Date and Time

Friday, November 13, 2026, 9:30 AM - 9:45 AM

Theme / Track

Service delivery, workforce and reform

Presentation Format

Concurrent

Background The Australian Institute of Health and Welfare (AIHW) commissioned a project aimed to identify opportunities to improve the collection, availability and quality of data relating to Aboriginal and Torres Strait Islander people living with dementia or mild cognitive impairment (MCI) who attend Aboriginal-specific primary healthcare services. Methods Guided by an Aboriginal and Torres Strait Islander Data Governance Group, this four-phase project included: (1) desktop review describing existing Aboriginal and Torres Strait Islander dementia data collections; (2) qualitative key informant study involving 28 Aboriginal-specific primary healthcare interest holders; (3) national cross-sectional survey of Aboriginal-specific primary healthcare services (n=30); (4) development of recommendations with input from a national panel of experts. Results The desktop review found no dementia data collections based on direct reports from Aboriginal-specific primary healthcare services and that current prevalence estimates rely on a small number of cross-sectional studies in selected Australian jurisdictions. Key informant yarns and survey results highlighted multidimensional, interrelated factors influencing poor data quality. These included underdiagnosis, clinical complexity of dementia, competing priorities, limited access to specialist cognition services, non-standardised assessment and documentation processes, limited software system interoperability, variable workforce capability, clinical inertia and dementia-related stigma. Future needs included strong data governance frameworks, two-way data sharing and improved dementia training for service staff. Input from expert panel members refined draft recommendations and provided invaluable implementation suggestions. Discussion Findings informed health system, health service, clinician and Community-level recommendations for improving the availability and quality of dementia and MCI data in Aboriginal-specific primary care services.

Keywords

Aboriginal and/or Torres Strait Islander, Dementia

Authors

Dr Mary Belfrage, Department of Medicine, University of Melbourne
Dr Bonnie Martin Giles, Department of Medicine, University of Melbourne
Prof Dina LoGiudice, Department of Medicine, University of Melbourne
Dementia Data Development Project Data Governance Group
Dementia Data Development Project Research Working Group