Poster Presentation Australian and New Zealand Society for Geriatric Medicine Annual Scientific Meeting 2025

Models of Care and Service Pathways for Young Onset Dementia: Findings of the Joint Solutions Project (119123)

Samantha Loi 1 2 , Priscilla Tjokrowijoto 1 , Clare Beard 3 , Stephanie Mulhall 4 , Monica Cations 3 , Naomi Moylan 5 , Debbie Stange 6 , Adrienne Withall 7 , Nathan M D'Cunha 4
  1. Neuropsychiatry Centre, Royal Melbourne Hospital, Parkville, VIC, Australia
  2. Department of Psychiatry, Universiy of Melbourne, Parkville, VIC, Australia
  3. College of Education, Psychology and Social Work, Flinders University, Adelaide, SA, Australia
  4. Centre for Ageing Research and Translation, University of Canberra, Bruce, ACT, 2617
  5. Brightwater Care Group, Inglewood, WA, Australia
  6. Wesley College, Melbourne, VIC, Australia
  7. School of Psychology, Faculty of Science, University of New South Wales, Sydney, NSW, Australia

Aims

The Joint Solutions Young Onset Dementia (YOD) Project aimed to investigate models of care and support for people with young-onset dementia (YOD), characterised by dementia symptom onset before age 65, focusing on identifying service gaps, barriers to care, and stakeholder perspectives in Australia.

Methods

The research combined two approaches: 1) a rapid review of peer-reviewed and grey literature, and 2) a cross-sectional national survey and focus groups with multiple stakeholders, including people with YOD, carers, general practitioners, clinicians, and community service providers.

Results

The rapid review identified 19 peer-reviewed studies and 11 grey literature documents, revealing three main YOD care models: systems-level models, specialised services and integrated care models, and supportive care models. The cross-sectional study gathered responses from 313 people in Australia, including 45% with lived experience, 30% clinicians, and 25% community providers. Time to diagnosis was within 12-months of symptom onset for 70% of cases, and 90% received both cognitive testing and neuroimaging. However, post-diagnostic support varied, with only 40% receiving allied health and psychological support and 60% reporting difficulties accessing the National Disability Insurance Scheme.

Conclusions

While diagnostic processes for YOD have improved, significant gaps remain in post-diagnostic support and care coordination. We identified a lack of specific guidelines, tailored care pathways, and knowledge gaps among healthcare providers. These factors contribute to challenges in service delivery. Further research is necessary to understand the needs of those affected by YOD, improve collaboration among service providers, and support development of suitable, cost-effective and equitable models of care.