Details of Publication 911 for Project A546:

Waller M, Mishra G & Dobson A. Estimating the prevalence of dementia using multiple linked administrative health records and capture–recapture methodology. Emerging Themes in Epidemiolog, 2017; 14(3): 2017-9-1 0

Background: Obtaining population-level estimates of the incidence and prevalence of dementia is challenging due to under-diagnosis and under-reporting. We investigated the feasibility of using multiple linked datasets and capture–recapture techniques to estimate rates of dementia among women in Australia.Methods: This work is based on the Australian Longitudinal Study on Women’s Health. A random sample of 12,432 women born in 1921–1926 was recruited in 1996. Over 16 years of follow-up records of dementia were obtained from ?ve sources: three-yearly self-reported surveys; clinical assessments for aged care assistance; death certi?cates; phar-maceutical prescriptions ?lled; and, in three Australian States only, hospital in-patient records.Results: A total of 2534 women had a record of dementia in at least one of the data sources. The aged care assessments included dementia records for 79.3% of these women, while pharmaceutical data included 34.6%, death certi?cates 31.0% and survey data 18.5%. In the States where hospital data were available this source included dementia records for 55.8% of the women. Using capture–recapture methods we estimated an additional 728 women with dementia had not been identi?ed, increasing the 16 year prevalence for the cohort from 20.4 to 26.0% (95% con?dence interval [CI] 25.2, 26.8%).Conclusions: This study demonstrates that using routinely collected health data with record linkage and capture–recapture can produce plausible estimates for dementia prevalence and incidence at a population level.Keywords: Dementia, Prevalence, Incidence, Linked data, Capture–recapture