Understanding employee experiences of developing younger onset dementia within the workplace: A scoping review
Author Identifier
Mandy Stanley: https://orcid.org/0000-0002-7958-5181
Document Type
Journal Article
Publication Title
Work
Volume
80
Issue
1
First Page
24
Last Page
60
PubMed ID
39177636
Publisher
Sage
School
Centre for Research in Aged Care / School of Medical and Health Sciences
Publication Unique Identifier
10.3233/WOR-230469
Funders
Australian Commonwealth Government’s Research Training Program
Abstract
BACKGROUND: 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. OBJECTIVE: The aim of this scoping review is to address the identified need to ascertain what is known about the perspectives of employees with YOD. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
DOI
10.3233/WOR-230469
Access Rights
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Comments
Page, L., Meredith, P., O’Reilly, M., Donohue, G., & Stanley, M. (2025). Understanding employee experiences of developing younger onset dementia within the workplace: A scoping review. Work, 80(1), 24-60. https://doi.org/10.3233/WOR-230469