Family caregiver perceptions of end of life in persons with and without dementia

Background: We compare the End of Life [EoL] period, the period of decline to death, for persons with dementia [PwD] to those without dementia, examining the duration and number of stages, and their precipitating events. Methods: In this cross-sectional study, 70 primary caregivers of decedents were interviewed. Frequencies were compared using the McNemar statistical test. Results: PwD were more likely to be female and older, compared to those without dementia. For PwD, the reported duration of the EoL period was significantly longer, involved more stages, and included a longer first stage. Precipitating events for EoL were more likely to include cognitive decline for PwD, but for those without, more likely to involve a new medical diagnosis or decline in health status. Discussion: End of Life as the final stage of development differs significantly between the two populations in length and other parameters. This has considerable implications for the experiences of PwD.