Cohort profile: Dementia in the Registry of Senior Australians

Purpose Clinical quality registries (CQRs) are being established in many countries to monitor, benchmark, and report on the quality of dementia care over time. Case ascertainment can be challenging given that diagnosis occurs in a variety of settings. The Registry of Senior Australians (ROSA) includes a large cohort of people with dementia from all Australian states and territories identified using routinely collected aged care assessment data. In ROSA, assessment data are linked to information about aged and health service use, medicine dispensing, hospitalisations and the National Death Index. The ROSA dementia cohort was established to capture people for the Australian dementia CQR currently in development who may not be identified elsewhere.
Participants There were 373 695 people with dementia identified in aged care assessments from 2008 to 2016. Cross-sectional analysis from the time of cohort entry (e.g. when first identified with dementia on an aged care assessment) indicates that individuals were 84.1 years old on average, and 63.1% were female. More than 44% were first identified at entry to permanent residential aged care. The cohort recorded more severe cognitive impairment at entry than other international dementia registries.
Findings to date The cohort has so far been used to demonstrate a declining prevalence of dementia in individuals entering the aged care sector, examine trends in psychotropic medicine prescribing, and to examine the impact of dementia on aged care service use and outcomes.
Future plans The ROSA dementia cohort will be updated periodically and is a powerful resource both on its own and as a contributor to the Australian dementia CQR. Integration of the ROSA dementia cohort with the dementia CQR will ensure that people with dementia using aged care services can benefit from the ongoing monitoring and benchmarking of care that a registry can provide.