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.
Kårelind et al. (Tue,) studied this question.