Dementia in and Beyond the Workplace: Lived Experiences of Employees with Early-Onset Dementia

Abstract

A growing aging population has global implications in various socio-economic sectors, particularly labor markets. Age is the most significant risk factor for developing dementia. As the aging population grows, an increase in the prevalence of dementia is expected and as people remain in the workforce longer, the prevalence of dementia among employees is also likely to increase. Early-onset dementia can also impact people younger than 65 years of age when employees are typically at their peak earning power, and some are still raising a family. Job loss due to cognitive impairment as a result of dementia can be devastating to people who are not prepared to retire or desire to remain at work. A significant body of literature finds positive effects between employment (labor) and good physical and mental health. Employees diagnosed with dementia face physiological, socioeconomic, and psychosocial challenges during and post-employment. Employer-provided accommodations to employees with milder symptoms of dementia may keep employees working longer. Studies show that supporting employees in continued employment helps maintain and improve their overall well-being, reduces financial burdens, and provides families with time to prepare for a life post-employment. Hearing directly from people who experienced symptoms of dementia while employed offers insights into the challenges persons with dementia encounter when faced with job loss. The lived experiences of employees diagnosed with dementia were examined through semi-structured interviews. Results from the interviews were summarized and then analyzed. Key findings from this study show a lack of knowledge about dementia from an employer and employee perspective, challenges in accurately diagnosing dementia, and the impact of job loss to persons with dementia and their families.