Caregiver Experiences after the Death of a Person with Dementia with Lewy Bodies: a Mixed-Methods Analysis

This repository contains data used for the PACE-DLB (Predicting ACcurately End-of-Life in Dementia with Lewy Bodies and Promoting Quality End-of-Life Experiences) study (NCT04829656) sub-analysis, "Caregiver Experiences after the Death of a Person with Dementia with Lewy Bodies: a Mixed-Methods Analysis." The manuscript associated with these data is currently in submission. The data set includes the data from the 3 month post-death study visits for the 73 caregivers who completed visits prior to the data lock on 2/14/2024 as well as some data from the last pre-death study visit. Post-death visits occurred a mean 3.5 months (SD 1.1, range 2-8) after the death of the person with dementia with Lewy bodies. The analysis focuses on the caregiver experience at the post-death visit but also includes measures relating to the caregiver experience at the last pre-death visit and the experiences of the person with dementia with Lewy bodies at that visit (as well as demographics). Specific variables are detailed in the included data dictionary. Post-death study visit data used for this analysis were collected between 10/15/2021 and 2/14/2024.