What happens when people develop dementia whilst working? An exploratory multiple case study

Louise Nygård*, Ann Charlotte Nedlund, Anna Mäki Petäjä Leinonen, Arlene Astell, Jennifer Boger, Mervi Issakainen, Ann Louise Engvall, Birgit Heuchemer, Lena Rosenberg, Charlotta Ryd

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

1 Citation (Scopus)


Purpose: This study is an in-depth exploration of the unfolding experiences of five persons who developed dementia while still in paid work/employment, and of their significant others. Namely, we explore how they experienced the actions and decisions taken with respect to work, and what the consequences meant to them. 

Methods: A qualitative longitudinal case study design with multiple cases was used, including five participants with dementia and significant others of their choice. Interviews were undertaken longitudinally and analysed with the Formal Data-Structure Analysis approach. 

Results: The joint analysis resulted in two intertwined themes: 1) The significance and consequences of a dementia diagnosis: a double-edged trigger, and 2) Sensemaking and agency. The prevalent images of what dementia is, who can/cannot get it and what it will bring, were revealed as the critical aspects. Having the opportunity to make sense of what has happened and participate in decision-making, contributed decisively to the participants’ experiences. 

Conclusions: Findings illustrate how a dementia diagnosis is alien in work-life, but once diagnosed, it may trigger self-fulfiling expectations based upon stereotypical understanding of dementia. A shift is needed from a deficit-focused perspective, to viewing people with dementia as citizens capable of agency.

Original languageEnglish
Article number2176278
Number of pages15
JournalInternational Journal of Qualitative Studies on Health and Well-being
Issue number1
Early online date17 Feb 2023
Publication statusPublished - 31 Dec 2023
Externally publishedYes

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