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

TL;DR

This study explores how people with early-stage dementia adjust to life changes while still working, focusing on their efforts to maintain activity and a sense of belonging.

Contribution

The study novelly highlights the agency of individuals with early-stage dementia in navigating work and personal life changes.

Findings

Participants sought continued activity engagement based on their perceived abilities and identities.

Agency was evident in how participants managed their wellbeing and health care information.

Themes of doing, being, becoming, and belonging were central to participants' adaptation processes.

Abstract

The 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.

The 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.

Three 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.

The 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.

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