Adapting and Testing the Care Partner Hospital Assessment Tool for Use in Dementia Care: Protocol for a 2 Sequential Phase Study

Background Research and policy demonstrate the value of and need for systematically identifying and preparing care partners for their caregiving responsibilities while their family member or friend living with dementia is hospitalized. The Care Partner Hospital Assessment Tool (CHAT) has undergone content and face validation and has been endorsed as appropriate by clinicians to facilitate the timely identification and preparation of care partners of older adult patients during their hospitalization. However, the CHAT has not yet been adapted or prospectively evaluated for use with care partners of hospitalized people living with dementia. Adapting and testing the CHAT via a pilot study will provide the necessary evidence to optimize feasibility and enable future efficacy trials. Objective The purpose of this paper is to describe the study protocol for the adaptation and testing of the CHAT for use among care partners of hospitalized people living with dementia to better prepare them for their caregiving responsibilities after hospital discharge. Methods Our protocol is based on the National Institutes of Health Stage Model and consists of 2 sequential phases, including formative research and the main trial. In phase 1, we will use a participatory human-centered design process that incorporates people living with dementia and their care partners, health care administrators, and clinicians to adapt the CHAT for dementia care (ie, the Dementia CHAT [D-CHAT]; stage IA). In phase 2, we will partner with a large academic medical system to complete a pilot randomized controlled trial to examine the feasibility and estimate the size of the effect of the D-CHAT on care partners’ preparedness for caregiving (stage IB). We anticipate this study to take approximately 60 months to complete, from study start-up procedures to dissemination. The 2 phases will take place between December 1, 2022, and November 30, 2027. Results The study protocol will yield (1) a converged-upon, ready-for-feasibility testing D-CHAT; (2) descriptive and feasibility characteristics of delivering the D-CHAT; and (3) effect size estimates of the D-CHAT on care partner preparedness. We anticipate that the resultant D-CHAT will provide clinicians with guidance on how to identify and better prepare care partners for hospitalized people living with dementia. In turn, care partners will feel equipped to fulfill caregiving roles for their family members or friends living with dementia. Conclusions The expected results of this study are to favorably impact hospital-based care processes and outcomes for people living with dementia and their care partners and to elucidate the essential caregiving role that so many care partners of people living with dementia assume. Trial Registration ClinicalTrials.gov NCT05592366; https://clinicaltrials.gov/ct2/show/NCT05592366 International Registered Report Identifier (IRRID) PRR1-10.2196/4680

Recruitment and Retention of Underrepresented Populations in Alzheimer’s Disease Research: A Systematic Review

Introduction: Alzheimer’s disease and related dementias (ADRD) disproportionately impact racial and ethnic minority and socioeconomically disadvantaged adults. Yet, these populations are significantly underrepresented in research. Methods: We systematically reviewed the literature for published reports describing recruitment and retention of individuals from underrepresented backgrounds in ADRD research or underrepresented participants’ perspectives regarding ADRD research participation. Relevant evidence was synthesized and evaluated for quality. Results: We identified 22 eligible studies. Seven studies focused on recruitment/retention approaches, all of which included multifaceted efforts and at least one community outreach component. There was considerable heterogeneity in approaches used, specific activities and strategies, outcome measurement, and conclusions regarding effectiveness. Despite limited use of prospective evaluation strategies, most authors reported improvements in diverse representation in ADRD cohorts. Studies evaluating participant views focused largely on predetermined explanations of participation including attitudes, barriers/facilitators, education, trust, and religiosity. Across all studies, the strength of evidence was low. Discussion: Overall, the quantity and quality of available evidence to inform best practices in recruitment, retention, and inclusion of underrepresented populations in ADRD research are low. Further efforts to systematically evaluate the success of existing and emergent approaches will require improved methodological standards and uniform measures for evaluating recruitment, participation, and inclusivity

Diverse perspectives on hospitalisation events among people with dementia: protocol for a multisite qualitative study

Introduction People living with dementia (PLWD) are more likely to experience hospitalisation events (hospitalisation, rehospitalisation) than those without dementia. Many hospitalisation events, particularly rehospitalisation within 30 days of discharge, are thought to be avoidable. Yet our understanding of dementia-specific risk and protective factors surrounding avoidable hospitalisation is limited to specific intersetting transitions and predominantly clinician perspectives. Broader insights are needed to design accessible and effective solutions for reducing avoidable hospitalisations. We have designed the Stakeholders Understanding of Prevention Protection and Opportunities to Reduce HospiTalizations (SUPPORT) Study to address these gaps. The objectives of the SUPPORT Study are to elicit and examine family caregiver, community and hospital providers’ perspectives on avoidable hospitalisation events among PLWD, and to identify opportunities for effective prevention.Methods and analysis We will conduct a multisite, descriptive qualitative study to interview around 100 family caregivers, community and hospital providers. We will identify and sample from regions and communities with higher socio-contextual disadvantage and hospital utilisation, and will aim to recruit individuals representing diverse racial/ethnic backgrounds. Interviews will follow a descriptive qualitative design in conjunction with constant comparison techniques to sample divergent situations and events. We will employ a range of analytical approaches to address specific research questions including thematic (inductive and deductive), comparative and dimensional analysis. Interviews will be conducted individually or in focus groups and follow a semistructured interview guide.Ethics and dissemination The study is approved by the University of Wisconsin-Madison Institutional Review Board. Informed consent procedures will incorporate steps to evaluate capacity to provide informed consent in the event that participants express concerns with thinking or memory or demonstrate challenges recalling study details during the consent process to ensure capacity to consent to participation. A series of publicly available reports, seminars and symposia will be undertaken in collaboration with collaborating organisation partners

Hospital discharge documentation of a designated clinician for follow-up care and 30-day outcomes in hip fracture and stroke patients discharged to sub-acute care

Abstract Background Transitions to sub-acute care are regularly complicated by inadequate discharge communication, which is exacerbated by a lack of clarity regarding accountability for important follow-up care. Patients discharged to sub-acute care often have complex medical conditions and are at heightened risk for poor post-hospital outcomes, yet many do not see a provider until 30 days post discharge due to current standards in Medicare regulations. Lack of designation of a responsible clinician or clinic for follow-up care may adversely impact patient outcomes, but the magnitude of this potential impact has not been previously studied. Methods We examined the association of designating a responsible clinician/clinic for post-hospital follow-up care within the hospital discharge summary on risk for 30-day rehospitalization and/or death in stroke and hip fracture patients discharged to sub-acute care. This retrospective cohort study used Medicare Claims and Electronic Health Record data to identify non-hospice Medicare beneficiaries with primary discharge diagnoses of stroke/ or hip fracture discharged from one of two urban hospitals to sub-acute care facilities during 2003–2008 (N = 1130). We evaluated the association of omission of the designation of a responsible clinician/clinic for follow-up care in the hospital discharge summary on the composite outcome of 30-day rehospitalization and/or death after adjusting for patient characteristics and utilization. We used multivariate logistic regression robust estimates clustered by discharging hospital. Results Patients whose discharge summaries omitted designation of a responsible clinician/clinic for follow-up care were significantly more likely to experience 30-day rehospitalization and/or death (OR: 1.51, 95% CI 1.07–2.12, P = 0.014). Conclusions The current study found a strong relationship between the omission of a responsible clinician/clinic for follow-up care from the hospital discharge summary and the poor outcomes for patients transferred to sub-acute care. More research is needed to understand the role and impact of designating accountability for follow-up care needs on patient outcomes

Care Partner Inclusion of People Hospitalized With Alzheimer Disease and Related Dementias: Protocol for a Mixed Methods Systems Engineering Approach to Designing a Health Care System Toolkit

BackgroundResearch and policy demonstrate the value and need for the systematic inclusion of care partners in hospital care delivery of people living with Alzheimer disease and related dementias (ADRD). Support provided to care partners through information and training regarding caregiving responsibilities is important to facilitating their active inclusion and ultimately improving hospital outcomes of people living with ADRD. To promote care partners’ active inclusion, a toolkit that guides health systems in the identification, assessment, and training of care partners is needed. User-centered approaches can address this gap in practice by creating toolkits that are practical and responsive to the needs of care partners and their hospitalized family members and friends living with ADRD. ObjectiveThis paper describes the study protocol for the development and refinement of the ADRD Systematic Hospital Inclusion Family Toolkit (A-SHIFT). A-SHIFT will provide health care systems with guidance on how to effectively identify, assess, and train care partners of hospitalized persons living with ADRD. MethodsThe A-SHIFT study protocol will use a 3-aimed, convergent mixed method approach to iteratively develop and refine the toolkit. In Aim 1, we will use a systems-engineering approach to characterize patterns of care partner inclusion in hospital care for people living with ADRD. In Aim 2, we will partner with stakeholders to identify and prioritize health care system facilitators and barriers to the inclusion for care partners of hospitalized people living with ADRD. In Aim 3, we will work with stakeholders to co-design an adaptable toolkit to be used by health systems to facilitate the identification, assessment, and training of care partners of hospitalized people living with ADRD. Our convergent mixed method approach will facilitate triangulation across all 3 aims to increase the credibility and transferability of results. We anticipate this study to take 24 months between September 1, 2022, and August 31, 2024. ResultsThe A-SHIFT study protocol will yield (1) optimal points in the hospital workflow for care partner inclusion, (2) a prioritized list of potentially modifiable barriers and facilitators to including care partners in the hospitalization of people living with ADRD, and (3) a converged-upon, ready for feasibility testing of the toolkit to guide the inclusion of care partners of people living with ADRD in hospital care. ConclusionsWe anticipate that the resultant A-SHIFT will provide health systems with a readiness checklist, implementation plan, and resources for identifying, assessing, and training care partners on how to fulfill their caregiving roles for people living with ADRD after hospital discharge. A-SHIFT has the potential to not only improve care partner preparedness but also help reduce health and service use outcomes for people living with ADRD after hospital discharge. International Registered Report Identifier (IRRID)DERR1-10.2196/4527

Appendix - Underreporting of Gender and Race/Ethnicity Differences in NIH-Funded Dementia Caregiver Support Interventions

<p>Appendix for Underreporting of Gender and Race/Ethnicity Differences in NIH-Funded Dementia Caregiver Support Interventions by Andrea Gilmore-Bykovskyi, Rachel Johnson, Lily Walljasper, Laura Block, and Nicole Werner in American Journal of Alzheimer's Disease & Other Dementias</p