Female spouses lived experiences of living with a husband with dementia: a qualitative study on changes in everyday life

Purpose: The purpose of this study is to gain a deeper understanding of female spouses’ lived experiences of changes in everyday life while living with a husband with dementia. Design/methodology/approach: Nine individual interviews of female spouses were conducted in 2017. A phenomenological narrative approach was applied during data collection, and the analysis was inspired by Amedeo Giorgi’s analytic steps. Findings: Female spouses experienced changes in their marital relationships, and found ways of managing these changes, although they realized life was marked by loneliness and distress. The identified themes reveal how female spouses experienced changes in everyday life as the disease progressed. Everyday routines gradually changed and they actively sought ways to uphold everyday life and a marital relationship. Research limitations/implications: Research should focus on developing supportive interventions, where the people with the lived experiences in relation to dementia are involved in the research process, to better target the needs for support, when developing interventions. Practical implications: Insight into everyday life can help health-care service providers to better the support to female spouses and contribute with more individualized support, which may contribute to the quality of care. Originality/value: In this study, the authors disclose the invisible and silent work that takes place in an everyday life, when living with a husband with dementia during the time span of caregiving. Spouses’ experiences are important to include, when developing intervention to support spouses to better tailor the interventions.