Engage-D: DEsigNing Culturally Sensitive Care ManaGement for Hospice TrAnsitions for Diverse Persons LivinG with AdvancEd Dementia

New York University, New York NY

Investigators

Abstract

ABSTRACT Among the 6.5 million adults with Alzheimer’s disease and Alzheimer’s disease related dementias (AD/ADRD) in the United States, nearly a third of persons living with dementia (PLWD) receive care in the home healthcare setting, many of whom are at the end of life with advanced dementia. Many often benefit from transition to hospice when eligible and aligned with goals of care. Despite the benefits of hospice care for PLWD such as improved care quality, fewer hospitalizations, and increased care partner support, racially and ethnically diverse PLWD have disparately low rates of hospice use. Black and Latino PLWD have greater hospitalizations and low hospice use at the end of life. Little is known about disparities in hospice use for Asians due to a lack of data stemming from underrepresentation in AD/ADRD research. Preferences, cultural and religious beliefs, lack of access, and mistrust may explain some inequities in hospice use. Culturally sensitive care management for hospice care transitions has potential to improve end-of-life care for diverse PLWD; however, gaps in evidence preclude the development of such interventions to improve hospice transitions for racially and ethnically diverse PLWD. Thus, care management interventions, informed by health disparities and health equity research frameworks and by end-users such as home healthcare professionals and care partners, that can be integrated into existing care delivery models, are urgently needed. Home healthcare is a crucial intervention point for increasing hospice use; however, care management that aligns with values, preferences, religious, spiritual, and cultural needs of PLWD and care partners requires further study. This K23 Mentored Patient-Oriented Research Career Development Award will provide the candidate, Komal Patel Murali, PhD, RN, ACNP-BC, with training in AD/ADRD intervention development and clinicals, health equity research, and career development to progress on a pathway to independence as an interdisciplinary nurse scientist and aging researcher focused on improving end-of-life care inequities impacting diverse PLWD and their care partners. The specific aims for this career development award are to: 1) Co-design a culturally sensitive care management checklist to guide hospice transitions for Black, Latino, and Asian PLWD and their care partners receiving home healthcare, 2) Pilot test the culturally sensitive care management checklist within care management for feasibility, acceptability, fidelity, and usability for Black, Latino, and Asian PLWD and care partners and HHC professionals, 3) Examine hospice enrollment, time to enrollment, and care partner satisfaction at 1-month and 6-month follow up with Black, Latino, and Asian PLWD and their care partners. This study is conceptually guided by the National Institute on Aging Health Disparities Research Framework, the Equity-Focused Implementation Research Framework, and the NIH Stage Model for Intervention Development. The intervention will be delivered within usual care management surrounding hospice transitions within a large home healthcare agency in New York City and will inform the development of a subsequent R01 clinical trial.