What matters in everyday life for people living with dementia: a qualitative inquiry

Abstract

AbstractBackgroundResearch on what matters to people with dementia in their everyday lives is crucial to develop tailored interventions and programs. However, they are rarely asked. A scoping review of studies with the perspective of people with dementia revealed that no study has explicitly examined everyday life as a whole (Huizenga et al., 2022). A conceptualization of everyday life is lacking. This qualitative study uses the lens of everyday sociology, which focuses on the ordinary mundane aspects of life that are often unseen and unnoticed. The aim of this study was to explore how people with dementia experience their everyday lives and what matters to them. This will provide insight into the essential ingredients for support to ensure the quality of everyday life.MethodUsing a phenomenological approach, open interviews were conducted with 15 people with dementia living at home. The topic list compromised the following topics: experience of activities, relationships, places, the condition of dementia, and health and social care. Respondents participated in 1‐3 interviews. The interviews were supplemented with home tours (Pink, 2009) and walking interviews. The analysis was performed in Atlas.Ti using a descriptive content analysis. The analysis followed the phases of open, axial and selective coding. During the analysis, an advisory board of people living with dementia was consulted to ensure the content validity of the findings.ResultPreliminary findings show that everyday life for people living with dementia is a continuing struggle to maintain balance in managing progressive disruptions. Helpful are meaningful activities, especially in meeting centers, feeling connected in relationships and a sense of feeling at home related to the house and the neighborhood. Everyday life is described as living in the present but is also influenced by life history. Furthermore, other conditions, such as financial problems and physical conditions hinder everyday life.ConclusionA preliminary conclusion is that this study gives insight in what matters to the daily life of people living with dementia at home. These insights help to gain a better understanding and better connect to needs.