End-of-life experiences in individuals with dementia with Lewy bodies and their caregivers: A mixed-methods analysis.

Background: Dementia with Lewy bodies (DLB) is one of the most common degenerative dementias, but research on end-of-life experiences for people with DLB and their caregivers is limited.
Method: Dyads of individuals with moderate-advanced DLB and their primary informal caregivers were recruited from specialty clinics, advocacy organizations, and research registries and followed prospectively every 6 months. The current study examines results of caregiver study visits 3 months after the death of the person with DLB. These visits included the Last Month of Life survey, study-specific questions, and a semi-structured interview querying end-of-life experiences.
Results: Individuals with DLB (n = 50) died 3.24 ± 1.81 years after diagnosis, typically of disease-related complications. Only 44% of caregivers reported a helpful conversation with clinicians regarding what to expect at the end of life in DLB. Symptoms commonly worsening prior to death included: cognition and motor function, ADL dependence, behavioral features, daytime sleepiness, communication, appetite, and weight loss. Almost 90% of participants received hospice care, but 20% used hospice for <1 week. Most caregivers reported overall positive experiences in the last month of life, but this was not universal. Having information about DLB and what to expect, access to support, and hospice care were healthcare factors associated with positive and negative end of life experiences. Hospice experiences were driven by communication, care coordination, quality care, and caregiver education.
Conclusion: Most caregivers of individuals who died with DLB reported positive end-of-life experiences. However, the study identified multiple opportunities for improvement relating to clinician counseling of patients/families, support/hospice referrals, and monitoring individuals with DLB to identify approaching end of life. Future research should quantitatively identify changes that herald end of life in DLB and develop tools that can assist clinicians in evaluating disease stage to better inform counseling and timely hospice referrals.
Trial Registration: Trial registration information: NCT04829656.
Competing Interests: I have read the journal’s policy and the authors of this manuscript have the following competing interests: EW, BL, SMM, ZL, and HJF report no competing interests. HLP: HLP receives funding from the NIA (1P30AG053760) and is the local PI of a Lewy Body Dementia Association Research Center of Excellence. CM: CM receives research support from ACL/DHHS (90ALGG0014-01-00), NIA/NIH (2SB1AG037357-04A1, R01-AG-054435), HRSA (U1QHP287440400) and DoD (AZ190036). She is the local PI of a Lewy Body Dementia Association Research Center of Excellence. JAF: JAF receives research support from the NIA (U01NS100620, R01AG068128, R43AG65088). AL: AL receives research support from the NIA (P30AG62677, R43AG65088). She is a Program Coordinator for the local a Lewy Body Dementia Association Coordinating Center Research Center of Excellence. BFB: BFB has served as an investigator for clinical trials sponsored by Biogen, Alector, and EIP Pharma. He serves on the Scientific Advisory Board of the Lewy Body Dementia Association, Association for Frontotemporal Degeneration, and Tau Consortium. He is the site PI of a Lewy Body Dementia Association Research Center of Excellence program, as well as coordinating center PI of the program. He receives research support from the NIH, the Mayo Clinic Dorothy and Harry T. Mangurian Jr. Lewy Body Dementia Program, and the Little Family Foundation. JEG: JEG is the creator of the QDRS and the LBCRS. He is supported by grants from the National Institutes of Health (R01 AG069765, R01 AG057681, R01 NS101483, P30 AG059295, U54 AG06354, R01 AG056531, U01 NS100610, R01 AG056610, R01 AG054425, R01 AG068128) and the Leo and Anne Albert Charitable Trust. He is the local PI of the Lewy Body Dementia Association Research Center of Excellence at the University of Miami and serves on the Scientific Advisory Board of the Lewy Body Dementia Association. AST: AST is an employee of the Lewy Body Dementia Association. MJA: MJA receives research support from the NIH (R01AG068128, P30AG066506, R01NS121099, R44AG062072), the Florida Department of Health (grants 20A08, 24A14, 24A15), and as the local PI of a Lewy Body Dementia Association Research Center of Excellence. She serves on the DSMBs for the Alzheimer’s Therapeutic Research Institute/Alzheimer’s Clinical Trial Consortium and the Alzheimer’s Disease Cooperative Study. She has provided educational content for Medscape, Vindico CME, and Prime Inc. This does not alter our adherence to PLOS ONE policies on sharing data and materials.
(Copyright: © 2024 Wollney et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)