Quality of End-of-Life Care for Persons with Dementia and Their Caregivers

Persons with dementia (PWD) often experience high rates of pain and other symptoms at the end of life, while their caregivers experience much higher rates of caregiver strain compared to caregivers of people dying from other terminal diseases. However, few intervention studies have focused on improving the quality of end-of-life care for PWD and supporting their caregivers during this vulnerable time.

This pilot project will leverage data and resources from the ongoing Care Ecosystem clinical trial. We will assemble a decedent cohort of PWD/caregiver dyads followed from study enrollment until death (n~250) and use a mix of quantitative and qualitative analyses. Quantitative analyses will assess the effect of the Care Ecosystem on caregiver reported satisfaction with end-of-life care, hospice and other healthcare use in the last months of life, and caregiver burden in the final months of the PWD's life. Qualitative analyses will assess caregiver and Care Ecosystem staff views on the challenges of providing end-of-life care for PWD and how the Care Ecosystem might be improved to better support dyads approaching the end of life.

The knowledge gained from this project will inform the development of a specific end of life care plan protocol that could be added to the Care Ecosystem care model and serve as an exemplar to other dementia care models. As the Care Ecosystem and other dementia care models are implemented and scaled up nationally and internationally, there is enormous potential to impact the quality of end-of-life care of millions of PWD and their caregivers.