Focus on the capacity and potential of persons with dementia is needed to enable people and their families to adapt to the changes dementia brings in their lives. For those with young onset dementia (YOD), support to remain in work for as long as possible can preserve one’s self-esteem and sense of purpose in life. However, guidance on how to support people with YOD at their workplace is lacking. This study therefore aims to explore experiences, work values, and support needs of people with YOD in the workplace and other stakeholders involved.

In this qualitative study, semi-structured interviews were held with several target groups namely employees with an established dementia diagnosis, relatives of employees with YOD, employers and co-workers, occupational physicians, human resource professionals, and healthcare professionals involved in dementia care. A topic guide was developed, based on recent literature and consultation of experts, and addressed the following themes: experiences regarding the influence of dementia in the workplace, values such as the importance of work, and support needs in the workplace. Themes were explored in the period before and after diagnosis. The interview data were transcribed and analyzed by means of an inductive content analysis.

In total 33 semi-structured interviews were conducted. Eight themes were derived from the interviews in people with YOD, namely 1) difficulties experienced at work, 2) long diagnostic trajectory and involvement of work-and care professionals, 3) Impact of YOD and coping with YOD, 4) Wish to work, 5) Diagnostic disclosure, 6) The role of the work environment, 7) Phasing out work and future perspectives, and 8) Perception and awareness of YOD. Data of the other target groups is currently being analysed. These results are expected in spring 2023.

This study will result into a better understanding of the possibilities of working with YOD. These insights can be used as a starting point to develop practical tools to support and provide guidance to people with YOD and their (work)environment to prevent loss of work or find meaningful alternatives.