Our Mission
The HEARD (Hospice & End-of-life care for people impacted by Alzheimer’s and Related Dementias) project is a 5-year National Institutes of Health study focused on improving hospice and end-of-life care for older adults who have dementia and their caregivers or families. Through the project, the research team will ask former caregivers and family members to define high-quality end-of-life care, document hospice practices and policies that influence care, and develop recommendations for improving hospice care for people impacted by dementia.
Overview
This study aims to improve hospice and end-of-life care for people with dementia and their care communities and consists of the following three aims:
Understanding Former Caregiver Experiences and Preferences
Enrolling 2025-2026
In this component, we will gather the perspectives of former caregivers of people who died with dementia who are from underrepresented communities. Through semi-structured interviews and validated survey measures, we will gather experiences of end-of-life care and bias and generate definitions of high-quality end-of-life care, attending to variation within and across identity. This aspect of the research recognizes the diversity of preferences, acknowledging that traditional hospice models may not fully align with the cultural and personal values of these communities.
Examining Organizational Practices
Enrolling Fall 2025-2027
By conducting organizational case studies, we will document hospice practices and policies that influence care for people with dementia from underrepresented communities. Drawing from surveys, meeting observations, staff interviews, and document reviews, we aim to uncover systemic facilitators and barriers to dementia care within hospice organizations. These findings will be crucial in understanding the structural factors that contribute to disparities in access and quality of care.
Developing Recommendations to Improve Care
Enrolling 2027-2028
Through collaboration with caregivers, policy makers, and experts in hospice and dementia, the project will generate a prioritized set of recommendations for improving hospice care. Building on the insights gathered from aims 1 and 2, this aim will ensure that the proposed recommendations are informed by both the lived experiences of the affected communities and the systemic challenges identified within hospice organizations. The goal is to bridge the gap between current practices and the diverse needs of people with dementia and their caregivers focused on underrepresented communities.