Faculty Bibliography

BACKGROUND:Black family caregivers of older adults living with dementia are at high risk for physical, spiritual, and psychosocial challenges. Culturally responsive interventions are needed to address disparities in this population. Peer mentorship may improve caregiving support for Black caregivers. The purpose of this National Institute on Aging Stage Model 1A study was to test the feasibility, acceptability, and fidelity of the Peer Support for Black Family Caregivers of Persons Living with Dementia (Pair 2 Care) intervention. METHODS:Pair 2 Care is a culturally responsive, non-judgmental, flexible, co-designed virtual peer support intervention in which former caregivers are paired as peer mentors with current caregivers for 6 months. We enrolled 11 former caregivers (mentors) and 15 current caregivers (mentees) for a total of 15 mentor-mentee pairs. Four mentors were double-paired while maintaining 1:1 mentor-mentee relationships. Mentors' and mentees' activities were monitored using surveys to ensure they were carried out as designed. Feasibility and acceptability were measured by evaluating inclusion and exclusion outcomes, recruitment, and retention data, satisfaction, and appropriateness of Pair 2 Care. RESULTS:All mentors and mentees were female and mostly daughters (65%) who currently or previously cared for an older adult parent who lived with dementia. Pair 2 Care was highly feasible and acceptable based on participant enrollment, mentor training completion, and mentee-mentor pairing within 10 weeks. Former caregiver mentors were retained at 90% and mentees at 93% over 6 months. On average, participants rated their overall Pair 2 Care satisfaction as very high (4.6/5). CONCLUSIONS:Pair 2 Care may provide an innovative strategy to improve family caregiver health outcomes such as quality of life among Black caregivers of Black people living with dementia to promote health equity. As a next step, a fully powered trial is needed to determine Pair 2 Care intervention efficacy. TRIAL REGISTRATION/BACKGROUND:ClinicalTrials.gov: USGOV NCT06064955.

BACKGROUND:for HNC as a digital patient-reported symptom monitoring system that enables early symptom detection and real-time interventions at the point of care. With this study protocol, we aim to test the effectiveness of the ePVA in improving HNC outcomes in real-world settings and to identify implementation strategies optimizing its effectiveness. METHODS:We will conduct a longitudinal mixed-methods hybrid type I study at four National Cancer Institute-designated Comprehensive Cancer Centers serving diverse populations in rural and urban settings (New York University, the University of Kansas Cancer Center, Fox Chase Cancer Center, and Baylor College of Medicine) guided by the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. Patient eligibility criteria include having histologically diagnosed HNC and undergoing radiation therapy with or without chemotherapy for curative intent. We will also interview clinicians caring for patients with HNC at the participating institutions regarding facilitators and barriers to implementing the ePVA. The accrual goal is 270 patients. Aim 1 is to determine the effect of the ePVA on HNC symptoms in a two-arm (usual care vs. ePVA + usual care) trial. The study's primary outcomes are patients' self-reported social function, senses of taste and smell, and swallowing, measured by the European Organization for Research and Treatment of Cancer QLQ-C30 and QLQ-H&N35. For Aim 2, we will interview patients (n = 40) as well as clinicians (n = 30) caring for patients with HNC at the participating institutions regarding facilitators and barriers to implementing the ePVA. In Aim 3, we will integrate Aims 1 and 2 data to identify strategies that optimize the use of the ePVA. DISCUSSION/CONCLUSIONS:The overarching goal of this research is to advance cancer care by identifying implementation standards for effective, widespread use of the ePVA that apply to all patient-reported outcomes in cancer care. TRIAL REGISTRATION/BACKGROUND:ClinicalTrials.gov NCT06030011. Registered on 8 September 2023.

OBJECTIVE:We sought to identify patterns in occupational therapy (OT) and physical therapy (PT) home health care visits among people living with dementia (PLWD) by (1) level of function care partner report compared with administrative data, (2) race and ethnicity, and (3) level of socioeconomic resources. DESIGN/METHODS:A secondary analysis. SETTING AND PARTICIPANTS/METHODS:We used data collected from 152 PLWD-care partner dyads enrolled in a hybrid type I effectiveness trial at a large, urban, Medicare-certified, nonprofit home health care agency in the northeastern United States. METHODS:Function was measured with the Caregiver Quality of Life Assistance in Activities of Daily Living (ADLs) and Assistance in Instrumental Activities of Daily Living (IADLs) subscales. PLWD's addresses were used to measure socioeconomic deprivation using the Area Deprivation Index (ADI). The number of OT/PT visits were calculated for the first 30 days of enrollment in the study with care partners' reports and administrative data. Visit data were compared and analyzed using a Wilcoxon signed-rank test and a zero-inflated negative binomial regression. Differences in the number of OT/PT visits was compared across racial and ethnic groups, ADI quartiles, and level of function using regression and controlling for education and comorbidities. RESULTS:Hispanic (mean: 1.4, SD: 0.754) and non-Hispanic Black (mean: 1.6, SD: 0.769) PLWD had significantly lower ADL function at baseline than White individuals (mean: 2.103, SD: 0.882) (P = .002) that increased over 30 days (P = .513). A significant difference existed between care partner and administrative reports in the number of PT visits (F = 0.97, P = .459) but not OT visits. There were no differences in OT/PT utilization based on race and ethnicity and socioeconomic resources. CONCLUSIONS AND IMPLICATIONS/CONCLUSIONS:Caregiver report was not reliable for PT visits received in home health care. OT/PT home health care utilization may help reduce disparities in ADL function across racial and ethnic groups.

Factorial study designs can be important for understanding the effectiveness of interventions when multiple interventions are under investigation. In this design setting, a unit of randomization can be assigned to any combination of interventions. The rationale for taking this kind of approach can vary depending on the specific questions targeted by the research. These questions, in turn, have implications for the way in which the analyses will be conducted. The goal in this paper is to describe how we developed a factorial design along with a Bayesian analytic plan for a large cluster-randomized trial-the Emergency Departments LEading the transformation of Alzheimer's and Dementia care (ED-LEAD) study-focused on improving care for persons living with dementia.

Assisted living (AL) and residential care (RC) settings are experiencing substantial growth as older adults with lower care needs seek alternatives to nursing homes. Despite this trend, there is a lack of skilled nursing care to support palliative care (PC) in these environments. Primary PC delivered by AL staff has emerged as a potential model to bridge this gap, focusing on symptom management and holistic support for individuals with serious illness. A metasynthesis of 88 qualitative studies was conducted to explore the provision of primary PC in AL/RC settings. The National Consensus Project Clinical Practice Guidelines for Quality Palliative Care was used to provide a holistic framework to identify unmet PC need and gaps in PC delivery. Studies published between 2012 and 2024 were analyzed to identify themes and categories related to PC domains, including physical, psychological, social, spiritual, cultural, end-of-life care, and ethical and legal considerations. Thematic synthesis revealed key findings across the identified PC domains within AL/RC settings. Studies highlighted challenges and opportunities for delivering primary PC in these environments, emphasizing the importance of addressing physical symptoms, psychological distress, social isolation, and spiritual needs among residents with serious illnesses. The metasynthesis underscores the critical role of primary PC in enhancing quality of life and care continuity for older adults residing in AL/RC settings. It also identifies gaps in current practices and emphasizes the need for tailored interventions and training to support care providers in delivering comprehensive PC to this population. By integrating qualitative research findings with the National Consensus Project guidelines, this metasynthesis provides a comprehensive overview of primary PC in AL/RC settings. The study underscores the necessity of enhancing PC delivery in these environments to meet the evolving needs of older adults with serious illnesses, thereby improving overall quality of care for residents with unmet palliative needs.

BACKGROUND:Despite the need, care partners of persons living with mild cognitive impairment (MCI) use supportive services less. The unique needs of care partners to persons living with MCI are not well described. This study explores how care partners support the inner strength of persons newly diagnosed with MCI. METHODS:Nine dyads of persons living with MCI and their care partners completed semi-structured interviews, analyzed according to the Listening Guide methodology. RESULTS:Care partners described supporting inner strengths of persons living with MCI by carrying the cognitive load and being reliable. Reconceptualizing identity was foundational. Across themes, care partners needed simultaneous support for themselves. DISCUSSION/CONCLUSIONS:This study represents the perspectives of a well-defined group of care partners to persons living with MCI. Eliciting the perspectives of underrepresented care partners and equitable access to MCI diagnosis are essential for future research. Dyadic supportive services tailored for MCI using a strengths-based approach are needed. HIGHLIGHTS/CONCLUSIONS:Care partners to persons living with mild cognitive impairment (MCI) are unique. Care partners support inner strength of persons living with MCI and need simultaneous support. Care partners reconceptualize their identities, are reliable, and carry cognitive load. Methods for eliciting perspectives of underrepresented care partners are needed. Supportive services tailored for MCI using a strengths-based approach are needed.

BACKGROUND AND OBJECTIVES/OBJECTIVE:Goal-concordant transition to hospice is an important facet of end-of-life care for people living with dementia. The objective of this integrative review was to appraise existing evidence and gaps focused on interventions and predictors of transition to hospice and end-of-life care for persons living with dementia across healthcare to inform future research. RESEARCH DESIGN AND METHODS/METHODS:Using integrative review methodology by Whittemore and Knafl, five databases were searched (PubMed, CINAHL, Web of Science, Google Scholar, Cochrane Database for Systematic Reviews) for articles between 2000 and 2023. The search focused on dementia, hospice care, transitions, care management and/or coordination, and intervention studies. RESULTS:Fourteen articles met inclusion criteria after critical appraisal. Most were cross-sectional in design and conducted in nursing homes and hospitals in the U.S. persons living with dementia had multiple chronic conditions including cancer, diabetes, heart disease, and stroke. Interventions included components of hospice decision-making delivered through advance care planning, checklist-based care management for hospice transition, and palliative care for those with severe dementia. Predictors included increasing severity of illness including functional decline, organ failure, intensive care use, and the receipt of palliative care. Other predictors were related to insurance status, race and ethnicity, and caregiver burden. Overall, despite moderate to high-quality evidence, the studies were limited in scope and sample and lacked racial and ethnic diversity. DISCUSSION AND IMPLICATIONS/CONCLUSIONS:Prospective, multisite randomized trials and population-based analyses including larger and diverse samples are needed for improved end-of-life dementia illness counseling and hospice care transitions for persons living with dementia and their caregivers.

BACKGROUND/UNASSIGNED:Chronic kidney disease (CKD) impacts more than 800 million people. It causes significant suffering and disproportionately impacts marginalized populations in the United States. Kidney palliative care has the potential to alleviate this distress, but has not been tested. This pilot study evaluates the feasibility of a randomized clinical trial (RCT) testing the efficacy of integrated kidney palliative and CKD care in an urban safety-net hospital. METHODS/UNASSIGNED:, and are receiving care at our safety net hospital. Participants will be randomized in permuted blocks of two or four to either the intervention group, who will receive monthly ambulatory care visits for six months with a palliative care provider trained in kidney palliative care, or to usual nephrology care. Primary outcomes are feasibility of recruitment, retention, fidelity to the study visit protocol, and the ability to collect outcome data. These outcomes include symptom burden, quality of life, and engagement in advance care planning. DISCUSSION/UNASSIGNED:This pilot RCT will provide essential data on the feasibility of testing integrated palliative care in CKD care in an underserved setting. These outcomes will inform a larger, fully powered trial that tests the efficacy of our kidney palliative care approach. CLINICAL TRIAL REGISTRATION/UNASSIGNED:NCT04998110.