Instability in Caregivers’ Perception of Dementia as a Terminal Disease

Family caregivers' perception that dementia is a terminal disease influence end-of-life (EoL) care of persons with severe dementia (PwSDs). Yet, this perception and the extent to which it changes over time is underexplored. We assessed PwSD caregivers' perception of dementia as a terminal disease and changes in this perception over time.Prospective cohort.Two hundred fifteen primary informal caregivers of community-dwelling PWSDs in Singapore were surveyed every 4 months over a period of 16 months.We assessed the proportion of caregivers who perceived that dementia is a terminal disease and the extent to which it changed between the previous time points. Using mixed effects multinomial regression models, we assessed factors associated with caregivers' perception and changes in perception between consecutive time points.At baseline, only 26% of the caregivers reported correctly that dementia is a terminal disease. This changed over time, not necessarily toward a correct perception. Caregivers of PwSDs with an acute medical condition in the last 4 months (risk ratio [RR] 2.19, 95% CI 1.21, 3.97) and those with higher functional dependence (RR 1.11, 95% CI 1.01,1.22) were more likely and those of older PwSDs were less likely (RR 0.87, 95% CI 0.81, 0.93) to perceive dementia as a terminal disease. Caregivers of PwSDs who had experienced an acute medical problem in the last 4 months (RR 1.58, 95% CI 1.00, 2.49) were also more likely to shift their perception toward being correct. Caregivers of PwSDs who had more agitation behaviors were more likely to shift their perception toward being incorrect (RR 1.04, 95% CI 1.00,1.07) CONCLUSIONS AND IMPLICATIONS: Few caregivers perceived dementia as terminal, and this perception changed over time and differed according to age and the health status of PwSD. Results have implications regarding the frequency of prognostic discussions.