Measuring dementia incidence within a cohort of 267,153 older Australians using routinely collected linked administrative data

To estimate dementia incidence rates using Australian administrative datasets and compare the characteristics of people identified with dementia across different datasets. This data linkage study used a cohort of 267,153 from the Australian 45 and Up Study. Participants completed a survey in 2006–2009 and subsequent dementia was identified through pharmaceutical claims, hospitalisations, aged care eligibility assessments, care needs at residential aged care entry and death certificates. Age-specific, and age-standardised incidence rates, incidence rate ratios and survival from first dementia diagnosis were estimated. Estimated age-standardised dementia incidence rates using all linked datasets was 16.8 cases per 1000 person years for people aged 65+. Comparing incidence rates to the global published rates suggested 77% of cases were identified but this varied by age with highest coverage among those aged 80–84 years (92%). Incidence rate ratios were inconsistent across datasets for: sex, socio-economic disadvantage, size of support network, marital status, functional limitations and diabetes. Median survival from first dementia diagnosis ranged from 1.80 years in the care needs dataset to 3.74 years in the pharmaceutical claims dataset. Characteristics of people identified with dementia in different administrative datasets reflect the factors that drive interaction with specific services; this may introduce bias in observational studies using a single data-source to identify dementia.