Younger people in residential aged care

Around 5,600 people

aged under 65 are younger people in permanent residential aged care (at 30 June 2019).

7 in 10

(72%) younger people in permanent residential aged care, have a high level of need for help with behaviour.

9 in 10

On entry to permanent residential aged care, 9 in 10 (88%) people aged under 65 have limitations in self–care.

On this page:


Introduction

Government-subsidised aged care in Australia is provided based on need, not age. As such, sometimes even very young people take up permanent residential aged care to meet their care needs.

While for some people with disability, including some younger people, residential aged care is a setting of choice, generally younger people are considered to be better served by other services for their long-term care needs.

The Younger People in Residential Aged Care—Action Plan is an Australian Government initiative aimed at minimising the need for younger people to live in aged care facilities. Younger people who are eligible for the National Disability Insurance Scheme (NDIS), can also use their NDIS funding to access alternative accommodation and care arrangements.

What is meant by ‘younger’?

There is no minimum age requirement to access government-subsidised aged care. For policy and planning purposes, however, people under the age of 65 years are considered ‘younger’ people in care. 

At 30 June 2019, 5,606 people aged under 65 were living in permanent residential aged care in Australia.

There is no direct way to identify disability using the available aged care data, nor is there information on why people enter (or stay in) permanent residential aged care.

On any given day, more than 5,500 younger people are in permanent residential aged care (about 3.1% of people in permanent residential aged care at 30 June 2019). This has decreased since 2010 after being relatively stable, with around:

  • 6,480 people aged under 65 in permanent residential aged care at 30 June 2010
  • 6,280 at 30 June 2014
  • 5,610 at 30 June 2019 (Figure RESIDENTIAL.1).

Figure RESIDENTIAL.1: People aged under 65 in permanent residential aged care, by year, 30 June 2010 to 30 June 2019

Line graph showing the number of younger people in residential aged care as at 30 June each year from 2010 to 2019. The chart shows a decrease in the number of people under 65 in care as at 30 June 2019 (5,606) compared to 30 June 2017 (6,243).

This was accompanied by a decrease over the same period in the number of admissions of people aged under 65 to permanent residential aged care (noting that an individual person can have more than 1 admission in a year, or across years):

  • 2,510 in 2009–10
  • 2,110 in 2018–19 (Figure RESIDENTIAL.2).

Figure RESIDENTIAL.2: Admissions and discharges from permanent residential aged care of people aged under 65, by year, 2009–10 to 2018–19

Line graph showing the number of younger people admitted to and discharged from residential aged care each financial year from 2019–10 to 2018–19. The chart shows a decrease in the number of people under 65 admitted into care in 2018–19 (2,110) compared to 2017–18 (2,582).

In addition to those people living in permanent residential aged care, on average, more than 2,000 younger people are admitted for respite residential aged care each year (2,200 people aged under 65 in 2018–19). Each stay in respite residential aged care is generally short, and younger people (aged under 65) also typically stay less than 4 weeks (64% in 2018–19).

To further understand the needs and characteristics of younger people living in residential aged care, the rest of this page uses administrative data from the AIHW’s Pathways in Aged Care linked dataset and the National Aged Care Data Clearinghouse to describe:

  • the activity limitations of people aged under 65 who first entered residential aged care
  • the extent to which their main medical condition limits their daily activities
  • their need for help with activities of daily living, behaviour and complex health care, of younger people in residential aged care
  • their age and sex
  • their Indigenous status
  • their remoteness area.

Pathways in Aged Care link map

The best available measure of a person’s functional limitations comes from the assessment undertaken by an Aged Care Assessment Team (ACAT, or Aged Care Assessment Services in Victoria). These teams assess and approve access to subsidised aged care programs, such as residential aged care. The result is an Aged Care Assessment Program (ACAP) assessment which aims to comprehensively assess people’s needs and direct them to appropriate services (AIHW 2016).

To understand the assessment’s association to take-up of care, it is necessary to link assessment data with residential aged care data. The AIHW’s Pathways in Aged Care (PIAC) link map joins an aged care residents’ ACAP assessment record with their residential aged care record. This enables analysis of their activity limitations and medical conditions as identified at the time of their latest ACAP assessment, before moving into permanent residential aged care.

The linkage of ACAP data to residential aged care data has only been completed up to June 2014. During 2013–14, around 8,700 people aged under 65 were in permanent residential aged care. This included around 2,300 people aged under 65 admitted to permanent residential aged care for the first time in this financial year. Of these, around:

  • 230 (10%) were under 50 years
  • 900 (40%) were 50–64 years
  • 1,100 (50%) were 60–64 years (AIHW 2019a).

Aged Care Funding Instrument

Another view of people’s care needs in permanent residential aged care is through the Aged Care Funding Instrument, which assesses the cost of care through a person’s need for support with activities of daily living, behaviour and cognition, and complex health care. This assessment tool does not take a ‘functional’ approach like other disability measures do.


Activity limitations

Activity limitations reflect the difficulty a person has in executing a task or action.

Activity limitations in the Aged Care Assessment Program

In an ACAP assessment, a person is limited in an activity if they have difficulty carrying out the activity and require another person to assist or supervise.

The 10 recorded activity limitations can be divided into ‘core’ and ‘other’:

Core activities

  • self–care—daily tasks to do with, for example, eating, dressing and toileting
  • communication
  • movement—for example, changing position or moving from chair or bed
  • moving around—walking or otherwise moving between places at or away from home.

Other activities

  • health care tasks—for example, taking medications or managing chronic health issues
  • transport—driving or use of public transport
  • social and community participation—including shopping, financial management and recreational activities
  • assistance in domestic activities—managing household chores
  • meal preparation
  • home maintenance—such as basic house repairs and gardening.

This assessment differs from the definition used in the Australian Bureau of Statistics’ (ABS) 2018 Survey of Disability, Ageing and Carers (SDAC), which uses 3 core activities—self-care, mobility, and communication—to determine severity of disability.

Core activities

Most younger people who enter permanent residential aged care have a limitation in 1 or more core activities (Figure RESIDENTIAL.3). The most common are related to self–care (88%) and moving around (77%). Fewer younger people (49%) have a limitation in movement, and fewer still have a limitation in communication (39%). About 1 in 4 (22%) have limitations in all 4 core activities defined by the Aged Care Assessment Program.

This varies by age. For example, those aged under 50 are more likely to have a core activity limitation than those aged 50–59 and 60–64. Almost 36% of those aged under 50 have an activity limitation in all 4 core activities, compared with 24% and 18% for those aged 50–59 and 60–64 respectively.

Figure RESIDENTIAL.3: Type of activity limitation for people aged under 65 who first entered permanent residential aged care, by activity type and broad age group, 2013–14

Bar chart showing the proportion of younger people in residential aged care with 10 categories of activity limitations. The reader can select to display the chart by core activity or other activities and by age when the person first entered permanent residential aged care, including under 50 years, 50–59 years, 60–64 years and all age groups. The chart shows people under 50 when they enter care are more likely (52%) to have a limitation in communication than those aged 60–64 (34%).

Other activities

Also common among younger people who enter permanent residential aged care are limitations relating to:

  • transport (93%)
  • health care tasks (92%)
  • social or community participation (92%)
  • domestic activities (87%)
  • meal preparation (87%)
  • home maintenance (73%) (Figure RESIDENTIAL.3).

Two in 3 (66%) have limitations in all 6 ‘other’ activities.


Medical conditions

While multiple medical issues and health conditions often affect the need for care, investigating specific conditions commonly associated with particular needs can simplify the picture.

Medical conditions in Aged Care Assessment Program

The ACAP assessment records up to 10 diagnosed health conditions that impact on the person's need for assistance with activities of daily living and social participation. In the assessment, the disease or disorder listed first indicates the main medical condition, which is the one with the greatest impact.

Overall, the most common main medical conditions of younger people in permanent residential aged care are:

  • dementia (17%)
  • cancer (13%)
  • progressive neurological conditions, such as Huntington disease, Parkinson disease and motor neurone disease (10%)
  • cerebrovascular disease (10%) (Table RESIDENTIAL.1).

These results vary by age. For those aged under 50, for example, the most commonly reported main condition is progressive neurological disorder (19%), followed by cancer (13%).

Table RESIDENTIAL.1: People who first entered permanent residential aged care aged under 65, main (first–listed) medical condition at assessment, by age group, 2013–14 (%)

Condition

Aged
under 50

Aged
50–59

Aged
60–64

Total

Dementia

6.5

14.5

20.4

16.6

Cancer

12.5

12.8

12.7

12.7

Progressive neurological disorder

18.5

9.6

8.6

10.0

Cerebrovascular disease

11.6

9.7

9.6

9.9

Intellectual, chromosomal or developmental disorder

10.8

8.7

5.9

7.5

Depression, other mood disorder or psychosis

1.7

6.9

7.0

6.4

Other nervous system disorder

6.5

4.5

4.6

4.7

Head injuries

6.9

3.7

2.2

3.3

Other

6.5

4.5

4.6

4.7

Source: AIHW analysis of PIAC 2014.


Activity limitations by condition

Activity limitations of younger people in permanent residential aged care vary by medical condition. Almost 17% of people aged under 65, for example, have a main condition of dementia. Almost half (49%) of these have activity limitations in self–care and 1 or 2 other core activities (communication, movement, moving around) (Figure RESIDENTIAL.4).

Figure RESIDENTIAL.4: Core activity limitation for people aged under 65 who first entered permanent residential aged care, by main medical condition at assessment and broad age group, 2013–14

Stacked column chart showing the proportion of younger people in residential aged care with core activity limitations. The reader can select to display the chart by the main medical condition of the person. The chart shows people under 50 with cerebrovascular disease when they enter care are more likely (63%) to have a limitation in all 4 core activities than those with depression, other mood disorders or psychosis (25%).


Need for help

7 in 10 (72%) of the 5,606 younger people in permanent residential aged care have a high level of need for help with behaviour, for example cognitive skills, at 30 June 2019. More than half (56%) have a high level of need for help with activities of daily living, for example mobility. Half (50%) have a high level of need for help with complex health care.

The proportions for people aged 59 and under and those aged 60–64 in permanent residential aged care are similar for each ACFI level in all 3 categories (Figure RESIDENTIAL.5).

Figure RESIDENTIAL.5: People aged under 65 in permanent residential aged care, by Aged Care Funding Instrument (ACFI) level, broad age group and ACFI category, at 30 June 2019

Bar chart showing the proportion of people who have a high, medium, low or nil need for help in the age groups 0–59, 60–64 and everyone aged 0–64 in permanent residential aged care. The reader can select to display the chart by 3 ACFI categories including activities of daily living, behaviour and complex health care. The chart shows 57% people aged 0–59 in permanent residential aged care have a high level of need for help with activities of daily living and only 2.6% have no need for help.

How is the level of need for help determined?

In this section, the Aged Care Funding Instrument (ACFI) level is used to categorise the level of help needed by each person in residential aged care. This information is used to calculate the funding received by the residential aged care provider. The ACFI is used to assess a person’s need for support with activities of daily living, behaviour, and complex health care (Department of Health 2016). In each of the 3 domains, the person is assigned an ACFI level of need of high, medium, low or nil.

The Activities of Daily Living Domain includes need for help with nutrition, mobility, personal hygiene, toileting, and continence. The Behaviour Domain includes cognitive skills, wandering, verbal behaviour, physical behaviour, and depression. The Complex Health Care Domain includes the administration of medicines and health care procedures.


Demographics

Sex and age

Just over half (54% or 3,000) of younger people in permanent residential aged care are males, at 30 June 2019—and is consistent for people aged 49 and under, 50–59, and 60–64. The pattern is very different for people aged 65 and over, where the majority (67%) of people in permanent residential aged care are females (Figure RESIDENTIAL.6).

Figure RESIDENTIAL.6: People in permanent residential aged care, by age group and sex, at 30 June 2019

Stacked bar chart showing the proportion of people in residential aged care who are males and females for age groups including 0–49, 50–59 then 5-year groups from 60–64 to 80–84, and 85+. The chart shows 55% people aged 60–64 in permanent residential aged care are males and only 26% aged 85 and over.

Of the 3,000 younger males in permanent residential aged care, at 30 June 2019:

  • 8% are aged 49 and under
  • 37% are aged 50–59
  • 55% are aged 60–64 (Figure RESIDENTIAL.7).

The pattern is similar for the 2,570 younger females in permanent residential aged care, at 30 June 2019:

  • 8% are aged 49 and under
  • 39% are aged 50–59
  • 53% are aged 60–64 (Figure RESIDENTIAL.7).

Figure RESIDENTIAL.7: People aged under 65 in permanent residential aged care, by age group, sex and Indigenous status, at 30 June 2019

Column chart showing the proportion of people aged 0–64 in permanent residential aged care for age groups 0–49, 50–59 and 60–64. The reader can select to view the chart by sex and Indigenous status. The chart shows, 46% of people in permanent residential aged care who identify as Aboriginal and/or Torres Strait Islander people are aged 50–59 compared with 37% of those who are non-Indigenous.

Aboriginal and Torres Strait Islander people

The proportion of younger people in permanent residential aged care who identify as Aboriginal and/or Torres Strait Islander people (7.4% excluding Indigenous status ‘not stated’) is higher than the proportion of the total Australian population aged 0–64 who are Indigenous (3.8%) (ABS 2019). At 30 June 2019 (excluding Indigenous status ‘not stated’):

  • 10% of people aged 49 and under in permanent residential aged care identify as Indigenous
  • 9.0% of people aged 50–59
  • 5.8% of people aged 60–64 (Figure RESIDENTIAL.7).

By comparison, 1.0% of all people in residential aged care (including those aged 65 and over) identify as Aboriginal and/or Torres Strait Islander people (excluding Indigenous status ‘not stated’).

The Aboriginal and Torres Strait Islander population has a much younger age structure than the non–Indigenous population, due to higher rates of fertility and deaths occurring at younger ages. However, as with the general population, the Indigenous population is also ageing (AIHW 2019b).

Indigenous status

People in residential aged care are asked if they identify themselves as of Aboriginal and/or Torres Strait Islander origin. The question is not compulsory and may not be asked consistently, so the numbers reported in this section may be an underestimation of the true number of Indigenous people using these programs. Indigenous people may also access aged care services under the dedicated National Aboriginal and Torres Strait Islander Flexible Aged Care Program, and this can also affect the number of Indigenous people using ‘mainstream’ residential aged care.

What is meant by ‘younger’?

Access to aged care services in Australia is determined by need, rather than age. However, planning for aged care services takes into account the specific needs of the Indigenous population aged 50 and over and the non-Indigenous population aged 65 and over (AIHW 2019b).

At 30 June 2019, 45 people aged under 50 were living in permanent residential aged care and identified themselves as Aboriginal and/or Torres Strait Islander people.


Remoteness

Of the 5,600 younger people in permanent residential aged care at 30 June 2019:

  • 68% are in Major cities
  • 21% are in Inner regional areas
  • 8.8% are in Outer regional areas
  • 1.3% are in Remote areas
  • 0.6% are in Very remote areas.

These proportions are similar to the proportions of people who live in each of these remoteness areas (ABS 2020).

How is remoteness defined?

The remoteness categories used in this section are based on the ABS Australian Statistical Geography Standard (ASGS 2016). Records are distributed by Remoteness Area based on the location of the aged care service through which care was provided.

The proportions for people aged 59 and under and those aged 60–64 in permanent residential aged care are very similar for each remoteness area (Figure RESIDENTIAL.8).

Figure RESIDENTIAL.8: People aged under 65 in permanent residential aged care, by broad age group and remoteness, at 30 June 2019

Bar chart showing the proportion of people in residential aged care in the age groups 0–59, 60–64 and all people aged 0–64 by whether they live in Major cities, Inner and outer regional areas, or Remote and very remote areas. The chart shows 68% of people in permanent residential aged care live in Major cities and 1.8% live in Remote and very remote areas.

Where can I find out more?

Data tables for this report.

ABS Disability, Ageing and Carers, Australia: Summary of Findings, 2018.

Use of aged care services—AIHW GEN.

Services the NDIS funds—NDIS.