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

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 mean...

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Bibliographic Details
Published in:International journal of qualitative studies on health and well-being 2023, Vol.18 (1), p.2176278
Main Authors: Nygard, Louise, Nedlund, Ann-Charlotte, Mäki Petäjä Leinonen, Anna, Astell, Arlene, Boger, Jennifer, Issakainen, Mervi, Engvall, Ann-Louise, Heuchemer, Birgit, Rosenberg, Lena, Ryd, Charlotta
Format: Article
Language:English
Subjects:
Accessibility
accommodation
agency
Alzheimer's disease
case study
Decision making
Dementia
disclosure
early onset
Empirical Studies
Employment
Humans
Medical diagnosis
Medicin och hälsovetenskap
Noncitizens
Qualitative Research
Sensemaking
Significant others
Stereotypes
Stigma
subjective experiences
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Summary: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. 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. 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. 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.
ISSN:1748-2631
1748-2623
1748-2631
DOI:10.1080/17482631.2023.2176278