Childhood Dementia Connect

Childhood Dementia Initiative

One in 2900 babies will be born with a childhood dementia condition. Their lives will be governed by severe symptoms, high care needs, grief and poor quality of life for themselves and their families. Half of these children won't live to see their 10th birthday. Childhood dementia is terminal.  

Children with dementia and their families are underserved, largely unrecognised and  ignored in policy frameworks globally. All children with dementia need equitable access to care and support services appropriate to their age; this is currently denied to those suffering childhood dementia.

Sector-wide discrimination exists towards children living with dementia and their families, with established dementia care and support services not available, appropriate or adequate for this cohort.  No clear pathways for care and support exist and families have to battle for the needs of their children. In many cases, there is more than one child affected in a family. 

There are over 140+ conditions that will result in childhood dementia. 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;

• 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. 

Emerging research has highlighted the ongoing impacts of childhood dementia on the whole family, including profound ongoing grief, financial stress, isolation, anxiety and depression. Patient organisations, family advocates and research indicate the value of peer to peer connections, especially for this group who are isolated due to their unique circumstances, systemic challenges, discrimination experienced and geographic spread.

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

Never before have the needs of this group of children and their families been interrogated and addressed as a collective. 

*Elvidge K, Christodoulou J, Farrar M A, Tilden D, Maack M, Valeri M, Ellis M, Smith N J C; the Childhood Dementia Working Group. 2023. ‘The Collective burden of childhood dementia: A scoping review.’ Brain, Volume 146, Issue 11: 4446-4455. 

*Nevin SM, McGill BC, Kelada L, Hilton G, Donnell M, Elvidge KL, Farrar M, Baynam G, Katz NT, Donovan L, Grattan S, Signorelli C, Bhattacharya K, Nunn K, & Wakefield CE. 2023. The psychosocial impact of childhood dementia on children and their parents: A systematic review.’ Orphanet Journal of Rare Diseases, 18 (277). 

There are 140+ conditions that result in childhood dementia. These conditions are rare or ultra-rare, but often have commonalities in presentations, disease mechanisms and prognoses. Under the umbrella of ‘childhood dementia’ we're able to amplify lived experience, realise economies of scale, build collaboration across research and service delivery, and increase investment across the breadth of the childhood dementia conditions. 

There is no current mechanism to connect families across the entire cohort of childhood dementia. Research and families themselves have indicated the value of peer to peer connections to build meaningful connections that limit the sense of isolation and provide supportive conversations such as navigating health systems, best practice in support and access to support services. 

Families have shared that they face profound discrimination across systems including significantly increased parental burden, disempowerment of carers, risks to their child’s safety, and neglect and inequity of care. All of this can be partially alleviated through the meaningful opportunity to connect with others who have experienced the substantially unique challenges that accompany childhood dementia.  In Western Australia one parent shared that meeting with others with children with dementia was, “the best day of my life since my child’s diagnosis - it was the first time I did not feel alone.” 

The international community of Childhood Dementia Connect will be co-designed with appropriate and varied stakeholders, including lived experience, and is anticipated to be an online service, actively supported by Childhood Dementia Initiative, with the goal of enabling: 

• Meaningful connections with others who are experiencing a similar disability journey. 

• Support peer to peer conversations that are trusted, uniquely relevant and diverse in perspectives. 

• An accessible and trusted community. 

The digital solution will be co-designed to integrate diverse perspectives and meet the specific needs of the is unique cohort including: 

• Exploratory workshops to define the problem, explore solutions and agree priorities.

• Wide consultation on the project proposal post exploration phase to capture diversity in experience and opinions. 

• Consultation on the prototype so caregivers can interact with the solutions to provide feedback before launch. 

• Evaluation of components to assess effectiveness and gather insights for future improvements.

• At the end of each year of the project, stakeholders will be invited to provide feedback on the co-design process to enable practice improvement. 

Rather than create a brand new service, Childhood Dementia Initiative always seeks to adapt and evolve current service delivery mechanisms to better respond to the unique needs of children with dementia and their families. It is with this in mind that the digital service solutions will be designed to be hosted across current communities or service hosts such as social networks and international rare disease marketing mechanisms. 

Additionally, 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. Access to a world-first peer community would be a primary step towards the trusted information networks. 

There are nearly half a million people living with childhood dementia globally, and every year an estimated 50,000 babies more are born with a condition that causes childhood dementia. 

Over months, years or decades, as their brains are damaged more and more, children with dementia progressively lose skills they’ve already developed such as the ability to write, read, talk, walk and play. Their brains also lose the ability to keep the body functioning properly and, eventually, to keep the body alive.

As there are no cures, children with dementia are often sent home, placing the carers and families of these children with the significant burden of their care. 

Childhood Dementia Connect is intended for these families and carers, to provide them with an accessible, administered and diverse community of trusted peers no matter where they are in the world. 

This will support them to: 

• Be better informed and more confident to advocate for their child’s needs. 

• Feel less isolated.

• Feel more empowered and in control of their and their child’s health journey through shared experience and mutual support. 

• Experience improved health outcomes and quality of life of children with dementia by facilitating connections that lead to emotional support, sharing coping mechanisms, and accessible valuable information to improve day to day life. 

Baseline data on isolation, emotional and physical health outcomes are available in various communities from psychosocial studies currently underway. These key measures will be embedded into the evaluation, enabling us to understand if the community developed through this project will have impacted people living with dementia and their families positively. 

Childhood Dementia Initiative is deeply aware of barriers in access to technology, as well as the lack of awareness of childhood dementia in the first place. It is therefore intended that this solution will be created with a focus on building communities where this knowledge is growing and where access to technology is a forgone conclusion. The ripple effect from growing communities will lead to further steps in the engagement opportunities. 

Childhood Dementia Initiative has built a Family Advocates Program and has fostered engagement within this community in Australia. This includes across round tables, through webinars and videos, and through peer support programs such as bereavement support. CDI has also undertaken research to understand the psychosocial impact of childhood dementia and the burden of childhood dementia. What we have learnt is the depth of isolation that is endured by families of children with dementia, as well as the articulated need for greater community across this cohort. We have received funding for a national digital community and have begun delivering a prototype for this solution, however recognise that for many of those within the childhood dementia community further community requires a removal of the global borders. This is already being created by families, but needs a space and trusted source to support with this endeavour. 

Until 4 years ago, the world was only considering the 140+ conditions that cause childhood dementia in isolation, resulting in severe underinvestment and neglect across systems of therapeutic development, healthcare, social support and policy. This has meant that 

• survivorship has not improved, childhood dementia is terminal,

• care and support needs do not meet the needs of children and their families ,

• and childhood dementia has been excluded from key national policies globally. 

Families are often faced with obscure diagnoses, with names of conditions that are often significantly unknown and obscure. 

The value of addressing these conditions under the one umbrella of childhood dementia builds a multitude of benefits including: 

• Providing language to families to both understand what is happening/ will happen to their child, and to communicate it to others.  “When the clinician did say [childhood dementia] I could grasp what was going on with my child the pieces sort of flowed together of why she wasn't progressing, why she stopped walking.” - Parent

• Provide families the opportunity to connect with others whose children are facing the same disease mechanisms, presentation and prognoses. “It's the most succinct way to explain a complex condition in my/ other child/ children. People aren't going to listen if the first bit doesn't grab them.” - Parent

• Enable opportunities to realise economies of scale in research and service provision. 

• Increase awareness of multiple conditions in one go globally. 

• Increase opportunities to collaborate in research and in service provision. 

• Increase investment into all of childhood dementia. 

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.

Secondly, bringing together families to build community across borders is uniquely critical for rare disease and childhood dementia conditions. Families of children with dementia have shared how misunderstood and isolated they feel. The innovation in Childhood Dementia Connect is the recognition of how responses need to traverse borders and build community. Solutions require co-design in placing the lived experience first, and developing solutions that are easily accessible, and marketable. 

Over the last four years Childhood Dementia Initiative has progressed the cause of childhood dementia with great success in Australia, including: 

1. National dementia organisations have included children in their service provisions for the very first time. 

2. The Australian government issued the first ever government funded research grant round for the collective childhood dementia conditions - with 5 research projects looking at collaborative responses to childhood dementia.  

3. The Australian 10 year National Dementia Action Plan released later this year will be one of the first in the world to include childhood dementia. 

4. Publications across research on childhood dementia have increased, including the ‘Burden of Childhood Dementia’ published in world respected peer reviewed journal ‘Brain’. 

We have built networks and gathered researchers, healthcare professionals, policy advisors, philanthropists and most importantly families themselves who are motivated and acting to drive change. 

Our vision, however, is to build sustainable global health solutions for all children with dementia. 

The Amgen Prize provides a global stage to expand this opportunity and to grow the reputation of this approach, removing barriers across borders. 

Additionally, Childhood Dementia Initiative recognises that rare disease and childhood dementia specific communities require a global approach to truly recognise scale that is inclusive and effective. 

Lastly, every dollar that is invested in Childhood Dementia Initiative is currently seeing it raise a further $5. We pledge to use your funding wisely to build a platform of support by leveraging the prize's prestige and dollar value. 

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. 

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 inputting into solutions

• Numbers of researchers, clinicians and services providers accessing  resources

• Investment across the landscape specific to childhood dementia

• Investment into Childhood Dementia Initiative 

• Numbers of connections between consumers, family members, and opportunities to inform research, service deliver provision and awareness. 

• Number of publications that use keyword "childhood dementia"

• Number of downloads of education resources and engagement with the Childhood Dementia Initative website. 

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

Short to Intermediate: 

1. Consumers identify with childhood dementia

2. The evidence base for childhood dementia grows

3. Development of new multi-indication collaborations

4. Policy makers and funders know childhood dementia exists

5. Childhood dementia is considered as a collective

6. Consumers are involved with research, advocacy, awareness and education

Long Term:

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.

Research has long shown the benefits of peer support and communities for children with disease. Australian qualitative research (Meltzer, Dowse, Smith, & Dew, 2020) with family members of people with disability has identified several benefits of peer support. For participants in peer support, these benefits include:

- exchanging useful information about experiences and lessons learnt with other families and about practical issues such as managing services and supports

 - giving and receiving motivation and encouragement to cope with challenges or support self-confidence and personal development

 - social interaction and opportunities to develop friendships with peers

 - understanding and feeling understood by others with similar experiences feeling part of a community

 - building capacity to work together; for example, working with others to  - develop personal skills or working as a group to petition for change in the wider community

 - building resilience and improving wellbeing.

By applying this value of peer-support Childhood Dementia Initiative recognises that the main theory of change for this particular program is understanding the value of recognition of the childhood dementia cohort itself. 

By focussing on the commonality that is the dementia for these children, we increase awareness of the conditions and their breadth of impact for families across 140+ conditions, giving them an opportunity to connect and communicate in a space and time accessible to them, allowing them to realise the value of peer support as articulated above.

CEO & Founder - Megan Mack 

Head of Strategy - Gail Hilton 

Family Coordinator - Joanne Kershaw

There is also an advisory board and a Family Advocates advisory group that will be directly advising on the development of this solution. 

2 years. 

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

Since inception Childhood Dementia Initiative has grown on average 84% year on year. We continue to focus on untied/ unrestricted funding support that is committed over multiple years to ensure that the organisation is able to plan project delivery over time.