Enhanced Dementia Instruction and Tool in Home Hospice Care (EDITH-HC)

PROJECT SUMMARY/ABSTRACT The long-term objective of this K99/R00 application is to develop Dr. Elizabeth Luth’s capacity to conduct studies aimed at reducing caregiver burden and improving care for patients with Alzheimer’s Disease and related dementias (ADRD) nearing the end of life. In the K99 phase, the proposed project supports Dr. Luth in four training objectives that will allow her to develop and transition to an independent investigator who creates culturally inclusive, practical, and scalable solutions to improve end-of-life care for patients with dementia. First, she will extend her knowledge in core substantive areas including hospice care, dementia caregiving, and recruitment and retention. Second, she will learn to develop, implement, and disseminate behavioral interventions with an emphasis on clinical care settings, workforce training, and collaboration with community partners. Third, she will learn how to design and conduct clinical trials for ADRD patients and caregivers. Finally, for the fourth training objective, Dr. Luth will pursue professional development opportunities, specifically in the areas of grant writing and collaboration. The four research aims of this application will proceed as follows. Aim 1 will identify common challenges, strategies, and gaps in care for an understudied population; that is, community-dwelling patients with dementia near the end of life. This aim is achieved through interviewing and surveying African American and white family caregivers and hospice clinicians. Aim 2 uses key stakeholder (family caregivers, clinicians, experts) feedback to adapt dementia-focused training materials and to develop a problem solving tool for home hospice clinicians to improve care outcomes. Aim 3 examines the feasibility and acceptability of the training and tool and revises them based on an iterative feedback process with family caregivers and clinicians. Aim 4 determines the preliminary efficacy of the training program and tool to improve clinicians’ knowledge of dementia-related challenges in home hospice care, reduce family caregiver burden, and reduce hospice disenrollment through a pilot randomized controlled trial (RCT). The proposed research works towards reducing disparities and achieving health equity by involving African American individuals in all stages of information gathering and intervention development and testing. The proposed project is consistent with the NIA’s mission to conduct behavioral research on aging and foster the development of research scientists in aging. It is also aligned with the NIA’s strategic goals of developing interventions to address Alzheimer’s Disease and improve the health of older adults in diverse populations. Dr. Luth proposes to pursue these development goals and begin the proposed research with the support of the Department of Medicine and Division of Geriatrics and Palliative Medicine at Weill Cornell Medicine, which provide an ideal environment of research support and resources to help her achieve her training and research goals.