A Rapid Review of Service Configurations and Models of Care for People With Young Onset Dementia

Background: Young onset dementia (YOD) can present distinct challenges for diagnosis and care that often span multiple sectors including health, disability and aged care systems. People with YOD often experience delays in referral and diagnostic assessment, limited availability of age-appropriate services and fragmented postdiagnostic support, which contributes to substantial gaps in care for people with YOD and their families. Methods: This rapid review aimed to identify and map the peer-reviewed and grey literature describing YOD service configurations, care pathways and system-level initiatives that support diagnosis and ongoing management of people with YOD. Targeted searches were conducted in April 2024 to identify articles published in the last 15 years. Service components were mapped across the care continuum, and where evaluation findings were reported in the literature, these were summarised descriptively. Results: Nineteen peer-reviewed studies and eleven documents from grey literature sources were included. A further fourteen national policy documents were identified through targeted searches and reviewed for YOD-specific recommendations at the national level. The included sources were categorised into four broad categories: (1) system-level infrastructure and enablers (including national frameworks, referral pathways, guidelines and funding approaches); (2) specialist diagnostic and postdiagnostic service configurations; (3) community-based supports and cross-sector partnerships and (4) residential and specialised care. Services typically included multiple care components, most commonly specialist assessment and diagnosis, psychoeducation, care coordination or mechanisms to promote collaboration or integration of care, care planning and family-focused support. Fewer sources described components addressing later-stage needs, including transitions to care and palliative and end-of-life care. Conclusions: The literature mapped in this review suggests that YOD services are often concentrated around diagnosis and early postdiagnostic support. There are fewer services offering components of care addressing specific life-stage needs, including finances, employment, family-based supports and community support. A lack of specific guidelines and tailored care pathways for people with YOD, combined with knowledge gaps among GPs and healthcare providers, may contribute to delays in referral, diagnosis and coordinated care for people with YOD. Improvements to diagnostic services should be supplemented by simultaneous improvements in the availability of suitable postdiagnostic support. Further research is needed to develop cost-effective and equitable care for people with YOD.