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.

Mindfulness and Care Experience in Family Caregivers of Persons Living with Dementia

“…Our finding of significant relationships between global mindfulness but not individual components and caregiver experience among caregivers of patients in later stages of dementia in interesting. While not considered significant based on our study-specific criteria, significant associations between decentering and positive emotional regulation and positive appraisals in these caregivers, support reports of emotional detachment, a decentering-related metacognitive process [ 64 ] and separating the person from their condition as a coping strategy while providing end stage dementia care [ 65 ]. This allows them to remain engaged in their caregiver role while maintaining positive emotions and attitudes toward their affected family member, which in turn, as our findings suggest, leads to better caregiver outcomes such as more positive care appraisals and higher care confidence.…”

Care needs assessment of older adults with dementia in a semi‐rural district in Vietnam: A community‐based cross‐sectional study

“…34,35 Given the increasing number of PLWD, it is imperative to develop and implement strategies that support family caregivers in delivering safe and effective care. [36][37][38] In addition to enhancing caregiver knowledge, providing more support services for single or divorced/separated PLWD, devising interventions to address the social and psychological needs of PLWD, and addressing their financial needs are essential.…”

“…However, it is important to acknowledge that caregivers may lack the knowledge and skills necessary for providing optimal care, which emphasises the need for further training and education in this area 34,35 . Given the increasing number of PLWD, it is imperative to develop and implement strategies that support family caregivers in delivering safe and effective care 36–38 . In addition to enhancing caregiver knowledge, providing more support services for single or divorced/separated PLWD, devising interventions to address the social and psychological needs of PLWD, and addressing their financial needs are essential.…”

Exploring the needs and coping strategies of family caregivers taking care of dying patients at home: a field study

“…Coping with anticipatory grief and preparing emotionally for death can be challenging for families, especially family caregivers, without adequate professional support. As such, emotional coping strategies may be a positive way of self-protection [ 55 , 56 ]. It is necessary for professionals to understand and recognize family caregivers’ emotional coping strategy for approaching death, and proactively provide tailored support with respect for needs [ 38 , 57 , 58 ].…”