National Dementia Data Improvement Plan 2023–2033

Under the Indigenous Australians Health Programme, 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 (DoHAC 2023). 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 2023).

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 First Nations people with dementia are not available, as the health conditions of people accessing First Nations-specific primary health care are not included in the OSR and nKPIs are not designed to monitor the prevalence of health conditions.

The lack of national data on people with dementia who use First Nations people-specific primary health care limits understanding of the patterns and outcomes from primary health care service use by First Nations people with dementia. This represents a large gap, particularly 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).

Broadly, there are limited data on management of dementia among First Nations people living with dementia. 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 for First Nations people who live in regional and remote areas.

Proposed data improvement activities

There are 2 main activities proposed to improve data First Nations-specific health care data on dementia. These include activities to:

• explore availability and quality of data on people with dementia accessing First Nations-specific primary health care services
• incorporate dementia data in Regional Insights for Indigenous Communities (RIFIC) website.

Each activity provides information on the intended outcome, priority rating, level of investment required, timeframe for completion and who is responsible for undertaking for the activity.

However, there are several other activities in this plan that would also improve data on First Nations people with dementia, including:

• ensure dementia data are consistently collected in core data sets (Activity 5a detailed under Dementia type)
• incorporate dementia data in enduring national linked data sets to meet the needs of dementia monitoring (Activity 3a detailed under Dementia prevalence and incidence)
• assess new self-reported dementia data in the 2021 Census (Activity 3d detailed under Dementia prevalence and incidence).