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

Abstract

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.

‘Too young to sit at home’: a qualitative study conducted among employees with young-onset dementia and their relatives

“…Moreover, open communication about the diagnosis is important, as it increases understanding and lays the foundation for support within the work environment. In line with our findings, a recent Swedish study (Nygard et al., 2023 ) also highlighted the difficulty of recognizing dementia in the workplace and emphasizes the importance of openness about the diagnosis within the work environment. Fostering open communication and collaboration among employees with YOD and their relatives, the work environment (i.e.…”

“…If continued employment is desired, appropriate support needs to be in place to help employees with YOD in the workplace, meet their needs and focus on their capabilities (Ritchie et al., 2017 ; Silvaggi et al., 2020 ). Only a few studies have focused on continued paid employment and, more particularly, on the experiences of employees with YOD and the impact of the condition on their work performance (Andrew et al., 2018 ; Ikeuchi et al., 2020 ; Nygard et al., 2023 ; Omote et al., 2023 ; Ritchie et al., 2020 ). Overall, findings from these studies underline the importance of increased awareness and understanding regarding YOD and the possibilities for continued employment.…”