Aged care and support services available to people with younger onset dementia
While there are a range of aged care services, as well as dementia-specific services, available for those in need of support, they may not be suitable for people living with younger onset dementia. For further information about aged care see Overview of Australia’s aged care system. Services such as specialist disability accommodation provided through the NDIS or financial support through the Disability Support Pension are generally considered more appropriate options for younger people compared with residential aged care homes (see Support services for people with younger onset dementia).
The Royal Commission into Aged Care Quality and Safety in its final report made a high priority recommendation that all people under the age of 65 currently living in residential aged care homes should be moved out of residential aged care and into other, more appropriate care types (Royal Commission, 2021). Through the Younger People in Residential Aged Care Strategy 2020–25, the Australian Government has committed to ensure that apart from exceptional circumstances, no person under the age of 65 lives in residential aged care. For the most recent data available to track progress being made towards these targets, see Younger people in residential aged care.
People with younger onset dementia may be eligible for support through the National Disability Insurance Scheme (NDIS) (NDIA 2023) and financial support through the Disability Support Pension (Services Australia 2023), in addition to aged care services.
National Disability Insurance Scheme (NDIS)
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. Through this scheme people are provided with funding to access a range of support services and programs, including assistance with daily personal activities (such as gardening, household chores and meal preparation), home modifications, programs that enable and encourage participation in work or social activities, and therapeutic services. People with younger onset dementia who entered the NDIS program prior to age 65 can continue accessing NDIS services until they access aged care services, are aged 65 or older and enter permanent residential aged care, or choose to leave the NDIS.
People diagnosed with dementia who are under the age of 65 may be eligible for support from the NDIS, but not all people with younger-onset dementia access support from the NDIS. These data should therefore be interpreted with caution as the data are based on services that reach a limited number of people.
Disability Support Pension
The Disability Support Pension provides financial help for people with an on-going physical, intellectual or psychiatric condition that prevents that person from working (such as people with younger onset dementia). This pension is available to people aged 16 and over (who are less than pension age), with eligibility and payment amounts based on the person’s condition and level of impairment, and their assessable income and assets. Data on the number of people with younger onset dementia are not available in the current report. The AIHW have previously reported that 71% of people with younger onset dementia who were dispensed a dementia-specific medication received a Centrelink payment (AIHW 2022).
National Disability Insurance Scheme
This section reports on the number of approved NDIS plans for people with younger onset dementia. People who were aged between 30 and 64 when they were first approved for a NDIS plan for younger onset dementia are included.
The NDIS data are updated quarterly. In this report, the number of approved plans for people with younger onset are reported as at 31 December 2024 (using data from the December 2024 quarter: 1 October to 31 December 2024) and is compared to 31 March 2023 (using data from the March 2023 quarter: 1 January to 31 March 2023).
These data come from AIHW analysis of NDIS data in the Person Level Integrated Data Asset (PLIDA) in the Australian Bureau of Statistics’ DataLab. Refer to Technical notes for further information on the NDIS and classification of younger onset dementia.
Residential aged care
This section previously used health condition data from the Aged Care Funding Instrument (ACFI) to report on use of residential aged care and care needs for people with dementia aged under 65. In October 2022, the ACFI was replaced with the Australian National Aged Care Classification (AN-ACC) funding model, which does not capture health condition information. It is therefore not possible to identify people with dementia using the AN-ACC, and the most recent data for this section are from 2021–22 with no further updates. The AIHW is working with the Department of Health, Disability and Ageing to determine appropriate methods to capture data on people living with dementia in aged care.
The ACFI captured the day-to-day care needs that contribute the most to the cost of providing individual care. The ACFI appraisal centred on assessing an individual’s care needs and consists of 12 needs-based questions, categorised into 3 domains; Activities of daily living, cognition and behaviour, and complex health care.
Ratings for each domain were used to determine the level of funding required and to assign care. High levels of care were indicated for those who need almost complete assistance with all tasks. This included providing 24-hour care, either by or under the supervision of registered nurses, combined with support services, personal care services, and allied health services. For more information about this data source, see the Residential aged care section.
Not all people with younger onset dementia access support from the NDIS. There are ongoing efforts to improve post-diagnostic support uptake, like the NDIS, for people living with younger onset dementia.
Work is underway to improve reporting on support services for people living with younger onset dementia. See 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 of the National Dementia Action Plan indicators dashboard for more information on the progress of these efforts and insights into who is accessing these services.
Through the Younger People in Residential Aged Care Strategy 2020–25, the Australian Government has committed to ensure that apart from exceptional circumstances, no person under the age of 65 lives in residential aged care. For the most recent data available to track progress being made towards these targets, see Younger people in residential aged care.
People with younger onset dementia accessing the National Disability Insurance Scheme
As at 31 December 2024, there were 9,646 approved NDIS plans for people with younger onset dementia. The number of plans has increased each quarter since 31 March 2023, with over 1,600 additional plans approved over that period.
Among people with an approved NDIS plan for younger onset dementia as at 31 December 2024 with known gender, age, Indigenous status, cultural and linguistic diversity status and accommodation type:
- 5.9% (482 plans) were for people that identified as Aboriginal and/or Torres Strait Islander (First Nations)
- 16% (1,466 plans) were for people from culturally or linguistically diverse backgrounds
- 16% (1,591 plans) were for people aged under 65 and living in residential aged care and 11% (1,042 plans) were for people living in supported independent living.
- 68% were for people that lived in Metropolitan areas and 23% were for people that lived in Rural towns (50,000 people or less).
See the National Dementia Action Plan indicators dashboard for further information on NDIS plans for First Nations people, people with culturally and linguistically diverse backgrounds, and people living in rural and remote areas.
People with younger onset dementia in residential aged care
This section previously used health condition data from the Aged Care Funding Instrument (ACFI) to identify people with dementia. In October 2022, the ACFI was replaced with the Australian National Aged Care Classification (AN-ACC) funding model, which does not capture health condition information. Therefore, the most recent data for this section are from 2021–22, with no further updates. The AIHW is working with the Department of Health, Disability and Ageing to determine appropriate methods to capture data on people living with dementia in aged care.
In 2021–22, around 1,300 people (670 men and 630 women) with dementia aged under 65 were living in permanent residential aged care (Figure 14.5, Table S10.11), representing 35% of all younger people living in residential aged care. People with younger onset dementia aged under 65 were most likely to require high levels of care in the cognition and behaviour domain (88%) and the activities of daily living domain (70%), with a lower proportion requiring high levels of care in the complex health care domain (51%) (see Table S10.16).
Figure 14.5: People with and without dementia living in permanent residential care: number by age and sex in 2021–22
A bar graph showing that for people with dementia, the number of people living in permanent residential care increases gradually with age, peaking at the age group of 85–89, decreasing slightly at age group 90–94 and then dropping off in the 95 and over age group.
NDIA (National Disability Insurance Agency) (2023), Younger People in residential Aged Care Strategy 2020–25, accessed 13 July 2023.
Royal Commission (2021) Final report: Care, Dignity and Respect, Royal Commission, Australian Government, accessed 10 October 2020.
Services Australia (2023) Disability Support Pension, Services Australia, Australian Government, accessed 15 June 2023.