Coming to terms with a changing everyday life with dementia: What can we learn from people who are diagnosed while still working?

Abstract

ObjectiveThe study's aim was to better understand how persons, diagnosed with dementia while still working, strived to make sense of and come to terms with their changing everyday lives during the process of exiting work life.MethodsThe study has an explorative, longitudinal design, following five persons who developed dementia while still working, with repeated, qualitative, in-depth interviews. Comparative analyses were combined with an interpretative approach, using the concepts doing, being, becoming and belonging.ResultsThree overarching themes were created: i/Finding out an orientation to continued activity engagement, ii/ Relating to the diagnosis and available dementia specific activities, and iii/ Managing wellbeing and information related to health care. Findings illuminate how participants sought avenues for continued activity engagement in everyday life, based on their perceptions of what they were able to do, who they wanted to be and become, and where they felt they belonged.ConclusionThe participants' agency came through strongly in their efforts to come to terms with changes in everyday life in their work and private lives, as well as with health care and dementia associations, underscoring that agency is vital and possible to support in persons with early-stage dementia.

Keywords: agency; citizenship; early onset; management; self-perception; subjective experiences.