Frequency of caregiving

One in four people aged over 16 in households identified themselves as a caregiver during the APMS 2007 interviews. This is twice the weighted rate reported by the Survey of Carers in Households 2009/2010 (10.9%) ^{Reference White2} and by the UK Census 2001 (10.0%). ^{Reference King, Balarajan, Blake, Cheshire, Darton and Gray34} This discrepancy might relate to the survey questions, to context, or to the sampling design. The Survey of Carers in Households 2009/2010 notes for example the potential for its methodological approach to underestimate ‘lighter touch’ or lower intensity caregiving. ¹⁹ Frequencies obtained by interviews conducted with a respondent ‘nominated by the householder’ (as was the case for the Survey of Carers in Households) are likely to differ from those where all members of the household are interviewed. ^{Reference King, Balarajan, Blake, Cheshire, Darton and Gray34} Both the General Household Survey (2000/2001) ^{Reference Maher and Green21} and the British Household Panel Survey (2007) ^{Reference Lynn35} used the latter approach, and obtained somewhat higher age-standardised estimates for the caregiving population, at 16.1% and 17.0% respectively (see Appendix C of the Survey of Carers in Households ¹⁹ ). In the APMS, one member was selected at random from each household and weighting was used to render the sample representative of the adult population in England. Using this robust approach, it also reports a larger caregiving population. The excess in the frequency of caregivers is restricted to those engaged in fewer caregiving hours per week (0-19 hpw). Rates of individuals engaged in higher amounts of caregiving (⩾20 hpw) are relatively consistent (APMS 2007: 4.4%, Survey of Carers in Households 2009/2010: 5.2%; ¹⁹ Census 2001: 3.9%, ^{Reference Young, Grundy and Kalogirou33} General Households Survey 2000: 4.1% ^{Reference Maher and Green21} ). Contrary to the Census, which identifies individuals taking part in at least 1 hpw caregiving, the APMS includes 0 hpw in its first category. This allowed for people providing regular caregiving of less than 4 h over a monthly period, and may account for the higher frequency of people taking part in lower amounts of caregiving. Alternatively, political and media attention may have influenced public acknowledgment of everyday activities as constituting ‘caregiving’. However, this might be expected to affect all surveys equally. If, nevertheless, the difference indicates early-stage caregiving in relation to an ageing population, it should be noted.

Fig. 1 (a) Psychiatric symptom score on the Clinical Interview Schedule - Revised (CIS-R) and (b) standardised perceived mental health score on the 12-item Short Form (SF-12) by amount of caregiving (unweighted means).

Corresponding increases in higher amounts of caregiving might, in consequence, be expected in the future. Indeed, although age-standardised rates of caregiving from the 2011 Census (completed after the APMS 2007) are yet to be released, provisional analyses suggest that the greatest rate of growth in the caregiving population over the past 10 years has been observed in those providing more than 20 hpw of care. At least for higher levels of care, most caregiving relationships in the APMS 2007 involved the provision of care by older participants. This is reflected in the predictive influence of age in the multivariate regression of physical health outcomes. Direct comparisons of caregiving data from the 2011 and 2001 Censuses should provide more accurate estimations of change statistics, with forthcoming releases expected from the Office for National Statistics’ beta testing project: ‘Characteristics of and living arrangements amongst informal carers at the 2011 and 2001 Censuses: stability, change and transition’.

Impact of caregiving

As predicted, caregiving was significantly associated with poorer mental health outcomes. This relationship remained robust in regression analyses even after the inclusion of confounding factors. The causal direction is unclear. Increased psychiatric symptomatology and rates of common mental disorder in care-givers may reflect shared vulnerabilities that have led biologically and socially related care-recipients to require support themselves. However, a number of considerations suggest that the mental health correlates are responses to the caregiving role. First, a relatively objective measure of amount of caregiving (number of hours per week) was used, as opposed to scaled measures of subjective feelings of burden ^{Reference Buyck, Bonnaud, Boumendil, Andrieu, Bonenfant and Goldberg12} that are likely to have a higher correlation with psychological distress. ^{Reference Vitaliano, Zhang and Scanlan10} Second, a significant and sizeable dose-effect in relation to amount of time devoted to caregiving per week was observed, with more pronounced declines in mental health observed at upwards of 10 hpw and also at greater than 100 hpw spent caregiving. This is consistent with studies analysing trajectories of caregiving in earlier national samples, ^{Reference Legg, Weir, Langhorne, Smith and Stott36,Reference Hirst37} and is difficult to interpret in terms of self-selection of psychiatrically disadvantaged people into the caring role. Third, again in line with previous studies, the relationship reported between caregiving and physical health was inconsistent, being significantly affected by moderating factors. The caregivers in question are older than the national average, and older populations generally have worse physical but better mental health than the average. ^{Reference Singleton, Maung, Cowie, Sparks, Bumpstead and Meltzer40,Reference Lazarus and Folkman41} The fact that this pattern was so different in caregivers is difficult to explain in terms of selection, and therefore makes a direct effect of the caregiving role on mental health a more likely explanation.

Caution is nevertheless advisable in interpreting the clinical significance of the dose-response relationship between hours per week spent caregiving and severity of psychiatric symptoms. A limitation associated with categorising caregivers according to hours spent caregiving is that it may implicitly suggest a uniform impact of care associated with 1-unit h. Caring for people with mental as well as physical health problems is known to be associated with higher levels of distress than caring for those with physical health issues alone. ^{Reference Singleton, Maung, Cowie, Sparks, Bumpstead and Meltzer40} This distress may accordingly be experienced at lower amounts of caregiving, which further justifies the inclusion of individuals who identify as carers but who quantify their regular level of caregiving activity at less than 1 hpw (i.e. 0 hpw). The observed dose-response relationship may therefore be moderated by variables such as care-recipient illness, kinship and face-to-face contact time. It may also be affected by changes in available resources and competing demands. A partial reversal in declining CIS-R scores associated with increased caregiving hours was observed at the second highest amount of caregiving (35-99 hpw). This might be explained by changes in compounding stressors including employment as people retire and take on greater caregiving activities associated with older age. A substantial increase in the proportion of people not having worked in the past year was observed in those endorsing 35-99 hpw caregiving in comparison with lower amounts of care (Table 1). It may alternatively indicate some psychological adjustment to the stresses associated with caregiving as hypothesised in stress-appraisal-coping models. ^{Reference Lazarus and Folkman41}

We anticipated that greater data capture in the 0-19 hpw caregiving group in comparison with previous surveys might accentuate reported differences in outcome measures when compared with individuals engaged in higher amounts of care-giving (⩾20 hpw). This provided one rationale for ensuring that comparisons in outcome measures were made across at least three groups of caregivers (including non-caregivers). However, a dose-response relationship was consistently observed between amount of caregiving and health outcomes in comparisons based on a three-group split and a five-group split. Nevertheless, within-group variation in the levels of distress experienced per unit hour of caregiving activity should not be underestimated.

Limitations

The data relied on self-report, without collateral corroboration. This might lead to underreporting of physical conditions: participants may have undiagnosed symptoms, or they may be unaware or forgetful of a previous diagnosis. However, the requirement that physical conditions had been diagnosed by a health professional should increase consistency by constraining the ailments included. The validity of findings from self-report measures is also supported by the significant correlations between perceived and observer-rated measures of physical and mental health. Furthermore, self-reported mental health has intrinsic value as an indicator of psychological distress, particularly given the central role of subjective carer appraisals in cognitive models of carer burden or the impact of care. ^{Reference Lazarus and Folkman41,Reference Szmukler, Burgess, Herrman, Bloch, Benson and Colusa42} The study also relied on self-report for measuring time spent caregiving. Although this method has been validated, it may lead to overestimations or underestimations of caregiving levels and is less accurate than diary techniques. ^{Reference Van den Berg and Spauwen43} In addition, the APMS survey did not assess some important characteristics of caregiving roles, which we were therefore unable to analyse in relation to physical and mental health. These included the basis of the relationship between caregiver and care-recipient, whether they lived together, the duration of the caregiving role and the care-recipient’s type of illness. Our findings therefore relate to the generality of caregiving: caring for people with specific problems may result in specific patterns of impact. Finally, the data were obtained cross-sectionally, which limits causal inference.

Implications

We have demonstrated the significant health consequences of caregiving, even at lower levels of care. This is relevant to approximately 5.8 million people in England and Wales who currently identify themselves as caregivers. ^{Reference White2} For individuals providing more than 20 hpw of care (over 2 million in England according the 2011 Census), ²⁰ the mean excess score in comparison with non-caregivers was three points on the CIS-R. By contrast, the equivalent change in CIS-R score in relation to the unpleasant experience of job loss was zero in two-thirds of participants, and around one for most of the remainder. ^{Reference McManus, Mowlam, Dorsett, Stansfeld, Clark and Brown44} Moreover, the proportion of individuals meeting clinical thresholds for psychiatric symptoms in this group was twice that observed in non-caregivers.

Our results indicate, first, the need for pre-emptive policies to identify caregivers at an early stage and to target support services appropriately. This raises the issue of how best to identify and communicate with caregivers at an early stage. Second, although varying definitions of caregiving might lead to variations in reported frequency, the present study affirms that objective measures of caregiving demand (hours per week) are informative. Hence, we recommend their inclusion in the quick assessment instruments being developed for caregivers. ^{Reference Cameron, Aggar, Robinson and Kurrle6,Reference Cormac and Tihanyi7} Finally, understanding differences in the effect of caregiving roles in relation to individuals with different mental and physical conditions will help services to provide targeted information and support to enable families to cope effectively.

Although these considerations will apply across jurisdictions, recent developments in the UK are of interest. The government is embarking on an ambitious new public health strategy that stipulates ‘No health without mental health’ ⁴⁵ and which centres on the devolution of public health governance to local communities (including the Health and Social Care Act 2012). ‘Carers at the Heart of 21st-Century Families and Communities’ is the title of the current UK Carers Strategy. ⁴⁶ The Department of Health has funded a ‘Supporting Carers in GPs programme’ and, in association with the Royal College of General Practitioners, has conducted a pilot training programme (2010) for general practitioners on best practice in incorporating a carers policy. ^{Reference Jones, Mackenzie, Greenwood, Atkins and Habbibi47,48} Carers UK continues to train volunteer ‘carer ambassadors’ to act as liaison officers in directing this policy in practice. ^{Reference Carers49} However, despite positive feedback on the pilot, it was noted by participants that ‘services for carers were unlikely to improve significantly without incentives and additional resource’. ⁴⁶ General practitioners are already taking on increased duties in administering the clinical commissioning groups proposed by the Health and Social Care Bill. In addition, evidence suggests that taking on a caregiving role does not necessarily translate into increased contact with primary care service. ^{Reference Arksey and Hirst50} The development of tangible actions to identify and engage caregivers remains a priority.