Impacts of Care I

For many years, researchers have focused on documenting burden among caregivers, and then on identification of which caregivers were most likely to be burdened. The personal, social, and health impacts of caregiving have now been well documented. However, it is critical to look separately at caregivers for elders with and without dementing illness. Their experiences are different. We must be careful not to generalize to all caregivers what we have learned about dementia caregivers. Most of the early studies of caregiver burden were of dementia caregivers. These early studies were often of non-representative samples identified through service agencies – caregivers who were more likely to be stressed. Measurement was less sophisticated in these early studies. The rates of burden reported from these studies were alarming and unfortunately were generalized to all caregivers. Questions were developed for these studies that asked directly about the stresses of caregiving. Measures in more recent studies include general physical and emotional health indicators of stress, such as depression, sick days, and health care utilization.

Given these multidimensional issues, what has been reported consistently across studies, including the recent NAC/AARP survey, is the constraints or restrictions of caregiving on time for leisure, social and personal activities (National Alliance for Caregiving and Alzheimer’s Association, 1999; McKinlay et al., 1995). Table 4 displays negative impacts for dementia and non-dementia caregivers. Overall, 55% of caregivers reported less time for other family members and giving up vacations, leisure time or hobbies. This personal time restriction is greater when needs for care – as in dementia care – are greater (National Alliance for Caregiving and Alzheimer’s Association, 1999). This makes ultimate sense – the more time one spends on caregiving, the less time one has for oneself. Other types of negative impacts are less frequently reported. In the NAC/AARP study (National Alliance for Caregiving and Alzheimer’s Association, 1999), less than one-quarter reported physical or mental health problems as a result of caregiving. Again, however, these problems were more likely for dementia than for non-dementia caregivers. Accommodations to employment have been reported for up to one-fifth of caregivers. Also, more likely for dementia caregivers than non-dementia caregivers were decisions to change work schedules, turn down a promotion and terminate employment entirely (Ory et al., 1999). Of important note, few caregivers in ethnic groups reported financial hardships as a result of their provision of care.

There has been considerable attention directed toward mental health impacts of caregiving. Depression and anxiety are the outcomes most frequently studied. Prevalence rates of depression among dementia caregivers have been as high as 43-46% (Haley et al., 1987; Gallagher et al., 1989), nearly three-times the rates found among representative middle-aged and older populations (Eaton and Keisler, 1981; Frerichs et al., 1981). While rates of depression across studies of dementia caregivers vary, the consistent finding is that dementia care is psychologically distressing. The MEHP examined depression among non-dementia caregivers and found a rate of 35.2% or twice that in the general population. A comprehensive review by Schulz and colleagues (1995) has pointed out the bias in such findings introduced by the non-representative samples of most dementia caregiving studies, but also the robustness of the finding that caregiving is psychologically stressful.