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.

Studies have shown significant heterogeneity in the longitudinal progression of dementia. Growth mixture models have detected up to 4 classes that differ in both baseline Mini-Mental State Exam (MMSE) and rate of decline over time. Most analyses focus on adults over age 65 and investigate group differences in demographic and health variables. The current analysis focused on adults with young onset dementia (YOD) and examined the role of demographic and support variables. Sample included 1025 adults (55% women) registered in the Swedish Dementia Register prior to age 65 with at least 3 registrations. Age at baseline was 38 to 64 (mean=59.3, SD=4.1); follow-up ranged from 1 to 12 years (mean=4.6, SD=2.0). Growth mixture models identified 4 classes: high baseline MMSE and moderate decline over time (56.1%), intermediate baseline MMSE and somewhat faster decline (39.2%), low baseline and stable MMSE over time (3.5%), and high baseline with steep decline (1.2%). Group 2 had the highest proportion Alzheimer’s Disease (AD) diagnosis and Group 4 had the lowest. Group 3 was more likely to have vascular or unspecified dementia and Group 4 was more likely to have vascular or frontotemporal dementia. Groups differed in age at diagnosis (Group 2 youngest), participation in adult daycare (Group 4 most likely), and having home health assistance (Group 2 most likely). Results highlight that YOD is just as heterogeneous as later onset dementia; therefore, it is vital that people with YOD get early diagnosis and a case manager to help identity and meet their individual needs.

BACKGROUND: Approximately 3.9 million persons worldwide have young-onset dementia. Symptoms related to young-onset dementia present distinct challenges related to finances, employment, and family. To provide tailored support, it is important to gain knowledge about the formal support available for persons with young-onset dementia. Therefore, this paper aims to describe formal support for persons with young-onset dementia in Sweden and the factors influencing this support.

METHODS: This retrospective study used data on persons under 65 years of age (n = 284) from The Swedish Registry for Cognitive/Dementia Disorders (SveDem) between 2021 and 2022. SveDem was established to monitor the quality of dementia care in Sweden. Characteristics of participants were obtained, including age, sex, dementia diagnosis, MMSE, medications, accommodation, and care setting. Descriptive statistics and logistic regression were used to test for associations between participant characteristics and post-diagnostic support.

RESULTS: Information and educational support were usually offered to the person with young-onset dementia (90.1%) and their family (78.9%). Approximately half of the sample were offered contact with a dementia nurse (49.3%), counsellor (51.4%), or needs assessor (47.9%). A minority (28.5%) were offered cognitive aids. Six regression models were conducted based on participant characteristics to predict the likelihood that persons were offered support. Support was not predicted by age, sex, children at home, accommodation, or medications. Lower MMSE scores (p < .05) and home help (p < .05) were significantly associated with offer of a needs assessor. Living together was a significant predictor (p < .01) for information and educational support offered to the family. Care setting significantly predicted (p < .01) an offer of information and educational support for the person and family members, as well as contact with a counsellor.

CONCLUSION: This study indicates potential formal support shortages for persons with young-onset dementia in some areas of dementia care. Despite equal support across most characteristics, disparities based on care setting highlight the importance of specialised dementia care. Pre-diagnostic support is minimal, indicating challenges for persons with young-onset dementia to access these services before diagnosis. While our study has identified areas in need of improvement, we recommend further research to understand the changing support needs of those with young-onset dementia.