Broadly speaking, primary carers are the main source of ongoing assistance to people in the community who are unable to adequately care for themselves because of a severe or profound restriction in performing core activities of daily living. This level of activity restriction can be associated with early- and late-onset disability and/or age-related frailty. 

The assistance received from a primary carer helps many such people to avoid or delay longterm care in an institutional setting. To exercise a preference to stay at home, most people who need assistance rely heavily on family and friends. To describe this type of care as ‘informal’ is somewhat of a misnomer as there is nothing casual about taking primary responsibility for another person’s welfare. Rather, the term ‘informal care’ is used to reflect the fact that the care is provided according to the dictionary definition ‘without ceremony’. It is not arranged or regulated in any formal sense by government, non-government or volunteer organisations. While informal care can be interpreted to include non-parental care of children, this report focuses exclusively on the unpaid care provided by family and friends to people of all ages who are restricted in the activities of daily living through disability or age-related frailty.

In 1998, only 3% of people who reported an ongoing need for assistance with core daily activities of self-care, mobility and  communication relied solely on formal services. The vast majority received assistance from both unpaid carers and formal services. Recent years have seen a number of policy initiatives to support the pivotal role of family carers in Australia’s welfare system. To quote the 1996 Respite Review Report Carers have played, and always will play, a significant role in community care…the achievement of
government policy objectives in aged and community care rests on the extent to which the relationship between the carer and the person cared for can be sustained without unacceptable costs to either (DHFS 1996).