Objective: To assess predictors of death in the subsequent 6 months in dementia with Lewy bodies (DLB).

Background: Individuals with DLB commonly die of disease-related complications. However, hospice is often initiated only in the last weeks of life. We aimed to investigate predictors of impending death in DLB.

Method: Individuals with moderate-advanced DLB and their primary informal caregivers enrolled as dyads in the PACE-DLB study. The study collected demographics, disease-related measures, and measures of patient and caregiver experiences every 6 months. Variables predicting end of life were assessed: (1) through a time-varying Cox model involving all participants, with backwards and forwards variable selection and (2) through paired t- and signed rank sum tests investigating which variables changed significantly between the last two study visits for participants who died after completing at least two visits.

Results: Data were available for 188 dyads. Individuals with DLB were commonly male (77.7%), with 95.2% identifying as white and 97.3% as non-Hispanic. Mean age was 75.1 (SD 8.0) and mean disease duration was 3.1 (SD 2.7) at baseline/enrollment. Seventy-four participants died prior to the analysis (mean 3.8 ± 2.0 years post-diagnosis). In the final Cox proportional hazards model using baseline and time-dependent covariates, variables associated with shorter survival included sex (shorter survival in women, HR 1.94, 95% CI 1.02-3.69), longer disease duration (HR 1.15, 1.03-1.30), ER visits in the last 6 months (1.97, 1.10-3.51), daily falls (2.81, 1.02-7.71), pressure ulcers (2.07, 1.01-4.27), Lewy Body Composite Risk Score (1.22, 1.01-1.49), and greater dependence in ADLs (1.06, 1.03-1.10). When comparing scores between the last two visits in individuals who died (n=52), there were significant changes in cognition, sleepiness, fluctuations, ADL dependence, and Advanced Dementia Prognostic Tool scores with approaching death.

Conclusion: Both worsening of disease-related symptoms (e.g. cognition, fluctuations, sleepiness, falls, ADL dependence) and evidence of increased medical needs (e.g. ER visits, pressure ulcers) signal approaching end of life in DLB. These clues can alert clinicians to hospice needs and inform patient and family counseling regarding prognosis.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/predictors-of-death-within-6-months-in-individuals-with-dementia-with-lewy-bodies/