Childhood Dementia Digital Portal

Every 11 minutes a child or young person dies with childhood dementia, and yet few people know it exists. Less than 5% of childhood dementia disorders have any sort of treatment, and 75% of children with dementia expect to live past the age of 18. 

Till date these conditions have been researched and treated in silos leading to: 

• significant underinvestment in the development of treatments and care services for children with dementia; 

• a lack of collaboration in both the care of children with dementia and in therapeutic development;

• a lack of awareness that childhood dementia exists, and a further lack of awareness of the various genetic conditions;

• a lack of information and appropriate support services for children with dementia and their families;

• and too many children suffering and dying slowly over months, years and sometimes decades, from diseases that have been known for over a hundred years. 

Even in countries with well funded and flourishing healthcare systems, such as Australia, families of children with dementia have shared they feel immense isolation upon their diagnosis, including: 

• having to fight for diagnosis, 

• being recommended support that isn’t appropriate (usually created for other childhood conditions such as paediatric cancer or autism), 

• and having to explain and inform various caregivers across complex health and social care systems over and over again about the child’s needs. 

Services that do exist are inequitable and varied, being highly subjective and dependent on healthcare professionals and service providers. Families often don’t know what services are available. 

One of the biggest barriers families have shared is that of delayed diagnosis, and an arduous diagnostic journey. On average childhood dementia conditions face a 4.8 year delay in diagnosis, impacting on treatment and care options and adding significant distress on families who are caring for children with high needs and who are often terminal. 

Never before have the needs of this group of children and their families been interrogated and addressed as a collective, nor have the commonalities in their conditions been highlighted or mined for solutions. And in doing so, we can fundamentally change the experience of each child and their families. 

Childhood Dementia Initiative seeks to provide a world first digital portal that collectively addresses the 70+ childhood dementia conditions in one place. 

This curated, trusted and accessible hub of information will provide optimal digital journeys for the following key stakeholders: 

• Primary caregivers and families of children with dementia (approximately 3.14 million people around the world)

• Researchers 

• Clinicians

• Service providers

• Policy developers

• Funders 

There are multiple features of the portal that will have a profound impact on the quality of life children of children with dementia

• The Knowledgebase: This is a relational database that will allow researchers, clinicians, families, anyone really to search and analyse data on 70+ childhood dementia conditions that have never been in one place before. For example data includes the average time from the onset of a specific condition to the diagnosis, or the time from the diagnosis until death. Researchers will be able to compare and contrast data across the childhood dementia disorders, for example if a researcher is working on a drug that acts on neuroinflammation they could use the knowledgebase to see which childhood dementia disorders have inflammation as a driver of progression. Clinicians will be able to look up symptoms to identify disorders, recognising the dementia presentations and then narrowing further to the possible genetic condition. These are just some utilisations that will deliver: 

  • Increased research into childhood dementia and development of therapies that target mechanisms in common between conditions. 

  • Improved clinical care through clear understanding of the symptoms and progression of this group of disorders. 

  • Better health system planning based on data of collective prevalence and disease characteristics. 

  • Identification of key research, industry and clinical stakeholders for collaborative research projects, accelerating the development of treatments.

  • Earlier diagnosis through the collation of information on genetics and presentation of disorders.

Contrary to other chronic and terminal diseases such as paediatric cancer, families of children with childhood dementia have shared a complete lack of information that is provided to them regarding their condition and the services that could possibly support them on their journey. The following two features address this specifically:

• Childhood Dementia Resource Library: Childhood Dementia Initiative has begun developing and collating education and informational resources in collaboration with families who are sharing their lived experiences on childhood dementia. This curated consumer centric resource hub is the first in the world to explore the collective impact of childhood dementia, the shared experience of families across the conditions, as well as the individual case studies of families themselves. Resources vary from educational videos developed for healthcare professionals to communiqués published from focus group findings.The purpose of curating this information is to: 

  • Provide a place to find quality reputable information on childhood dementia that doesn’t exist anywhere in the world. 

  • Raise awareness of the experience of childhood dementia

  • Connect service providers to resources that will better support them in developing appropriate services and policies. 

  • Help caregivers give better care to children with dementia.  

  • A place for families to hear from families that have similar experiences and diagnoses, so that they know they are not alone. 

  • A place for families to share their experience and make sure their voice is heard. 

• Childhood Dementia Service Directory: This reputable directory serves to provide a connection to support services that understand the needs of children with dementia and their families. Till date, due to the siloed nature of consideration, families have shared they often have to explain their child’s condition and requirements to the support providers who are supposed to help them. Childhood Dementia Initiative (CDI) is working with support providers across the full life cycle of a child’s experience with childhood dementia, i.e. from diagnosis to bereavement, to make them appropriate for children with dementia. Some appropriate services already exist but have never been delivered to children, such as ageing dementia support providers and CDI is working with them to extend services to children. Families will be able to search services and understand what is appropriate for their child’s stage of their condition, connect to services and access timely and appropriate care. 

Critical to the success of the Childhood Dementia Portal is providing an optimal user journey to access as much information as possible - consider user recommendations on resources based on their browsing. This allows for time poor families as well as service providers to quickly access appropriate information. 

Additionally and perhaps most importantly CDI intends to explore language functionality and accessibility requirements to provide optimal access to all portal users.

Childhood dementia is a global problem that requires a global response - to begin this portal will be heavily informed by Australian users, however we seek to build a platform that will grow to deliver a more global functionality over time. 

There are 700,000 children and young people living with childhood dementia.  Prevalence rates and incidence rates are those similar to Motor Neurone Disease and Cystic Fibrosis respectively. 75% of these children are expected to die before the age of 18, their young lives defined by pain and suffering. 

Approximately every 4 days in Australia a young person will die with dementia, the same as those dying from paediatric cancer (ages 0-14). There are over 30 organisations in Australia alone that are currently committed to collectively addressing childhood cancers (according to the ACNC), Childhood Dementia Initiative are the first in the world to be committed to the collective support of childhood dementia disorders.

Less than 5% of the 70+ genetic disorders that result in childhood dementia have any treatment. Investment in research is woefully inadequate. To illustrate this point, in the past 3 years the Australian NHMRC has granted 38 times more research dollars to motor neurone disease ($17.9 million versus $475,000) and 29 times more research dollars to cystic fibrosis ($13.8 million) despite the comparable incidence and prevalence.

Childhood dementia is costing the Australian economy alone $389 million a year, the global cost is as yet unknown, and the cost to the families who love these children is immeasurable. 

The Childhood Dementia Portal will have a direct and profound impact on the wellbeing of children and young people with childhood dementia. Because they have all been classified as having a rare condition, their needs have been often overlooked, underserved and underinvested in. These children have been treated and cared for in isolation, often having to fit their needs into services that aren’t appropriate for them. Families have to access inappropriate services and care for months, years and decades as they fight for better care and information. 

This portal increases awareness of childhood dementia, both through in-depth presentation of collated data that can be interrogated, and through the voice of those who have lived experience of childhood dementia. This solution seeks to connect critical stakeholders that are responsible for the care and quality of life of these children with pertinent and reliable information that can heavily inform how they recognise and care for children with dementia, develop treatments, increase investment, and develop policies and services.   

Childhood Dementia Initiative (CDI) is the first organisation to address the collective childhood dementia genetic conditions under one umbrella, driving systemic change through considered and directed collaboration. Its board and leadership has deep lived experience of childhood dementia with parents of childhood dementia patients as CEO and Directors, as well as expansive professional experience of childhood dementia and chronic and terminal paediatric diseases across research, healthcare, policy development, social care systems and fundraising. 

CDI has launched the world’s first childhood dementia advocates program, with 50 members (currently), connecting families of children with dementia to inform research, policy and service development, healthcare practices and general awareness. CDI prides itself on consumer centric practice, putting the voice of families first and foremost in the development of all its work. CDI will be engaging  a group of Childhood Dementia Advocates in both the development and implementation of the solution, and a different group in the evaluation of the pilot. 

CDI recognises that this underserved community has been significantly impacted by a lack of evidence, and is working in partnership with the University of New South Wales to develop the first ever psychosocial mixed methods research to understand the impact of childhood dementia on children and their families, and to inform a framework of care across Australia. This evidence based approach is true across all of CDI’s endeavours, as is evidenced by the first ever burden of disease study delivered with Thema consulting. 

The CDI leadership team and governance is supported by an esteemed Scientific and Medical Advisory Committee and Strategic Advisory Group: experts volunteering their time to guide the critical response to childhood dementia with their significant expertise, connections and experience. 

Few people know childhood dementia exists. Winning this challenge will  build awareness of an underserved population. 

Awareness that the MIT Horizon challenge has endorsed this response will give weight to this critical work, providing opportunity for others to consider partnering with Childhood Dementia Initiative. 

Lastly, receiving funding is critical as we compete for funds in a bear market for a cause that very few people have heard of. 

The collective consideration of the the childhood dementia disorders represents a complete paradigm shift in how children and young people suffering with these conditions have been viewed, treated and cared for. This is a profoundly different approach for these specific disorders, though it is an approach that has been applied to other diseases such as ageing dementia and paediatric cancers.  For childhood dementia conditions this umbrella approach will:

• Raise awareness of prevalence and impact of childhood dementia.  

• Understand and evidence the extensive challenges that families of children with dementia experience. 

• Incentivise investment in therapeutic development as well as systems of health and social care.

• Realise economies of scale in research and care of the childhood dementia disorders.

• Bring together cross-disciplinary expertise from medical to service provision to deliver comprehensive quality care. 

• Recognise opportunities for collaboration across research to accelerate therapeutic developments for multiple disorders concurrently.

• Drive the efficacy of responses across systems of research and care.

Childhood Dementia Initiative’s (CDI) approach considering the collective conditions under one umbrella has been successfully applied in other disease groups including ageing dementia and cancer. Both ageing dementia and cancer consist of over 100 sub-type disorders each; both are considered holistically in service and support provision and research silos are minimal. 

CDI’s approach also addresses multiple core priorities of the 2021 National Strategic Action Plan for Rare Diseases which is endorsed by the Commonwealth. Globally there has been a push from rare disease experts for a more integrated approach to improve efficiency, equity and sustainability in research. They indicate integration improves healthcare access and coordination, shortening the diagnostic odyssey and improving physical and mental health outcomes and quality of life for rare disease patients and their families. There is also research indicating that mechanisms are shared across multiple childhood dementia disorders, presenting a powerful opportunity for therapeutic development and care.  

Since 2020 CDI has realised Australian outcomes at pace, affirming the approach, such as: 

1. Hon Greg Hunt MP, Federal Minister for Health, acknowledged “the great and pressing challenge of childhood dementia” and announced the first ever government funding round for childhood dementia. 

2. Increased investment in childhood dementia research projects across Australia.

3. Increased representation of childhood dementia across national media.

4. Two national ageing dementia support services extended their support to children for the very first time. 

5. The first ever Childhood Dementia Research Symposium with global and local presentations and participation. 

6. Increased funding, recognition and support for CDIs work. (250 words)

Childhood Dementia Initiative has articulated a step change approach to the paradigm shift for childhood dementia conditions: 

The Childhood Dementia portal is the digital representation of this entire approach, driving the key priorities in accessibility and equity of response.

Childhood Dementia Initiative has articulated and embraced an evolving outcomes framework that is updated and addressed monthly. The purpose of this framework is to ensure all activities are driving forward strategic priorities with the highest level of efficacy.

Very few examples of indicators already being used to measure progress of this solution include: 

• Numbers of consumers inputing into solutions
• Numbers of researchers, clinicians and services providers accessing  resources
• Investment across the landscape of research specific to childhood dementia

• Investment into Childhood Dementia Initiative 

• Numbers of reviews and papers about childhood dementia
• Number of publications that use keyword "childhood
  dementia"
• Number of downloads of formal education resources

CDI seeks to measure indicators that directly inform short term, intermediate and long term outcomes including: 

1. Children with dementia and their families receive appropriate and equitable care. 

2. Research is optimised to deliver effective treatments and improve the quantity and quality of life of children with dementia.

3. The world knows that childhood dementia exists and is unacceptable. 

Childhood Dementia Initiative’s (CDI) collective response to the 70+ disorders that result in childhood dementia reframes the challenge of these rare diseases to focus on the commonalities. 

Our vision is for children with dementia to live long and fulfilling lives. 

We will achieve this by: 

1. Increasing  awareness: You can’t unhear the words ‘childhood dementia’ - It reframes the challenges in a more appropriate way, invoking empathy and action. CDI’s approach is building evidence to inform policy, funders, researchers, healthcare and social care providers of the experience of childhood dementia.

2. Accelerating therapeutic development: Considering the childhood dementia conditions collectively enables economies of scope and scale, increasing research investment and accelerating time from lab to clinic. It enables a collaborative response, limiting duplication and increasing efficiencies.

3. Changing systems for long term impact: CDI’s methodology is not building new services or programs, but rather adapting existing services and infrastructure to better serve children with dementia and their families. This systemic shift will affect the lives of children now, and long into the future. 

4. Enabling better care and quality of life: Increased awareness and accelerated therapeutic development both guide and enable a systemic response to the collective needs of the childhood dementia community, accelerating treatments and building pathways to equitable and quality care. 

Ultimately our work will:

• Deliver treatments and cures for children with dementia;

• Enable equitable access to quality care for children with dementia and their families;

• Make childhood dementia a health policy priority.

Childhood Dementia Initiative is developing a digital portal that amalgamates several technologies including simple relational databases, audio visual media, service directories, behavioural technology to understand user needs and prompt for following informational needs, accessibility technology and language technology. 

The portal will be optimised to provide critical information to users that are time poor and families that have significant stress in their lives. It will prioritise the deliver of curated and trusted information - a one stop shop for childhood dementia.

Childhood Dementia Initiative (CDI) seeks to globalise and recognises the breadth of diversity that needs to be considered to do so effectively. 

1. CDIs work is guided by the voice of families of children with dementia. Without understanding their perspective it’s impossible to deliver an impactful response. This requires representation across the breadth of conditions, varied stages of their experience from diagnosis to bereavement, diversity in socioeconomic demographics, amongst more.  

2. CDI is committed to delivering an evidence based response to systemic change, including local expertise and family representation to identify priorities. For example Australia has a disparity in health outcomes for those based in urban environments vs those in rural or regional Australia. Noting this, CDI’s research collaboration on psychosocial impacts of childhood dementia specifically targets and engages those from regional Australia and other marginalised communities. 

3. The collaborative quality of CDI’s approach is critical to delivering equity and inclusivity. CDI seeks to work with local systems that already exist rather than create new ones. This gives the opportunity to leverage local knowledge when considering appropriate responses to childhood dementia.

4. CDI’s approach to expansion is methodical, requiring evaluation and then modification for different markets. CDI recognises that there is great complexity to paediatric diseases and responses, for example we know that simply discussing genetic conditions has different implications across cultures. This is why CDI seeks to consistently evaluate, testing and learning as we proceed.

In order to enable sustainable solutions for childhood dementia, Childhood Dementia Initiative does not introduce new services.  Rather we work to drive systemic change within established systems so that the needs of children with dementia and their families are met.

The childhood dementia change management process is robust and repeatable across systems and geographies. 

Our work will ultimately:

• Deliver treatments and cures for children with dementia;

• Enable access to equitable and quality care for children with dementia and their families;

Make childhood dementia a health policy priority.

Childhood Dementia Initiative is purely philanthropically funded. We seek to develop a diversified fundraising portfolio consisting of: 

1. Trusts and Foundations & Major Gifts

2. Bequests/ Legacy Gifts

3. Community Events & Campaigns

4. Government Funding 

5. Corporate philanthropy

6. Direct Marketing Campaigns

In the 2021-2022 financial year Childhood Dementia Initiative has increased a 44% growth on the previous year, representing significant investments from trusts and foundations and major donors. This accomplishment is particularly profound as it is only the second financial year for the organisation and a year with lockdowns and significant competing disasters for the philanthropic dollar. Raising just under AUD$800,000 CDI has a breakdown of funding as follows: 

1. 58% Foundation & Major Gift Grants

2. 12% Direct Marketing Campaigns

3. 11% Community Fundraising Events 

4. 19% Government Grants