The Lived Experience of Losing Employment After Diagnosis with Dementia: A Phenomenological Analysis

The purpose of this study was describing the experiences of people with dementia (PWD) who lose their employment after diagnosis with dementia, but sooner than originally planned. A phenomenological approach based on tenets of Maurice Merleau-Ponty was used. Six telephone interviews were conducted, with participants sharing their experiences. Transcripts were transcribed verbatim, and subsequently analyzed via a hermeneutical analysis approach. Themes were identified within and between transcripts, considering the contextual grounds of Merleau-Ponty’s phenomenology: body, others, time, and world, and the contextual ground of participants’ experience: the stigma of dementia. An overarching, central theme of “still working” was identified across interview transcripts, as each participant shared accounts of continuing to “work” after leaving employment, albeit differently and at different activities. Six themes were identified within the central theme: (1) Doing no “harm,” (2) The “struggle,” (3) Strategically compensating, (4) Valuing “connection,” (5) Still actively living, and (6) Still contributing. Findings support previous research that minor changes are usually noticed by the PWD themselves but are also sometimes noticed by others at work. These findings support the literature indicating PWD often choose to leave employment of their own volition to prevent making costly or damaging errors; however, some are given few alternatives and consequently are terminated from employment. Also supported is previous research indicating that meaningful interactions, or connections, and engagement in customary or even newly discovered activities and hobbies are integral for PWD as they transition out of employment. This study also confirms previous research demonstrating that leaving employment may be seen as a relief from stress and worry for PWD. Results from this study shed new light on previous indications that an unexpected transition from work often upends one’s life, frequently triggering feelings of loneliness and isolation. Key findings indicate that with access to solid support and the opportunity to engage in meaningful and enjoyable activities, one can continue to lead an active, socially connected life of value and societal contribution. A novel finding from this study is the hesitancy of PWD to reveal their diagnosis to their employers, largely due to societal stigma.