Informal carers are people who provide care to those who need it within the context of an existing relationship, such as a family member, a friend or a neighbour. The demands of the role often go beyond what would normally be expected of these relationships. People who need help may also receive formal services from government and other organisations. The majority of informal carers are unpaid, although some may receive assistance through formal (paid) services. For information on people who work as paid carers in the welfare sector, see Welfare workforce. Informal carers and informal volunteers may be involved in similar forms of unpaid work, however, while some informal carers care for people living in the same household, informal volunteers do not. For information on people who volunteer their time to help others, see Volunteering.

The type and level of informal care can vary considerably. This may relate to people’s physical function, mental health, an end-of-life health condition, old age or disability. An informal carer might carry out many tasks that paid services would otherwise provide, to help someone with showering, eating or shopping, provide in-home supervision, provide transport for moving about in the community, or carry out medical or therapeutic care.

How many people are informal carers?

According to the Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers, in 2018 there were 2.65 million people (10% or 1 in 10 Australians) who provided informal care in Australia (ABS 2019). More than one-third (35% or 929,000 people) of all carers were aged 35–54 (average age was 50) (ABS 2019).

Around 1 in 10 (10%) Australians are informal carers, the majority of which are unpaid

In 2018, around 1 in 3 carers (33% or 861,000 people) were primary carers, meaning they provided the most care to the person needing support in one or more core activities (self-care, mobility and communication) (ABS 2019). ‘Other informal carers’ are people who provided informal care to someone but were not their primary carer.

Primary carers are most commonly female (72%, compared with 50% of other carers in 2018). This varied further by age, with middle-aged primary carers particularly likely to be female (82% of those aged 35–44, and 75% of those aged 45–54) (Figure 1).

 

The vertical bar chart shows the male-to-female distribution in each age group (under 15, then in 10-year groups to age 65 and over). The values are the proportion of people in each age group that are male and female, with the tool tip also showing the proportion of people, across 3 categories of carer type (primary and other, or all carers). The chart shows that primary carers are more likely to be female, particularly in the middle age groups, while other carers have a mostly balanced distribution between the sexes in each age group.

Impact of COVID-19 on informal carers

The coronavirus disease 2019 (COVID-19) pandemic has been a significant challenge for many Australians. The virus can have a more serious impact on older people, those who have pre-existing medical conditions and people with disability—groups of people who often rely on informal carers. To reduce the risk of infection, different levels of formal restrictions have been in place, and these may have affected informal carers differently. For example, people who do not live with the person they look after may have had these arrangements disrupted. In addition, people may have voluntarily limited contact with either the person they care for, or with the wider community to reduce the risk of infecting the person they care for. For more information on the impact of COVID-19 on vulnerable populations, see Aged care, Aged care for Indigenous Australians and Specialised supports for people with a disability.

According to the ABS Household Impacts of COVID-19 Survey, in November 2020, around 1 in 6 (16%) Australians aged 18 years and over reported being an informal carer (ABS 2020). Since 1 March 2020, 1 in 4 (25%) of these informal carers had difficulty providing care or assistance because of restrictions put in place following COVID-19, 22% reduced their recreational activities, and 22% changed their working arrangements (ABS 2020). For more information on the impacts of COVID-19, see ABS Household Impacts of COVID-19 survey.

Formal assistance

People who provide informal care are not paid for the care they provide, although some receive income support payments from the Australian Government. This is a smaller subgroup of all informal carers—people whose caring duties are significant enough to limit their ability to engage in paid work.

The means-tested Carer Payment provides income support for people who care for someone who has considerable needs due to disability or ill health, making them unable to support themselves through substantial paid employment. As at 25 September 2020, over 294,000 people aged 16 and over received the means-tested Carer Payment (DSS 2021). The number of informal carers receiving financial assistance through Services Australia (Carer Payments) increased by 3.9% in March 2020 compared with March 2019 (from 279,300 to 290,100), and by 4.5% in September 2020 compared with September 2019 (from 281,900 to 294,500) (DSS 2021). A proportion of people who qualify for Carer Payments may not be receiving financial assistance through the Carer Payment if they are receiving other financial assistance, such as parenting, disability, unemployment or age pension payments.

This increase may be related to employment changes people experienced during the COVID-19 pandemic, for example someone previously working part-time and caring for a family member may have become eligible to receive the Carer Payment due to loss of income. Additionally, changes in formal assistance may be caused by the ageing population as the majority (68%) of carers and care recipients were aged 45 and over. While the COVID-19 pandemic has resulted in large increases in the number of income support recipients overall, changes attributed to the pandemic should be approached with caution and acknowledgement of the long-term trends.

Of people receiving the Carer Payment at 25 September 2020:

  • almost 4 in 5 (79%) were being paid the full rate of payment (meaning their assets and income were both below relevant thresholds)
  • almost half (47%) had been receiving the payment for 5 years or more
  • more than 2 in 5 (44%) had been on some form of income support for 10 years or more
  • 7 in 10 (70%) were aged 45 and over
  • 7 in 10 (70%) were female (DSS 2021).

People may also, or instead, receive the Carer Allowance, which is a smaller supplementary payment for carers who provide daily care and attention at home for a person with a disability, severe medical condition or who is frail and aged. The Carer Allowance may be paid in addition to income support payments. At 25 September 2020, over 623,000 people received this allowance compared with over 608,000 at 27 September 2019 (DSS 2021).

The Carer Gateway is a program that aims to acknowledge and support the work of unpaid carers. The Australian Government first announced Carer Gateway on 5 March 2018, along with $700 million in funding over five years. In the recent 2021–22 Federal Budget and in response to the recommendations of the Royal Commission into Aged Care Quality and Safety, the Government announced a further investment of nearly $800 million into increasing supports available to informal and family carers of older Australians, particularly for those caring for people living with dementia. An additional $103 million was also allocated to Carer Gateway to improve the pathways available to informal carers when accessing support services. For more information on the Carer Gateway and supporting carers in Australia, see Department of Social Services Supporting Carers and Disability support pension and carer payment.

Carers and care receivers

This section presents selected data for Carer Payment recipients (the carer) and the people they provided care to (the care receiver). As at 25 September 2020, there were almost 291,000 care receivers (people receiving care who qualify their carer for carer payment) (DSS 2021).

Age and sex

Around 7 in 10 care payment recipients and care receivers were aged 45 and over (70% and 68% respectively) (Figure 2). However, people receiving Carer Payment most commonly provided care to an older person aged 65 and over (42%) or to a young child aged under 16 (14%).

 

The bar chart shows the distribution by age group (under 16, then in 10-year groups to age 65 and over) for people who received the Carer Payment or for people who received care from Carer Payment recipients (selected via a button). The chart shows that people who received care from Carer Payment recipients were more likely to be in the youngest age group (under 16) or in the oldest age group (65 and over), with Carer Payment recipients more likely to be in the middle age groups.

While the majority of Carer Payment recipients were female (70%), more than half (54%) of people receiving care from a Carer Payment recipient were male. This varied with age: males made up 71% of care receivers aged under 16, compared with 49% of those aged 65 and over (DSS 2021).

Medical conditions

The nature of care a person requires can affect the demands of the caring role. For example, someone with a physical disability may require a different kind or level of care compared with someone with a psychological disability.

As at 25 September 2020, for people receiving care from a Carer Payment recipient, the most commonly recorded primary medical condition was psychological/psychiatric (28%), however this varied by age (DSS 2021). For example:

  • More than half (56%) of care receivers aged 16 and under had a primary medical condition of psychological/psychiatric. This condition became less common with age. Only 12% of care receivers aged 65 and over had this as their primary medical condition.
  • Musculoskeletal and connective tissue conditions increased as age increased. Only 1.3% of people aged under 16 had this as their primary medical condition, rising to 33% among those aged 65 and over (Figure 3).

 

The vertical bar chart shows the distribution of medical conditions in each age group (under 16, 16–20, 21–24, then in 10-year groups to age 65 and over) for people who received care from Carer Payment recipients. The chart shows that the proportion of care receivers who had a psychological or psychiatric condition was highest in the youngest age group and decreased steadily as age increased, while the proportion who had physical conditions affecting the musculoskeletal system or connective tissue was lowest in the youngest age group and increased steadily as age increased.

Other support services

In addition to income support payments, services are available to support carers in other ways. Examples include meeting their needs in study and work, and supporting them and the person they care for through counselling, help at home, transport or equipment.

Respite care is used by a range of people for different reasons. There may be barriers to accessing services such as cost, availability or lack of knowledge about availability. However, having someone else provide care for a few hours or a few days can sustain the informal carer in their caring responsibilities and support the caring relationship.

Respite care

Respite services are offered under different programs. For example:

  • Respite services were previously provided under the National Disability Agreement (NDA), although this has been progressively wound down with the transition to National Disability Insurance Scheme (NDIS)—the last available data from the NDA showed that, in 2018–19, NDA-funded respite services were used by 10,041 people who had an informal carer (AIHW 2020).
  • NDIS includes respite care where it is considered a reasonable and necessary support.
  • The Commonwealth Home Support Programme offers centre-based, cottage and flexible respite services. In 2019–20, these were used by 17,580 people who had an informal carer (representing 35% of all respite users).
  • In residential aged care, respite stays of (generally) up to 63 days in a year are available. In 2019–20, there were 20,700 admissions to respite care for people who were living with family members (representing 25% of all respite admissions; noting that not all family members are informal carers).
  • For more information on the impact of COVID-19 on respite services see Aged care.

Where do I go for more information?

For more information on informal carers, see:

References

ABS (Australian Bureau of Statistics) 2019. Disability, Ageing and Carers, Australia: Summary of Findings, 2018. ABS cat. no. 4430. Canberra: ABS.

ABS 2020. Household Impacts of COVID-19 Survey, November 2020. ABS cat. no. 4940. Canberra: ABS.

AIHW (Australian Institute of Health and Welfare) 2020. Disability support services: services provided under the National Disability Agreement 2018–19. Cat. no. DIS 75. Canberra: AIHW.

DSS (Department of Social Services) 2021. DSS Demographics - September 2020. DSS Payment Demographic Data. Canberra: DSS.