Identifying Factors Predicting ACcurately End-of-Life in Dementia with Lewy Bodies and Promoting Quality End-of-Life Experiences: the PACE-DLB Study
- Purpose: This study aims to understand what changes might predict the end of life in people with dementia with Lewy bodies (DLB). This information will help patients, caregivers, families, and health care professionals know what to expect in later stages of DLB. It will also help identify what changes might suggest that someone is approaching the end of life, and how to make that time a good experience.
- Individuals with moderate DLB and their main caregiver willing to participate as a pair
- Moderate DLB diagnosis as assessed by a Quick Dementia Rating System (QDRS score of >12)
- Caregiver willing to complete a modified telephone interview for cognitive status (TICS-m score of >31)
- Able and willing to answer questionnaires relating to the DLB and caregiver experience
- Procedures: Each patient and care partner pair will attend study visits every 6 months through the end of life or 3 years. There is a virtual cohort and an in-person cohort with study visits occurring a the University of Florida in Gainesville, FL. Each study visit is expected to last 2-3 hours as each scale will be administered verbally.
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Principal InvestigatorMelissa Armstrong , Dr./Associate Professor
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