Earnings losses in young-onset dementia: Population-based study with admin data

Young-onset dementia is often diagnosed late, leaving gaps in understanding its impact on employment, income, and social security.

Analyzing health insurance claims and medical records, we studied 16,010 young-onset dementia cases and 129,616 matched controls. Using a non-parametric event study, we assessed earnings, earnings plus benefits, employment losses, and benefit use, considering demographic and socio-economic factors.

Earnings fell by 58.7% in the years prior to dementia identification, totaling €144,013 in losses, and earnings plus benefits decreased by 20.7% (€68,533). We observed a 35.5 percentage point decrease in employment, a 23.9 percentage point increase in disability insurance, and a 2.7 percentage point rise in welfare benefit use. Primary education and lack of a partner correlated with higher earning losses and lower disability insurance uptake.

Early diagnosis and robust social support systems are vital to alleviate the financial and professional challenges faced by individuals with dementia under age 65.

Working-age persons experience job loss at least 21 years before dementia identification. Job loss is linked to 59% (€16,643) earnings drop 16 years before dementia identification. Losses in earning were not fully compensated by social insurance. A generous social insurance system eases the financial impact of young-onset dementia. Attention is needed in the work environment and on disability benefit decisions.