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2021 Pilot Awards for Global Brain Health Leaders (GBHI)

Quality of end-of-life care for persons with dementia and their caregivers

Lauren Hunt, Ph.D
University of California, San Francisco
San Francisco, CA - United States

Dementia is a progressive disease and as a result, individuals with dementia may experience an increase in pain and other symptoms towards the end of life, which could make it challenging for their caregivers. Dr. Lauren Hunt’s project will test whether a dementia care management program can improve the end-of-life experience for individuals with dementia and their caregivers. In this study, Dr. Hunt will leverage data and resources from an ongoing clinical trial called the “Care Ecosystem,” a dementia care management program. Dr. Hunt will analyze the data from a group of 250 participants that includes individuals with dementia and their caregivers in the Care Ecosystem trial. As part of the quantitative analyses, Dr. Hunt will assess the impact of the Care Ecosystem model on caregiver-reported satisfaction with end-of-life care, hospice and other healthcare services in the last months of life. Dr. Hunt will also study the challenges faced by the caregiver in the final months of the life of the individual with dementia. Furthermore, Dr. Hunt will perform a qualitative study of caregiver and Care Ecosystem staff views on the challenges of providing end-of-life care for individuals with dementia and how the Care Ecosystem might be improved to better support individuals with dementia and their caregivers. The knowledge gained from this study could be used to design a better end-of-life care plan protocol and could be added to the Care Ecosystem trial. If successful, these study results could be scaled worldwide to dementia care models.

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