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
In this component, we will gather the perspectives of former caregivers of people who died with dementia. 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, taking into account variation in needs and values. This aspect of the research acknowledges that traditional hospice models may not fully align with the personal values of all individuals.
Examining Organizational Practices
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
Through collaboration with caregivers, policymakers, and experts in hospice and dementia, the project will generate a prioritized set of recommendations for improving end-of-life care in hospice. 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 affected individuals and the systemic challenges identified within hospice organizations. The goal is to bridge the gap between current practices and the needs of people with dementia and their caregivers.