Measure 4.8. More people living with younger onset dementia and children with dementia are accessing and satisfied with diagnostic and post-diagnostic services and supports, including through disability services
Younger onset dementia refers to dementia that develops before the age of 65. Childhood dementia refers to dementia in children, and dementia in young adults that first occurred while they were still children. There are over 100 genetic disorders that can lead to childhood dementia (Elvidge et al. 2023).
The needs and care requirements of people with younger onset dementia, their families and carers are often different from those of older people. Similarly, work by the Childhood Dementia Initiative shows that the needs and care requirements of children with dementia, their families and carers are very different from those of older people. The State of Childhood Dementia in Australia 2024 report has highlighted the need for a coordinated national approach to improve survival and quality of life for children with dementia.
There are no national data to comprehensively track this measure. Some data are available that provide insights on younger people living with dementia who have accessed supports from:
- the National Disability Insurance Scheme (NDIS)
- Dementia Support Australia (DSA).
The indicators shown below should be interpreted with caution as the data are based on services that reach a limited number of people. For example, not all people with younger onset dementia or childhood dementia access these supports, either because they access different supports or no supports at all, and currently available data do not capture satisfaction with services and supports. Further data development is needed for this measure.
People with younger onset dementia accessing NDIS supports
The National Disability Insurance Scheme (NDIS) is an Australian government program that provides funding for people under the age of 65 with a permanent and significant disability. People diagnosed with dementia who are under the age of 65 may be eligible for support from the NDIS.
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Indicator
Number of approved NDIS plans for people living with younger onset dementia.
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Baseline value
9,646 plans in October-December 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 living with younger onset dementia have access to the supports they need, meaning this indicator will increase over time.
Change over time
Future updates of this report will track changes over time for this indicator.
Historical change over time: 2023 to 2024
The number of approved NDIS plans for people living with younger onset dementia increased gradually over 2023 and 2024, from 8,032 plans in the March 2023 quarter to 9,646 plans in the December 2024 quarter (Figure 4.8.1).
Figure 4.8.1: Number of approved NDIS plans for people with younger onset dementia, by quarter, 2023–2024
| Quarter | Number of approved NDIS plans |
|---|---|
| Mar-23 | 8,032 |
| Jun-23 | 8,211 |
| Sep-23 | 8,521 |
| Dec-23 | 8,655 |
| Mar-24 | 8,608 |
| Jul-24 | 9,263 |
| Sep-24 | 9,495 |
| Dec-24 | 9,646 |
Source:
Person Level Integrated Data Asset (PLIDA), 2023–2024, National Disability Insurance Scheme (NDIS), ABS DataLab. Findings based on use of PLIDA data.
Data are presented for this most recent quarter of data only (October to December 2024). The data are limited to people whose age at first approval of their NDIS plan was between 30 and 64 years.
Among approved NDIS plans for people with younger onset dementia:
- half (50%) were for people aged between 30 and 64 and the remaining half (50%) were for people aged 65 and over
- 49% were for women, 51% were for men.
First Nations people
Among approved NDIS plans for people with younger onset dementia:
- 5.9% (482 plans) were for people that identified as Aboriginal and/or Torres Strait Islander (First Nations)
- 94% were for people that identified as non-Indigenous.
Cultural and linguistic diversity status
Among approved NDIS plans for people with younger onset dementia:
- 16% (1,466 plans) were for people from culturally or linguistically diverse backgrounds
- 84% were for people not from culturally and linguistically diverse backgrounds
Accommodation types
Among approved NDIS plans for people with younger onset dementia:
- 16% (1,591 plans) were for people living in residential aged care
- 11% (1,042 plans) were for people living in supported independent living.
‘Supported independent living’ is where funding is provided to deliver support to people living in their own home, such as help with personal care or cooking meals.
Remoteness area
Of approved NDIS plans for people with younger onset dementia:
- 68% were for people that lived in Metropolitan areas
- 7.6% were for people that lived in Regional centres
- 23% were for people that lived in Rural towns (50,000 people or less)
- 1.3% were for people that lived in Remote or Very remote communities or people with a missing remoteness area.
These data come from AIHW analysis of National Disability Insurance Scheme (NDIS) data in the Person Level Integrated Data Asset (PLIDA) in the Australian Bureau of Statistics’ DataLab.
The indicator is the count of approved NDIS plans (including ongoing and newly approved plans) for participants with a primary disability of younger onset dementia. Younger onset dementia was based on the ‘ICD classification of primary disability’ and age at first approval (30–64 years). The AIHW will continue to assess available NDIS data to improve the depth of reporting for this measure of progress.
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.
Remoteness area is classified according to the Modified Monash Model (MMM). People with a missing remoteness area are included with people that lived in Remote or Very remote areas.
Data for population groups are reported where data quality allows. The published population group data describe only NDIS plans for people with known gender, age, Indigenous status, cultural and linguistic diversity status and accommodation type.
For more detailed data, including the counts used to calculate proportions, see the Supplementary data tables.
For more information, see the Technical notes.
Number of post-diagnostic services provided to people living with younger onset dementia or their carers
Dementia Support Australia helps formal and informal care givers supporting a person living with dementia.
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Indicator
Number of people living with younger onset dementia referred to Dementia Support Australia (DSA).
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Baseline value
485 people 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 with younger onset dementia have adequate supports following a diagnosis, meaning this indicator will increase over time.
Change over time
Future updates of this report will track changes over time for this indicator.
Historical change over time: 2019 to 2024
Between 2019 and 2024, the number of people living with younger onset dementia referred to Dementia Support Australia increased from about 345 people to 485 people (Figure 4.8.2).
Figure 4.8.2: Number of people living with younger onset dementia referred to Dementia Support Australia, 2019–2024
Column chart shows an increase in numbers each year from 2019 to 2022, and small decreases in both 2023 and 2024.
| Year | Total referrals |
|---|---|
| 2019 | 350 |
| 2020 | 390 |
| 2021 | 470 |
| 2022 | 510 |
| 2023 | 490 |
| 2024 | 485 |
Numbers presented in tables and visualisations are rounded:
- Numbers between 500 and 999 are rounded to the nearest multiple of 10
- Numbers between 0 and 499 are rounded to the nearest multiple of 5.
Source:
Dementia Support Australia
Age group
Of people living with younger onset dementia referred to Dementia Support Australia in 2024:
- the majority (55%) were aged 60-64
- 26% were aged 55-59
- 20% were aged 54 or less.
Note: Percentages add to more than 100% due to rounding.
Sex or gender
Of people living with younger onset dementia referred to Dementia Support Australia, 60% were male and 40% were female.
Cultural and linguistic diversity status
Among people living with younger onset dementia referred to Dementia Support Australia, 12% (about 55 people) were from culturally or linguistically diverse backgrounds.
First Nations people
Among people living with younger onset dementia referred to Dementia Support Australia, 9% (about 40 people) identified as First Nations people.
Remoteness area
The number of people living with younger onset dementia referred to Dementia Support Australia varied by location:
- 58% lived in Major cities
- 27% lived in Inner regional areas
- 9% lived in Outer regional areas
- 5% lived in Remote or Very remote areas.
Note: Percentages add to less than 100% due to rounding.
This data comes from Dementia Support Australia (DSA). DSA represents a series of federally funded programs run by HammondCare that help formal and informal care givers support a person living with dementia.
DSA data are from 2024. This indicator is the number of people living with younger onset dementia who were participants in the Dementia Behaviour Management Advisory Service (DBMAS), Severe Behaviour Response Teams (SBRT) program, or Needs Based Assessment (NBA) program. DSA defines younger onset dementia as clients who were aged under 65 upon first referral to DSA.
Aggregated demographic data about DSA clients are used in this report. The AIHW has not received any personal information about DSA clients.
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 populations groups are reported for this most recent year of data only and where data quality allowed. The published population group data describe only Dementia Support Australia clients with known gender, age, remoteness, Indigenous status, or cultural and linguistic diversity.
National data on people accessing dementia support services is needed to better understand enablers and barriers to accessing supports, as well as to provide more detailed demographic information than what is currently available.
For more detailed data, including the counts used to calculate proportions, see the Supplementary data tables.
For more information, see the Technical notes.
Elvidge K, Christodoulou J, Farrar M, Tilden D, Maack M, Valeri M, Ellis M, Smith N and the Childhood Dementia Working Group (2023) The collective burden of childhood dementia: a scoping review, Brain, 146(11):4446–4455, doi.org/10.1093/brain/awad242, accessed 6 October 2025.
Childhood Dementia Initiative (2024) State of Childhood Dementia in Australia 2024, Childhood Dementia Initiative, accessed 6 October 2025.