This report highlights findings from a study on the health status of informal caregivers and the impact of gender, employment status, and home care service use on their health. Informal caregivers included family members and friends who provided assistance to older individuals and who received no direct financial reimbursement for this assistance. The research questions were:

1. Are there gender differences in the health status of informal caregivers of elders?
2. Are employment status and home care service use associated with the health of the informal caregiver, when controlling for gender?
3. Do employment status and/or use of home care services predict the subsequent health status of the informal caregiver, when controlling for gender? Are changes in employment status and/or home care service use related to changes in health status?
4. What factors do female and male informal caregivers identify as impacting their health? To what extent are there gender differences in these factors?

Several methods were used to address these questions. Data from 322 caregiver-elder pairs interviewed for the Manitoba Study of Health and Aging (MSHA) in 1991/92 were extracted to explore the first two questions. The third question drew on information collected from the 155 pairs who were interviewed in 1991/92 and 1996/97 in the community. Three measures of health status were examined, specifically self-rated health, depression, and caregiver burden. Caregivers were selected for the MSHA on the basis of the elder's cognitive and physical functioning.

Focus groups/interviews were conducted with 30 informal caregivers to address the fourth research question. These caregivers were identified by service agencies or other caregivers. A workshop with 31 community service providers from 22 agencies/organizations was held to identify existing resources, challenges/barriers, and strategies/solutions to address issues raised by the informal caregivers.

Health of Informal Caregivers and Associated Factors: Findings from the MSHA

The 322 caregivers in the MSHA were relatively healthy in 1991/92. Forty-one percent rated their health as very good and 51% indicated it was pretty good. Only 14% showed signs of possible depression as measured by the well-established Center for Epidemiologic Studies Depression (CES-D) scale (Radloff,1977). In addition, caregivers had relatively low levels of caregiver burden as measured by the Burden Interview (Zarit & Zarit, 1990).

The relationship of health with gender, employment status, and home care service use in 1991/92 varied depending on the dimension of health under consideration and whether the focus was on the 135 spouses, the 187 adult children, or both spouses and children. No consistent patterns emerged from the regression analyses that considered several factors at the same time. Selected statistically significant findings are highlighted here.

Gender. Husbands were more likely to have poorer self-rated health than wives. Daughters were more likely to have higher levels of burden than sons.

Employment Status. Employed adult children reported higher levels of burden than those not employed, suggesting that caregiving in combination with employment may be related to greater burden.

Home Care Service Use. Adult children who reported the use of at least one home care service such as homemaker/cleaning services, home-help for personal tasks, in-home nursing, home-delivered meals, day centre, day hospital, hospital respite, and nursing home respite tended to have higher levels of burden.

Other Factors Related to Health Status. Other factors that might be important for health status were also examined. The caregiver's provision of assistance with basic activities of daily living (ADLs) such as eating or bathing and with instrumental activities of daily living (IADLs) such as housekeeping or taking medications emerged as particularly important in relation to depression and caregiver burden although the results varied depending on whether spouses and adult children were studied separately or in combination. For example, caregivers who helped with ADLs were more likely to have possible depression and to report higher levels of burden, when examining all caregivers and spouses but not adult children.

The elder's cognitive status was significantly associated with depression and caregiver burden. Individuals caring for older family members with cognitive impairment had a greater likelihood of depression and higher burden, particularly among spouses.

Subsequent Health Status and Changes in Health. The 155 caregivers interviewed in both 1991/92 and 1996/97 tended to remain healthy in 1996/97. Eighty-eight percent of these caregivers had no change in self-rated health, when considering very good or pretty good self-rated health in comparison to not too good/poor/very poor ratings. Eighty-two percent had no change in the likelihood of depression; 7% had possible depression in 1991/92 only and 11% did so in 1996/97 only. Caregiver burden increased significantly from 1991/92 to 1996/97 although it remained low overall.

Relatively few 1991/92 characteristics emerged as predictors of subsequent health status. Gender and home care service use were not significant for self-rated health, depression, or burden. Among adult children, being employed in 1991/92 was associated with higher burden in 1996/97. Other significant predictors for at least one health measure were the elder's cognitive status, caregivers providing assistance with IADLs, and caring for elders who received help with ADLs/IADLs from other informal caregivers.

Given the small numbers of caregivers with changes in self-rated health or depression, comparisons according to gender, employment status, and home care service use were not made. Female and male caregivers both had significant changes in burden. Among spouses, only wives had increased levels of burden. Among adult children, it was sons who had higher burden levels in 1996/97 than in 1991/92.

These findings from the MSHA should not be interpreted as indicating that there is little impact of caregiving on the health of informal caregivers. Unlike much of the caregiving research, the MSHA did not rely on agencies or organizations to identify caregivers. As a result, these caregivers may or may not have been providing levels of care comparable to individuals who have turned to the formal care system or support groups for assistance.

Discussions with Informal Caregivers on the Impact of Caregiving on Their Health

The focus groups/interviews provided an opportunity to discuss caregiving experiences and whether employment, use of health care services, or other factors influenced health and the ability to manage caregiving and other responsibilities. These caregivers were known to a service agency or voluntarily identified themselves as caregivers. Twelve themes relating to five conceptual areas (caregiver's health, relationships with family and friends, independence, employment, and service utilization) emerged. These themes cut across the experiences of female and male caregivers.

Some caregivers described psychological, emotional, and physical health changes they had experienced. These changes were not necessarily caused by caregiving but occurred during the time in which caregiving duties had been assumed in addition to usual responsibilities. Several caregivers spoke of a gradual process of social isolation as caregiving took a toll on friendships and relationships. The availability of other family members was not always viewed as supportive.

The caregivers discussed the frustration that was sometimes caused by the elder's desire to remain independent. The elder's perception of being able to function without support or denial of problems led to aggravation and a feeling of futility for some caregivers.

Employment was perceived as a beneficial mental and social activity by several caregivers although effects of caregiving on employment were identified. With regards to service utilization, there was a general consensus that resources were limited in availability, were difficult to discover and obtain, and frequently excluded the caregiver.

Strategies to Address Informal Caregivers' Issues

Community service providers were challenged to identify strategies to deal with these issues. Their suggestions related to raising awareness about caregiving, enhancing communication about available resources, developing innovative transportation initiatives, expanding respite services, providing education and psychological/emotional support to caregivers, and adjusting bureaucratic systems to promote collaboration across various systems.

Overall, although the findings cannot be generalized to all caregivers of older adults, the diversity among informal caregivers and the complexity of the issues they face were readily apparent. Each caregiver has unique situations and circumstances related to the caregiving experience. Family dynamics and history, values and beliefs regarding the role of family and the formal care system in providing assistance, financial circumstances, personalities of both the caregiver and the care receiver, and the nature of the caregiving network appear to influence the caregiving experience.

This study adds to a growing body of literature that calls for the development of policy that better recognizes the critical role of the informal caregiver. Recommendations for health policy and programming ¹ include:

Recommendation 1: A deliberate plan for increasing community awareness about resources for informal caregivers and elders needs to be formulated.

Recommendation 2: Community services must be directed to both the elders' and caregivers' needs.

Recommendation 3: Informal caregivers should be considered as team members and collaborators in the assessment and planning process with elders and community service providers.

Recommendation 4: Community resources for informal caregivers need to be more available, accessible, flexible, and responsive to caregivers' needs.

Recommendation 5: Greater collaboration across systems is needed to enhance understanding of caregiving issues and to initiate innovative strategies to deal with these issues.

¹ Additional information on these recommendations is provided on pages 61-63 of the full report.

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