Reports

Developing mild cognitive impairment and dementia data in Aboriginal and Torres Strait Islander-specific primary healthcare services

Aboriginal and Torres Strait Islander peoples hold rich knowledges, cultural practices and Community and kinship connections that can contribute to protecting brain health across the life course. Although these strengths are enduring, the cumulative effects of colonisation, socioeconomic disadvantage, educational inequity, and high rates of modifiable risk factors and chronic health conditions experienced by Aboriginal and Torres Strait Islander peoples, impact brain health. Accordingly, mild cognitive impairment (MCI, also known as mild neurocognitive disorder) and dementia disproportionately affect Aboriginal and Torres Strait Islander peoples. Population ageing and changing social, environmental and commercial determinants of health are anticipated to lead to a greater future burden of MCI and dementia.

High-quality and comprehensive MCI and dementia data are needed to understand and monitor dementia rates and to inform evidence-based policy, service provision and planning. Yet MCI and dementia data gaps among priority populations, such as Aboriginal and Torres Strait Islander peoples, are consistently recognised across national dementia policy frameworks. This includes the National Dementia Data Improvement Plan 2023–2034 and the National Dementia Action Plan 2024-2034. As a key provider of healthcare for Aboriginal and Torres Strait Islander peoples, Aboriginal and Torres Strait Islander-specific primary healthcare services (APHSs) play a critical role in recognising when people have the signs and symptoms of cognitive impairment. These services are essential to timely detection and diagnosis for people living with MCI and dementia, and for data collection. There is currently no systematic or centralised data collection of Aboriginal and Torres Strait Islander peoples living with MCI or dementia who access APHSs. The current lack of data available on Aboriginal and Torres Strait Islander peoples accessing APHSs limits our understanding of the impact of dementia on health outcomes and patterns of service use, particularly in remote areas where these may be the only accessible services for the local population.

The Australian Institute of  Health and Welfare (AIHW) National Centre for Monitoring Dementia (NCMD) commissioned the Universtiy of Melbourne's OnTRACK team to lead a project  to identify opportunities and strategies to improve the collection, availability and  quality of data relating to Aboriginal and Torres Strait Islander peoples living with MRCI or dementia who attend APHSs.

The objectives for this project were to:

1. Identify the current MCI and dementia data environments within APHSs i.e. current data holdings, collection methods, data users and data use;
2. Identify data needs from Aboriginal and Torres Strait Islander communities and service providers in relation to MCI and dementia and;
3. Develop and provide a rationale for recommendations to improve the availability and quality of MCI and dementia data among Aboriginal and Torres Strait Islander peoples from APHSs, including enablers for systematic collection.

Project findings informed the development of draft recommendations that were reviewed and refined by a national panel of experts. The final 17 recommendations, each with an accompanying rationale, provide advice for the AIHW, other government agencies, and the wider Aboriginal and Torres Strait Islander health sector on key actions needed to improve the availability and quality of MCI and dementia data in APHSs (Executive Summary Table). They cover health system, health service, healthcare provider and Community-individual level recommendations, and are underpinned by three guiding principles: (i) upholding Aboriginal and Torres Strait Islander data governance and data sovereignty, (ii) co-design and collaboration and (iii) strengths-based approaches.

Click here to download a copy of the full report and read the recommendations.