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

Research Report No. 16 – June 2008

12. Conclusion

Family care giving is usually generous and provided with love and compassion. It also frequently brings to the caregiver a personal sense of satisfaction and achievement. The pleasure of seeing a person with a disability responding to care, growing in capacity and developing their relationships and experiences is very powerful. While there are these personal benefits flowing to a caregiver, it nevertheless comes at significant emotional, social and economic cost to the family. The challenge for a community is to seek out ways in which the impact of these costs can be reduced so that families have the opportunity to experience a positive outcome from the caring role both for themselves and for the person with the disability. (Spicer, 2007, p. 30)

It has been estimated that in 2003 there were 474,600 primary carers of a person due to disability or age. As the Australian population ages, the number of carers is projected to increase in coming decades. Despite the large number of carers in Australia and the projected increase in their numbers, relatively little is known about the impact of providing care upon the caregiver and their families. This report has provided an analysis of the impact on carers and their families of caring for a person with a disability.

The analysis in this report was based on data from a nationally representative survey conducted in 2006 of carers who were receiving an Australian Government payment directed towards carers (Carer Payment and/or Carer Allowance). The Families Caring for a Person with a Disability Study (FCPDS) involved interviews with 1,002 of these carers. 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.

Key findings

Mental health

One of the key issues to emerge from this research is that carers and their families experienced very high rates of mental health problems. The data from Chapter 8 suggest that carers had significantly worse mental health and vitality and higher rates of depression than the general population. The differences between carers and the general population observed in the FCPDS were consistent with evidence on this issue from international reviews and population-based studies from overseas (e.g., Cochrane et al., 1997; Hirst, 2003; Pinquart & Sorenson, 2003), and major large-scale Australian studies (Cummins et al., 2007; Schofield et al., 1998). Moreover, carers in the FCPDS had, on average, greater mental health problems (that is, lower mental health scores) than patients with hypertension, congestive heart failure, type II diabetes and a recent acute myocardial infarction, when compared to normative information on mental health scores in other populations (Ware et al., 2002). Carers also had lower levels of vitality (that is, higher vitality scores) than patients with these same physical illnesses, except when compared to patients with congestive heart failure.99

Differences between carers and the general population on mental health, vitality and rates of depression were evident for female carers of all age groups, except when carers were 65 years or older. There were not sufficient numbers of male carers in some age categories to make a comparison with males in the general population. Cummins and colleagues (2007) also reported that the gap between carers and the general population in personal wellbeing, depression and stress was less when people were 55 years or older.

When we used the mental health scale as an indicator of clinical levels of depression, we found that the rates of clinical levels of depression in the last 4 weeks were 19% for female carers and 13% for male carers, while for females and males in the general population, they were 11% and 8% respectively. Fifty-one per cent of female carers and 30.7% of males also reported that they had been depressed for 6 months or more since they started caring. While these estimates of clinical levels of depression may appear high, in the Carer Health and Wellbeing study, Cummins et al. (2007) reported that 56% of carers had clinical levels of depression (19% extremely severe, 18% severe, 19% moderate) when carers reported on how they had been feeling over the past week. We attribute the lower estimates in the rates of depression in the FCPDS compared to the Carer Health and Wellbeing study to differences in the sampling frames. The FCPDS had a 73% response rate from a representative sample of carers receiving government payments, while in the Carer Health and Wellbeing study, members of the state Carers Associations were invited to participate (37% took part). In any case, the rates of depression in both studies were very high and the mental health of carers is clearly a concern.

Female carers also had higher clinical levels of depression than male carers (19% versus 13% in the last 4 weeks, and 51% versus 31% for 6 months since they started caring). These results were consistent with previous international research (e.g., Pinquart & Sorenson, 2006) and the Australian Carer Health and Wellbeing study (Cummins et al., 2007).

Family members also experienced periods of depression, with 27.3% of partners, 12.1% of parents and 10.6% of offspring of carers experiencing a depressive episode of 6 months or more since caring began (a "depressive episode"). Moreover, the carer's experience of depression was associated with other family members' experiences of depression, a finding consistent with other studies that have examined this issue (see Edwards & Clarke, 2004; Kissane et al., 2003; Pruchno & Patrick, 1999). For instance, carers' partners and children (with and without a disability) were twice to five times more likely to experience a depressive episode when the carer had also experienced a depressive episode of 6 months or more since they had started caring. Higher rates of depressive episodes for partners with no disabling condition and children (with and without a disability) were also evident when there were problems in dimensions of family functioning. Family functioning has also been reported to be a critical correlate of mental health in Australian studies of carers of cancer patients and their families (Edwards & Clarke, 2004; Kissane et al., 2003).

It should be noted that our study of family members' experience of depression had some limitations. First, although the question we asked about family members' experience of depression can be seen as being indicative of prolonged depressive symptoms, it was not a standardised diagnostic interview. Second, we relied on carers to report on other family members' depression; but mental health problems tend to be under-reported by proxies because feelings are not directly observable (Ball et al., 2000; McPherson & Addington-Hall, 2003; Todorov & Kirchner, 2000). Although it is less likely for there to be under-reporting of depression in the current study, as family members' depressive symptoms needed to occur for 6 months or more for carers to report them, there is still a possibility that carers may under-report family members' depression.

The risk of carers and family members experiencing a depressive episode of 6 months or more was greatest in the first year of caring. The risk of carers experiencing a first depressive episode of at least a 6-month duration was greatest in the first year of caring (over 13% of carers), but over the next 20 years the risk was fairly stable at about 3%. For other family members, the first year of caring accounted for 41.6% of all the first depressive episodes experienced by people with a disability and 17.9% of first depressive episodes of other household members. Although based on retrospective reports from carers and hence open to inaccuracies, previous research on this issue suggests that people tend to fail to recall previous depressive episodes rather than provide overestimates (Patten, 2003). In any case, these data highlight that the period of greatest risk for mental health problems for both carers and other family members is in the first year of caring. We are not aware of any comparable longitudinal data on self-reports of depression of carers and their relatives in any other study.

Several factors were associated with carers having more mental health problems, worse vitality and higher rates of depression than people from the general population. These included: caring for a child (rather than an adult) with a disability; caring for a person with a disability with high care needs; caring for more than one person with a disability; carers' having another care role of looking after children who did not have a disabling condition; having one or more problems in family functioning; and carers indicating that they needed a little or a lot more support.

In the context of the data from the FCPDS, early intervention is important in the first year of caring and thereafter, a less intensive, but easily accessible intervention may be more appropriate. The early intervention may need to be intensive, given our data on the interconnections between carers and other family members' mental health. It probably would need to address relationship issues such as poor family functioning, for instance, as this variable was associated with higher rates of depression within the family.

Physical health

We also examined the physical health of carers (Chapter 10). Almost twice as many carers were in poor physical health than the general population. These elevated rates of poor physical health were not the result of carers being older than the general population, as female carers had poorer physical health than females in the general population for all age categories except when aged 65 years or more.100 Moreover, they are consistent with the international empirical reviews of the differences in self-reported physical health between carers and the general population (Pinquart & Sorensen, 2003; Vitaliano et al., 2003).

Several factors were associated with higher rates of poor physical health for carers. Higher rates of poor physical health were associated with caring for a person with a disability who has high care needs, or with caring for more than one person with a disability. Schulz and Beach (1999) also reported that more intensive caring was associated with poorer self-reported physical health and even higher rates of mortality. Having one or more problems in family functioning was also associated with carers' self-rating of poor physical health, a finding that, to our knowledge, has not previously been reported in the research literature. Carers who indicated that they needed more support also had higher rates of poor physical health than carers who said the support they received was "about right". Pinquart and Sorensen (2007) also reported small but consistent associations between social support and self-reported physical health in a meta-analysis of correlates of carers' physical health. As many of the risk factors for poor physical health were the same for poor mental health of carers, a coordinated bio-psychosocial intervention may best meet the needs of carers and their families.

Employment

The analysis in Chapter 11 provided direct evidence on changes in labour force status of carers since starting caring. It is clear that many carers had stopped working since commencing caring and when asked why, a large majority said that it was because of their caring responsibilities. Interestingly, at least among non-employed carers, there is little difference in the employment rates prior to commencing caring between those who received only Carer Allowance and those who received Carer Payment.

The fact that a large number of non-employed carers of working age expressed a desire to be in paid employment suggests that policies that support carers who want to maintain some form of paid employment may be worthwhile. This is particularly important given that many carers will not remain carers all their life. There is strong evidence that long periods out of the labour force can make it difficult to re-enter the workforce. It is therefore important for their long-term economic outcomes that carers who want to work and whose caring responsibilities do allow participation in the labour market are assisted in achieving this. Further analysis of the FCPDS data will enable a more detailed understanding of the barriers to employment for primary carers, including factors such as availability of other carers and the employment of other family members.

Financial hardship

Compared to families from the general population, a higher proportion of families of carers suffered from greater financial hardship. Irrespective of which payment carers' families received, families that cared for a person with a disability experienced a higher level of financial hardship than the general population. For example, 30% of families with a carer receiving Carer Allowance and 29.2% of families with a carer receiving Carer Payment had experienced difficulty in paying electricity, gas or telephone bills on time. Only 14.6% of the general population indicated that they experienced financial hardship in this area. The high levels of financial hardship found in the FCPDS are consistent with other recent work on the costs of caring for a person with a disability in Australia. For example, using data from the 1998-99 Household Expenditure Survey, Saunders (2006) showed that, where there is someone in the household with a disability, financial hardship is more prevalent.

Relationships and support networks

We investigated carers' support networks, relationships, relationship breakdown and family functioning in Chapter 6. Although most carers had supportive people around them, there was a substantial minority of carers (one in five) who had no assistance from other people in caring for the person or people with a disability. For the majority of carers who did have support, the support provided was not without some issues attached. Even when carers had people to support them and the person with a disability, one in five carers had disagreements with others about caring. Of those carers who had support people, one in five had support people who had some problems with cooperating with other supporters about the care for the person with a disability. Disagreements about caring and problems with cooperating in the care of the person with a disability are issues that we do not believe have been investigated in other studies. These novel findings highlight that coordination, disagreement and conflict about care tasks can ensue from caring for a person with a disability and these can be barriers to the effective provision of informal care.

Subsequent analysis of these data suggest that, for carers who have people providing some support, only 49.8% had both no disagreements with the supporters and everyone cooperating with one another. Almost half of the carers indicated they needed more support, a finding that is not so surprising in light of the data on the lack of people available to provide support, problems with cooperation, and level of disagreements. The fact that one in two families do not use formal support services (as detailed in Chapter 4) may also explain the large proportion of carers who indicated they needed more support. Further analysis of the FCPDS data would provide more detailed information on the types of situations in which primary carers have no support people for themselves or the person with a disability. Further examination is also needed regarding primary carers who have support people that have difficulty cooperating or have disagreements about the care of the person with a disability. This analysis would inform policy development in this area.

Carers are satisfied with their relationships with their partners, or at least they are as satisfied as non-carers from the general population - even when their partner is the person with a disability. Although provision of care for a person with a disability is not associated with dissatisfaction with relationships between carers and their partners, children and parents, and the relationship between carers' partners and children, it does seem to affect carers' satisfaction with the relationships of their children with each other. This is consistent with research showing the negative impact of caring for a person with a disability on non-disabled siblings, perhaps because of the reduction in attention they receive (see Higgins et al., 2005).

Conflict is the aspect of family functioning that carers most frequently see as being problematic (one in three identified this aspect as a problem). Carers of someone with a psychiatric disability are the most likely to report two or more problems in family functioning, with carers of someone with a physical disability the least likely to report problems in family functioning. Poor family functioning is associated with greater care needs of the person with a disability, suggesting that the level of impairment is a good proxy measure of the likely impact of caring for someone with a disability on broader family relationships.

The FCPDS provides novel data on the timing and risk of increased arguments and relationship breakdown between carers and their partners since caring began. When a partner is being cared for and there is a relationship separation, the carer will usually cease to provide care, and therefore no longer be eligible for Carer Payment and/or Carer Allowance. Consequently, we restricted the sample to carers of a person with a disability who was not a partner. The results showed a heightened risk of arguments early on, but an even distribution of the risk of relationship separation over time (after accounting for the number of carers still caring in each subsequent year). Our analyses of the FCPDS data also suggested that almost one in three female carers aged 50 or less had separated or divorced since they started caring, while one in seven over the age of 50 had separated or divorced since they started caring. These results suggest that carers who are of the age where care responsibilities for children are most prevalent are under greater risk of separation. This finding is consistent with US studies that have showed that caring for a child with a disability was associated with a higher rate of separation or divorce (e.g., Graeffe & Lichter, 1999; Reichman et al., 2004; Risdal & Singer, 2004). The data from the FCPDS also suggest that support services that focus on addressing relationship conflict in the first year of caring and that target carers under the age of 50 would minimise separations and arguments between spouses. Future analyses could identify variables that are associated with the timing of arguments and separations so that support services could be targeted to achieve maximum effect to families most in need.

Hours of care

Sixty per cent of carers reported that they cared for the person with a disability for more than 100 hours per week. The large number of carers who stated that they provided more than 100 hours of care per week is likely to include the time associated with direct care as well as the time that would be associated with monitoring the person with a disability or being "on call". However, even monitoring the person with a disability or being on call has implications for the lives of the carer and their families. Carers may not feel that they can leave the person in their care by themselves, which has implications for engaging in a social life outside of the house independent of the person with a disability, and also involvement in employment. Further research using detailed diaries tailored to the caring experience could be used to investigate the type and amount of care provided to people with a disability by their family carer.

Multiple care responsibilities

Thirteen per cent of primary carers cared for two or three people with a disability. In addition, almost one in three cared for at least one child as well as the person with a disability (who could also be a child). Caring for more than one person with a disability, caring for a child with a disability and caring for other children without a disability was associated with carers having significantly worse mental health and vitality and higher rates of depression. Moreover, carers aged 18 to 50 - the age when they would most likely to be caring for children - had worse mental health and vitality, and higher rates of depression and separation. These data suggest that carers raising children with or without a disability or those caring for multiple family members with a disability are under significant stress. More needs to be done to support these groups.

Support services

The use of support services by families was described in Chapter 4. Although the focus of the survey was not on the needs of carers, we asked one general question on the types of services carers and their families used. Of concern was that almost half of carers' families did not use any support services, with the most commonly used services being respite care (13%) or a general practitioner (11%). The general nature of the question may have led to some underestimation of the number of services used by families. However, underestimation of service use was unlikely to be large as several services, including respite, were specifically mentioned by interviewers.101 Even though respite services were included in the question stem on service use, very few families used this type of service. Three out of five used respite for less than 20 hours per month and one in five used it for more than 50 hours per month. As the focus of the study was not service use, we did not explore the barriers to using respite, or service use more generally. Knowledge of the support services available to families caring for a person with a disability and the accessibility and affordability of these services may also be important factors in service use. Moreover, carers' ability to acknowledge their need for help may be a necessary precursor to access services. Our findings in this area highlight that there is a role for further research on service use.

Conclusion

As Spicer (2007) argued in the quote at the beginning of this chapter, the challenge for the Australian community is to give families an opportunity to care for a person with a disability, while minimising the social, emotional and economic costs associated with caring. This report has documented the significant emotional costs associated with caring for all family members - the primary carer, the person with a disability and other family members.

Carers raising children (both with and without a disability) or those caring for multiple family members with a disability were at particular risk of worse mental health outcomes. The evidence in this report also suggests that aspects of the family environment are critical to the good mental health of family members and the physical health of carers (such as good family functioning and adequate support to the carer). However, there are relationship costs for some groups - for example, one in three carers under the age of 50 years had separated from their partner since they had started caring.102 The economic costs to the carers and their families were also considerable. Many carers gave up work to care for the person with a disability and three-quarters of those who were not employed expressed a desire to work. Also, compared to families from the general population, a greater proportion of carers' families suffered from greater financial hardship.

This report has documented the substantial economic, social and emotional costs, not only for the primary carer but also for the family. The challenge for policy makers and the Australian community is to develop policies to create an environment that minimises these costs so that families can be best supported as they care for a person with a disability.

Footnotes

99. Comparisons were based on calculating 95% confidence intervals from standard errors provided in Ware et al. (2002).

100. There were not sufficient numbers of male carers in the different age categories to conduct analyses for male carers.

101. Interviewers asked the following question: "Could you please tell me whether you [or the person with a disability] (or another member of your household) use any disability services like respite, counselling, disability employment services or carer support services".

102. When a partner is being cared for and there is a relationship separation, the carer will usually cease to provide care, and therefore no longer be eligible for Carer Payment and/or Carer Allowance. Consequently, we restricted the sample to carers of a person with a disability who was not a partner.