Organising regional collaborations in Young-Onset Dementia care: how current practice reflects national integrated care policy recommendations

Background Fragmented care hinders access to age-appropriate services for individuals with young-onset dementia (YOD). YOD is characterised by a low-volume population with complex care needs, and its care is associated with specific challenges in both the delivery and organisation of services. Integrated care is an approach that can address these challenges, and health care policies in the Netherlands include recommendations on integrated care delivery. For YOD specifically, it is recommended to strengthen regional collaboration to support integrated care delivery. This study examines how regional collaborations for YOD are organised and governed, and how these relate to national integrated care policy recommendations. Methods A targeted web search complemented with a short questionnaire and a survey (‘YOD self-scan’) were combined to document potential YOD-specific collaborations and identify YOD-specific networks. Quantitative and qualitative data on characteristics, enablers and challenges were analysed using descriptive statistics and deductive thematic analysis. Results Potential YOD-specific collaborations were common; 16 regional YOD-specific networks were identified. These differed in aims, governance, coordination, cross-sectoral composition, and formalisation. Enablers of effective collaboration were shared goals, commitment, and formalisation. Challenges included time constraints, limited organisational capacity, and fragmented funding structures. Conclusions Current practice appears only partially aligned with the integrated care policy for YOD as promising YOD-specific networks exist with different levels of maturity. Organisation depends on the interplay of process-related, contextual, and structural conditions requiring coherent, cross-sector approaches to overcome specific challenges inherent to rare, complex conditions. This is the first study to map YOD-specific collaborations in integrated dementia care networks, clarifying how integrated care policy for a small, complex population is reflected in practice.