The nature and impact of caring for family members with a disability in Australia

Research Report No. 16 – June 2008

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1. Introduction

"When you're a carer, you need to realize that you've got to take care of yourself, because, not only are you going to have to rise to the occasion and help someone else, but you have to model for the next generation." Naomi Judd (2004)

A measure of the success of a society is the extent to which those requiring care because of disability or old age receive the care they need in a dignified way. In Australia, a great deal of care is provided informally, often by family members. More than one in ten adults (13%) provide some assistance to someone who needs help because of disability or age. Of these carers, about one in five is the primary carer5 (Australian Bureau of Statistics [ABS], 2004). This means that around 2.4% of Australian adults (that is, approximately 474,600 primary carers in Australia) provide primary ongoing help or supervision to someone who needs help because of disability or age.

It is widely recognised that those who provide unpaid care make a major contribution to society, and the efforts of carers are widely applauded. There is an increasing recognition of the economic significance of informal care. Access Economics (2005) estimated the annual value of informal care in Australia ranged from $4.9 billion to $30.5 billion (in 2005 dollars), depending upon the method used to estimate the economic value of caring.

Caring can have an impact upon the carer. While we know quite a lot about the impact of caregiving upon the physical, mental or emotional health of carers (Pinquart & Sorensen, 2003), little is known about how the caring role affects family relationships. Understanding the impact of long-term caring upon carers and their families is particularly important given the growth in recent years in the number of people requiring care (and hence the increase in demand for carers), coupled with projections of the continued growth in demand for carers (e.g., NATSEM, 2004).6 The increasing demand for carers is in part a consequence of the structural ageing of the population (NATSEM, 2004). It is also a consequence of the shift from institutional care to community care for adults with a disability. There is some evidence that this shift has increased the burden on carers (Tolhurst, 2001).

The limited Australian research available suggests that caring for a person with a disability can limit the social networks of the carer (Schofield et al., 1998) and may have a negative effect on family cohesion and flexibility and marital happiness (Higgins et al., 2005). Moreover, poorer family relationships have also been associated with greater carer burden (Schofield et al., 1998) and depression and anxiety (Edwards & Clarke, 2004). While the employment rates of carers have been documented as being lower than those of non-carers, there is little Australian research that examines the causal impact of caring on paid employment (Bittman, Hill, & Thomson 2007; de Vaus, 2004; Lee & Gramotnev 2007). Much of the research to date is based upon small and unrepresentative samples and therefore cannot be generalised. Another limitation of the Australian and international research is that it has focused on the primary carer and, as a consequence, much less is known about the effect that caring for a person with a disability has on other family members and the nature of family functioning (family dynamics) (see Chapter 5).

Who provides care for people with a disability?

The Australian Bureau of Statistics 2003 Survey of Disability, Ageing and Carers (SDAC) estimated that there were 474,600 people who were the primary carers of a person because of disability or age. Seventy-one per cent of these primary carers were women and the largest age group among primary carers were 45 to 54 years old (ABS, 2004). The main disabling conditions for younger people being cared for were intellectual and developmental disorders, whereas for older people physical conditions predominated (Australian Institute of Health and Welfare [AIHW], 2004).

The proportion of primary carers in the Australian population increases with age. One per cent of 18- to 24-year-olds are primary carers and this increases with age until 5% of 55- to 64-year-olds are primary carers (and stays around 5% for older age groups) (ABS, 2004).

The SDAC 2003 data and other studies confirm that the burden of care falls unequally on women. Gender differences have been found in relation to: (a) who provides care; (b) the patterns of care provided (consistent with the generally gendered nature of the division of labour in most household tasks); and (c) carer burden or distress. For example, Essex and Hong (2005) found evidence of a traditional division of labour for most tasks among older married parents caring for adult children with an intellectual disability - with women shouldering most of the caregiving tasks. While the majority of carers are not employed, even when carers are employed there is still an imbalance in the amount of care provided by men and women. For instance, Neal, Ingersoll-Dayton, and Starrels (1997) noted the differential impact of the gender imbalance in the provision of care:

Among employed caregivers of elders, nearly all studies have revealed a more profoundly negative effect on work-family conflict and work-role strain for women than men. (p. 805)

Increased labour force participation of women, combined with these gender differences, raises concerns about the availability of carers.

Our understanding of the impact of caring on a broad range of measures of wellbeing of carers, family members and family relationships has been limited to date by a lack of representative surveys with a large enough sample of carers that combine measures of health, family relationships and economic outcomes. In order to begin to fill this gap, the Families Caring for a Person with a Disability Study (FCPDS) was conducted in 2006. The sample for the FCPDS consisted of 1,002 primary carers receiving Carer Payment or Carer Allowance (see Chapter 2 for a description of these payments).

The FCPDS investigates the impact on carers who received Carer Payment and/or Carer Allowance, and their families, of caring for a person with a disability. The aims of this report are to:

  • examine the effect of caring on family and social relationships;
  • document the social, emotional, physical and financial impact on families of caring for a person with a disability;
  • examine the effect of caring on labour force status.

In this study, we focus on primary carers who are adults. However, we are aware that there are unique issues faced by children and young adults who have care responsibilities for adults or other family members (Williams, 1996). A study specifically focusing on children who have caring responsibilities would be better placed to address these unique issues.

Outline of the report

Chapter 2 provides a description of Carer Payment and Carer Allowance, as well as the policy background of these government payments for caring for a person with a disability. It also details the growth in recent years in the cost of Carer Payment and Carer Allowance and the number of carers receiving them, and describes the characteristics of people receiving these payments.

Section B incorporates two chapters that describe the methodology of the FCPDS and the demographic characteristics of the participating carers and their families. Specifically, Chapter 3 details the methodology of the current study, including the procedure, non-response analysis, representativeness of the survey, information about the measures and statistical analyses. Chapter 4 describes the demographic characteristics of the sample of carers, the people with a disability that they care for and other family members in the carers' households. The chapter also documents the financial situation of carers' families and the use of services by carers, people with a disability and other members of the family.

Section C focuses on family relationships and support networks. Chapter 5 reviews studies examining the impact that caring for a person with a disability has on the primary carer (and, where information is available, on family members), with respect to family relationships and support networks.7 In the literature review chapters in the report, we are selective in the papers we review8 in that we focus on large-scale representative studies (where available) to ensure that the evidence reviewed was based on representative data. Chapter 6 presents empirical results of the FCPDS with respect to the relationships, family functioning and support networks of carers and their families, and factors associated with these variables.

The mental and physical health of families caring for a person with a disability is the focus of Section D. Chapter 7 reviews studies examining the emotional and physical impact of caring for a person with a disability on the primary carer (and, where information is available, on family members). The empirical results are described in Chapters 8 through 10. Chapter 8 compares the mental health of carers to the general population, as well as identifying variables that were associated with mental health. Chapter 9 focuses on the mental health of other family members and the factors associated with their mental health. Carers' physical health and correlates of poor physical health are also the focus of Chapter 10.

Section E comprises Chapter 11, which reviews the literature and presents empirical data on the employment status of carers and family labour force status.

In the final section, Chapter 12 provides a summary of the main findings of the report, a comparison of findings to prior research and a discussion of some policy implications of these findings. Future research directions are also explored in this chapter.


5. The 2003 Australian Bureau of Statistics Survey of Disability, Ageing and Caring (ABS, 2004) defines a "carer" as "a person of any age who provides any informal assistance, in terms of help or supervision, to persons with disabilities or long-term conditions, or older persons (i.e. aged 60 years and over). This assistance has to be ongoing, or likely to be ongoing, for at least six months. Assistance to a person in a different household relates to 'everyday types of activities', without specific information on the activities. Where the care recipient lives in the same household, the assistance is for one or more of the following activities: cognition or emotion; communication; health care; housework; meal preparation; mobility; paperwork; property maintenance; self care; and transport" (p. 71). A "primary carer" is defined by the ABS as "a person who provides the most informal assistance, in terms of help or supervision, to a person with one or more disabilities. The assistance has to be ongoing, or likely to be ongoing, for at least six months and be provided for one or more of the core activities (communication, mobility and self-care)" (p. 77).

6. NATSEM, the National Centre for Social and Economic Modelling, (2004) projected that the number of older Australians needing assistance because of severe or profound disability will rise by 160% from 2001 to 2031.

7. A literature review of employment issues and labour force status for carers is incorporated into the employment empirical chapter (Chapter 11).

8. Appendix A documents the literature search process in detail.