Published January 14, 2025 | Version v1
Dataset Open

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

Authors/Creators

  • 1. ROR icon University of Florida Health
  • 2. University of Florida
  • 3. ROR icon Children's Oncology Group
  • 4. University of Miami School of Medicine
  • 5. ROR icon University of Michigan–Ann Arbor
  • 6. EDMO icon University of Michigan
  • 7. ROR icon Mayo Clinic
  • 8. University of Virginia
  • 9. Lewy Body Dementia Association
  • 10. Arizona State University Edson College of Nursing and Health Innovation
  • 11. University of Minnesota

Description

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.

Files

ana_data.csv

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Additional details

Funding

National Institutes of Health
Identifying Factors Predicting ACcurately End-of-Life in Dementia with Lewy Bodies and Promoting Quality End-of-Life Experiences: the PACE-DLB Study 5R01AG068128-04

Dates

Created
2025-01-14
Date Zenodo record was created