Research & Evaluation

The system of care requires a national neurological research program that includes young onset dementia that commits to a long term investment in research focusing on prevention, treatments and models of support,

A program of evaluation for young onset dementia specific services to enable people to understand measures of quality and effectiveness.

A clearing house for clinical trials involving people with young onset dementia.

Codesign and conduct of research and evaluation programs with people with living experience of young onset dementia.

Workforce

Investment in professional development and training for workers in all systems.

Credentialling [including micro credentialing] for services and workers supporting people with young onset dementia and their families.

Recognition of the additional training and responsibility that support workers working with people living with young onset dementia and their families carry.

Promotion of a team approach to supporting people with young onset dementia. Includes funding for team meetings, handover, debriefing and mentoring.

Practice development.

Support for families and young people

Dedicated programs and organisations to support family carers including counselling and peer engagement.

Targeted services for children and young people who have a parent with young onset dementia including counselling.

Public education and awareness programs.

Support systems is schools and education settings.

Promotion of family sensitive and trauma practice training for clinicians and workers.

Age targeted information and online resources

Palliative care

Access to palliative care services early in the course of young onset dementia for advice and assistance with decision making, life planning, advance care planning and end of life planning.

Palliative care services complement other clinical and disability services, providing specialist interventions, training and service coordination.

Agreements between government agencies to enable concurrent service delivery between Palliative care services, NDIS, aged care and other services when multiple services are required.

Health and System literacy

Services and supports that build capacity in people with living experience to understand the systems they use, negotiate care and support and direct their services as well as accessing complaint systems when required.

Accessible information that assists with understanding the system of care as well as the condition itself is readily available to people living with young onset dementia and families Information and guidance to access and navigate service systems.

Digital guides/apps for individuals, families and providers to locate services, store data and communicate with each other.

Detailed information about specific treatment modalities.

Young Onset Dementia focused services

Network of capable age appropriate services providing respite, residential, vocational, social support and broad ranging therapy services.

Evidence based service design and delivery.

Co-design and evaluation of services with people with living experience.

Community support for home based and community access services.

Pro-active market stewardship from government agencies to develop and commission specialist services and improve access to required generic services.

Post diagnostic services

Publicly funded neurological hubs available in local health networks, including telehealth and in-person services. Hubs provide referral, treatment, information and regular clinical review.

Allied health flying squads for remote areas providing information, rapid turnaround on assessment, diagnosis and treatment, liaison with local GP re ongoing care.

Assistive technology.

Peer support networks provide information and support to understand what’s ‘coming down the line’.

Information and assistance to access the NDIS, understanding NDIS planning and funding decisions, plan management and Information about disability support services.

Access to financial and legal services, family support and peer networks Information about allied health practitioners specialising in working with younger onset dementia.

System navigation.

Information about clinicians specialising in diagnosis and treatment of young onset dementia.

National organisation

Unlike other neurological conditions, young onset dementia does not have its own representative organisation. Many people who spoke to the Joint Solutions project felt strongly that the condition did not have its own identity that distinguished it from other types of dementia and that this contributed to the poor awareness of young onset dementia across the community.

A national young onset dementia organisation is the focal point for collaboration, systemic advocacy, sector leadership and awareness of the condition for all stakeholders. It brings people together at a national level to ensure organised activity across sectors related to young onset dementia.

Through collaboration, networking and advocacy it can influence policy and system operation and raise the quality of services.

It can coordinate communication and information flow across all components of the system of care, governments and service systems.

It provides opportunities for people with living experience and other stakeholders to participate in projects, policy development, research to reduce fragmentation and harness the wide experience in the sector.

A key role is to lead awareness raising campaigns in the community and particular industry sectors and involve people with living experience and other stakeholders in these campaigns.

It will have routine engagement with all parts of the system of care and with government agencies to encourage greater understanding of young onset dementia.

Guided by people living with young onset dementia and their families, the national organisation will work to build the capacity of stakeholders to participate in policy processes, governance, evaluation and research and peer support.

Through policy engagement, media, conferences and collaborations across the neurological sector, it will coordinate advocacy for key policy outcomes.

Advocacy

Advocacy is a critical feature of the system of care as it provides safeguards for people living with young onset dementia, resolves barriers and service gaps as well as driving system improvement.

For people dealing with multiple unfamiliar and complex government systems, individual advocacy is essential in navigating systems and for rights protection.

Individual advocacy is also important in ensuring that people with young onset dementia are supported in their dealings with the NDIS, particularly with Scheme access, planning, funding, reviews and appeals to the Administrative Review Tribunal where required.

Advocacy also assists in service access and monitoring service quality.

Systemic advocacy organises and amplifies the voices of people with living experience and other stakeholders in public policy debates.

System Navigation

Service systems that people with young onset dementia rely on are complex, fragmented and underdeveloped.

In these environments, system navigation makes connections across service systems that create and maintain referral networks; identify local service development opportunities; and guard against people being underserviced.

People living with young onset dementia have said clearly that they need skilled guidance to find and access information and services; and support and inform decisions they need to make across the life course.

Navigation is able to identify service gaps in metropolitan and regional areas, and thin markets. NDIS navigators can build participants with young onset dementia and their families capacity to be astute actors in the NDIS market who negotiate their services with providers and manage NDIA processes.

Because they are active on the ground with services, navigators be a safeguard against poor service quality and raise the alarm about emergent and present risks for people.

The Joint Solutions Project identified a range of navigation models that incorporate face to face or virtual contact with people and their families that could be implemented in Australia.

Navigation models can be tailored to respond to the different needs of Aboriginal and Torres Strait Islander and CALD communities and provide opportunities for a peer navigator workforce to emerge.

Data

Because every part of the system of care relies on data to plan and deliver services and make investments, robust data is foundational to the system.

At present, Australian data about young onset dementia is unreliable. Strong and reliable data collection mechanisms must be developed to support the system of care we need to build.

Every area of the system of care needs data of some kind to inform decisions regarding service needs and gaps, equity across regions and demographic groups, resource allocation, and awareness raising activity.

Data supports policymaking, highlights service delivery issues and with program evaluation and research, can help to improve service planning and quality.

Data is also vital for effective individual and systemic advocacy. Without evidence of unmet need, and the inequity that marks the experience of people living with young onset dementia, it is difficult to argue for greater government investment or for processes that recognise the impacts of young onset dementia.

Living Experience

Every part of the system interacts with people living with young onset dementia, and their contribution is central to shaping an effective and equitable system of care.

People with this experience offer insights into every aspect of young onset dementia that are not limited only to healthcare, but include the legal, financial and interpersonal impacts of the condition.

People with young onset dementia and their families are having increasing influence over research agendas and in some cases becoming co-researchers rather than being the subjects of research. Researchers, clinicians and service providers have altered their practice to incorporate the voices of lived experience in their work.

Peer networks and peer workers can improve the options available for people with young onset dementia and their families.

Embedding diverse lived experience in service development and policy makes services more responsive to people’s needs, something of particular relevance to the NDIS market where people make choices about what services they use.

Partnering with people with living experience across the system drives innovation, sharpens practice and builds system resilience.

Responsive policy and funding systems

Policy frameworks and funding systems that recognise the impacts of young onset dementia; enable best practice treatments, services and supports and promote public health measures, are preconditions for all areas of the system of care to operate successfully.

People with young onset dementia have complex needs that sit at the intersection of multiple systems including aged care, health, palliative care, employment and the NDIS. These separate funding systems must be able to work together to deliver concurrent funding or flexible funding that ensures people are not left without support.

Most people living with young onset dementia will be eligible for the NDIS. The development of a tailored pathway in the NDIS for degenerative neurological conditions to match support funding with the changing needs, is critical to reduce the time delays and levels of conflict and rework that characterise the current planning system.

Established systems for dialogue and collaboration between the young onset dementia community and governments, regulators and funding programs must be core business for funding programs.

Links between funding programs and services to create an integrated support ecosystem are needed to reduce hospitalisations, avoid predictable crises and support families so people can have confidence in their support arrangements.

A strategic investment approach to underwrite research, service design and quality assurance will enable health systems to take advantage of new technology and treatments in the pipeline.

Diagnostic Pathway

The diagnostic pathway must be clear and predictable.

Priority for early identification and timely assessment and uses sensitive and empathetic communication with individuals and their families.

Key steps in the diagnostic pathway are:

• Initial Recognition and investigation by GP
• Referral to specialist clinician for Clinical Assessment
• Imaging, pathology and investigative procedures
• Formal diagnosis, communication of results, development of treatment protocols and plan
• Post-diagnostic support and timely clinical follow-up to answer questions that will have arisen, information about available services, referrals, reviews, information and feedback.

Access to all pre-diagnosis services and supports, including primary care, assessment, imaging and medical interventions involved in diagnostic and post diagnostic follow up should be

• disability accessible
• publicly funded.
• available to people in all parts of Australia and
• offer in person and telehealth access options.

Financial legal and employment services

Access to affordable financial advice, planning and advocacy.

Access to affordable legal support for decision making, criminal, civil and family law.

Professional young onset dementia interest groups in the financial and legal professions reform competency tests and laws so that people living with young onset dementia can maintain their autonomy and dignity.

Employment programs to support people living with young onset dementia in employment but who are dealing with cognitive changes.

Employment programs manage greater awareness of cognitive impairment and dementia amongst superannuation funds, Employee Assistance Programs, Unions and Employer peaks.

Clinical capacity

Availability of public specialist neurology across metropolitan and regional Australia for diagnostic services, assessment and professional development.

Strong knowledge of young onset dementia and mild cognitive impairment in primary care, including participation in local referral networks.

Accessible, affordable and capable testing services including pathology and radiology services.

Availability of dementia capable dental, audiology and other generic health services.

Community allied health services available for assessment, rehabilitation and training.

Acute and sub-acute services with dementia awareness and links to other services.

Public Health

Defining young onset dementia as a progressive brain disease and promoting Brain Health as a public health initiative.

Increasing awareness and reducing stigma across the community.

Promoting prevention and lifestyle adoption throughout primary care and media that address the Lancet risk factors for dementia.

Developing a transparent and accessible diagnostic pathway with funded assessments and scans to ensure rapid diagnosis Developing capacity for screening for young onset dementia, including preparing for new treatments and blood tests such as the p-Tau217 predictive blood test for Alzheimer’s disease.

Provision of comprehensive information for people living with young onset dementia including pharmacological and non pharmacological models of care.

The importance of embedding a reablement approach in service design so people in the community can live full lives with dementia.

Increased media coverage of the stories of people with young onset dementia and their families.

State/territory young onset dementia networks

State/territory young onset dementia impact networks will facilitate cross sector collaboration, develop referral pathways, new services and elevate the voice of people and organisations involved with young onset dementia in each jurisdiction.

Provide a platform for information exchange and communities of practice.

Coordinate state, territory and national initiatives.

Facilitate positive change and local cross sector collaboration and work with each other and the national organisation on strategic campaigns.