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

Research Report No. 16 – June 2008

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9. Mental health of other family members, including the person with a disability

Ben Edwards

We are not aware of any large-scale population studies in Australia or internationally that have focused on the mental health of family members of the primary carer other than the person with a disability. In this section, we focus on one aspect of mental health: the experience of a depressive episode by family members with and without a disability. The Families Caring for a Person with a Disability study collected information about the mental health of other family members, not just the primary carer. Carers were asked whether any family members had been depressed or sad (even if they felt OK sometimes) for 6 months or more since caring began. This question was adapted from the Kemper three-item screening measure for depression, which has been found to be a valid indicator of clinical levels of depression (Kemper & Babonis, 1992; Lanzi et al., 1999) and can be considered an indicator of clinical levels of depression - a key criteria for a major depressive disorder is a depressed mood for most of the day for more than a 2-week period. Consequently, when a family member had experienced a period of 6 months or more where they reported being depressed or sad (a "depressive episode"), carers were also asked in what year(s) the depressive episode had occurred.79 The timing of depressive episodes relative to when the carer started caring could also be calculated.

Family members who have a disabling condition had a very similar number of depressive episodes (17.2%) compared to family members who did not have a disability (16.7%).80 Instead of the disabling condition, the experience of a depressive episode was related to the persons' relationship to the carer. Figure 9.1 indicates partners of the primary carer81 were much more likely to have experienced a depressive episode of 6 months or more (27.3%) than were carer's parents (12.1%) and carer's children (10.6%).

Figure 9.1 Family members' experience of depression

Note: More partners experienced a depressive episode than children and parents of the primary carer (χ2 (2) = 93.67, p < .001).
Source: FCPDS 2006

Table 9.1 provides the percentage of family members experiencing a depressive episode of 6 months or more, depending on whether the family member had a disability or not, and according to their relationship with the primary carer (partners, children and parents of carers). Slightly more partners who were not disabled (28.5%) than partners who were disabled (26.4%) had been depressed for 6 months or more since the carer started caring, but this was not statistically significant. Children's rates of depressive episodes were very similar, irrespective of whether the child had a disability or not; in both cases, approximately 10% experienced a depressive episode of 6 months or longer. Parents who had a disability had higher rates of depressive episodes (12.9%) than parents who did not have a disability (7.4%); however, given the small numbers of parents without a disability living in the same household as the carer, this was not statistically significant.

Table 9.1 Family members who have experienced depression for 6 months or more since the carer started caring
Relationship to carer Has a disability (care recipient) Has no disability (other household members)
Depressed (%) Total no. (%) Depressed (%) Total no. (%)
Partner
26.35
425
28.49
344
Offspring
10.47
487
10.76
641
Parent
12.90
155
7.41
27
Total number of observations
183
1067
169
1012

Note: People with a disability were no more likely to be depressed than other relatives when they were partners (χ2 (1) = 0.44, p > .05), offspring (χ2 (1) = 0.03, p > .05) and children (χ2 (1) = 0.65, p > .05) of the primary carer.
Source: FCPDS 2006

Gender and family members' experience of depression

As was noted in the previous section addressing carers' mental health, females in the general population tend to show higher rates of depression than males. We compared the experience of depression for male and female partners, and children and parents of carers. Female partners with a disability had higher rates of depression than male partners (see Figure 9.2). The reverse trend was evident for partners with no disability: a higher percentage of male partners than female partners had experienced a depressive episode of 6 months or longer. However, it should be noted that there were only 14 female partners of carers and, consequently, these differences may simply be due to sampling error; moreover, they were certainly not statistically significant. The small number of female partners of carers reflects the well-documented gendered nature of caring, as females are most likely to be the primary carer (see Chapter 1).

Figure 9.2 Carers' partners' experience of depression, by disability status and gender

Notes: Female partners with a disability had significantly higher rates of depression than male partners with a disability (χ2 (1) = 7.53, p < .01). For carers' partners who did not have a disability, there was no statistically significant difference in the rate of depression (χ2 (1) = 0.36, p > .05) between male and female partners. 
Source: FCPDS 2006

As has been noted, far fewer offspring of carers experienced a depressive episode than partners of carers. There were no differences in the rates of experiencing a depressive episode for offspring with and without a disability (see Figure 9.3). There was also no statistically significant gender difference for offspring with a disability and without a disability.

Figure 9.3 Carers' offsprings' experience of depression, by disability status and gender

Notes: There was no statistically significant gender difference for offspring with a disability (χ2 (1) = 0.01, p > .05) and without a disability (χ2 (1) = 0.50, p > .05). 
Source: FCPDS 2006

Very similar percentages of men and women with a disability who were cared for by their adult children experienced a depressive episode (see Figure 9.4). Slightly more mothers (13.7%) than fathers (10.5%) with a disability had experienced a depressive episode of 6 months or more since their child began caring for them; however, this was not statistically significant. As can be noted from Table 9.1, there were only 27 parents with no disability residing in the carers' household. As a consequence, it is not possible to draw any firm conclusions from an examination of gender differences in the depressive episodes of these parents. No fathers and 12.5% of mothers without a disability experienced a depressive episode of 6 months or more. However, the gender differences in parents with no disability for the rates of depressive episodes may be simply an artefact of measurement error due to the small sample size.

Figure 9.4 Carers' parents' experience of depression, by disability status and gender

Notes: There was no statistically significant difference between the rates of depression of male and female parents with a disability (χ2 (1) = 0.25, p > .05).
Source: FCPDS 2006

In summary, a greater percentage of female partners who had a disability experienced a depressive episode of 6 months or longer when compared to male partners with a disability. However, there were no gender differences in the experience of depressive episodes of 6 months or more for parents and offspring of carers. The lower rates of depressive episodes experienced by offspring and parents of carers may offer some explanation for the lack of gender differences in these groups. The results from this section do suggest female partners with a disability were at particular risk of a depressive episode and could be the focus of more targeted support.

Timing of family members' first depressive episode

When carers were asked whether their family members had been depressed for 6 months or more, they were also asked in what year the depression occurred. As the FCPDS also collected information on when carers first started caring, we were able to determine the number of years from when carers started caring to when family members had their first depressive episode. Figure 9.5 details the timing of first depressive episodes for family members with and without a disabling condition. Similar to the timing of first depressive episodes of carers (see Figure 8.5), the most obvious feature of Figure 9.5 is that the greatest number of depressive episodes for both people with a disability and other family members occurred in the first year of caring. Sixty-two people with a disability and 34 other household members experienced their first depressive episode in the first year of caring (year 0). This 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. The rate of first depressive episodes dropped off markedly after the first year for people with a disability - a further 44 people with a disability (29.5%) experienced a first depressive episode over the next four years following the first year. The rate of first depressive episodes for family members was a little more evenly spread over the years since care commenced, with 78 family members experiencing their first depressive episode over the next four years (41.1% of all depressive episodes experienced).

Figure 9.5 Reports of first depressive episodes for family members with and without a disabling condition, by years since started caring

Source: FCPDS 2006

Although greater numbers of people (both those with a disability and other family members) experienced a first depressive episode in the early years since the carer commenced caring, the length of time that individuals were "at risk" may have inflated the numbers experiencing a first depressive episode in the early years. Unlike carers, however, it is not straightforward to assess the risk period for people with a disability and other family members from our data. For people with a disability and other family members to have been "at risk", they needed to be residing in the household for the duration of the caring period and be of an age when depression could be assessed (4 years or older) (Sawyer et al., 2000). Any attempt to calculate the risk of experiencing a depressive episode over time needs to take these issues into account. We did not conduct such an analysis, given the inherent complexity and the number of assumptions needed. Consequently, the data we have presented can be considered indicative, but not definitive, data on the timing of first depressive episodes of people with a disability and family members.

The implications of the timing of the depressive episodes of people with a disability and other family members are similar to those for carers. Early intervention may be particularly important given that 28.9% of people with a disability and 41.0% of family members experienced a first depressive episode in the first four years of caring.

Demographic and caring characteristics and family members' mental health

In this section, we focus on a few demographic, caregiving and family variables and see how they relate to the experience of depression of family members.

Age and disability status

In the general population, the peak age period when people experience depression is in late adolescence and early adulthood. We examined age differences for partners and offspring of carers (but not for parents of carers, as the number of parents in the household was too small to derive reliable estimates from any statistical analysis). The analyses also compared partners and offspring of carers who had a disability and those who did not.

Partners

For partners with a disability, there was a decrease in the percentage that experienced a depressive episode as they got older (Figure 9.6). This trend approached, but did not reach, statistical significance and was consistent with the experience of depression in the general population - namely, a decline in the rate of depression as people age. The experience of depressive episodes for partners without a disabling condition was very different. Overall, fewer partners without disabling conditions were experiencing a depressive episode, but a much greater percentage of partners aged 51 to 65 years of age experienced a depressive episode than the other age categories. A greater percentage of partners aged 51 to 65 years of age with no disabling condition had experienced a depressive episode than partners with a disabling condition (however, this difference was not statistically significant). It should also be noted that, although a greater percentage of partners with a disabling condition experienced a depressive episode in the other three age categories, these were not statistically significant differences.

Figure 9.6 Carers' partners' experience of depression, by partners' age and disability status

Notes: A smaller percentage of partners with a disability experienced a depressive episode in each successive age group; however, this trend was not statistically significant (χ2 (3) = 7.01, p < .10). The statistical test suggested that a greater percentage of partners with no disabling condition aged 51 to 65 years of age experienced a depressive episode than the other age categories (χ2 (3) = 38.84, p < .001). Although it appears that a greater percentage of partners aged 51 to 65 years of age with no disabling condition had experienced a depressive episode than partners with a disabling condition, this difference was not statistically significant (χ2 (1) = 1.36, p > .05). There were also no statistically significant differences between partners with a disabling condition in the other three age categories who experienced a depressive episode than partners with no disability (χ2 (1) = 0.53 to 2.23, p > .05). 

Source: FCPDS 2006

Offspring of carers

The percentage of carers' offspring who experienced a depressive episode varied depending on the age of the son or daughter and whether they had a disabling condition (Figure 9.7). When offspring had a disability, those aged 31 years or more had the highest rates of depressive episodes (although only 39 offspring were in this category; therefore this result may not be accurate, given the sample size). Secondary-school aged children (13 to 18 years of age) had the next highest rate of experiencing a depressive episode (13.9%). Primary-school aged children had a lower rate of depressive episodes (10.0%). These rates should be interpreted in the context of population estimates of depressive disorders for primary- and secondary-school aged children. Australian estimates of depression in primary-school aged children are 3.7% for males and 2.1% for females; and in secondary-school aged children, 4.8% for males and 4.9% for females (Sawyer et al., 2000). In this context, rates of depressive episodes among children with a disability in primary and secondary school are twice to three times that of the general population.

Figure 9.7 Carers' offsprings' experience of depression, by age and disability status

Notes: There were no statistically significant differences between offspring with and without a disabling condition for each of the five age groups (χ2 (1) = 0.05 to 2.06, p > .05).
Source: FCPDS 2006

Among carers' offspring without a disability, young adults were the ones with the highest rates of depressive episodes. Eighteen per cent of carers' offspring who were aged 18 to 31 experienced a depressive episode of 6 months or more since the carer started caring. Secondary-school aged children of carers were the group with the second highest rates of depressive episodes at 14.8%. While there were some differences in the pattern of depressive episodes across the age categories for offspring with and without a disability, these were not significantly different from one another for each of the five age groups.

Family members' experience of depression and carers' depression

In the chapter on carers' mental health, an association between the number of family members who had experienced a depressive episode and carers' mental health was noted (see Figure 8.24). In this section, we explore this issue further by examining the association between different types of family members' experience of a depressive episode and the primary carers' mental health. We first examined the association between carers experiencing depression in the last 4 weeks and family members' experience of a depressive episode of 6 months or more since caring began. Figure 9.8 suggests that carers' experience of depression in the last 4 weeks was associated with higher rates of depressive episodes for partners of carers who did not have a disability, but not for partners with a disability. Higher rates of depressive episodes among offspring were evident when the carer had been depressed in the last 4 weeks (regardless of whether the offspring had a disability), but not among parents with a disability. It should be noted that there were too few parents without a disability (n = 27) living in the household to test the association between carers' depression and parents' experience of a depression episode.

Figure 9.8 Family members' experience of depression, by disability status and whether carer was depressed in the last 4 weeks

Notes: Carers' experience of depression in the last 4 weeks was associated with higher rates of depressive episodes for partners of carers who did not have a disability (χ2 (1) = 7.63, p < .01), but not for partners with a disability (χ2 (1) = 0.28, p > .05). Higher rates of depressive episodes were evident when carers were depressed in the last 4 weeks for children with a disability (χ2 (1) = 6.58, p < .05) and without (χ2 (1) = 6.20, p < .05), but not for parents with a disability (χ2 (1) = 0.08, p > .05).
Source: FCPDS 2006

There were stronger associations between carers' experience of a depressive episode since they started caring and the experience of depression in carers' parents and offspring (Figure 9.9). Therefore, there were higher rates of depressive episodes for partners (both with and without a disability) when carers also experienced a period of 6 months or more of depression since caring began. Forty-three per cent of carers' partners who did not have a disability experienced a depressive episode when the carer experienced a depressive episode, compared to 8.9% of partners of carers who had not experienced depression in the care period. This represents almost a five-fold increased risk. When partners of carers had a disability, they were twice as likely to have experienced a period of depression when the carer had also had a depressive episode of 6 months or more since caring began (39.2% versus 18.9%).

Figure 9.9 Family members' experience of depression, by disability status and whether carer has been depressed for 6 months since starting caring

Notes: When carers experienced a period of depression for 6 months or more, family members had higher rates of depressive episodes that were statistically significant when the family member was: a partner with a disability (χ2 (1) = 20.85, p < .001) and without (χ2 (1) = 48.61, p < .001); and children with a disability (χ2 (1) = 5.66, p < .05) and without (χ2 (1) = 22.47, p < .001). Parents with a disability did not have significantly higher rates of depression when carers had experienced a period of depression for 6 months or more (χ2 (1) = 2.15, p > .05).
Source: FCPDS 2006

Offspring of carers who had experienced a depressive episode since caring began were also at a greater risk of experiencing depression. Carers' offspring with a disability were twice as likely to experience depression when carers had also been depressed since caring began (13.1% versus 6.4%). Offspring who did not have a disability were at even greater risk of depression when carers had experienced depression, with these offspring being four times more likely to have experienced depression in the caring period when the carer had been depressed (15.7% versus 3.8%).

Parents with a disability were the only group who did not have significantly elevated rates of depression when the carer had experienced a depressive episode of 6 months or more. Although exploration of the mechanisms by which other family members were at higher risk of experiencing depression when the carer experienced a depressive episode are beyond the scope of the current report, it is likely that being older may have been a protective factor for carers' parents.

In summary, partners and offspring of carers were twice to five times more likely to experience a depressive episode of 6 months or more when the carer also had experienced a depressive episode of 6 months or more since caring began. When carers had been depressed in the last 4 weeks, their offspring (both with and without a disability) and partners without a disability were also at an increased risk of depression; however, partners with a disability did not have an increased risk of depression. The differences between results when the carer had been depressed in the last 4 weeks compared with a depressive episode of 6 months or more highlight the stressful nature of a prolonged experience of depression for family members.

Family functioning

As has been noted in Chapter 5, family relationships can become strained as a result of caring for a person with a disability, although good family functioning can be an important protective factor for the mental health of family members (see Chapter 7). Figure 9.10 highlights the influence that family functioning has on family members' experience of depressive episodes. There was a significant association between family functioning and the experience of a depressive episode of partners who did not have a disability (but not for depression in partners with a disability). Where there were two or more problems in family functioning, partners with no disabling condition had over twice the rate of depressive episodes than partners with no disability who lived in households with no family functioning problems (46.3% versus 21.7%). Family functioning was also associated with the experience of depressive episodes by children with and without a disability. For example, children (both with and without a disability) who lived in a family with two or more problems in family functioning had over 2.5 times the rate of depressive episodes than children with no problems in family functioning. Although there was not a significant association between the experience of depressive episodes and family functioning for parents with a disability, there was a trend for a greater proportion of parents with a disability to experience more depressive episodes in families with more problems with family functioning. These results underscore the important role that strong family relationships play in protecting against mental illness (Edwards & Clarke, 2004) and suggest that interventions aimed at improving the mental health of those caring for a person with a disability need to address family relationships (for an example of this approach, see Kissane & Bloch, 2002).

Figure 9.10 Family members' experience of depression and family functioning problems, by disability status and number of problems

Notes: There was a significant association between family functioning and the experience of a depressive episode by partners who did not have a disability (χ2 (2) = 9.15, p < .05), but not with the depression of partners with a disability (χ2 (2) = 1.00, p > .05). Family functioning was also associated with the experience of depressive episodes of children with a disability (χ2 (2) = 9.15, p < .05) and without (χ2 (2) = 11.11, p < .01).
Source: FCPDS 2006

Conclusion

Results from carers' reports of family members' experience of depression found that 27.3% of partners, 12.1% of parents and 10.6% of offspring had experienced a depressive episode of 6 months or more since caring began. The only gender difference that we found was that female partners with a disability experienced more depression (34.2%) than male partners with disability (27.0%).

The risk of family members experiencing a depressive episode of 6 months or more was greatest in the first year of caring. This 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.

Partners and offspring of carers (both 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.

Footnotes

79. A discussion of the validity of proxy reports of mental health can be found in Chapter 3.

80. These differences were not statistically significant (χ2 (1) = 0.44, p > .05).

81. In this section, when we talk about "partner with a disability", we mean that the person with a disability for whom the carer is providing care is that carer's partner.