Measure 4.7. Increased number of people living with dementia and their carers reporting a positive experience of diagnostic and post-diagnostic care
There is no nationally agreed pathway for seeking a dementia diagnosis. People can be referred to several different types of health professionals before a diagnosis is made.
After a diagnosis is made, the availability and quality of supports can vary depending on factors such as where a person lives and the type of help they require. Some people living with dementia describe difficulties with managing their care as they don’t know what supports are available to them. They may be eligible to access services, but the health, aged care and disability support systems can be difficult to navigate.
There are no national data on the experience of diagnostic and post-diagnostic care for people living with dementia, but some data that provide insights are available from:
- The Australian Dementia Network (ADNeT) Registry
- Dementia Australia.
The indicators shown below should be interpreted with caution as the data are based on services that reach a limited number of people.
Data development is underway, with ongoing work to improve the availability of national data to report on diagnostic and post-diagnostic care. Data from the recently conducted Living with Dementia Survey may be added to reporting when they become available.
ADNeT Registry survey respondents who had a positive experience with diagnostic services
While there are no national data on diagnostic experiences for people living with dementia, the Australian Dementia Network (ADNeT) Registry can provide some insights on this measure through survey data gathered from people newly diagnosed with dementia or mild cognitive impairment (MCI) in one of the specialist diagnostic services that have volunteered to participate in the Registry.
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Indicator
Proportion of Australian Dementia Network (ADNeT) Registry survey respondents whose experience with diagnostic services was good or very good.
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Baseline value
90% of respondents in 2024
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Latest value
Baseline value only
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Progress
To be provided in future updates
The desired outcome is that people have positive experiences with diagnostic services. Given that such a large proportion of ADNeT Registry survey respondents already report positive experiences, this indicator should remain stable or increase over time.
This indicator reflects the experience of survey respondents, including both ADNeT Registry participants (with either dementia or MCI) and carers. Their experiences are reported separately below.
Change over time
Future updates of this report will track changes over time for this indicator.
In 2024, there were no notable differences in the proportion of ADNeT Registry participants diagnosed with dementia or MCI who reported having positive diagnostic experiences, by sex, or location (regional areas or Major cities).
Participants diagnosed with mild cognitive impairment (MCI) were slightly more likely to report positive diagnostic experiences (93%) than those diagnosed with dementia (88%) (Figure 4.7).
The ADNeT Registry also collects information on experiences of diagnostic services among carers of people diagnosed with dementia or MCI via a self-completed carer survey. Among the carer respondents, the large majority reported having positive experiences (89% reported a good or very good experience).
Figure 4.7: Experiences with ADNeT Registry diagnostic services among participants diagnosed with dementia or mild cognitive impairment (MCI), 2024
Bar chart shows that most survey respondents had a good to very good experience with diagnostic services.
The ADNeT Registry is a is a clinical quality registry for people newly diagnosed with dementia or mild cognitive impairment (MCI). The ADNeT Registry has expanded in July 2025 to collect post-market surveillance data on disease-modifying therapies that are approved in Australia for people living with dementia or MCI.
The indicator only includes data from people who were diagnosed with dementia or MCI at an ADNeT-registered service. As such, ADNeT Registry data may not be representative of all people being diagnosed with dementia or MCI in specialist diagnostic services across Australia.
This indicator includes those ADNeT participants and their carers who responded to a post-diagnostic survey asking about participants’ health and wellbeing and the experience of clinical care at the participating site.
Data for population groups are reported for this most recent year of data only and where data quality allows. The published population group data describe only ADNeT Registry participants diagnosed with dementia or MCI with known sex or remoteness.
National data on specialist diagnostic services are needed to complement ADNeT Registry data and fully understand the national impact of the Action Plan.
For more detailed data, including the counts used to calculate proportions, see the Supplementary data tables.
For more information on survey response rates and other relevant characteristics, see the Technical notes.
Referrals and use of post-diagnostic supports
After a dementia diagnosis, the availability of adequate supports is essential to ensure people live well with the condition (see the Dementia Australia website for more information on different kinds of post-diagnostic supports).
Limited post-diagnostic services are available in some areas, and when available, may not be culturally appropriate for people from culturally and linguistically diverse backgrounds or Aboriginal and Torres Strait Islander (First Nations) people. Recent evidence suggests that delivery of post-diagnostic supports varies widely and does not always meet clinical guideline recommendations (Low et al. 2023).
Data for the indicators below are based on people participating in the ADNeT Registry and accessing Dementia Australia supports, and while they are not nationally representative data, they provide some insights on referrals to post-diagnostic supports.
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Indicator
Proportion of people participating in the Australian Dementia Network (ADNeT) Registry referred to a post-diagnostic program at the time of a dementia diagnosis.
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Baseline value
66% of participants in 2024
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Latest value
Baseline value only
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Progress
To be provided in future updates
The desired outcome is that more people are supported following a diagnosis, and so this indicator should increase over time.
Change over time
Future updates of this report will track changes over time for this indicator.
In 2024, there were no notable differences in the proportion of people participating in the ADNeT Registry who were referred to a post-diagnostic program at the time of a dementia diagnosis, by sex or region of birth (English-speaking or non-English speaking).
Among people aged under 65, 74% were referred to a post-diagnostic support program, compared with 66% of those aged 65-84, and 62% of those aged 85 and over. Among people living in regional areas, 55% were referred to a post-diagnostic support program, compared with 72% of people living in a major city.
The ADNeT Registry is a clinical quality registry for people newly diagnosed with dementia or mild cognitive impairment (MCI). The ADNeT Registry has expanded in July 2025 to collect post-market surveillance data on disease-modifying therapies that are approved in Australia for people living with dementia or MCI.
The indicator only includes data from people who were diagnosed with dementia (not MCI) at an ADNeT-registered service. As such, ADNeT Registry data may not be representative of all people being diagnosed with dementia in specialist diagnostic services across Australia.
Data for population groups are reported for this most recent year of data only and where data quality allows. The published population group data describe only ADNeT Registry participants diagnosed with dementia with known sex, age, remoteness or region of birth.
National data on specialist diagnostic services are needed to complement ADNeT Registry data and fully understand the national impact of the Action Plan.
For more detailed data, including the counts used to calculate proportions, see the Supplementary data tables.
For more information, see the Technical notes.
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Indicator
Number of people who accessed post-diagnostic supports through Dementia Australia.
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Baseline value
2,394 people in 2023–24
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Latest value
Baseline value only
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Progress
To be provided in future updates
The desired outcome is that more people are supported following a diagnosis, and so this indicator should increase over time.
Change over time
Future updates of this report will track changes over time for this indicator.
Historical change over time: 2022–23 to 2023–24
There was a small increase in the number of people who accessed post-diagnostic supports through Dementia Australia, from 2,312 in 2022–23 to 2,394 in 2023–24.
Age, gender and remoteness area
In 2023–24, among people who accessed Dementia Australia’s Post-Diagnostic Support program, funded by the National Dementia Support Program:
- two-thirds (69%) were women
- one-third (31%) were men
- 41% were aged under 65
- 59% were aged 65 and over
- 37% lived in regional or remote areas.
These data come from Dementia Australia.
Dementia Australia collect data for the purposes of understanding their clientele, what groups in Australia seek or do not seek their supports, and to meet internal and external reporting requirements. While data from Dementia Australia can provide insights on the use of dementia support programs, collecting complete data is not the main task or priority during certain interactions, such as calls to the National Dementia Helpline when a caller is experiencing a level of distress, for example. As such, Dementia Australia data is only indicative of services provided.
This indicator is the number of Dementia Australia clients who accessed the Post-Diagnostic Support Program, funded by the National Dementia Support Program, in 2023–24. Clients include people living with dementia or their carers or family.
The indicator is presented as a raw number because there are currently no suitable denominator data that represent the total number in the target population.
Data for population groups are reported for this most recent year of data only and where data quality allows. This includes age, gender and remoteness area. The published population group data describe only Dementia Australia clients with known gender, age, and/or remoteness.
National data on people accessing dementia-specific support programs is needed to better understand enablers and barriers to accessing supports, and to provide more detailed demographic information.
For more detailed data, including the counts used to calculate proportions, see the Supplementary data tables.
For more information, see the Technical notes.
Low LF, Gresham M and Phillipson L (2023) Further development needed: models of post-diagnostic support for people with dementia, Current Opinion in Psychiatry, 36(2):104–111, doi:10.1097/YCO.0000000000000848.