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

Bo Smeets*, Niels Janssen, Kirsten Peetoom, Lizzy Boots, Christian Bakker, Marjolein de Vugt

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Objectives: Young-onset dementia (YOD) symptoms often first present in the workplace, resulting in work performance challenges and eventually loss of employment. This study aims to investigate the experiences, work values, and support needs of employees with YOD and their relatives. Method: Semi-structured interviews were conducted to explore the experiences, work values, and support needs of (former) employees with YOD and their relatives. Subsequently, separate focus group discussions were conducted for employees and relatives to review and prioritize interview findings. Inductive thematic analysis was applied to both datasets. Results: A total of 15 interviews (six employees; nine relatives) and four focus group discussions (ten employees; six relatives) were conducted. Six themes emerged, with five revolving around the central theme: desire to work. The other themes represent essential contributing factors, including importance of receiving a YOD diagnosis; knowledge, awareness, and understanding regarding YOD; open communication, joint decision making, and collaboration; work adjustments, involvement, and support; phasing out work and future perspectives. Conclusion: The findings highlight a strong desire to work post-YOD diagnosis, serving as a foundation for developing workplace support tools and guidance. This has the potential to help individuals with YOD preserve their self-confidence and identity while working within their capabilities.

Original languageEnglish
Pages (from-to)1119-1128
Number of pages10
JournalAging & Mental Health
Volume28
Issue number8
Early online date26 Apr 2024
DOIs
Publication statusPublished - 2024

Keywords

  • Young-onset dementia
  • continued employment
  • employees with dementia
  • perspectives
  • relatives
  • support needs
  • work

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