Next to spouses and partners, adult children are the most important source of support for older persons in need of care. When adult children take on the caregiver role, this may not be without negative consequences, however. In a recent study published in Ageing and Society, Emily Grundy and I used the short version of the CASP-scale to examine how adult children’s quality of life changes when they start providing informal care to ageing parents.
The team that designed the CASP-scale defined quality of life as “the degree to which human needs are satisfied”. They argued that to achieve quality of life there were four key domains of need to be satisfied: control, autonomy, self-realization and pleasure. It is important to note that caregiving can bring positive things for the person providing it, such as learning new skills or a heightened sense of purpose. Nevertheless, we expected the overall impact of caregiving on quality of life to be negative, because the caregiver-stress model developed by Leonard Pearlin and colleagues suggests that caregiving can be detrimental for all of the four domains of quality of life.
Particularly when the needs of person care for are high, caregiving may diminish one’s sense of mastery, that is, the perceived control over forces that influence one’s life.
Moreover, caregivers may experience role captivity, that is, the feeling of being in the caregiving role involuntarily. This experience is at odds with a sense of autonomy.
Furthermore, caregiving may be a barrier for self-realization, given that Pearlin and colleagues explain that the identity and the life of a caregiver often becomes closely bound to those of the person cared for. For the caregiver, this may result in loss of self. The stress that results both directly and indirectly from caregiving can impede the pleasure experienced by persons providing care.
The caregiver stress model also stresses the importance of the context in which care is provided. When governments make care services more easily accessible, adult children of older people in need of care are less strongly pushed in caregiving role and they may escape the vicissitudes associated with caregiving. In our study we focused on two countries where coverage of long-term care services was traditionally extensive: Denmark and Sweden. However, cutbacks were implemented at the end of the 20th century in Sweden and more recently in Denmark.
We analyzed data from the Survey of Health, Ageing and Retirement in Europe collected between 2004 and 2015. Given that the coverage of long-term care services was more generous in Denmark and in Sweden for most of the period studied, we expected caregiving to be more detrimental for quality of life in the latter than in the former country. In line with these expectations, we noted a quality of life decline in Swedish, but not Danish, adult children when they became caregivers. Also as expected, the country difference in the detrimental effect of caregiving became smaller when further long-term care cutbacks took place in Denmark, but not in Sweden. These results strongly suggest that the extent to which providing informal care is harmful for quality of life depends on the way long-term care is organized in the country where the informal caregiver lives.
Guest blog post by Dr. Thijs van den Broek, Erasmus School of Health Policy & Management, Erasmus University Rotterdam, The Netherlands
Van den Broek, T. & Grundy, E. (2018). Does long-term care coverage shape the impact of informal care-giving on quality of life? A difference-in-difference approach. Ageing & Society. https://doi.org/10.1017/S0144686X18001708
The research leading to these results has received funding from the European Research Council under the European Union’s Seventh Framework Programme (FP7/2007–2013)/ ERC grant agreement n° 324055.