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 informal (unpaid) care often complements formal (paid) services. (For information on people who work as paid carers in the welfare sector, see Welfare workforce.)

The type and level of informal care can vary considerably depending on the care recipient’s needs and condition. These may relate to 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 2015 Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers, there were 2.7 million informal carers in Australia. More than one-third (37% or 991,000 people) of all carers were aged 35–54 (average age was 50) (ABS 2016).

More than 1 in 10 Australians are informal carers

In 2015, almost 860,000 people (32% or 1 in 3 carers) 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 2016). ‘Other carers’ are people who provided informal care to someone but were not their primary carer.

Primary carers are most commonly female (68%, compared with 50% of other carers in 2015). This varied further by age, with middle-aged primary carers particularly likely to be female (81% of those aged 35–44, and 76% of those aged 45–54) (Figure 1).

Formal assistance

Informal carers 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.

As at 29 June 2018, 274,000 people aged 16 and over received the means-tested Carer Payment (DSS 2018). This payment provides income support for people who care for someone who has considerable needs due to disability or ill health. People may also, or instead, receive Carer Allowance, which is a smaller payment (in June 2018, 622,000 people received this allowance).

Of people receiving Carer Payment at 29 June 2018:

  • almost 4 in 5 (78%) were being paid the full rate of payment (meaning their assets and income were both below relevant thresholds)
  • more than 2 in 5 (44%) had been receiving the payment for 5 years or more
  • 2 in 5 (40%) had been on some form of income support for 10 years or more
  • 7 in 10 (69%) were aged 45 and over
  • 7 in 10 (70%) were female.

Carers and care recipients

This section presents selected data for carers who received the Carers Payment (the carer) and the people they provided care to (the care recipient). As at 29 June 2018, there were 273,000 care recipients.

Age and sex

Around 7 in 10 (69%) carers and care recipients were aged 45 and over. However, people receiving Carer Payment most commonly provided care to a young child (13% were children aged under 16) or to an older person (40% were aged 65 and over) (Figure 2).

Overall, more than half (54%) of care recipients were male, but this varied with age. Males made up 71% of care recipients aged under 16, compared with 49% of those aged 65 and over (DSS 2018).

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 to someone with a psychological disability.

For care recipients at 29 June 2018, the most common first-listed medical conditions were psychological/psychiatric (26%) and musculoskeletal/connective tissue conditions (23%); but this varied by age (DSS 2018). For example:

  • Around half (52%) of care recipients aged 16 and under had a first-listed medical condition of psychological/psychiatric. This condition became less common with age. Only 11% of care recipients aged 65 and over had this as their first-listed medical condition.
  • Musculoskeletal and connective tissue conditions increased as age increased. Just over 1.4% of people aged under 16 had this as their first-listed condition, rising to 33% among those aged 65 and over (Figure 3).

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 services temporarily replace the care given by informal carers. Carers may not need or want a break from their responsibilities, and sometimes there are barriers in accessing services due to 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.

Giving carers a break

Respite services are offered under different programs. For example:

  • Respite services are provided under the National Disability Agreement (NDA), although this is progressively winding down as the National Disability Insurance Scheme (NDIS) rolls out—in 2017–18, NDA-funded respite services were used by 21,900 people who had an informal carer (representing 83% of all respite users) (AIHW 2019).
  • NDIS does not specifically provide for ‘respite services’, and comprehensive data are not available on how many people with disability who have a carer receive supports that have the effect of sustaining the carer as well.
  • The Commonwealth Home Support Programme offers centre-based, cottage and flexible respite services. In 2017–18, these were used by 22,200 people who had an informal carer (representing 48% of all respite users).
  • In residential aged care, respite stays of (generally) up to 63 days in a year are available. In 2017–18, there were 26,800 admissions to respite care for people who were living with family members (representing 34% of all respite admissions; noting that not all family members are informal carers).

Where do I go for more information?

For more information on informal carers, see:

The Carer Gateway also has information on services that are available for informal carers.

References

ABS (Australian Bureau of Statistics) 2016. Disability, Ageing and Carers, Australia: Summary of Findings, 2015. ABS cat. no. 4430. Canberra: ABS.

AIHW (Australian Institute of Health and Welfare) 2019. Disability support services: services provided under the National Disability Agreement 2017–18. Cat. no. DIS 73. Canberra: AIHW.

DSS (Department of Social Services) 2018. DSS Demographics June 2018. DSS Payment Demographic Data. Canberra: DSS.

Alternative text for figures

Figure 1: Primary or other informal carers, by sex and age group, 2015

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 number of people, across 3 categories of carer type (primary and other, or all carers for both of these), which can be selected via a button. 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.

Figure 2: Proportion of people receiving Carer Payment or care from Carer Payment recipients, by age group, June 2018

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

Figure 3: First-listed medical condition for people who received care from Carer Payment recipients, by age group, June 2018

The vertical bar chart shows the distribution of medical conditions in each age group (under 16, then in 10-year groups to age 65 and over) for people who received care from CP recipients. The chart shows that the proportion of people 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.