This study is no longer recruiting new participants.
Publications to date
Armstrong MJ, Dai Y, Sovich K, LaBarre B, Paulson HL, Maixner SM, Fields JA, Lunde AM, Forsberg LK, Boeve BF, Manning CA, Galvin JE, Taylor AS, Li Z. Caregiver Experiences and Burden in Moderate-Advanced Dementia With Lewy Bodies. Neurol Clin Pract. 2024;14(3):e200292. doi: 10.1212/CPJ.0000000000200292. PMID: 38617555; PMCID: PMC11014644. (Article link)
Armstrong MJ, LaBarre B, Sovich K, et al. Patient- and proxy-reported quality of life in advanced dementia with Lewy bodies. Alzheimers Dement. 2024;20(4):2719-2730. doi:10.1002/alz.13745 (Article link)
Wollney E, Sovich K, LaBarre B, et al. End-of-life experiences in individuals with dementia with Lewy bodies and their caregivers: A mixed-methods analysis. PLoS One. 2024;19(8):e0309530. doi:10.1371/journal.pone.0309530 (Article link)
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.
Eligibility
To participate, you must be:
- 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, either through the end of life or for 3 years. There is a virtual-only cohort and a UF cohort that can complete study visits virtually or in person at the University of Florida in Gainesville, FL. Each study visit is expected to last approximately 2 hours as each scale will be administered verbally.
Contact Information
This study is no longer recruiting new participants.
Hannah Jury, BA, BPH
Principal Investigator
Melissa Armstrong, MD, MSc