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

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: . The other themes represent essential contributing factors, including

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.