The Impact of Hospice Care on the Wellbeing of Alzheimer's Disease Patients and Their Family Members

OTHER PROJECT INFORMATION – Project Summary/Abstract The Impact of Hospice Care on the Wellbeing of Alzheimer's Disease Patients and Their Family Members Given the increasing prevalence of Alzheimer's Disease (AD), there is a growing concern over how best to care for AD patients as they approach the end of life. While two decades ago, relatively few were admitted to hospice,

by 2019 over two-thirds of Medicare decedents with AD died in hospice. Family members of AD patients, often aptly named “the invisible second patients,” bear a significant burden in the care of their loved ones. Although AD patients increasingly rely on hospice care, it is not known whether this trend has led to

improvements in the well-being of AD patients at the end of life or the well-being of their family members. This project aims to answer these crucial questions using novel data and natural experiments. The first aim studies how hospice care affects the cognitive and functional well-being of AD patients, using large datasets of clinical

assessment measures of pain management, depression, and activities of daily living. Previous research has primarily relied on cross-sectional methods, which may introduce selection bias as patients opting for hospice care may differ on many unobservable characteristics from those who do not. This project overcomes this

challenge by leveraging natural experiments arising from the opening of new hospice facilities in local healthcare markets. In a preliminary analysis, each entrant raised county-level hospice utilization by 10%. Using new hospice openings as an instrumental variable for hospice use, the project will estimate the impact of hospice use

by comparing observably identical AD patients in areas with increased availability of hospice care to patients in areas that did not experience changes in availability. The research design is complemented by rich data, including two decades of Medicare claims and detailed health assessments from the Minimum Data Set and

Home Health Outcome and Assessment Information Set, which together cover over 70% of AD patients. The second aim studies how hospice care affects the physical and psychological well-being of family members living with AD patients. On the one hand, if hospice care improves the comfort of AD patients, it could ease the

physical and psychological burden on family caregivers. On the other hand, since patients must forgo curative care when electing hospice, family members could experience increased burden in informal caregiving and adverse health outcomes. Prior work on this topic has mostly relied on surveys and smaller samples. This project

aims to provide novel evidence using large administrative data, leveraging a unique dataset that identifies Medicare beneficiaries who share the same address. This linkage enables researchers to accurately identify family members who live with AD patients and observe their outcomes using the rich claims and assessment

data described in the previous aim. With these aims, this project will promote the mission of the NIA by improving our understanding of how different end-of-life care options affect the well-being of AD patients and the well-being of their family members.