Incorporating dementia data in linked data assets to advance evidence on Dementia in Australia
Date and Time
Thursday, November 12, 2026
Theme / Track
Policy, advocacy, planning and change
Presentation Format
Linking dementia data with national data linkages expands opportunities to better estimate the impact, trajectories and outcomes of people living with dementia in Australia. The AIHW has piloted the integration of two dementia‑specific datasets into the National Health Data Hub (NHDH) and has also added hospital and aged care data to ABS’s PLIDA in partnership with custodians and researchers.
The first pilot links with the Australian Dementia Network (ADNeT) Registry, providing access to a cohort with clinician‑confirmed dementia or mild cognitive impairment, along with demographic and clinical information at diagnosis that is not available in other national administrative data. This enables analysis of individuals’ interactions with health and aged care systems, including Medicare, hospitals and aged care. This analysis will be used to identify dementia cases in national administrative datasets and estimate dementia incidence in Australia.
The second pilot links the Dementia Support Australia (DSA) data, adding clinical information on behaviours and psychological symptoms of dementia (BPSD). This enables analysis of the characteristics, service use and outcomes of individuals referred to DSA services and supports BPSD‑related service and policy planning. Associations between outcomes and the frequency and severity of BPSD can also be examined.
AIHW has also completed a one‑off linkage of hospital and aged care data with the ABS Census and other health datasets in PLIDA. This identified 246,080 people with dementia, the largest number obtained directly from linked data to date. Future work will combine these data with statistical modelling to produce a national estimate of dementia prevalence.
AAG Symposium Title
Using national linked data to study aged care, health, disability and dementia service interfaces
Keywords
Dementia, Diagnosis, Evidence Based Policy, Future Directions, Innovation
Authors
Thao Vu, Australian Institute of Health and Welfare
Nikki Harvey, Australian Institute of Health and Welfare
Justine Parer, Australian Institute of Health and Welfare