Measure 5.2: People living with dementia and their carers find it easier to navigate the health, aged care and disability support systems to access the services and supports they need
Carers often take responsibility for navigating health, disability, and aged care systems to find appropriate services and support. Siloed systems, complex referral pathways and administrative processes can be overwhelming and lead to poorer outcomes for people living with dementia. Fragmentation of care sectors can lead to delays in receiving care and poorer outcomes for people living with dementia.
There are no national data to monitor the experiences of navigating care by people living with dementia. Some data that provide insights into the experiences of carers of people living with dementia are available from:
- the Carer Wellbeing Survey (CWS)
- the National Carer Survey (NCS).
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.
The indicators shown below should be interpreted with caution as the data may under-represent carers who are not engaged with carer support organisations, and they do not capture the experiences of people living with dementia who do not have a carer.
Assistance navigating government services
The desired outcome is that more people living with dementia and their carers receive helpful assistance to support them to make, communicate and participate in decisions regarding the services they receive, meaning this indicator should increase over time.
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Indicator
Proportion of carers of people living with dementia who received assistance navigating government services.
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Baseline value
47% of carers in 2024
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Latest value
Baseline value only
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Progress
To be provided in future updates
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Indicator
Proportion of carers of people living with dementia who received assistance navigating government services, who reported that assistance was helpful.
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Baseline value
65% of carers in 2024
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Latest value
Baseline value only
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Progress
To be provided in future updates
Change over time
Future updates of this report will track changes over time for the above two indicators.
Historical change over time: 2023 to 2024
There was a statistically significant increase in the proportion of carers of people living with dementia who received assistance navigating government services, from 41% in 2023 to 47% in 2024. There was no significant difference in the proportion of carers who received assistance navigating government services, who reported that assistance was helpful, being 69% in 2023 and 65% in 2024.
In 2024, the proportion of carers of people living with dementia who received assistance navigating government services that was helpful did not differ significantly across population groups:
- 65% of women and 67% of men
- 64% of carers living in Major cities and 68% of carers living in regional or remote areas.
These data come from AIHW analysis of the Carer Wellbeing Survey (CWS).
The CWS is an annual national survey into the wellbeing of carers and their support services. In the most recent year available (2024), 9,166 carers were surveyed across Australia.
AIHW analysis of CWS data uses weighted percentages. Statistical significance (or non-significance) of differences in proportions between population groups or years for all comparisons of CWS data have been calculated based on a two-proportion z-test using weighted proportions.
While various demographic information is collected in the CWS, those with low counts and/or high relative standard errors are not presented in this report. Data for population groups are reported for this most recent year of data only and where data quality allows. This includes gender and remoteness area.
Remoteness area in the CWS uses the Australian Statistical Geography Standard (ASGS) Remoteness Structure. In this report ‘regional or remote’ incorporates the categories of Inner regional, Outer regional, Remote and Very remote.
While the CWS may under-represent carers who are not well connected with carer organisations and supports, it still provides important insights into the experiences of carers of people living with dementia.
For more detailed data, including the counts used to calculate proportions, see the Supplementary data tables.
For more information, see the Technical notes.
Challenges with accessing government services including health, aged care, and disability services
The desired outcome is that people living with dementia and their carers can access all the services they need, meaning the following four indicators should decrease over time.
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Indicator
Proportion of carers of people living with dementia who found it difficult to find information about aged care services.
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Baseline value
31% of carers in 2024
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Latest value
Baseline value only
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Progress
To be provided in future updates
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Indicator
Proportion of carers of people living with dementia who found it difficult to find information about NDIS and other disability services.
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Baseline value
41% of carers in 2024
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Latest value
Baseline value only
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Progress
To be provided in future updates
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Indicator
Proportion of carers of people living with dementia who were not provided with all the information they needed from GPs.
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Baseline value
23% of carers in 2024
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Latest value
Baseline value only
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Progress
To be provided in future updates
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Indicator
Proportion of carers of people living with dementia who were not provided with all the information they needed from hospitals and community health services.
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Baseline value
30% of carers in 2024
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Latest value
Baseline value only
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Progress
To be provided in future updates
Change over time
Future updates of this report will track changes over time for the above four indicators.
Historical change over time: 2022 to 2024
The proportion of carers who found it difficult to find information about aged care services, was similar in 2022 at 35% and in 2024 at 31%. The proportion of carers who found it difficult to find information about NDIS and other disability services was stable, at 43% in 2022 and 41% in 2024. These differences were not statistically significant.
The proportion of carers who were not provided with all the information they needed from GPs significantly increased from 17% in 2022 to 23% in 2024.
The proportion of carers who were not provided with all the information they needed from hospitals and community health services significantly increased from 25% in 2022 to 30% in 2024.
In 2024, the proportion of carers who found it difficult to find information about what aged care services were available and how to access them:
- did not differ significantly between genders (31% of women and 30% of men)
- did not differ significantly across remoteness areas (30% of carers living in Major cities and 34% of carers living in regional or remote areas).
The proportion of carers who were not provided with all the information they needed from GPs:
- differed significantly between genders (24% of women and 14% of men)
- did not differ significantly across remoteness areas (22% of carers living in Major cities and 25% of carers living in regional or remote areas).
The proportion of carers who were not provided with all the information they needed from hospitals and community health services:
- differed significantly between genders (32% of women and 24% of men)
- did not differ significantly across remoteness areas (31% in Major cities and 30% of carers in regional or remote areas).
These data come from the National Carer Survey (NCS).
Every two years, Carers NSW and the State and Territory Carer Organisations conduct the NCS to better understand what Australia’s carers want and need. The Survey informs research, advocacy, and service design for carers across Australia. In the most recent year with available data (2024), 10,096 carers were surveyed across Australia.
Aggregated data from the NCS was provided by Carers NSW to the AIHW. Statistical significance (or non-significance) of differences in proportions between population groups or years for all comparisons of NCS data have been calculated based on a two-proportion z-test.
While a range of demographic information is collected in the NCS, it is not all presented in this report due to low counts. For the above four indicators, population group data are reported for this most recent year of data only and where data quality allowed.
Remoteness area in the NCS uses the Australian Statistical Geography Standard (ASGS) Remoteness Structure. In this report, ‘regional or remote’ incorporates the categories of Inner regional, Outer regional, Remote and Very remote.
While the NCS may under-represent carers who are not well connected with carer organisations and supports, it still provides important insights into the experiences of carers of people living with dementia.
For more detailed data, including the counts used to calculate proportions, see the Supplementary data tables.
For more information, see the Technical notes.