Measures 8.4–8.5: Improved national data on people living with dementia

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

However, Australia still has some major dementia data gaps. The biggest data gaps are:

  • not knowing the overall number of people who currently have dementia (dementia prevalence), or the number being newly diagnosed each year (dementia incidence)
  • being unable to identify who has dementia and who does not among people accessing existing services.

Improved national data will depend on a commitment to high-quality and consistent data inputs that represent all the different people living with dementia in Australia. For more information, see Improving Australia’s dementia data for national action.

The Action Plan includes two measures of progress related to data:

  • 8.4 Improved national data sources (e.g. surveys, national minimum datasets) that include data on dementia, and dementia among high priority groups, including Aboriginal and Torres Strait Islander (First Nations), CALD, regional, rural and remote and other diverse communities
  • 8.5 Improved national data for measuring the number of people living with dementia.

To track these two measures of progress, the AIHW will conduct regular reviews of known data gaps and ongoing data development activities, and assess whether progress is being made on the following indicators:

  • better estimates of the number of people living with dementia
  • more national data sources include dementia information
  • better dementia data on high priority groups.

A framework for improving dementia data

The Australian Institute of Health and Welfare (AIHW), has published the National Dementia Data Improvement Plan 2023–2034 which outlines activities to improve national dementia data over 10 years to monitor dementia and provide an evidence base for effective policy development, service provision and planning. Since the release of the data improvement plan in 2023, the 3 short-term goals listed in the Dementia Data Improvement Plan have been achieved, and two-thirds (28 out of 42) of the activities are in progress or completed, but there are still many gaps, the most relevant for the Action Plan are outlined under the indicators below. 

For more detailed information about how the AIHW is leading efforts to improve dementia data, see the National Centre for Monitoring Dementia website.


Better estimates of the number of people living with dementia

  • Indicator

    Better estimates of the number of people living with dementia.

  • Baseline value

    Substantial limitations

  • Latest value

    Baseline value only

  • Progress

    To be provided in future updates

Overall, the AIHW’s assessment is that there are substantial limitations to estimates of prevalence in Australia, and better data are needed. Information on incidence (new dementia cases) has even more limitations, as it requires additional data such as whether a diagnosis was made close to symptom onset.

The following reports by the AIHW National Centre for Monitoring Dementia present information on current dementia prevalence estimates and approaches to improve future estimates. They also discuss current estimates of incidence:


More national data sources include dementia information

  • Indicator

    More national data sources include dementia information.

  • Baseline value

    Partial achievement

  • Latest value

    Baseline value only

  • Progress

    To be provided in future updates

Overall, the AIHW’s assessment is that there is partial achievement of this indicator, as some national data sources include useful information on dementia, but there are key data sources that do not.

In conducting this assessment, data was considered ‘useful’ if they were:

  • of high quality, meaning the data accurately identify who has dementia and who does not have dementia
  • consistent, meaning that the same method for recording dementia is used, so that comparisons can be made over time and between data sources
  • representative, meaning the data accurately represent the characteristics of the people we want to understand.

The AIHW article Improving Australia’s dementia data for national action outlines the major routinely or regularly collected data sources currently used to monitor dementia in Australia, including a report card on each source’s ability to monitor dementia (table DEM.1). Of the 11 data sources considered in the report card:

  • 8 have improved or remained stable since 2020
  • progress is unconfirmed for 2 data sources (GP and specialists; aged care assessments)
  • one data source (the Aged Care Funding Instrument (ACFI)) has been discontinued. The loss of health condition data collected at the time of entry to residential aged care presents a substantial obstacle to dementia monitoring, particularly for people accessing residential aged care (AIHW 2024).


Better dementia data on high priority groups

  • Indicator

    Better dementia data on high priority groups.

The desired outcome is that over time more national data sources will include useful information on dementia among high priority groups.

  • Baseline value

    Substantial limitations

  • Latest value

    Baseline value only

  • Progress

    To be provided in future updates

Overall, the AIHW’s assessment is that there are substantial limitations to dementia data capturing high priority groups as detailed below.

High priority groups are those at higher risk of developing dementia or facing barriers to equitable access to services, such as First Nations people, people from culturally and linguistically diverse (CALD) backgrounds, people living in rural and remote areas, and people who identify as LGBTQI+.

Dementia prevalence and caregiver strain can be higher in these populations and there can be cultural barriers to accessing support, both for people living with dementia and their carers (Gilbert et al. 2022; Lo Giudice et al. 2016; Radford et al. 2019). However, these groups are historically under-represented in routine data and significant improvements are needed in national data for monitoring and reporting on dementia among all but one of these priority groups (people living in rural areas).

In conducting this assessment, data was considered ‘useful’ if they were:

  • of high quality, meaning the data accurately identifies who has dementia and who does not have dementia
  • consistent, meaning that the same method for recording dementia is used, so that comparisons can be made over time and between data sources
  • representative, meaning the data accurately represents the characteristics of the people we want to understand.

A review of dementia data for high priority groups is summarised in Table 8.4.

The Dementia in Australia report includes current data on dementia among First Nations people, culturally and linguistically diverse people and dementia in other priority groups.

Table 8.4: Dementia data availability for priority groups
Priority groupAssessment of data availability

First Nations Australians

Some data available; important limitations exist

Data limitations include:

  • inconsistent identification of First Nations people in existing national administrative data sources
  • a lack of representation of First Nations people in key national health-related surveys
  • no national data on how First Nations people use and access culturally safe services for diagnosing and managing dementia.

People from culturally and linguistically diverse (CALD) backgrounds

Some data available; substantial improvements are still needed

National data sources do not comprehensively capture information on CALD groups and often rely on proxy measures such as country of birth and language spoken at home.

People living in rural and remote areas

Good data available; some improvements could be made

There are generally good data to report on various geographical breakdowns for people living in rural areas, such as by Primary Health Network (PHN) and smaller ABS Statistical Areas. Reporting of dementia statistics by small geographies can be limited by small counts and confidentiality requirements.

There are limited public data on some government programs that specialise in rural areas and are essential for people living with dementia, such as:

  • the Multi-Purpose Services Program, which provides integrated health and aged care services to regional and remote communities in areas that can't support both a separate aged care home and hospital
  • the National Aboriginal and Torres Strait Islander Flexible Aged Care Program, which provides culturally appropriate aged care to older First Nations people, mainly in rural and remote areas.

People with other disability

Some data available; important limitations exist

At present, there are limited data that bring together health, welfare, and disability support services. The specific needs of those living with dementia and other disabilities (physical, intellectual, or other medical conditions) are not well understood. Improvements in consistent definitions of disability, easier data sharing and linkage, and regular collection of disability data are essential to better understanding this group, and to make linked data more powerful. The inclusion of long-term health conditions in the 2021 Census has been an important improvement for this group. Data improvements are driven by a Data Improvement Plan, which is part of the Disability Strategy 2021–2031.  The National Disability Data Asset will aim to give a more complete picture of the life experiences of people with disability, including people with dementia.

People with younger onset dementia and children living with dementia

Some data available; important limitations exist

People with younger onset dementia and childhood dementia are under-reported in current national administrative data sources, and low numbers can limit the level of reporting possible. Data from the National Disability Insurance Scheme are an important new source of information for people aged under 65 living with dementia, and will be included in the National Disability Data Asset.

People who identify as LGBTQI+

Little data available; substantial improvements are still needed

LGBTQI+ people have been invisible in Australian data collections until recently, and Australia still has a long way to go in accurately reflecting this community, as well as their care needs and the challenges they face in accessing them. Reporting of national statistics often exclude this group due to privacy concerns with reporting for a small number of people.

There have been recent improvements such as the ABS Standard for sex, gender, variations of sex characteristics and sexual orientation variables.

Veterans living with dementia

Some data available; important limitations exist

There are limited data in Australia to monitor the needs and outcomes of veterans with dementia. Improved linkage of administrative data on veterans (such as data held by the Department of Veterans Affairs), and data from other health and welfare services, would improve our understanding of this population.

People at higher risk of repeated head injuries

Some data available; important limitations exist

There are limited data on people at higher risk of repeated head injuries and of chronic traumatic encephalopathy (CTE), which is linked to dementia. National initiatives that prioritise better data developments include the National Sports Injury Data Strategy, the Australian Sports Brain Bank and the Australian Veterans Brain Bank.

People experiencing, or at risk of homelessness 

Little data available; substantial improvements are still needed

Better data are needed to understand the impact among people with dementia of experiencing or being at risk of homelessness. This group may be less likely to access government services and so may not be captured in routinely collected data; key surveys for monitoring dementia also exclude people without a fixed address such as those experiencing homelessness.

 

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