Understanding employee experiences of developing younger onset dementia within the workplace: A scoping review

There is limited information focussing on the perspectives of persons with younger onset dementia (YOD) in employment. This poses challenges for supporting this demographic within the workplace and during their transition to retirement.

The aim of this scoping review is to address the identified need to ascertain what is known about the perspectives of employees with YOD.

Records were included if they: considered working-aged persons who received a diagnosis of YOD whilst employed or soon after ceasing employment; considered the perspective of the person with YOD; and were published in English. Four databases (CINAHL, PubMed, Embase, Cochrane Library) were systematically searched, and grey literature was sought using the Google Scholar search engine. Using PRISMA-ScR guidelines, two reviewers screened the title/abstract then full text of identified documents. Disagreements were resolved with a third reviewer. Research papers were narratively synthesised, thematically analysed, and critically appraised.

Fourteen peer-reviewed research papers, and nineteen grey literature items were included in the review, with research papers found to be of reasonably high methodological quality. Five themes were identified, describing the experiences of employees with YOD: (1) Trying to manage difficulties prior to diagnosis; (2) Disclosure at the point of diagnosis; (3) Reasonable adjustments; (4) Employment cessation; and (5) Regaining meaningful roles following retirement.

Findings revealed evidence for an emerging understanding of the lived experience of developing YOD within the workplace; however, further research is needed regarding the capabilities and support needs for persons with YOD to influence workplace policies and practices.