of caregiving research.

419 Background: The patient portal is part of an electronic health record (EHR) that allows patients to communicate with their healthcare team. The portal also provides a platform for patients to receive and complete symptom surveys that can be directly integrated into the EHR, allowing clinical care teams to monitor symptoms and provide cancer symptom management. The Improving Management of symPtoms during And following Cancer Treatment (IMPACT) consortium, supported by the National Cancer Institute’s Cancer MoonshotSM, aims to improve symptom control for cancer patients through assessment and symptom management interventions deployed via the EHR. This initiative presents an opportunity to examine portal enrollment and variation in use, factors critical to successful implementation, especially among groups that have high cancer symptom burden. To this end, we examine: 1) relationships between portal enrollment prior to the launch of IMPACT interventions and neighborhood broadband access, demographic, and social characteristics; and 2) frequency of pre-intervention portal use for any purpose among enrollees. Methods: Data are derived from two of three IMPACT research centers. Enrollment in and frequency of portal use, mode of accessing the portal (web vs. phone), social, demographic, and cultural factors were extracted from the EHR. Rural Urban Commuting Area (RUCA) codes were used to classify population density and degree of rurality. Broadband access was estimated using 2015-2019 American Community Survey estimates matched to zip codes from enrolled IMPACT patients and classified as a patient’s residence being in a community with high (≥85% of households) or low (< 85% of households) access. Bivariate comparisons and adjusted odds ratios were used to describe all associations. Results: Forty-seven percent of patients (22,596/48,034) were enrolled in the portal prior to the intervention. Patients in zip codes with low broadband access and those who were men, > 65 years old, not White, of Hispanic ethnicity, or disabled or not employed had significantly lower odds of being enrolled in the portal. If enrolled, 21% (n = 4825) used the portal at least once a week. Less variation was found in the average frequency of portal use, but patients younger than 40, and those who were Black, disabled, unemployed, or those who used a mobile device to access the portal had the lowest odds of accessing it at least once a week. Conclusions: Significant disparities in portal enrollment exist across demographic groups and among those with limited broadband access. Among those enrolled, most used the portal less than once a week. Fewer differences in frequency of use were observed by sociodemographic factors. Improving portal enrollment and frequency of use may be critical for symptom management interventions deployed via patient portals.