Experiences of influencing one's own life when living with working-age dementia

Abstract

Having opportunities to make decisions and choices regarding one's life is crucial when living with dementia. This inter-disciplinary study draws on the concept of relational autonomy to explore how working-age people living dementia seek to influence their lives, and what makes it easier or more difficult for them in their everyday life. The data consist of three focus group discussions conducted with 12 retired adults who developed dementia while still employed. The results illuminate various resources that enable a person to (a) handle their difficulties at work and related consequences with dignity, (b) manage everyday tasks and live a fulfilling life, and (c) fight the stigma associated with (working-age) dementia. Challenges related to these aspects reported by the participants reveal gaps and obstacles that impede the full realisation of the rights of people living with early onset dementia. This research highlights the need for workplace education for different stakeholders, equal and ongoing access to guidance and counselling for younger people who live with dementia, and an effort by society as a whole to eradicate stigma.

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

“…Ritchie et al ( 2018 ) concluded that employees with dementia have little control over decisions made regarding their employment, as was also shown in a recent study by our research team (Issakainen et al, 2021 ). When the medical expertise set the diagnosis, the participants in this study were told to leave work—again reflecting the power of dementia stereotypes of immediate incapacity (Low & Purwaningrum, 2020 ) - even if this recommendation was not always financially supported by the SSIA.…”

“…For someone who develops dementia, continued employment is likely to require adjustments or accommodations at work, which can be difficult to support (Ritchie et al, 2018 ; Roach & Drummon, 2014 ; Stavert et al, 2018 ; Öhman et al, 2001 ). To facilitate continued employment, a person-centred approach, including collaboration, guidance, and training for employers on legal and human rights, has been suggested (Andrew et al, 2018 ; Issakainen et al, 2021 ; Ritchie et al, 2018 ; Stavert et al, 2018 ). Specifically, the process of making adjustments, e.g., changing work schedules, simplifying routines, using technology for reminders, has been identified as a key theme requiring urgent attention (Thomson et al, 2019 ).…”

“…While it has been underscored that continued work might be preferrable, most studies report that receiving a diagnosis of dementia means immediately leaving work (either because the employee chooses to leave or the employer terminates them) without much effort to understand the situation, explore possible alternatives, or make adjustments (Evans, 2019 ; McCulloch et al, 2016 ; Roach & Drummon, 2014 ; Thomson et al, 2019 ). A recent study in Finland found that people with dementia may not be given the opportunity to participate in making decisions about continuing or leaving employment (Issakainen et al, 2021 ). This exemplifies the challenge of implementing a rights-based approach enacting each person’s right to legal capacity, i.e., the right of a person with dementia to get support in decision-making (Cahill, 2020 ).…”

Supporting continued work under the UNCRPD – views of employees living with mild cognitive impairment or early onset dementia

“…Earlier research has documented the challenges faced in managing work and the tendency of early retirement when a person develops dementia while still employed (e.g. Evans, 2019; Issakainen et al, 2021; Ritchie et al, 2018). Several studies address the lack of support and understanding of reasonable accommodations that narrow down opportunities available for people living with dementia or mild cognitive impairment (e.g.…”