9: First Nations people-specific health care data on dementia
There are 3 main activities proposed to improve First Nations-specific health care data on dementia. These include activities to:
- 9a: Explore availability and quality of data on people with dementia accessing First Nations-specific primary health care services
- 9b Incorporate dementia data in Regional Insights for Indigenous Communities (RIFIC) website
- 9c: Improve the identification of First Nations people in linked data assets
There are several other activities in this plan that would also improve data on First Nations people with dementia, including:
- 3a: Incorporate dementia data in enduring national linked data sets to meet the needs of dementia monitoring (described in Dementia prevalence and incidence)
- 3d: Assess new self-reported dementia data in the 2021 Census (described in Dementia prevalence and incidence).
- 5a: Ensure dementia data are consistently collected in core data sets (described in Dementia type)
Each activity provides information on the intended outcome, level of investment required, timeframe for completion and who is responsible for undertaking the activity.
Activity 9a: Explore availability and quality of data on people with dementia accessing First Nations-specific primary health care services
This activity involves working with one or more First Nations-specific primary health care services to explore the availability and quality of data on people with dementia accessing their services. This may involve the collection of aggregated data on people with dementia (for example, specific services provided and information on diagnosis and management of dementia). The quality and limitations of available data would be explored and would identify opportunities for data improvement.
These data may inform proposals regarding a new key performance indicator on people with dementia managed in First Nations-specific primary health care services.
| Outcome | Better data on people with dementia accessing First Nations-specific primary health care, contributing to goal 3 of this plan. |
|---|---|
| Level of investment | Medium |
| Timeframe | Short |
| Responsible stakeholder | AIHW NCMD and external research organisations |
| Progress | The NCMD has commissioned the University of Melbourne’s OnTRACK Centre of Research Excellence to: explore current dementia and mild cognitive impairment (MCI) data environments in First Nations primary health care services funded under the Indigenous Australians’ Health Programme (IAHP); identify data needs from First Nations communities and service providers relating to dementia and MCI; and provide recommendations to improve the availability and quality of MCI and dementia data in IAHP-funded services, including enablers to systematic collection. |
Activity 9b: Incorporate dementia data in Regional Insights for Indigenous Communities (RIFIC) website
This activity involves working with the AIHW Indigenous Group to add national dementia statistics to the Regional Insights for Indigenous Communities (RIFIC) website, including data at smaller geographies where feasible. Currently, data on health conditions among First Nations people aged 50 and over in the RIFIC website are reported from the Australian Bureau of Statistics Census 2021. This activity is dependent on significant dementia data improvements in other data sources to enable reporting.
| Outcome | Better data available on dementia among First Nations people |
|---|---|
| Level of investment | Low |
| Timeframe | Short |
| Responsible stakeholder | AIHW NCMD; AIHW Indigenous Group |
| Progress | Not started. |
Activity 9c: Improve the identification of First Nations people in linked data assets
Identifying Aboriginal and Torres Strait Islander (First Nations) people in administrative data can be challenging due to high rates of missing or incomplete data. This activity involves developing methods to improve identification of First Nations people in an enduring linked national health data set – the National Health Data Hub (NHDH). While individual data sources in the NHDH contain some First Nations identifiers, looking at identification across multiple data sources and across time can improve the quality of identification. This activity can be repeated and refined for additional linked data assets (where assets are prioritised for dementia research and monitoring), and as new data sources are linked to the NHDH.
| Outcome | Better identification of First Nations people in linked data assets to support analysis of service use and outcomes among First Nations people living with dementia. |
|---|---|
| Level of investment | Low |
| Timeframe | Short |
| Responsible stakeholder | AIHW NCMD; AIHW Indigenous Group |
| Progress | The NCMD explored identifiers of First Nations people living with dementia in linked administrative data sets. Findings from this work have been shared with the Department of Health, Disability and Ageing, however, additional work is required before methods can be used for dementia reporting. |
Under the Indigenous Australians Health Programme (IAHP), the Australian Government funds First Nations-specific primary health care organisations to provide prevention, diagnosis, and treatment services via Aboriginal Community Controlled Health Organisations (ACCHOs), community clinics and other facilities (Department of Health, Disability and Ageing 2025). The organisations deliver holistic and culturally appropriate primary health services to communities and are often a first point of contact for First Nations people with dementia. The services can also act as a referral point to other available services like specialist and aged care services and are important for managing risk factors for developing dementia (AIHW 2025).
A range of data are collected from First Nations-specific primary health care organisations for national reporting through the Online Services Report (OSR) and the National Key Performance Indicators (nKPIs). The main purpose of nKPIs are to support continuous quality improvement activity at the organisational level, with the indicators for specific aspects of care provided to clients. The nKPIs are not intended to measure prevalence (or diagnosis) of a condition. Indicators are designed to measure aspects of the treatment or management for specific conditions – such as HbA1c testing and levels for those with type 2 diabetes. Data on dementia-specific services are not funded under the IAHP.
The lack of national data on people with dementia who use First Nations people-specific primary health care represents a large gap, particularly to monitor service use and outcomes in remote areas where First Nations-specific primary health care services may be the only accessible primary health service for the local population (AIHW 2016).
At a national level, data are limited on how dementia is managed among First Nations people. Dementia is often under-recognised and under-diagnosed in First Nations people (Arkles et al. 2010) and international studies have found that minority populations are under-treated with dementia-specific medications, compared to a non-minority population. In addition, data on First Nations people accessing government-subsidised aged care do not capture people who are in certain specialised residential aged care programs, such as the Multi-Purpose Services Program (for people living in rural and remote areas) and the National Aboriginal and Torres Strait Islander Flexible Aged Care Program. This represents a care data gap, especially for First Nations people who live in regional and remote areas.
While the AIHW’s data improvement work programme has been developed with advice from the National Aboriginal Community Controlled Health Organisation, it is important that Aboriginal and Torres Strait Islander peoples continue to decide the story that their data should reveal. In the future this may include additional activities dedicated to improving dementia data among First Nations people, as well as Aboriginal and/or Torres Strait Islander data presented in a way that best reflects community needs and aspirations.
AIHW (Australian Institute of Health and Welfare) (2016) Australia's health 2016, AIHW, Australian Government, accessed 30 August 2023.
AIHW (2025) Dementia in Australia, AIHW, Australian Government, accessed 15 October 2025.
Arkles RS, Jackson Pulver LR, Robertson H, Draper B, Chalkley S and Broe A (2010) Ageing, cognition and dementia in Australian Aboriginal and Torres Strait Islander peoples: a life cycle approach, Neuroscience Research Australia and Muru Marri Indigenous Health Unit, University of New South Wales, accessed 30 May 2023.
Department of Health, Disability and Ageing (DHDA) (2025) Indigenous Australians’ Health Programme, DHDA website, accessed 14 October 2025.