ENGAGE-D: DEsigNing Care ManaGement for Hospice TrAnsitions for Persons LivinG with AdvancEd Dementia - 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, PLWD have differentially low rates of hospice use. Some high risk and high need populations have higher hospitalizations and low hospice use at the end of life. End-of-life care research has demonstrated that personal preferences, values, beliefs, and lack of access to hospice care may explain some differences in hospice use among PLWD. As care partners navigate hospice-related decision-making, dementia-tailored care management has potential to improve end-of-life care for PLWD and care partners. However, gaps in evidence preclude the development of interventions to improve hospice transitions for PLWD and their caregivers. Care management interventions informed by end-users, such as home healthcare professionals and care partners, that can be integrated into existing care delivery models, are urgently needed. Additionally, home healthcare is a crucial intervention point for increasing hospice use; however, care management that prioritizes end-of-life medical and social needs of PLWD and care partners requires further study in this setting where many PLWD and care partners navigate care at the end of life. Therefore, this K23 Mentored Patient-Oriented Research Career Development Award will provide the candidate, Komal Patel Murali, PhD, RN, ACNP-BC, with training in co-design research and AD/ADRD intervention development and clinical trials, research with high risk and high need populations, and professional 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 for PLWD and their care partners. The specific aims for this career development award are to: 1) Co-design a care management checklist to guide hospice transitions for PLWD and their care partners receiving home healthcare, 2) Pilot test the hospice transitions checklist within usual care management for feasibility, acceptability, fidelity, and usability for 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 care partners. This study is conceptually guided by 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 prepare the candidate for submission of a subsequent larger R01 study examining the intervention’s efficacy and effectiveness.
