The impact of dementia on aged care service transitions in the last five years of life

OBJECTIVE To investigate the impact of dementia on aged care service use at end-of-life. METHODS Our retrospective data linkage study in New South Wales, Australia, used survey data from participants in the 45 and Up Study who died between July 2011-June 2014 linked to routinely collected administrative data for 2006-2014. We investigated movement between aged care "states" (No Services, Home Care including Home Support and Low-and High-Level Home Care and Residential Care) in the last five years of life. The dementia cohort comprised decedents with a dementia diagnosis recorded in hospital records, death certificates or who had claims for dementia-specific medicines prior to death (n = 2,230). The comparison cohort were decedents with no dementia diagnosis, matched 1:1 on age-at-death, sex, income and location. RESULTS Compared to those without dementia, people with dementia were more likely to: use home care (67 versus 60%, P < 0.001), enter residential care (72 versus 30%, P < 0.001) and stay longer in residential care (median 17.9 versus 12.7 months, P < 0.001). Five years before death, more people with dementia were within residential care (6 versus 4%; RR = 1.61, 95%CI = 1.23-2.10) and these rates diverged at the end-of-life (69 versus 28%, RR = 2.48, 95%CI = 2.30-2.66). Use of home-based care was higher among people with dementia five years from death (20 versus 17%; RR = 1.15, 95%CI = 1.02-1.30) but lower at end-of-life (13 versus 24%, RR = 0.55, 95%CI = 0.49-0.63). CONCLUSION Dementia-specific aged care trajectories were dominated by residential care. Home care use declined towards end-of-life for people with dementia and may not be meeting their needs.