December 2024: In a landmark development for childhood dementia care, key stakeholders gathered in Glasgow for a groundbreaking roundtable discussion.
The December roundtable marked a crucial milestone in transforming the care and quality of life for children with dementia and their families across Scotland. It came about as a result of a partnership between Alzheimer Scotland and Childhood Dementia Initiative.
The hybrid event brought together approximately 20 in-person participants and additional virtual attendees, representing a diverse cross-section of stakeholders. The gathering included:
- Families sharing lived experiences of childhood dementia
- Clinical professionals
- Research experts
- Policymakers
- Patient and family support organisations
Gail Hilton, Head of Programs, Care and Quality of Life at the Childhood Dementia Initiative (pictured above), shared insights from the organisation's work in Australia. Australia is the first country to adopt a collective response to childhood dementia disorders. Jim Pearson, Director of Policy and Practice at Alzheimer Scotland, emphasised Alzheimer Scotland's commitment to driving collaborative change.
Roundtable outcomes
The roundtable established four key objectives:
- Building consensus and creating a catalyst for positive change in Scotland
- Committing to produce a ‘State of Childhood Dementia in Scotland' report. This is inspired by Childhood Dementia Initiative's ‘State of Childhood Dementia in Australia 2024' report.
- Amplifying the voices and expertise of families with lived experience
- Establishing a collaborative network of stakeholders across all sectors
This initiative positions Scotland at the forefront of addressing childhood dementia care. Through Alzheimer Scotland's established networks, including the Scottish Dementia Research Consortium and international partnerships with Alzheimer Europe and Alzheimer's Disease International, the learnings and approaches developed in Scotland will contribute to global understanding and treatment of childhood dementia.
The devastating reality that 3 out of 4 children with childhood dementia don't survive to age 18 underscores the urgency of this work. With dedicated resources, cross-sector collaboration, and the integration of childhood dementia into national policy frameworks, Scotland is poised to make significant strides in supporting affected children and their families.
This roundtable represents not just a meeting, but the beginning of a coordinated effort to transform the landscape of childhood dementia care in Scotland, with potential ripple effects for children across the world.
Alzheimer Scotland and Childhood Dementia Initiative partnership
A partnership between Alzeheimer Scotland and Childhood Dementia Initiative was formalised in February 2023. The December 2024 roundtable represented the culmination of nearly 2 years of intensive partnership work.
During this period, Alzheimer Scotland embedded childhood dementia into their core work, recognising that dementia-causing diseases can affect individuals at any stage of life. This included Alzheimer Scotland's post-diagnostic support link workers receiving training from Childhood Dementia Initiative, building crucial expertise within Scotland's healthcare infrastructure.
The scale of childhood dementia in Scotland
The urgency of this initiative becomes clear when considering the numbers: globally, an estimated 700,000 children live with dementia, with approximately 480 children and families affected in Scotland alone. This is comparable to the number of people living with motor neurone disease in the country. Despite affecting a significant population, childhood dementia, which results from over 100 genetic conditions, remains poorly understood and recognised by the public, healthcare professionals, and policymakers.
