AIHW releases 10-year dementia data improvement plan

The Australian Institute of Health and Welfare (AIHW) has released the National Dementia Data Improvement Plan 2023–2033, outlining activities to improve national dementia data over 10 years to monitor dementia and provide an evidence base for effective policy development, service provision and planning.

This plan is for policymakers, researchers, health, disability, aged care and social support service providers and national data custodians who play a role in the collection, management and/or reporting of data on dementia in Australia, and who use data to inform dementia policy, service provision and planning.

More than 400,000 Australians are living with dementia in 2023 and according to AIHW the number is expected to double by 2058, due to growth and ageing of Australia’s population. The plan aims to deliver improved data outcomes for people with dementia and their carers in Australia by improving national dementia data for population-level monitoring, research and reporting.

The five specific goals of the plan are that by 2033 the country will have: robust dementia prevalence and incidence data; national dementia data available and reported regularly in key monitoring areas; improved data in priority population groups; data within wider national data linkages; and harmonised dementia data collected across sources.

The data improvement activities outlined in the plan involve changes to prioritisation, collection, interoperability and reporting of national dementia data by governments, researchers, service providers and other national data custodians.

Such activities include creating new ongoing data sources (including collecting new administrative data, electronic health data or conducting surveys), expanding existing data collections, performing studies to provide data that fills in key data gaps or quality issues, linking data across existing data sets to expand and enhance dementia data resources, implementing standard concepts and classifications, and developing and implementing methods to improve dementia monitoring and reporting.

The plan aims to fill data gaps across 14 identified areas to meet the needs of the AIHW National Centre for Monitoring Dementia (NCMD) and data development needed to assess the performance of the National Dementia Action Plan (NDAP). These areas include:

1. Risk and protective factors for dementia
2. Dementia awareness and stigma
3. Dementia prevalence and incidence
4. Timeliness of dementia diagnosis
5. Dementia type
6. Dementia severity and progression
7. Dementia diagnosis and management
8. Collection and reporting of dementia and other health conditions in aged care data
9. First Nations people-specific healthcare data on dementia
10. Other care and support services used by people with dementia and their carers
11. The workforce treating and caring for people with dementia
12. Comorbidities in people with dementia
13. Informal carers of people with dementia, including their needs and outcomes
14. Direct and indirect costs of dementia to the Australian economy.

The AIHW has developed the plan in consultation with the Australian Government Department of Health and Aged Care (DoHAC), the AIHW Dementia Expert Advisory Group and the DoHAC Dementia Expert Reference Group (DoHAC 2022b).

Plan reviews will occur following the NDAP release and evaluations. Proposed dates for release and/or evaluation of the NDAP and the NCMD are 2024, 2025, 2028 and 2032.

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