Emotion work and feeling rules: Coping strategies of family caregivers of people with end stage dementia in Israel—A qualitative study

Abstract

Background End stage dementia is an inevitable phase following a prolonged deterioration. Family caregivers for people with end stage dementia who live in their home can experience an emotional burden. Emotion work and “feeling-rules” refers to socially shared norms and self-management of feelings, as well as projecting emotions appropriate for the situation, aiming at achieving a positive environment as a resource for supporting others’ wellbeing. Objectives Exploring and describing the experience of family caregivers of people with end stage dementia at home, in Israel, unpacking their emotional coping and the emotional-strategies they use, and placing family caregivers' emotion work in a cultural context. Method We conducted fifty qualitative interviews using semi structured interviews analyzed through a thematic content analysis approach. Findings Four characteristics of emotion work were identified: (1) sliding between detachment and engagement, (2) separating the person from their condition (3), adoption of caregiving as a social role and a type of social reinforcement, and (4) using the caregiving role in coping with loneliness and emptiness. The emotional coping strategies are culturally contextualized, since they are influenced by the participants’ cultural background. Discussion This article’s focus is transparent family caregivers' emotion work, a topic which has rarely been discussed in the literature is the context of caring for a family member with dementia at home. In our study, emotion work appears as a twofold concept: the emotion work by itself contributed to the burden, since family caregivers' burden experience can evolve from the dissonance between their “true” feelings of anger and frustration and their expected “acceptable” feelings (“feeling-rules”) formed by cultural norms. However, emotion work was also a major source of coping and finding strength and self-meaning. Understanding and recognizing the emotion work and the cultural and religious influence in this coping mechanism can help professionals who treat people with end stage dementia to better support family-caregivers.