Young Onset Dementia National Summit: Shaping the Future of Care in Australia
- The Care Connect Co.
- Nov 7
- 3 min read
At The Care Connect Co, we’re passionate about supporting innovation and advocacy in the dementia care space, especially for those living with Younger Onset Dementia (YOD). That’s why we’re highlighting one of the most significant national events for our community: the Young Onset Dementia National Summit, part of the Joint Solutions – Young Onset Dementia Project.
A Growing Need for Action
According to the Australian Institute of Health and Welfare (AIHW), more than 28,000 Australians are currently living with Younger Onset Dementia, a number expected to double by 2050. Despite this growing figure, access to age appropriate and coordinated support remains limited.
The Joint Solutions Project, funded by the Department of Social Services (DSS), aims to change that. Running until April 2025, the initiative is mapping what an ideal, integrated system of care should look like for people living with YOD and their families, from diagnosis through to end-of-life care.
Collaboration at the Heart of Progress
The project is led by the YPINH Alliance and supported by a consortium of leading organisations, including the Young Onset Dementia Special Interest Group (YOD-SIG), Eastern Cognitive Disorders Clinic (ECDC), and Dementia Australia (DA).
Together, they’ve engaged with:
People living with young onset dementia and their families
Clinicians, researchers, and service providers
NDIS and government representatives
First Nations and CALD communities
Advocacy and support organisations
Through national consultations, small group discussions, and roundtables, the project is gathering vital insights to better shape services and policy reform.
Insights from the National Summit
Held in Melbourne on 12 November, the Young Onset Dementia National Summit brought together over 110 participants, including people with lived experience, caregivers, clinicians, and advocates, to explore the findings of this ongoing national research.
Two key reports were presented:
1. Rapid Review of Models of Care
Led by Associate Professor Nathan D’Cunha and his team at the University of Canberra, this review analysed international care models for people living with YOD.
It identified three main approaches:
Systems level models: national frameworks, guidelines, and referral pathways
Specialised and memory clinic models: integrated or collaborative approaches within health systems
Supportive care models: focusing on community, wellbeing, and long term support
2. The Joint Solutions Report
Developed by YOD-SIG, this report shares the experiences and insights gathered through national surveys and focus group discussions with people living with young onset dementia, their families, and care professionals.
The findings paint a clear picture: people with YOD often face long waits for diagnosis, limited access to suitable services, and fragmented pathways between health, disability, and aged care systems. Too often, individuals and families are left to navigate this complex landscape on their own, without the age appropriate support they urgently need.
The report calls for a coordinated national approach, improved diagnostic pathways, and an integrated system of care that recognises the unique needs of people under 65 living with dementia.
Why This Matters
The Young Onset Dementia National Summit marks a significant milestone in the journey toward better understanding and supporting younger Australians affected by dementia. It highlights the importance of listening to lived experience and ensuring that every voice — from families to clinicians — is included in shaping a future where care is accessible, responsive, and compassionate.
At The Care Connect Co, we share this vision. We’re dedicated to helping participants and their families navigate the NDIS system, access the right supports, and build confidence in their care journey. By staying connected to national initiatives like the Joint Solutions Project, we ensure our approach remains informed, person-centred, and aligned with best practice.
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