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What happens when people develop dementia whilst working?: An exploratory multiple case study
Division of Occupational Therapy, Department of Neurobiology, Care Sciences and Society, NVS, Karolinska Institutet, Stockholm, Sweden.
Division of Occupational Therapy, Department of Neurobiology, Care Sciences and Society, NVS, Karolinska Institutet, Stockholm, Sweden.
Faculty of Social Sciences and Business Studies, Law School, University of Eastern Finland, Joensuu, Finland.
Department of Occupational Sciences & Occupational Therapy & Department of Psychiatry, University of Toronto, Toronto, Canada.
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2023 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 18, no 1, article id 2176278Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Taylor & Francis, 2023. Vol. 18, no 1, article id 2176278
Keywords [en]
Accessibility, accommodation, agency, Alzheimer’s disease, case study, disclosure, early onset, employment, subjective experiences, stigma
National Category
Occupational Therapy
Identifiers
URN: urn:nbn:se:hj:diva-59920DOI: 10.1080/17482631.2023.2176278ISI: 000934371400001PubMedID: 36799733Scopus ID: 2-s2.0-85148332078Local ID: HOA;intsam;862741OAI: oai:DiVA.org:hj-59920DiVA, id: diva2:1739562
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2017-02303The Dementia Association - The National Association for the Rights of the DementedAvailable from: 2023-02-27 Created: 2023-02-27 Last updated: 2023-03-21Bibliographically approved

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Rosenberg, Lena

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