As far as we know, this investigation is the first examination of perceived burden and psychiatric morbidity among family caregivers of persons with MCI. Results suggest that even at early stages of cognitive impairment, husbands and wives assume the role of family caregiver and experience both caregiver burden and psychiatric morbidity associated with the role. The areas of caregiving responsibilities were diverse, and included household tasks and some nursing tasks (primarily regarding medications). The fact that many of these responsibilities were new suggests that the tasks may have been directly related to the onset of MCI in their spouse. Indeed, respondents endorsed a variety of lifestyle constraints that they themselves attributed to the cognitive changes in their spouse, and they reported the onset of a variety of behaviors in their spouse that represented changes in functioning. These changes were distressing, although respondents’ subjective perceptions of feeling burdened remained generally low.
Considered in the context of the levels of objective and subjective burden reported by caregivers to persons with dementia (Hooyman et al. 1985
; Zarit et al., 1987
; Robinson, 1988
; Montgomery, 1989
; Neundorfer, 1991
; Gitlin et al., 2001
), it is clear that the present sample’s overall level of burden is much more mild. This is perhaps most obvious in the types of behavioral problems that they reported among their spouses. Many of the severely disruptive behaviors such as waking up at night or an inability to initiate various activities by themselves were not present in spouses with MCI. However, it is striking that even at the stage of MCI, certain behaviors were already prevalent and were sources of concern, including asking the same question repeatedly, difficulty remembering recent events, and losing or misplacing things.
The emotional well-being of the present sample of MCI caregivers appears to lie midway between that observed in community samples of otherwise healthy older adults and that seen in dementia caregivers. Specifically, while mean levels of depressive and anxiety symptoms were lower than the typical levels observed in dementia caregivers (e.g. CES-D scores from 14 to 16, Schulz et al., 1990
; Baumgarten et al., 1992
; Schulz et al., 1995
; Wijeratne, 1997
), they were only slightly higher than levels seen in healthy non-caregiving elderly cohorts (e.g. CES-D scores from 7.4 to 9.4, Blazer et al., 1991
We observed significant associations between several elements of caregiver burden and both depressive and anxiety symptoms in the sample. These associations persisted even after controlling for known demographic correlates of symptomatology, and they suggest important linkages to be explored in future research. First, having greater responsibility for nursing tasks was associated with higher depression levels. The most commonly endorsed nursing task was medication administration. We speculate that it was uniquely linked to depression in these caregivers because this task may have served as a daily reminder of the fact that their spouse had MCI. This is supported by additional evidence of high ratings, on average, on the item indicating that respondents found it painful to watch their spouse develop memory problems.
Second, a higher level of lifestyle constraint was uniquely associated with elevated anxiety symptoms. Since the item, ‘amount of time to self’ received the highest rating in this area; it is possible that respondents experienced a heightened state of arousal (e.g. vigilance) in light of their spouses’ cognitive impairment.
Several limitations of the present study must be borne in mind. First, the size and composition of the sample introduce potential limitations on generalizability to the population of spousal MCI caregivers. Our small sample, although recruited from a clearly defined sampling frame, was predominantly white and the caregiver spouses were mostly female. This reflects the population of patients and spouses in the ADRC subject Registry. Our use of the ADRC subject Registry enhanced the study’s internal validity because it ensured that all individuals were carefully diagnosed with MCI. However, reliance on the Registry also potentially limits the external validity of the results since such individuals (i.e. spouses of individuals who have sought a medical diagnosis and treatment for their memory complaints) may differ from individuals and their spousal MCI caregivers who have not sought care from an ADRC. In addition, the generalizability of our findings may also be reduced by our focus on spousal caregivers, as opposed to other types of family caregivers. However, we chose to focus on spouses because the majority of caregivers to persons with cognitive impairment (including dementia) are female spouses (Grant et al., 1992
; Rabins, 1998
Second, our study’s cross-sectional design limits any conclusions regarding the causal or predictive direction of the caregiver burden-psychiatric morbidity relationship. It is possible that the associations we observed were due to some underlying characteristics of the caregivers or care recipients. It will clearly be important in future work with larger, more heterogeneous samples, to longitudinally examine these relationships in order to more fully characterize the direction of effects and the extent to which the effects are independent of or are influenced by other characteristics of the caregiver and care recipient (e.g. co-morbidities in patient or the patient’s perceptions of his/her own roles and responsibilities) over time and with more heterogeneous samples.
In conclusion, the present study provides three types of evidence that spousal caregivers to persons with MCI are already providing care typically associated with dementia caregiving and are at high risk (12% annual probability) for increasing caregiver burden with concomitant increases in subsequent psychiatric morbidity. First, even at this early stage of cognitive impairment, respondents endorsed elevated caregiving burden levels, although these levels are clearly lower than those endorsed by family dementia caregiving samples. Second, this sample endorsed depressive and anxiety symptoms midway between community and dementia caregiving samples. And third, measures of caregiver burden are significantly associated with depression and anxiety symptoms in this sample.
Given the heightened risk for dementia in persons with MCI, it is likely that many of these MCI care-givers will eventually become dementia caregivers. They may thus be ideal targets for selective preventive interventions to reduce the psychiatric morbidity that is so commonly observed in individuals with dementia caregiving responsibilities. These interventions could be specifically designed to strengthen intrapersonal skills and resources in order to prevent the worsening of psychiatric symptoms as some of these caregivers progress to become dementia caregivers. For example, to the extent that caregiver burden contributes to psychiatric morbidity, interventions designed to promote affective self-management and adaptive coping skills training, implemented very early in the caregiving trajectory, hold promise for contributing to more positive mental health outcomes in these spousal caregivers (Areán et al., 1993
; Hosaka and Sugiyama, 1999
; Gallagher-Thompson et al., 2000
; Hepburn et al., 2001
; Alexopoulos, et al., 2003
). Self-management interventions, with their focus on promoting self-efficacy (i.e. confidence in one’s ability to undertake behavior in order to accomplish certain goals (Taal et al., 1996
) have already been found to improve emotional well-being in a variety of distressed samples of older adults (Tableman, 1987
; Rokke et al., 2000
; Cutler, 2001
). They may be even more useful if administered prophylactically, especially among individuals just entering the caregiver role, as they attempt to adjust to the changing cognitive status of their spouse.