Caregiving to older adults: Determinants of informal caregivers’ subjective well-being and formal and informal support as alleviating conditions

Study Aim/Purpose: This study investigated the association between caregivers’ subjective well-being and the health status of their care-receiver, hours of informal caregiving they provide, and the reported burden of caregiving. The study also examined how supports—both formal and informal—used by caregivers mediate or buffer against diminished caregiver well-being. 

Summary of Methods: The authors conducted secondary analysis of interview data from 4,717 dyads of informal caregivers and their older care-receivers from the Older Persons and Informal Caregivers Survey Minimum Dataset (TOPICS-MDS survey), collected between 2010 and 2013, as part of the Netherlands’ National Care for the Elderly Programme. Care-receiver health status indicators or “primary stressors” measured were cognitive impairment, functional disability, and problem behaviors (a scale to measure the extent of problems the caregiver experienced due to the care-receiver’s demanding or unusual behaviors). The intermediate outcomes of focus were hours of informal caregiving and caregiver burden. Burden was assessed as a scale measure of level of strain experienced in caring for or accompanying the care receiver. The long-term or final outcome measured was the subjective well-being of the caregiver, using a scale measure of how happy the caregiver currently felt. Additionally, the study measured use of supports in three categories: 1) professional home care; 2) support from other caregivers or volunteers; and 3) whether the caregiver received “a lot” of support or “no or some support” from family, friends, neighbors or acquaintances. 

Summary of Results: With regard to the factors affecting caregiver well-being, the study found that well-being was primarily affected by perceived burden, and diminished caregiver well-being was directly associated with the extent of care-receiver problem behavior. Greater burden was associated with increased caregiving hours, but was also independently affected by all three of the primary stressors examined (i.e. cognitive impairment, functional disability, and problem behaviors of the care-recipient). The number of informal caregiving hours was found to be “especially sensitive” to greater functional disability and problem behavior of the care-recipient. 

With regard to the moderating effects of the three types of caregiver supports, the analysis found that caregivers spent fewer hours performing caregiving tasks when professional home care was used or the caregiver reported receiving “a lot” of support from family and friends. There was no similar moderating effect of having supports from other informal caregivers or volunteers. Perhaps contrary to assumptions, use of professional home supports was positively correlated with burden; however, the authors suggest that the use of professional care might be the result, rather than the cause, of the high level of burden. 

Limitations of Study: The authors acknowledged several study limitations. First, though their findings point to an interactive relationship among primary stressors, intermediate outcomes, and the final outcome of caregiver well-being, the cross-sectional data cannot be used to implement a longitudinal design. Although all of the data were collected using the same questionnaire, the authors noted that there was great variation in the 21 studies whose interview data were analyzed with regard to sampling frame, inclusion criteria, study design, sample size, and data collection method. A third limitation cited 84 ARCH National Respite Network and Resource Center 

was the relatively high item nonresponse, though the authors point out that they conducted robustness checks with different treatments of missing values, and these did not alter their conclusions. Finally, the authors recognized that more information on caregiver characteristics would have added to the richness of their analysis. Specifically, they mention that the survey did not include information on other concurrent responsibilities or employment of the caregivers, which could have provided insights into which informal caregivers are most at risk of diminished well-being. 

Authors’ Discussion/Conclusions: The authors conclude that instrumental support for caregivers, rather than emotional support, is the primary mechanism through which support mediates the negative impacts of the caregiving role. Because professional home care and support from family and friends both result in spending fewer hours providing care, these in turn moderate the difficulties of caregiving and increase caregivers’ feelings of well-being (both directly and via reduced burden). At the same time, the authors acknowledge that receipt of supports from other informal caregivers and volunteers was not strongly associated with improvements for caregivers and that this finding has important policy implications. At the time of the study, health reform policies under consideration in Western Europe nations, including the Netherlands, were emphasizing strengthening informal care and reducing professional home care. The authors suggested the need for research to examine the implications of health care reform policies on the interaction between formal and informal sources of support for caregivers. They also recommended that future research using a longitudinal design could test their theoretical model of factors affecting and moderating caregivers’ subjective wellness.