Experience with Support at Workplaces for People with Young Onset Dementia: A Qualitative Evaluation of Being Open about Dementia

Abstract

Young-onset dementia (YOD) occurs at <65 years of age. Individuals with YOD experience social and psychological disturbances, including a loss of employment. This economic toll affects them, their families, and their caregivers. Employers have an increasing role in supporting affected employees in remaining employed, an important component of the “fight for their dignity”. This study aims to clarify the workplace support experiences of employees with YOD. To assess the experiences of employers with at least one affected employee, we interviewed personnel from eight facilities for qualitative analysis. We identified 5 unique categories and 14 subcategories encompassing the following aspects: confusion at the workplace stemming from the uncertainty of the disease, sensitivity when recommending consultation and diagnosis, creating a system that considers safety and security, building consensus among employers, supporting employees with YOD and their families, and assisting the individual with YOD with activities of daily living. Employers should be open to addressing dementia-related issues in the workplace, including obtaining information from employees’ physicians so that appropriate support can be provided. Appropriate support can include work accommodations, needs-based support, and meetings with families to build consensus for continued employment. This information can facilitate the creation of new training materials for employers.