National Dementia Data Improvement Plan 2023–2033

Dementia is a significant and growing health and aged care issue in Australia. High quality and comprehensive dementia data are needed to monitor dementia in Australia and inform evidence-based policy, service provision and planning. 

Specific goals of the plan are that by 2033, Australia will have:

• robust dementia prevalence and incidence data
• national dementia data available and reported regularly in key monitoring areas
• improved dementia data in priority population groups 
• dementia data within wider national data linkages
• harmonised dementia data collected across sources.

Achieving one or more of the above goals would greatly improve data available to effectively deliver and evaluate policies and services aimed at improving the lives of people with dementia and their carers in Australia. 

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. The plan will also guide activities to be undertaken by the AIHW National Centre for Monitoring Dementia, and activities required to assess the performance of the National Dementia Action Plan.

Proposed activities to improve dementia data in Australia are prioritised using 4 criteria: alignment to fill dementia data needs for monitoring and informing policy and planning, providing foundational data, dependencies on the development or availability of other data and whether it can advance data for priority groups. The plan also details the level of investment and timeframes required to complete each activity. 

High-priority data improvement activities include:

• conduct nationally representative survey/s of dementia awareness, risks and attitudes in the Australian community
• collect representative data on dementia awareness and attitudes among priority groups (including First Nations people and culturally and linguistically diverse (CALD) groups)
• collect data on the experiences of people living with dementia and their carers (including experience of stigma and discrimination, diagnosis and management, and interactions with service providers)
• collect data on experiences of people with dementia and their carers among priority groups (including First Nations people and CALD groups)
• investigate known and emerging risk and protective factors for dementia and their impacts
• link dementia onset data to clinical records containing date of dementia diagnosis and calculate timeliness of diagnosis 
• create guidelines for collecting dementia data in aged care assessments and include training information on dementia data collection in assessor training 
• incorporate dementia diagnosis information in national aged care data collections
• develop dementia identifiers and incorporate into existing data sets
• explore availability and quality of data on people with dementia accessing First Nations-specific primary health care services
• explore patterns of service use, transitions of care and access of services relative to need for people living with dementia using linked data
• collect data on the knowledge of dementia, risk factors, risk reduction strategies, and capability among the workforce caring for and supporting people with dementia
• incorporate dementia data in enduring linked data assets to meet the needs of dementia monitoring
• increase coverage of existing data for national dementia incidence monitoring
• investigate approaches to estimate the national prevalence of dementia
• assess new self-reported dementia data in the 2021 Census
• estimate dementia prevalence in priority population groups
• ensure dementia data are consistently collected in core data sets.

The plan is designed to be flexible and evolve with changes in dementia data sources, progression of the National Dementia Action Plan, new analysis methods, consultations, and improvements in key sector data and Australia’s broader data infrastructure.