Stresses of Family Carers of Persons Living with Dementia

Findings form a Qualitative Study in Hungary

Abstract

It has been well documented in the literature abroad that caring for family members with dementia is especially burdensome for the carers. Family carers in general have not been paid much attention in the social science literature in Hungary, and no empirical study has been published in relation to family carers of people living with dementia until very recently. The present study draws on interviews with 30 family carers of people living with dementia conducted in Hungary in 2020. The research aimed among others to examine caregiver burden on family carers and the relationships between formal and informal caregiving.  The study used the Stress Process Model (Pearlin et al. 1990) as a theoretical framework to analyse caregiver stress. Concerning the objective primary stressors stemming directly from the needs of the care recipient, findings show that the cognitive impairment and problematic behaviour of the family member (along with the need of surveillance) impose higher burden on the caregiver than does the assistance with activities of daily activities. Looking at the subjective primary stressors (hardships subjectively experienced by the caregiver), the interviews demonstrated that as the disease progressed the carers tended to neglect their own personal needs, and to get overloaded. In addition, the caring process transformed the caregiver-care recipient relationship (relational deprivation). The primary stressors lead to additional sources of stress (secondary stressors). Out of these secondary stressors narrowing of social and recreational life proved to be the most significant type of role strain among family carers. Important mediators of stress were the social support provided by other family members, neighbours, and friends, as well as the rewards of caregiving experienced by many of the family carers.  Concerning the relationships between formal and informal caregiving the results show that informal care is supplemented by formal care when the informal care network of the person with dementia is deficient or when the person is with an increased need of care. This finding seems to support Chappel and Blandford (1991).