Impacts of Care II

The data regarding physical health effects of caregiving, however, are less strong. Caregivers often report their health to be worse than do non-caregivers. However, the results across studies are inconsistent (Schulz et al., 1995). We cannot draw clear conclusions from these data for any subgroup of caregivers. However, those caregivers reporting high psychological distress often also report health problems, alerting us to a potentially high risk group in need of intervention.

No clear conclusions can be drawn about ethnic differences in psychological or physical distress of caregivers. Again, there are inconsistent findings across studies with some reporting no differences in psychological or physical health outcomes and others reporting that White caregivers report more distress and burden (c.f. Calderon and Tennstedt, 1998; Ory et al., 1999). Given that minority elders are more disabled and receive more care, it is reasonable to expect that caregiver burden or distress would be higher. However, research to date does not generally support this. I would caution against quickly assuming that cultural differences (e.g., increased familism or reciprocity) mediate the negative effect of care on caregivers well-being. A recent qualitative analysis in NERI’s cross-cultural comparative study raises the possibility that these lower levels of burden in minority caregivers are a product of the measures used in previous studies – measures developed with White populations. This analysis (Calderon and Tennstedt, 1998) reveals that minority caregivers express their distress differently than do White caregivers – using anger, frustration, and somatic complaints – which are not captured in the common measures of caregiver burden. It is incumbent upon researchers to develop culturally sensitive measures of caregiver distress.

This brings us to an area of increasing interest to researchers and one with important implications for service providers. Caregiving is not universally distressing. There are a great many caregivers who report minimal or no untoward effects of their helping role (McKinlay et al., 1995) and describe caregiving in positive terms (National Alliance for Caregiving, 1997). Researchers are now interested in factors that cause distress and, perhaps even more important, factors that mediate distress. It has been commonly assumed that caregiving distress is related to caregiving tasks – the more care provided, the more burden for the caregiver. More recent sophisticated analytical models have shown this not to be true (Schulz et al., 1995; Yates et al., 1999). Neither the disability status or the amount and type of care provided are related to caregiver burden. However, the manifestations of problem behaviors (wandering, hitting, disrobing) associated with AD or other dementias has been consistently related to greater caregiver burden and likely account for the differences between dementia caregivers and non-dementia caregivers in perceived burden.

Because the amount of care provided does not result in caregiver burden, the caregivers perception or appraisal of the caregiving demands has been of recent research interest. The MEHP measured this appraisal using a scale of role overload (Pearlin et al., 1990), which indicates how much an individual feels overwhelmed by the tasks of caregiving, specifically perceptions of exhaustion, having enough time for oneself and to do required tasks of caregiving, and perceived progress in terms of caregiving. The results of the path analysis model (Figure 2) show that role overload was greater if the caregiver provided more hours of care and cared for an elder who exhibited problem behaviors. Further, a caregiver who reported role overload was also more likely to be depressed (Yates et al., 1999). We were interested in what resources available to a caregiver might mediate or buffer the effect of amount of care on role overload and risk of depression. We found that a better quality of caregiver/care recipient relationship, a sense of mastery, and emotional support decreased the likelihood of role overload and, in turn, depression.

A recent qualitative study regarding the experience of control in caregiving (Szabo and Strang, 1999) supports these findings. Control is seen as a factor that influences a caregiver’s ability to manage stress and burden associated with the caregiving role. Maintaining control in this study was indicated by identifying internal resources, recognizing a need for help and asking for it, anticipating the future, and taking corrective action when impending loss of control was felt. Lack of control, on the other hand, was reflected by inability to recognize their need or ask for help, not anticipating the future, and identifying negative internal resources, i.e., lacking confidence in their caregiving abilities.

Several studies, including our work, have taken a more salutogenic approach and investigated how caregivers cope with the daily demands of caregiving. This work offers useful data to inform the development of supportive interventions. Caregivers use a variety of private, personal, or informal methods to cope with stress. The NAC/AARP Survey (National Alliance for Caregiving and American Association for Retired Persons, 1997) reported the following common methods of coping: prayer (74%), talking with friends or relatives (66%), exercise (38%), and hobbies (36%). Sixteen percent had sought professional help or counseling. Most caregivers used multiple coping mechanisms, and, not suprisingly, the number of coping mechanisms increased as the level of care increased and was higher in dementia care.