Caregivers’ End-of-Life Care Goals for Persons with Severe Dementia Change Over Time

Abstract

Background: Family caregivers make end-of-life (EOL) decisions for persons with severe dementia (PWSDs). It is not known whether the family caregivers’ goals change over time. Objective: Assess caregivers’ EOL care goal for PWSDs and change in these goals over time. Methods: Using a prospective cohort of 215 caregivers of PWSDs, we assessed the proportion of caregivers whose EOL care goal for PWSDs changed between two consecutive time points. Mixed effects multinomial regression models assessed factors associated with caregivers’ EOL care goals for PWSD (maximal, moderate, minimal life extension); and change in EOL care goal from previous time point. Results: At baseline, 20% of the caregivers had a goal of maximal life extension for their PWSD, and 59% changed their EOL care goal at least once over a period of 16 months. Caregivers of PWSDs with lower quality of life (RR: 1.15, CI: 1.06, 1.24), who expected shorter life expectancy for PWSDs (RR: 10.34, CI: 2.14, 49.99) and who had an advance care planning discussion (RR: 3.52, CI: 1.11, 11.18) were more likely to have a goal of minimal life extension for PWSD. Caregivers with higher anticipatory grief (RR: 0.96, CI: 0.93,1) were more likely to have a goal of maximal life extension. Change in PWSDs’ quality of life and change in caregivers’ anticipatory grief were associated with change in caregivers’ EOL care goals. Conclusion: Caregivers’ EOL care goals for PWSDs change over time with change in PWSD and caregiver related factors. Findings have implications regarding how health care providers can engage with caregivers.