Factors influencing time to support in young-onset dementia: survival analysis of data from the Swedish Dementia Registry (SveDem)

Journal article, 2025

Objectives: Understanding the timing of service access for persons with young-onset dementia is essential for developing adequate support. This study aims to describe the formal support available for persons with young-onset dementia in Sweden and identify factors influencing its provision over time. Method: A prospective cohort study was carried out using data from the Swedish Dementia Registry (SveDem), focusing on persons diagnosed with young-onset dementia between January 2009 and April 2022 (n = 2592). Descriptive statistics provided a comprehensive overview of the population, and Cox Regressions were used to analyse factors associated with the time to receive support services post-diagnosis. Results: Living with another adult and higher MMSE scores were significantly associated with later access to home help services (p < 0.001) and care facilities (p < 0.001). Higher MMSE scores (p < 0.001), older age (p = 0.023), living with another adult (p = 0.010) and diagnosis at primary care centres (p = 0.016) were also associated with later access to day-care services. No significant associations were found between age, sex, medications, care setting, living arrangement, or MMSE score or with the time to access counselling services. Conclusion: The timing of access to support services for persons with young-onset dementia varies significantly, particularly for those living with another adult. These patterns may reflect a hidden caregiver burden.