Background End-of-life (EOL) care decisions for persons with severe dementia (PWSDs) are guided by their family caregivers’ goals and preferences. It is not known if the caregivers’ EOL care goals for PWSDs change over time. We assessed caregivers’ EOL care goal for PWSDs, extent to which these change over time and the factors influencing them.
Methods In a prospective cohort of 215 primary informal caregivers of community-dwelling PWSDs in Singapore, we surveyed caregivers every four months over a period of 16 months. We assessed the proportion of caregivers whose EOL care goal for PWSD changed between two consecutive time points. Multivariable 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 21% 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 were less optimistic about PWSDs’ remaining life expectancy (RR: 10.34, CI:2.14, 49.9) 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.
Conclusions Results highlight that caregivers’ EOL care goals for PWSDs change over time, and that this change is associated with both PWSD and caregiver related factors. Findings have implications regarding how health care providers can best engage caregivers to make informed decisions for PWSD’s EOL care.
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