Director of Programs awarded prestigious Churchill Fellowship to investigate global care for children with dementia
July 2025: Gail Hilton is breaking new ground as the first person to comprehensively investigate care models for children with dementia worldwide.
The Childhood Dementia Initiative's Director of Programs, Gail, was awarded a prestigious Churchill Fellowship in 2024 to investigate best practice models of care for children with dementia around the world. Gail's fellowship represents a critical milestone – she is the first person to undertake a comprehensive global study of care approaches for children living with dementia.
Churchill Fellowships enable Australians to travel overseas to investigate and deepen their expertise on their key areas of specialisation, returning with new knowledge and networks to create positive change in their communities.
Gail has over 20 years of experience in the not-for-profit sector across leading best practice service delivery, projects and operations management. Her passion for health equity and dedication to listening deeply to lived experience has greatly enhanced Childhood Dementia Initiative's comprehensive consultations, stakeholder engagement and advocacy for improved care and support for children with dementia.
“I'm honoured to be a Churchill Fellow. The knowledge, insights and connections gained will significantly impact Childhood Dementia Initiative's work to improve survivorship and quality of life for children with dementia.
“Currently, there is no gold standard of care for children with dementia. This fellowship addresses an urgent gap in knowledge that affects families worldwide. I consider the Fellowship another acknowledgement of the systemic failures that are preventing children from getting the healthcare and support they need," adds Gail.
Itinerary
Gail's Churchill Fellowship travel spans Norway, the UK, Canada and North America. She is meeting health professionals, scientists, policymakers, service providers, patient organisations and families. Her journey has revealed both heartbreaking challenges and inspiring innovations.
In Norway, Gail visited the Frambu Centre, a national centre for rare disorders and disabilities in Norway that is considered to be one of the best centres in Europe. She addressed a conference of experts while there on Childhood Dementia Initiatives' work to drive change across all of the genetic disorders that cause childhood dementia.
Among the families she met there, was 13-year-old Syver, who lives with CLN3, a form of childhood dementia, and his father Øyvind. Syver and Øyvind have transformed their country's awareness of childhood dementia through media coverage and advocacy. Their efforts have resulted in significant funding to research.
“What struck me most was when Øyvind spoke about the personal cost of driving this change," Gail reflects. “It reinforced why we must create systemic change. Families shouldn't have to carry this burden alone. They are already living with complex, progressively worsening conditions with no cure. On top of that, families are often having to advocate and fight just to get their children the healthcare and support they need. Adding in to all of that undertaking advocacy and awareness-raising to change the status quo: it's a mammoth effort undertaken by incredibly courageous and dedicated families around the world. I'm looking forward to the day when families can focus on their child and each other and know that they'll be cared for."
In the UK, Gail's packed schedule included:
- Speaking at the MPS Society Conference in Coventry
- Visiting Great Ormond Street Hospital
- Meeting with Dementia UK
- Meeting and learning about the Diana Nurse team in Leicester
- Discovering the innovative Cockayne Syndrome Clinic in London, where community organisations partner with health services to create exceptional family-centered care
One standout example comes from London's Cockayne Syndrome Clinic, where Gail met with CEO and founder Jayne Hughes from Amy and Friends, Family Support Coordinator Meg, and specialist nurse Paula. “This clinic model demonstrates how innovation in health and partnerships with community organisations can create truly exceptional care," says Gail.
“It's so inspiring to find examples where dedicated teams have refused to accept the status quo," says Gail. “They're showing what's possible when we put children and families at the center of care design."
The second leg of Gail's Fellowship will include:
- A presentation to the team at SickKids Toronto and meetings with many of the team
- A visit to SafeHaven a renowned residential and respite care facility in Toronto
- Meetings and observations at Children's Hospital, Colorado
- Speaking to the palliative care research team at Standford
As Gail continues her fellowship, every clinic model studied, every family support approach documented, and every innovative practice discovered feeds directly into our mission. The knowledge gained will shape how we advocate for policy change, design support services, and push for better care standards across Australia and globally.
“I have learnt so much as an individual due to this Fellowship and we at Childhood Dementia Initiative will translate that into learnings for every aspect of childhood dementia in Australia. In parallel, I'm being met with overwhelming support for Childhood Dementia Initiative's work and a desire from stakeholders to work collaboratively for change globally. The Fellowship is helping to build a global community united in transforming the care and research landscape for children with dementia and accelerate progress," says Gail.
