Residential aged care

Aged care services provided in residential aged care facilities are an important resource for older Australians, including those with dementia. Residential aged care services are particularly important for those in the advanced stages of dementia who need ongoing care, as well as accessible accommodation. People with dementia living in residential aged care have specific care needs that differ to the care needs of others living in residential aged care, such as wandering behaviours, cognition issues and difficulties in undertaking daily activities such as toileting, eating meals, and mobility. 

This page uses Aged Care Funding Instrument (ACFI) data to present information on people with dementia who were living in permanent residential aged care in 2019–20, by:

This page also presents how the number and age-standardised rate of people with dementia and people without dementia living in permanent residential aged care has changed between 2015–16 and 2019–20 (skip to this section). 

A snapshot of people in permanent residential care on 30 June 2020 showed that ACFI data captures almost all people in permanent residential aged care (over 97% had a current ACFI appraisal) (AIHW 2020a). See Box 10.3 for more information on the ACFI.

Over half of people living in permanent residential aged care have dementia

In 2019–20, there were over 244,000 people living in permanent residential aged care, and 54% of these people had dementia (about 132,000 people). In 2019–20, of those living in permanent residential aged care:

  • over half of both women (54% or nearly 85,700) and men (54% or over 46,200) had dementia
  • men tended to be younger than women, irrespective of whether or not they had dementia
  • both men and women with dementia were slightly older (aged 84 and 87 on average, respectively) than those without dementia (average of 82 and 86 years)
  • 1 in 3 people aged under 65 (33% or 2,000 people) had dementia (known as younger onset dementia when aged under 65)
  • unlike those with dementia at older ages where women outnumber men, there were more men with younger-onset dementia than women (about 1,100 men and 900 women) (Figure 10.7).

The Royal Commission into Aged Care Quality and Safety in its interim report made a high priority recommendation that all people under the age of 65 currently living in residential aged care facilities should be moved out of residential aged care and into other, more appropriate care types (Royal Commission 2019). 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. See Younger people in residential aged care for the most recent data available to track progress being made towards these targets.

Figure 10.7: People with and without dementia living in permanent residential care in 2019–20: number by age and sex

Figure 10.7 is a bar graph showing the number of people who were living in permanent residential aged care in 2019–20, by age, sex, and whether or not they had dementia. The number of people living in permanent residential aged care increased with age. The number of people with dementia peaked at 85–89 years, while the number of people without dementia peaked at 90–94 years. Between the age groups 75–79 and 90–94, there were more people with dementia than without dementia living in residential aged care. Patterns were similar for men and women but there were more women living in permanent residential aged care in all age groups except 0–64.

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Box 10.3: Residential aged care services and the Aged Care Funding Instrument

Residential aged care is primarily available to older Australians who can no longer live independently in the community, and includes accommodation in a 24-hour staffed facility along with health and nursing services (Department of Health 2020). For approved applicants, places in residential aged care facilities are subsidised by the Australian government, and the Aged Care Funding Instrument (ACFI) is used to allocate government funding to aged care providers based on the day-to-day needs of the people in their care.

The ACFI data do not capture people with dementia who access care through some specialised government programs. These include the Multi-Purpose Services Program, which provides integrated health and aged care services to regional and remote communities in areas that can't support both a separate aged care home and hospital, and the National Aboriginal and Torres Strait Islander Flexible Aged Care Program, which provides culturally appropriate aged care to older Aboriginal and Torres Strait Islander people, mainly in rural and remote areas.

Although the ACFI is a funding instrument and not a diagnosis or comprehensive service tool, it does provide information on assessed care needs of people in permanent residential aged care at the time of their appraisal; in some instances, not all services received will be captured in the ACFI assessment. An ACFI reappraisal can be conducted for various reasons, such as when a person has a significant change in care needs or after 12 months from when their classification has taken effect. Therefore, the ACFI data can provide information about people in permanent residential aged care and how their care needs change over time.

As the care needs and health conditions reported in the ACFI are reported by providers for funding purposes, it is important to remember the ACFI is not a thorough diagnostic or comprehensive service tool, nor is the data collection independent and free from potential conflicts of interest. Furthermore, the ACFI form only allows for up to 3 medical and 3 mental or behavioural conditions to be recorded, so it will often not provide a comprehensive list of a person’s health conditions.

The proportion of people with dementia living in residential aged care varies across geographic and population groups

Figure 10.8 shows the rate of people living in permanent residential aged care with dementia in 2019–20, by state and territory, remoteness area and socioeconomic area. Rates refer to the number of people with dementia living in permanent residential aged care as a proportion of the target population—that is, those aged 65 and over, in each area of interest. All rates have been age-standardised to adjust for population differences:

  • across states and territories, there were slight variations in the proportion of people with dementia living in permanent residential aged care, ranging from 275 people per 10,000 people in Tasmania to 322 people per 10,000 people in South Australia.
  • the rate of people with dementia living in permanent residential aged care increased as areas became less remote, from 117 per 10,000 people in Very Remote areas to 316 per 10,000 people in Major Cities
  • rates of people with dementia living in permanent residential aged care fell as socioeconomic disadvantage decreased—ranging from 323 per 10,000 people in the second lowest quintile to 293 per 10,000 people in the highest quintile.

Figure 10.8: People with dementia who were living in permanent residential aged care in 2019-20; age-standardised rate by state/territory, remoteness and socioeconomic area 

Figure 10.8 is a panel of bar graphs showing the age-standardised rates of people with dementia living in permanent residential aged care in 2019–20 by state or territory, remoteness and socio-economic areas. South Australia had the highest rate of people with dementia living in permanent residential aged care while the lowest rate was in Tasmania. There was a large difference in the rates of people with dementia living in residential aged care across remoteness areas. Major cities had the highest rate (316 residents per 10,000 people) and the rate decreased as remoteness increased, with just 117 people with dementia living in residential aged care facilities per 10,000 people living in very remote areas.  In comparison to the remoteness areas, there was only a small amount of variation in rates of people with dementia living in residential aged care across socioeconomic area, but the rates were highest in the lowest socioeconomic areas.

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The provision of aged care varies substantially in more remote areas; other government-subsidised aged care programs not captured in the ACFI, such as the Multi-Purpose Services Program and the National Aboriginal and Torres Strait Islander Flexible Aged Care Program, account for a substantial part of aged care provision in more remote areas. For example, Multi-Purpose Service facilities have been established in small remote communities where previously, community hospitals provided de facto residential aged care.  

Depression and arthritis are common health conditions among people with dementia

Depression and mood disorders (47%) and a range of arthritic disorders (45%) were the most common health conditions recorded on the ACFI among people with dementia living in permanent residential aged care (Figure 10.9).

Other conditions commonly recorded for people with dementia living in permanent residential aged care were: urinary incontinence (32%), anxiety and stress related disorders (23%), pain (22%), and hypertension (16%).

Compared to those without dementia, people with dementia were more likely to have arthritic disorders (45% compared with 41%), urinary incontinence (32% compared with 24%), hypertension (16% compared with 13%) and frequent falls with unknown aetiology (12% compared with 10%) recorded. Note that the ACFI allows aged care providers to record up to 3 medical conditions and 3 mental or behavioural conditions that impact the resident's care needs. Therefore, health condition information from the ACFI will not accurately reflect all co-existing conditions among people living in permanent residential aged care. See Box 10.3 for more information on how health conditions are recorded in the ACFI.

Figure 10.9: Leading 10 health conditions of people with dementia living in permanent residential aged care in 2019-20: percent by dementia status

Figure 10.9 is a bar graph showing the 10 most common health conditions of people with and without dementia living in permanent residential aged care in 2019–20. The most common health condition, for nearly half of people with and without dementia, was ‘depression and mood disorders’, followed by ‘other arthritis and related disorders’. The third most common health condition for people with dementia was ‘urinary incontinence’. For people without dementia, the third most common health condition was ‘anxiety and stress related disorders’.

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Assistance needs of people with dementia living in residential aged care

As the ACFI is used to allocate funding, it captures the day to day care needs that contribute the most to the cost of providing individual care. Care needs are categorised as ‘nil’, ‘low’, ‘medium’, or ‘high’ based on responses to 12 questions across 3 domains: Activities of daily living, Cognition and behaviour, and Complex health care. People with high care ratings in a domain have more severe needs and require extensive assistance and care in that domain, whereas those with a low care rating have less severe needs. See Box 10.4 for further information on how care needs are assessed for funding purposes using the ACFI tool.

In 2019–20, over half of people in permanent residential aged care with dementia were assessed as needing high levels of care in all ACFI domains. In 2 of the 3 ACFI domains, people with dementia tended to have higher care needs than those without dementia (Figure 10.10):

  • 4 in 5 people with dementia (81%) required high levels of care in the Cognition and behaviour domain (including cognitive skills, wandering, verbal behaviour, physical behaviour and depression) compared to 47% of people without dementia.
  • over 2 in 3 people with dementia (71%) required high levels of care in the Activities of daily living domain (including mobility, continence and nutrition), compared to 63% of people without dementia.
  • over 1 in 2 people with dementia (56%) needed high levels of care in the Complex health care domain (including management of chronic pain, chronic infectious conditions, ongoing tube feeding and oxygen therapy), slightly less than people without dementia (59%).

Figure 10.10: People living in permanent residential aged care in 2019-20: percent with the highest care needs in each ACFI domain by dementia status

Figure 10.10 is a bar graph showing the percentage of people with and without dementia living in permanent residential aged care in 2019–20 who needed help in three ACFI domains: activities of daily living, cognition and behaviour and complex health care. For people with dementia, 81% needed help with cognition and behaviour, 71% needed help with activities of daily living and 56% needed help with complex health care. For people without dementia, 47% needed help with cognition and behaviour, 63% needed help with activities of daily living, and 59% needed help with complex health care.

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Box 10.4: How are care needs assessed using the Aged Care Funding Instrument?

The ACFI is a resource allocation tool designed to determine the amount of funding required for the ongoing care needs of people living in residential aged care facilities. The ACFI appraisal is centred on assessing an individual’s care needs and consists of 12 care needs based questions, categorised into 3 domains:

  • Activities of Daily Living: includes questions regarding nutrition, mobility, personal hygiene, toileting and continence
  • Cognition and Behaviour: includes questions regarding cognitive skills, wandering, verbal behaviour, physical behaviour and depression
  • Complex Health Care: includes questions regarding medication and complex health care procedures (such as daily blood glucose measurement, management of chronic infectious conditions, oxygen therapy or ongoing tube feeding and palliative care where ongoing care will involve intensive clinical care and/or complex pain management).

Ratings for each domain are used to determine the level of funding required and to assign care. Supporting documentation against each of the ratings, as well as documentation on up to 3 behavioural conditions and up to 3 medical conditions impacting care are also used to determine the funding required.

Low levels of care focus on personal care and support services and some allied health services such as physiotherapy. High levels of care are for those who need almost complete assistance with all tasks. This includes providing 24-hour care, either by or under the supervision of registered nurses, combined with support services, personal care services, and allied health services.

How do the assessed needs of people with dementia living in residential aged care differ by age?

Figure 10.11 shows the proportion of people with dementia in residential aged care who were assessed as having the highest care needs in each of the ACFI domains, by different age groups and sex. For the:

  • Activities of daily living domain—the proportion of people requiring high levels of care was greatest among older people with dementia. Proportions were similar by sex, with the exception of the younger age groups, where a higher proportion of women tended to require high levels of care
  • Complex health care domain—the proportion of people requiring high levels of care increased steadily with age for both men and women
  • Cognition and behaviour domain—the proportion of people with dementia requiring high levels of care was greatest among people with younger-onset dementia, for both men and women. This could be in part a result of severe behavioural and psychological symptoms of dementia being common in dementia types that occur more frequently in younger ages, such as frontotemporal dementia, alcohol-related dementia, and dementia with Lewy bodies (Sansoni et al. 2016; Jefferies & Agrawal 2009). Alternatively, this may reflect that younger people are more mobile and have less medical co-morbidities, and so providers may place more emphasis on cognitive needs when completing the ACFI form.

Refer to Overview of dementia support services and initiatives for information on behavioural supports services for people with dementia.

Figure 10.11: People with dementia living in permanent residential aged care in 2019-20: percent with the highest care needs in each ACFI domain by sex and age 

Figure 10.11 is a bar graph showing the percentage of people with dementia living in permanent residential aged care in 2019–20 who were assessed as having the highest care needs in each of the three ACFI domains, by age group and sex. The proportion of people with dementia with high care needs for complex health care increased with age, from 46% at 0–64 years to 66% at 95 years and older. The proportion of people with dementia with high care needs for cognition and behaviour was about 80–85% irrespective of age. The proportion of people with dementia with high care needs for activities of daily living increased with age, from 60% at 65–69 years to 83% at 95 years and older. These patterns were similar for men and women.

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How do the assessed care needs vary by geographic and population areas?

The assessed needs of people with dementia living in permanent residential aged care in 2019–20 varied by geographic and population groups (Table S10.19):

  • across all 3 ACFI domains, the largest variations were seen by remoteness area with the proportion of people with dementia requiring high levels of care decreasing with increasing remoteness
  • while Western Australia had the highest proportion of people with dementia who required high levels of care in Activities of daily living and the Cognition and behaviour domains, Victoria had only a slightly lower proportion requiring high levels of care in these domains and had the highest proportion with needs in the Complex health care domain. The Australian Capital Territory had the lowest proportion for the Activities of daily living and Complex health care domains and South Australia had the lowest proportion for the Cognition and behaviour domain.
  • the proportion of people with dementia who required high levels of care were slightly lower for those in more disadvantaged areas, across all domains.

Note these data should be interpreted with caution due to the smaller number of people living in permanent residential aged care in more remote areas, and because other government subsidised residential services are more commonly available in remote areas (like the Multi-Purpose Services Program and the National Aboriginal and Torres Strait Islander Flexible Aged Care Program) but are not captured in the ACFI data. Differences by remoteness area could also be due to some remote areas not having the facilities and resources to care for people with higher care needs. As a result, some people with dementia may be required to move to less remote locations to access appropriate care.

Case study: Chronic pain management and palliative care for people with dementia living in permanent residential aged care

The Royal Commission into Aged Care Quality and Safety (the ‘Royal Commission’) has exposed systemic issues related to inappropriate and substandard care in Australia’s residential aged care setting and the negative impact this has on the mental and physical wellbeing of people in care. The Royal Commission has also documented the increasingly complex care needs of people living in residential aged care and that unmet needs (like untreated pain) are related to changed behaviours for people with dementia (Royal Commission 2019).

In this context, the needs for pain management and palliative care for people with dementia as recorded in the ACFI, is an important component of the services provided in residential care. As part of the Complex health care domain, the ACFI records information on ongoing pain management and palliative care services provided.

In 2019–20, among people with dementia living in permanent residential aged care, 78% required complex pain management at least weekly, and 49% required at least 4 long (80 minutes or longer) pain management sessions every week.

The ACFI also records whether a person is assessed as needing a palliative care program (involving end-of-life care) where ongoing care requires intensive clinical nursing and/ or complex pain management in the residential care setting. A small number of people with dementia in care in 2019–20 were assessed as needing palliative care (about 2,100 or 1.6%) at the time their ACFI appraisal was completed, which was slightly less than for the proportion of people without dementia (2.3%). These percentages likely underestimate the proportion of people needing palliative care as they only capture people assessed as needing palliative care at the time the ACFI assessment was conducted. In addition, because some people may receive end of life care in other settings such as hospitals, these care needs are not captured in ACFI data.

How long are people with dementia living in residential care?

When a person enters residential aged care, and how long they remain in care, is impacted by various factors like: a person’s preferred living arrangements, wait times for residential places from point of assessed eligibility, the complexity of care needs and existing comorbidities, the availability of informal carer and alternative care settings; and the quality of care provided in residential care. The Government has been placing a strong focus on giving older Australians the support they need to remain living in the community as long as possible, and recent research shows the timely availability of high-level home care packages plays a big role in whether people with dementia can delay entry to residential care (Welberry et al. 2020).

A person can have more than one ‘episode of care’ in a residential aged care facility in a given year if, for example, they moved from one 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. Of people with dementia who were receiving care in 2019–20, 1 in 3 people had separated from their latest episode of care that year. Most of these separations were due to death (96% of people with dementia and 93% of people without dementia who separated from their latest episode of care in 2019–20) (Table S10.22).

For people living in permanent residential aged care who did not separate from their latest episode of care during 2019–20, those with and without dementia had spent roughly the same length of time in care (median stay of 2.1 and 1.9 years, respectively). In contrast, for people who separated from their latest episode of care, there were larger differences by dementia status—people with dementia had spent a median of 2.2 years in care compared to 1.3 years for those without dementia (Figure 10.12).

These results may suggest that people without dementia may enter care closer to death as they may be able to live longer in the community, or perhaps that people with dementia separate to use other services less frequently (and may be more likely to die in residential aged care). Recent studies have found that towards the end of life, people with dementia tend to use hospital care at lower levels compared to people without dementia, and that dementia is a common cause of death for people who died in permanent residential aged care (AIHW 2020b; Dobson et al. 2020; AIHW 2021).

Figure 10.12: Time spent in care for people living in permanent residential aged care in 2019-20: percent by dementia status and whether the person separated from care or remained in care

Figure 10.12 is a bar graph showing how long people with and without dementia had spent in permanent residential aged care in 2019–20, by whether they separated from care in 2019–20 or not. For those who did not separate from care, 14–16% of people with and without dementia spent 0–6 months in care. This proportion increased to a peak of about 20% of people spending 1–2 years in care, and gradually decreased over longer time periods. For those who separated from care, nearly 30% of people without dementia spent 0–6 months in care, compared with 18% of people with dementia. The proportion who spent 6–12 months in care dropped to 11% of people with dementia and 13% of people without dementia, and about 17% of both groups spent 1­–2 years in care. The proportion gradually dropped over longer time periods for both groups, but people with dementia were more likely to have longer stays.

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Trends in the use of residential care

The number of people living in permanent residential aged care has increased over the last five years: from around 234,000 people during 2015–16, to over 244,000 people during 2019–20. The Australian Government manages the supply of aged care places, aiming to increase the number of places available in government subsidised permanent residential care relative to the growth of Australia’s older population (AIHW 2021). The proportion of people in permanent residential aged care with dementia remained relatively stable during this time at around 54–55%. The number of men increased over this period, irrespective of dementia status—by 7.8% for men with dementia and by 9.9% for men without dementia. In contrast, changes in the number of women differed by dementia status—the number decreased by 0.3% for women with dementia and increased by 4.3% for women without dementia (Figure 10.13).

Figure 10.13 also shows how the number of people with dementia in permanent residential aged care have changed over the last 5 years, as a proportion of the target population—that is, the population of Australians aged 65 and over. All rates have been age-standardised to adjust for population differences.

Between 2015–16 and 2019–20 the rate of people living in permanent residential aged care decreased overall, irrespective of if they had dementia or not, but the decrease was slightly greater among those with dementia—the rate decreased over this period from 329 to 303 per 10,000 people among those with dementia, while it decreased from 261 to 251 per 10,000 people among those without dementia. This might be linked to the preference of many older people to remain living in the community as long as possible, and correspondingly, an increased government focus on supporting alternatives to residential aged care (Royal Commission 2020). The decrease of people with dementia living in residential aged care was observed among both men and women with dementia.

Figure 10.13: People living in permanent residential aged care from 2015-16 to 2019-20: number and age-standardised rate by dementia status and sex

Figure 10.13 is two line graphs showing trends in the number and age-standardised rates of people living in permanent residential aged care between 2015–16 and 2019–20, by sex and dementia status. There were slightly more men with dementia than men without dementia living in residential aged care. The number of men with and without dementia increased slightly over the time period, but the age-standardised rates decreased for both.  There were more women with dementia than women without dementia living in aged care. The number of women with dementia living in aged care remained steady, while the number of women without dementia increased slightly, and the age-standardised rates decreased for both.

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