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.

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.

Young-onset dementia occurs during life stages when work and family responsibilities may still be present. These circumstances mean that persons with young-onset dementia often face support systems that are not fully adapted to their age, needs, or daily life. Although family-centred approaches are increasingly recognised in dementia care, limited knowledge exists about how couples living with young-onset dementia understand and make use of support in daily life. This study explores how support is experienced and integrated into the shared lifeworld of couples, focusing on practical, emotional, and existential aspects of daily living. Eleven couples participated in dyadic, semi-structured interviews. A meaning-oriented thematic analysis, guided by lifeworld research, was used to explore how support is understood and incorporated into daily life. Three themes emerged. Negotiating independence and support in daily life describes how couples balance emerging needs with daily routines and autonomy. Navigating complex systems in search of adequate support highlights the challenges of encountering fragmented structures and unclear responsibilities, often requiring persistence to identify relevant services. Experiencing a balance between expectations and daily support shows how support becomes meaningful when it aligns with the couple’s daily life and current needs. Overall, the themes demonstrate how couples work together to maintain daily life while managing emerging needs and navigating fragmented systems, and how support is most helpful when it fits their life situation. The findings underscore the importance of support that matches the life circumstances of couples living with young-onset dementia and the ways they make sense of their daily lives.