Time Won’t Wait…
Joint Solutions Young Onset Dementia Project Findings
The Joint Solutions Project
In response to growing calls for advocacy from people living with young onset dementia and their families, the YPINH Alliance convened a national Roundtable with all stakeholders with an interest in young onset dementia including people with living experience, government and the NDIA, leading clinicians, peak bodies and service providers.
The Roundtable recognised the serious lack of services and policy frameworks and the shocking impact this had on people living with young onset dementia. Following he roundtable the Alliance was asked to apply for funding to articulate a comprehensive system of care for young onset dementia in Australia. This became the Joint Solutions Young Onset Dementia Project national initiative.
Funded by the Department of Social Services through its Independence, Capacity Building and Linkages program, the Joint Solutions project undertook research, consulted with people with living experience, their clinicians and providers, commissioned targeted analysis and established working collaborations to inform the system of care we developed. Led by the Alliance, a Consortium of organisations, researchers and clinicians working in the young onset dementia field has overseen the Project’s work and includes representatives
from:
- The Young Onset Dementia Special Interest Group (YOD-SIG)
- Eastern Cognitive Disorders Clinic (ECDC) and
- Dementia Australia (DA).
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| Click to Download Report |
Time Won’t Wait: The Joint Solutions Final Project Report
With 90 recommendations that draw on the experiences of Australians living with young onset dementia and their families, Time Won’t Wait exposes the barren service and policy landscape for people living with young onset dementia in Australia today.
With few specialist services and no identifiable pathways to provide the information and supports people are looking for, the Report details the findings of the extensive work undertaken over the Project’s 18 month life.
Every young onset dementia experience is unique, and the system needs the capacity to respond to people’s individual circumstances, location or cultural imperatives.
The report’s 90 recommendations for reform make compelling reading. They echo the themes that emerged repeatedly across the project for a capable cross sector navigation program, a national representative body,and improved awareness of the condition. Workforce development, improved diagnostic pathways and the establishment of a dedicated neurodegenerative pathway in the NDIS also thread through the Project’s work.
There is much to be done to address the Joint Solutions recommendations and to implement the system of care. The Alliance and its partners are committed to working on this reform program.
Project findings…
Over the last 18 months, the Joint Solutions Young Onset Dementia Project has undertaken the first comprehensive analysis of the experience of young onset dementia in Australia and the service and supports that are needed.
The Project undertook research and commissioned policy papers, engaged personally with people living with young onset dementia and their families, consulted with service providers, and liaised with partner organisations and government agencies to understand the experience of young onset dementia and the challenges of finding and accessing suitable support. We also completed detailed investigations of particular issues including a gap analysis of available services in Australia.
The project also has articulated a system of care for young onset dementia in Australia that describes the ecosystem that underpins the responses individuals and families need. A number of foundational elements form the core of the system, that interact with all other system components.
The Joint Solutions body of work is available in full in the tabs below.
This body of work highlights complex diagnostic journeys, fragmented services, challenges in finding and accessing age-appropriate support, and the impact of the poor levels of awareness og the condition among government agencies, clinicians, providers and the wider community.
A number of clear themes emerged from this extensive cross-disciplinary work:
- Young onset dementia remains poorly recognised and poorly understood
- People living with young onset dementia experience significant stigma and become socially isolated
- There is a pressing need for system navigation support
- There are limited skilled services available and a lack of information about how to access these services
- There is a significant need for organised advocacy.
As the first comprehensive analysis of the existing young onset dementia landscape in Australia today, the outcomes of the Project’s extensive stakeholder engagement have informed the system of care the project has developed.
The Alliance will work with partners and those who contributed to Joint Solutions to plan the work required to embed the system of care and pursue the Report’s recommendations with governments, industries and people with living experience
Experiences and service needs of young people living with a parent with young onset dementia
Dr Anna Booth, Kristel Krella, Dr Felicity Painter and Associate Professor Sandra Kuntsche from La Trobe University’s Bouverie Centre, consulted young people with a parent with young onset dementia about their experiences.
Qualitative studies included one with young people and a second using focus group interviews with practitioners working in the young onset dementia field to explore service and support improvements.
Young people spoke of diagnoses bringing intense feelings of confusion and isolation, while sudden shifts in family dynamics, and a lack of peer and professional understanding left them feeling alone and unsupported.
Changes in their parent’s behaviour and mood, and grief at the gradual loss of the parent they knew and loved were particularly distressing.
Key reflections include:
- From diagnosis, a roadmap for families is essential that should include
- a framework to understand the illness
- changes to expect
- ways to give support to their parent with young onset dementia and
- ways to get support for themselves and their family
- Guidance regarding key transitions and relevant services. For example, NDIS, My Aged Care and legal and financial matters
- Early, accessible and tailored support from someone who understands young onset dementia, knows the family, and knows the system.
Recommendations
- From diagnosis, develop a supportive and informed system with a clear roadmap
- Provide support to understand the illness, anticipate changes, access relevant health and disability services
- Deliver peer support opportunities and respite options to ‘step back’ from caregiving roles and nurture relationships with their parent
- Via a coordinated, compassionate and informed approach, their direct involvement in care planning, family education et al, addresses the child’s practical and emotional needs beyond service provision to their parent.
Industry Roundtable meetings
The Project conducted roundtables and other engagement with service providers delivering young onset dementia specific residential and care coordination services.
Participants shared information, identified key industry issues and highlighted areas for reform.
Following the provider roundtable, the YPINH Alliance undertook additional interviews with providers and health practitioners to gauge opinion on how NDIS planning and funding responses could better respond to the changing needs of participants living with young onset dementia.
Young Onset Dementia NDIS Residential Provider Roundtable
As well as allied health professionals involved in assessments, this Roundtable brought specialist residential providers from the disability and aged care sectors together.
The lack of suitable community based residential services for short and long term accommodation is a persistent gap in the system of care.
Significant work is needed at all levels to address this shortage, including development of a skilled workforce.
Roundtable participants made the following points:
- Disease management by collaborative teams of health practitioners, support staff and providers is needed
- Clinicians noted service provider enthusiasm to establish young onset dementia services is not matched by a thorough understanding of the condition’s clinical features
- Participants agreed on the urgent need for a workforce development strategy
- See also The Case for Change: the NDIS funding model for participants living with young onset dementia in residential services. Stakeholder interviews.
Provider Recommendations
- Specialist training for NDIA staff is essential
- Liaison/collaboration by the NDIS with other programs is essential
- Specialist shared residential services for participants living with young onset dementia must be commissioned
- A guide to the NDIA’s required planning information for progressive conditions is needed
- Plans for participants with young onset dementia should include funding for nursing
- The NDIS Pricing Arrangements and Price Limits should include a transition services item
- Mandatory qualifications and regular refresher training is needed to enable support coordinators to work collaboratively with providers.
Download Residential Provider Roundtable Report
Young Onset Dementia Service Coordination Workshop
Convened with people involved in support coordination and healthcare coordination, this Roundtable canvassed the cross-sector system navigation required by people with young onset dementia and their families.
Participants identified the following service coordination components essential to good outcomes:
- Interdisciplinary teams collaborate with the person, their family, each other
- Services and plans are goal focussed
- Dependable information is available from service coordinators and clinicians
- Service pathways include timely referrals for diagnosis, treatment, and support services and continuity of personnel and services
- Service coordinators active engagement in networks and communities of practice involving service providers and clinicians
- Individuals and families have early access to skilled coordinators for support across the disease course.
Recommendations
- A practical, person-centred, reliable and nationally scaleable model is needed. Government to consider a dedicated navigation program like the Young Onset Dementia Key Worker Program.
- Service coordinators working with people living with young onset dementia must
- Be innovative and solution focussed
- Understand hospital discharge protocols
- Have superior communication skills and knowledge of community services
- Work collaboratively with colleagues in other systems
- Develop multidisciplinary, one stop diagnostic clinics to provide accurate diagnosis
- NDIS to develop a specialist complex team for people with life limiting & progressive conditions that includes a senior planner to ensure rapid responses
- Creation of new MBS item numbers to provide rebates to health professionals working with people living with young onset dementias.
Download Service Coordination Roundtable Report
NDIS funding for residential services
The Case for Change: stakeholder interviews regarding the NDIS funding model for participants living with young onset dementia in residential services
The Project also examined the issues experienced by specialist residential services when trying to manage static NDIS funding with the escalating needs of their residents with young onset dementia.
A series of structured interviews with providers and other stakeholders was completed that analysed the options for change and made a series of recommendations for reform of the NDIS funding model for people with progressive conditions.
Provider Recommendations
- A flexible approach to funding for participants living with young onset dementia should enable timely responses to rapidly changing needs
- Engagement fora should be established with providers and the NDIS, and providers and the NDIS Quality and Safeguards Commission, to support ongoing dialogue and collaboration
- Shared service components must be separately funded, this funding available to the shared service provider to enable them to respond to rapidly changing needs
- A specialist NDIS planning team is needed for young onset dementia and other neurodegenerative conditions
- NDIA guide on required planning information for progressive conditions is needed.
Legal issues and implications in the context of Young Onset Dementia
The University of Technology Sydney’s Law Centre undertook an analysis of the key legal issues facing people with young onset dementia and their families.
Professors Fiona Kumfor and Nola Ries , Drs Sascha Callaghan and Kristina Chelberg with Evelyn Rose, found that individuals with dementia are not given the time, support or respect needed to participate meaningfully in capacity assessments.
Key legal issues and legal service gaps include
- misconceptions that a dementia diagnosis implies an immediate and total lack of capacity;
- significant deficiencies in how capacity assessments are conducted; and
- inadequate support and resources to support decision making by people living with young onset dementia.
Reforms in this space must improve
- legal safeguards and protections,
- access to legal services and policy responses for people living with young onset dementia and their families
- cross-sector collaboration and
- outdated policies.
Recommendations
- Strengthen legal safeguards to enhance protection and support for Australians living with young onset dementia
- Expand access to legal services
- Improve cross sector coordination and collaboration
- Research and strengthen the safeguards around capacity so that people with young onset dementia are not robbed of their decision making capabilities too soon. Capacity issues need urgent reform if people living with young onset dementia are to have their dignity, autonomy and rights ensured.
National Kitchen Table Conversation (KTC) Series
A series of kitchen table conversations (KTC) were conducted across Australia with people living with young onset dementia and their families to enable people to share their experiences and insights.
These facilitated conversations with small groups of people were then written up in reports that were provided to participants for their review.
Convened by the YPINH Alliance, Down Syndrome Australia and Dementia Australia, these intense and illuminating discussions revealed the changed lives and multiple interpersonal and service challenges people are forced to negotiate, often in isolation and without information or guidance.
The kitchen table conversations were pivotal in embedding the voice of people with living experience in the work of the Project. The diversity of locations, participants and facilitators was important in ensuring comprehensive coverage of issues.
YPINH National Alliance Kitchen Table Conversations
Recommendations
- Develop a national voice for people living with young onset dementia and their families
- Establish peer groups to help individuals and families understand the path ahead
- A dedicated young onset dementia/neurodegenerative planning pathway must be part of the NDIS response
- Address stigma, improve recognition and understanding of the condition through national awareness raising campaigns
- Develop a skilled workforce that collaborates with health professionals to deliver age appropriate care
- Educate health professionals!
- Develop urgently needed young onset dementia community programs, and respite and accommodation services
Download YPINH Alliance Melbourne KTC Report
Download YPINH Alliance Canberra KTC Report
Dementia Australia Kitchen Table Conversations
Dementia Australia conducted one-to-one and small group discussions with 34 of their dementia ambassadors around Australia.
Diagnosis, post-diagnostic support and information; access to services and supports including the NDIS; the impact on relationships, families and employment; community awareness; and workforce knowledge and skill were all discussed.
Amongst many topics, participants spoke about their experiences with getting a diagnosis, the National Disability Insurance Scheme and access to services.
Download Dementia Australia’s KTC Report
Down Syndrome Australia
As well as conducting kitchen table conversations with its members, Down Syndrome Australia provided policy analysis and recommendations for better support for people living with Down Syndrome and dementia.
They identified 5 key areas where work is needed
- Awareness and prevention
- Diagnosis and disclosure
- Age appropriate service development
- Impacts on people and families
- Down Syndrome Regression Disorder and Dementia
Recommendations
- Government to fund a multi-year partnership project between DSA, YPINHNA, DA and other relevant stakeholders to build awareness; provide resources and develop support networks
- NDIA, DSA and other stakeholders to codesign and pilot models of support that enable ageing in place and are flexible, have specific safeguards, are monitored and regularly reviewed.
- Government to support research into dementia diagnostic tools for people with Down syndrome including causes, prevalence, prevention and treatment and potential links between Down Syndrome Regression Disorder and young onset dementia.
National Summit on Young Onset Dementia
The National Summit on Young Onset Dementia brought over 170 representatives together in person and online.
The Summit was attended by those who want to see improved care and support options for people living with young onset dementia and their families in Australia, and included:
- people living with young onset dementia
- care partners and family members
- clinicians
- support and service providers
- peak groups, policymakers and advisors.
Summit participants heard from a variety of individuals and organisations and endorsed the Summit’s Call to Action.
A recording of the Summit’s proceedings:
Ms Tessa Gutteridge’s Keynote Address can be viewed below.
Summit presentations also available include
Professor Amy Brodtmann
Download Prof Brodtmann’s presentation
Associate Professor Samantha Loi
Download Assoc Prof Loi’s presentation
Dr Clare Beard
Download Dr Beard’s presentation
The Summit’s Call to Action was developed by people with living experience of young onset dementia.
National survey and report on young onset dementia in Australia
The Young Onset Dementia Special Interest Group (YOD-SIG) is an Australia wide network committed to improving outcomes for people living with young onset dementia and their families through research, policy, and clinical care.
Via national surveys and focus groups, this work identified and analysed the key issues facing people with young onset dementia and their families, their clinicians and young onset dementia service providers.
In completing this significant research project, the YOD-SIG team of Associate Professor Samantha Loi, Dr Clare Beard, Dr Monica Cations and Dr Priscilla Tjokrowijoto, identified a range of areas of complexity and unmet need including
- Misdiagnosis with depression or a mental health condition is common before a confirmed young onset dementia diagnosis
- Diagnoses of young onset dementia throw family and social relationships into turmoil
- There is a major shortage of post diagnosis support for people living with young onset dementia and their families
- 52% of people had children living with them during the disease process but only 12% received support for the children
- Families felt their needs were not recognised and had limited support options available to them
- People’s financial security is put at risk due to loss of employment due to disease symptoms.
Recommendations
- Develop easily accessible young onset dementia specific resources including an Australia-wide, secure, young onset dementia specific website in lay language to educate and support those affected by this life limiting condition
- Streamline services to ensure equitable access, regardless of location
- Enhance care coordination and access to services through a navigator or case-management service, particularly prior to NDIS access
- Improve communication and collaboration between services to aid self-management for individuals and families, self-efficacy, and allow all caregivers access to notes and letters
- Increase access to day programs, respite, and age-appropriate accommodation staffed by professionals trained in young onset dementia
- Enhance NDIS access by ensuring timely service delivery, recognising the evolving needs of individuals with a progressive condition, and offering socially engaging activities
- Improve access to assessment services and care for diverse groups, ensuring that these services are culturally sensitive and appropriate
- Address stigma and increase public awareness of young onset dementia by developing a consumer and caregiver-led organisation that prioritises the needs and concerns of those affected by young onset dementia, drawing insights from Young Dementia UK as a valuable resource.
Review of Australian and international young onset dementia systems of care
Prepared by Stephanie Mulhall, Nathan M D’Cunha, Stephen Isbel, Joe Northey, Kasia Bail and Diane Gibson from the University of Canberra; Monica Cations, Flinders University; and Samantha Loi, University of Melbourne, this review looked at the literature about systems of care for people with young onset dementia in Australia and internationally.
While the Review identified a number of overseas examples, their different policy and service delivery contexts demands that any system developed in Australia incorporate the proven effective features of existing international models, but adapt these for the Australian context.
The Review team found
- Because young onset dementia sits at the intersection of the health, disability, and aged sectors, pathways to access services are disparate
- People living with young onset dementia and their families wait too long for support, are offered services which are not age-appropriate, and fall through the gaps of these services.
- Delivery of specialist services tends to be sporadic and, without a national service development strategy, reliant on “champions” in local areas.
- System-level referral pathways, guidelines, and appropriate funding structures are essential to facilite equitable access to best practice young onset dementia assessment, diagnostic and care services.
- Delivery of collaborative multi-disciplinary services can hasten and improve diagnostic quality and treatment.
- Useful models for disease navigation, peer support information and post diagnostic support exist but are policy and funding specific to their country or jurisdiction.
- Implementing Australian service models will require codesign, local investment and positive design features of international services.
- A major international research gap exists as none of the models identified included targeted care for the advanced stages of young onset dementia. This gap also includes an absence of recent literature regarding models of care related to young onset dementia residential respite care, long-term care, palliative care or end-of-life care.
Recommendations
- Develop a dedicated young onset dementia pathway for NDIS planning and service development
- Use a multidisciplinary approach to care at all stages of the condition
- Support services to recognise the particular needs of the young onset dementia cohort
- Support early assessment and comprehensive diagnoses by those with young onset dementia expertise.
Systems literacy for people living with young onset dementia
Health literacy researcher and writer, Dr Rachel Skoss, investigated the health and system literacy imperatives for people living with young onset dementia and their families.
Her report provides an overview of dementia, a snapshot of participants with young onset dementia using the NDIS and considers the journey of a person and their family through the diagnostic odyssey, seeking and receiving a diagnosis, and then living well with dementia.
Recommendations
- Develop resources to identify diagnostic processes
- Build capacity and understanding regarding intellectual disability and dementia
- Establish clear pathways to services and supports
- Improve access to credible and accurate information
- Establish effective peer support mechanisms
- Develop condition specific planning tools
- Implement health and system literacy education for carers
- Build service system capacity to meet growth in demand.
Young Onset Dementia Gap Analysis
International management consultancy, the NOUS Group, undertook an extensive gap analysis of young onset dementia services in Australia.
Through interviews with people living with young onset dementia, service providers and policy makers, and a search of available specialist services, NOUS found that
- specialist services are sparse, fragmented and inconsistent in service design and delivery
- A chronic lack of accurate disease prevalence data hampers age appropriate service development
- The conflation of old age dementias with the different presentations of young onset dementia, together with outdated views of dementia as just about memory loss and residential aged care as the destination for those living with young onset dementia, continues to forestall development of specialist young onset dementia residential care, respite and community programs’ services.
Recommendations
- Improve public awareness, rectify fragmented young onset dementia information
- Provide training and capability building for healthcare professionals and service providers
- Address significant gaps in service accessibility and availability
- Develop service pathways, particularly for pre-diagnosis, assessment and diagnosis
- Develop an identifiable ‘voice’ for the young onset dementia community.
Young Onset Dementia Impact Network WA (YODWA)
The first of its kind, the Young Onset Dementia Impact Network WA or YODWA, is a statewide network in Western Australia that brings people with living experience of young onset dementia together with service providers, researchers, advocates, clinicians and policymakers to collaborate for impact and improve the opportunities for West Australians living with young onset dementia.
With over 120 members, YODWA provides a focal point for activity to share information and practice, develop new referral pathways and collaborate on projects.
With the voice of people with living experience at the centre of the network’s work, YODWA has developed a detailed theory of change and program of work for the coming years that includes improving community awareness of young onset dementia, development of new services, providing avenues for advocacy and policy engagement with government agencies, as well as better connections between members.
In the last 12 months, YODWA has established a steering committee, convened a statewide forum, produced 2 webinars, delivered 3 conference presentations and exhibited at the Australasian Neurological Conference and Expo in Perth in June 2025.
Young Onset Dementia and Palliative Care
Palliative Care Australia’s National Project’s Manager, Chelsea Menchin, consulted with people with lived experience, clinicians, policy makers, advocates and workers in the palliative care sector for the Joint Solutions Project.
The resulting report, A Model of Palliative Care for Young Onset Dementia, emphasises continuity of care, system navigation, person-centred and trauma-informed care, and the inclusion of peer support, family advocacy, and clear communication across systems as essential.
Recommendations
- Pilot Integrated Care Programs: that bring NDIS, palliative care, and other health services together to provide a cohesive end of life care plan for young onset dementia patients and their families
- Create Centralised Care Navigation Tools: a national or state-level care navigation platform includes a centralised database of services and a single point of contact to navigate all aspects of young onset dementia care
- Expand Peer Support Services: for different age groups and caregiving roles including young carers and children
- Strengthen Education for Health Professionals and Disability Support Workers: regularly update and expand young onset dementia training programs for health and care professionals
- Advocate for Systemic Policy Change: policy mandates collaboration between NDIS and palliative care services to deliver seamless support across both domains.
Conference presentations and publications
Publications in peer reviewed journals and a wide range of conference presentations, have presented the Project’s outcomes to audiences in Australia and internationally.
Conference presentations
Together with people with living experience of young onset dementia, Project staff have presented the Project’s findings at the following conferences, summits and fora:
- The International Dementia Conference, Sydney, September 2024.
- A young onset dementia symposium convened as part of the International Congress of Neuropsychiatrists, Melbourne, October 2024.
- National Summit on Young Onset Dementia, Melbourne, November 2024
- The Australasian Neurological Conference & Expo, Perth, May 2025
- The National Dementia Conference, Melbourne, June 2025
- British Society of Gerontology 2025 Conference, London, June 2025
- The Australian Dementia Research Forum with YOD-SIG, Perth, June 2025
- Abstract submitted to the Oceanic Palliative Care Conference Brisbane, September 2025.
Peer reviewed publications
- Loi, S. et al, Lived experience perspectives about gaps and barriers in services for those living with, and those providing care, for people with young onset dementia in Australia: Findings from the Joint Solutions Project, Australian and New Zealand Journal of Psychiatry, 00 (0) June, 2025: 1-11.
- Beard C, Tjokrowijoto P, Stange D, et al. Qualitative Perspectives of Young-Onset Dementia Care in Australia: A Thematic Analysis From the Joint Solutions Project. Dementia, 2025;0(0). doi:1177/14713012251360600
- Tjokrowijoto P, Beard C, Stange D, D’Cunha NM, Cartwright J, Moylan N, Withall A, Draper B, Scott T, Irish M, Lewis R, Atkins K, Goodlet C, Burton E, Cvejic R, Glennen K, Schweitzer D, Cations M, and Loi SM. (2025). The road to young-onset dementia diagnosis: Findings from the Joint Solutions Project. Alzheimer’s & Dementia.[i]
- Tjokrowijoto P, Beard C, Stange D, Cations M, Morkham B, Loi SM. Recommendations for a gold-standard pathway of care for young-onset dementia (editorial). Australian and New Zealand Journal of Psychiatry (ANZJP).[ii]
- Additional articles are awaiting publication and will be available here when published.
Young Onset Dementia System of Care
The Joint Solutions Project has developed a system of care that is the ecosystem people living with young onset dementia need to live well and access supports across the life course.
The system of care is a future state. Through the Kitchen Table Conversations, the NOUS Gap Analysis and other investigations done by the project, it is clear that significant gaps exist in information, supports, services and policy frameworks for people living with young onset dementia. Importantly, there is no focal point for the development of services or policy, or for navigation of the different systems that people need to access.
The system of care is multi-sector, multi-stakeholder and multi-jurisdictional and is based on the extensive consultation with stakeholders undertaken over the 18 months of the Project. The foundations of the system drive interaction with the component parts across communities and service systems, and include the voice and the experience of people living with young onset dementia.