Aged care service use by Indigenous Australians with dementia

Indigenous Australians accessing government-subsidised aged care services tend to be younger and use these services at higher rates as a proportion of the population than non-indigenous Australians (AIHW 2019). Differences in use are due to various factors, including (but not limited to):

  • government policies: Indigenous Australians are identified as 1 of 10 ‘special needs groups’ under the Aged Care Act 1997. As a result of the specific needs of Indigenous Australians, planning for aged care services focuses on Indigenous Australians aged 50 and over rather than age 65 and over for non-Indigenous Australians. However, ultimately, access to aged care services is based on the care needs of each individual. In 2019, the Australian Government published an action plan to support the Aged Care Diversity Framework and address barriers faced by older Indigenous Australians when accessing aged care. For a brief overview of Australia’s aged care system, see Overview of Australia's aged care system.
  • preferred care types and availability of services: Eligible older Australians have access to a variety of government-subsidised services. However, Indigenous Australians may face challenges with accessing services that provide culturally appropriate care. Older Indigenous Australians generally wish to remain in their communities and on Country for as long as possible, and to have access to culturally safe health and aged care services in their own communities, as well as away from their communities when needed. While all government-subsided aged care services are available to Indigenous Australians and should be designed to provide them with appropriate care, there are Indigenous-specific services available (and often preferred) such as the National Aboriginal and Torres Strait Islander Flexible Aged Care Program (NATSIFACP). The aim of this program is to provide quality, flexible aged care for older Indigenous Australians, in a culturally safe environment. Associated NATSIFACP providers work mainly in regional, remote, and very remote areas, and help Indigenous Australians with home care, emergency or planned respite, short-term care and permanent residential care. At 30 June, 2020, NATSIFACP offered almost 1,300 places. It is also important to note that Stolen Generations survivors will all be aged 50 and over and eligible for aged care services by the year 2022—refer to Box 12.1 for more information on this group and how their life experiences could impact their care needs.
  • population age structures: both Indigenous and non-Indigenous Australians are experiencing population ageing, but Indigenous Australians have a younger age structure compared to non-Indigenous Australians.
  • health status: health conditions associated with ageing and with an increased risk of developing dementia are often more common and begin at younger ages among Indigenous Australians. Rates of aged care use are also generally higher for Indigenous Australians than for non-Indigenous Australians.

This page presents information on how Indigenous Australians use aged care services based on data on comprehensive assessments undertaken for people wanting to access government-subsidised aged care services and for those receiving government-subsidised permanent residential aged care. These data have limitations that should be kept in mind when interpreting the information presented, including that there is incomplete information on Indigenous-specific aged care services. For example, data from the National Aboriginal and Torres Strait Islander Flexible Aged Care Program are not included.

Box 12.1: Providing effective health and aged care to Stolen Generations survivors

There were about 33,600 survivors of the Stolen Generations in 2018–19, and by 2022, all will be aged 50 and over and eligible for aged care services (AIHW 2021).

Under racially motivated policies, between 1910 and the 1970s, as many as 1 in 3 Aboriginal and Torres Strait Islander children were forcibly removed from their families and placed in institutions or adopted by non-Indigenous Australian families, where they often experienced trauma and human rights violations (AIHW 2021). These children have become known as the ‘Stolen Generations’. 

Stolen Generations survivors are more likely to experience a range of health, cultural and socioeconomic adverse outcomes compared to other Indigenous and non-Indigenous Australians. Childhood stress and trauma has also been linked as a risk factor for developing dementia in later life among Aboriginal Australians (Radford et al. 2019).

While Stolen Generations survivors often prefer health and aged care services tailored to Indigenous Australians and to receive care in their own homes and communities, these options are not always available. Leading advocacy and expert organisations have called for urgent government action to provide culturally appropriate support and aged care options to survivors (Healing Foundation and Aboriginal and Torres Strait Islander Ageing Advisory Group of the Australian Association of Gerontology 2019). Residential aged care and clinical settings that resemble childhood institutions where removed children were placed can re-trigger trauma (Smith & Gilchrist 2017), so it is essential that health and aged care providers understand the effects of trauma and that care is culturally appropriate and safe (Healing Foundation 2019).

In its final report, the Royal Commission into Aged Care Quality and Safety (Royal Commission) echoed the importance of providing Stolen Generations survivors with appropriate aged care options and further highlighted the importance of ‘…accessible pathways linking Aboriginal and Torres Strait Islanders to the care that they need. To deliver culturally safe pathways to aged care…the Australian Government should ensure that care finders serving Aboriginal and Torres Strait Islander communities are local Aboriginal and Torres Strait Islander people’ (Royal Commission 2021).

Assessment for use of aged care services

Access to government-subsidised aged care services is co-ordinated through the My Aged Care system, in which, after an initial screening to determine eligibility, a person’s needs and types of services are assessed using the National Screening and Assessment Form (NSAF). There are 2 main types of aged care assessments depending on the level of care needed:

  • home support assessments—face-to-face assessments provided by Regional Assessment Services for people seeking home-based entry-level support that is provided under the Commonwealth Home Support Programme
  • comprehensive assessments—provided by Aged Care Assessment Teams for people with complex and multiple care needs to determine the most suitable type of care (home care, residential or transition care). Dementia is a condition commonly prompting a comprehensive assessment (Ng & Ward 2019).

See Aged care assessments for more information on aged care assessments and the types of services available.

Information on people with dementia who completed a comprehensive and/or home support assessment in 2019–20 is available from NSAF data as part of the National Aged Care Data Clearinghouse. Note that further work is needed to develop the NSAF dataset into a comprehensive resource for statistical reporting. Pending further development of the NSAF data set, the statistics presented here may be subject to change.  

Aged care assessments

In 2019–20, just over 8,900 people, or 2.1% of all people who completed an aged care assessment (either a comprehensive or home support assessment) identified as being an Indigenous Australian. Dementia was recorded as a condition contributing to the care needs of over 500 Indigenous Australians, or 5.6% of all Indigenous Australians who completed an aged care assessment in 2019–20.

Among Indigenous Australians who completed an aged care assessment in 2019–20, those with dementia were older than those without dementia. Over half (55%) of Indigenous Australians with dementia were aged 75 and over compared with 24% of Indigenous Australians without dementia (Figure 12.7).

Figure 12.7: Indigenous Australians with and without dementia who completed an aged care assessment in 2019–20: percentage, by age

Figure 12.7 is a bar chart showing the percentage of Indigenous Australians with and without dementia who had completed an aged care assessment in 2019–20 by age. Just over 40% of Indigenous Australians with dementia who completed an aged care assessment, either a home support or a comprehensive assessment, were aged 75 to 84. A further 30% were aged 65–74 years. Indigenous Australians without dementia who completed an aged care assessment tended to be younger than those with dementia, with about three quarters being under the age of 75.

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The majority of Indigenous Australians with dementia (95%) who completed an aged care assessment were living in the community at the time of their assessment. Indigenous Australians with dementia were more likely to be living with family (46% of Indigenous Australians with dementia living in the community) and less likely to be living alone (26%) than non-Indigenous Australians with dementia (20% and 29%, respectively).

Assessment type and setting

Dementia is a common reason for needing a comprehensive assessment. Around 3 in 4 Indigenous Australians with dementia who completed an assessment in 2019–20 (74% or 370 people) completed a comprehensive assessment rather than a home support assessment (26% or 133 people). Of those with dementia who completed a comprehensive assessment, 3 in 5 had dementia recorded as the main condition impacting their care needs (59% or 218 people).

Over half (51%) of Indigenous Australians with dementia who completed a comprehensive assessment and 90% who completed a home support assessment, completed the assessment in their own home. Comprehensive assessments can also take place in a hospital, and 1 in 4 Indigenous Australians with dementia (27%) completed their comprehensive assessment while in a hospital setting.

Co-existing health conditions

People with dementia typically have other co-existing conditions that impact care needs.

The most common conditions among Indigenous Australians with dementia who completed an aged care assessment in 2019–20 were:

  • High blood pressure (53% of all Indigenous Australians with dementia)
  • Type 2 Diabetes mellitus (39%)
  • High cholesterol (25%)
  • Osteoarthritis (24%)
  • Chronic lower respiratory diseases (18%) (Figure 12.8).

Figure 12.8: Leading 10 health conditions among Indigenous Australians who completed an aged care assessment in 2019–20: percentage, by dementia status

Figure 12.8 is a bar chart showing the top 10 comorbidities of Indigenous Australians with and without dementia who completed an aged care assessment in 2019–20, over half of Indigenous Australians with dementia who completed an aged care assessment also had hypertension (high blood pressure) and 39% had type 2 diabetes mellitus. While there were generally similar patterns in comorbidities between those with and without dementia, a higher proportion of Indigenous Australians with dementia also had hypertension and acute or chronic ischaemic heart disease than those without dementia.

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Approvals for use of aged care services

Assessors recommend and approve people for entry into a range of government-subsidised aged care services based on a person’s long-term care needs. Approvals are not only provided for immediate use of services but also for future use if a person’s care needs are likely to change. This means that people can be approved for multiple services.

Of the Indigenous Australians with dementia who completed a comprehensive assessment in 2019–20:

  • 67%, or 249 people were approved for residential respite care
  • 59%, or 218 people were approved for community-based care under the Home Care Packages Program
  • 56%, or 206 people were approved for permanent residential aged care.

Approvals for people with dementia who completed a home support assessment were not readily available in the NSAF data. 

Use of permanent residential aged care

This section presents data from Aged Care Funding Instrument (ACFI) appraisals to describe the characteristics of Indigenous Australians with dementia living in permanent residential aged care. The ACFI is a funding tool used by the Australian Government to allocate funding to providers based on the ongoing care needs of people living in residential aged care. See Residential aged care for more details on the ACFI and residential aged care provision in Australia. 

During 2019–20, about 244,000 people were living in permanent residential aged care services across Australia. Of these, just over 2,400 (1%) identified as being Indigenous. About half (52% or 1,260) of the Indigenous people living in permanent residential aged care had dementia.

Figure 12.9 shows the age profile of Indigenous Australians living in permanent residential aged care by dementia status. Indigenous men and women with dementia were older than Indigenous Australians without dementia.

Figure 12.9: Indigenous Australians living in permanent residential aged care 2019-20: number, by dementia status, age and sex

Figure 12.9 is a bar chart showing the number of Indigenous Australians living in permanent residential aged care in 2019–20 by age and sex. The number of Indigenous Australians with dementia living in residential aged care increases with age until 80–84. There is a weaker pattern by age for Indigenous Australians without dementia.0–. Both Indigenous men and women with dementia were older than Indigenous men and women without dementia living in residential aged care.

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The number of Indigenous Australians with dementia living in permanent residential aged care has increased in recent years from just under 1,100 in 2014–15 to just under 1,300 in 2019–20. Consistently, just over 50% of Indigenous Australians living in permanent residential aged care were living with dementia during this 5-year period.

Time spent living in permanent residential care

A person can have more than 1 episode of care in a residential aged care facility in a given year if for example, they moved from 1 facility to another. A separation from an ‘episode of care’ is most commonly due to: death, prolonged admission to hospital, movement to another residential aged care facility, or returning to the community. Indigenous Australians with dementia who separated from their latest episode of care during 2019–20 had a median stay of 2.0 years, with the majority of separations due to death (89%).

Use of residential aged care services by state/territory and remoteness area

Figure 12.10 shows how the age-standardised rate of permanent residential aged care use among Indigenous Australians varied by dementia status and across geographic areas in 2019–20. After accounting for population differences:

  • across states and territories, the rate of permanent residential aged care use for Indigenous Australians with dementia was highest in Western Australia (263 people with dementia per 10,000 Indigenous Australians) and lowest in New South Wales and Victoria (158 and 148 people with dementia per 10,000 Indigenous Australians, respectively). Due to data limitations, rates for Tasmania and the Australian Capital Territory are not included
  • Indigenous Australians with dementia tended to use permanent residential aged care services at higher rates in more remote areas—224 people with dementia per 10,000 Indigenous Australians in Remote and Very remote areas compared with 178 and 197 people with dementia per 10,000 Indigenous Australians in Inner and outer regional areas and Major cities, respectively.

Figure 12.10: Indigenous Australians with dementia living in permanent residential aged care 2019-20: age standardised rate, by state/territory and remoteness

Figure 12.10 is a bar graph showing the age standardised rate of Indigenous Australians with dementia living in permanent residential aged care in 2019–20 by state and territory and remoteness area. The highest rates were in Western Australia and the Northern Territory (263 and 253 Indigenous residents with dementia per 10,000 Indigenous Australians respectively) as well as in Remote and very remote areas (224 Indigenous residents with dementia per 10,000 Indigenous Australians).

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Co-existing health conditions

The ACFI collects information on health conditions that impact on a person’s care needs. This includes up to 3 mental and behavioural disorders (including dementia), as well as 3 medical conditions impacting care needs.

During 2019–20, depression and mood disorders (35%), arthritis and related disorders (33%), and urinary incontinence (28%) were the 3 most common health conditions among Indigenous Australians with dementia living in permanent residential aged care. Other common conditions included: type 2 diabetes mellitus (23%) hypertension (18%), chronic lower respiratory diseases (16%), stroke (14%), anxiety and stress related disorders (13%), pain (12%), and other mental and behavioural disorders (9.1%).

Care needs

The ACFI determines the funding allocation for a resident based on the level of care they require in 3 domains: Activities of daily living, Cognition and behaviour and Complex health care.

Among Indigenous Australians with dementia who were living in permanent residential aged care in 2019–20:

  • 64% required high levels of care related to Activities of daily living (such as nutrition, mobility, personal hygiene, toileting and continence needs)—this was slightly higher than for Indigenous Australians without dementia (56%)
  • 80% required high levels of care related to their Cognition and behaviour, which includes cognitive skills, wandering, verbal behaviour, physical behaviour and depression—this was higher than for Indigenous Australians without dementia (48%)
  • 44% required high levels of care related to Complex health care, which includes ongoing medication needs and complex health-care procedures—this was slightly lower than for Indigenous Australians without dementia (53%).

For each ACFI domain, there was little difference in percentage of men and women with dementia with the highest care needs. It is important to remember that many Indigenous Australians access comprehensive care outside their home that is not captured in the ACFI data, such as through the National Aboriginal and Torres Strait Islander Flexible Aged Care Program, so information presented in this report does not comprehensively capture the care needs of all Indigenous Australians accessing residential aged care services.

Figure 12.11: Indigenous Australians living in permanent residential aged care with the highest care needs in each ACFI domain 2019–20: percentage, by sex and dementia status

Figure 12.11 is a bar chart showing the percentage of Indigenous Australians living in residential aged care with and without dementia who required high levels of care in each ACFI domain in 2019–20 by sex. The patterns for men and women are similar. Eighty percent of Indigenous Australians with dementia who lived in residential aged care required high levels of care in the cognition and behaviour domain, while 64% required high levels of care in the activities of daily living domain. A smaller proportion (44%) of Indigenous Australians with dementia living in residential aged care required high levels of care in the complex health care domain than Indigenous Australians without dementia (53%).

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