10 December 2025
New report calls for action on childhood dementia
Alzheimer Scotland has today published a groundbreaking new report on childhood dementia, calling for greater investment in support for those affected.
The report is published on behalf of Childhood Dementia Scotland – a collaborative partnership set up by Alzheimer Scotland in 2024 that brings together families of children with childhood dementia, clinicians, health, social care and education professionals and family support organisations, from Scotland and across the UK.
The partnership aims to raise awareness of childhood dementia, help support and give a voice to families of children with dementia, improve the response from health, social care and education, and encourage greater investment in coordinated and collaborative research around the conditions that cause childhood dementia.
Childhood dementia is poorly understood and is caused by more than 145 rare genetic disorders which are progressive and life limiting. While these conditions are rare, they all cause dementia in children.
The experience of every child affected is unique – in some cases, symptoms can be present in babies and young children while in other cases they may not appear until teenage years. The symptoms can be similar to those of adult dementia – confusion, memory loss, and loss of speech and motor skills.
Childhood dementia affects an estimated 380 families in Scotland. Half of all children diagnosed will die before their 10th birthday and yet, childhood dementia remains largely invisible to the public, professionals, and policy makers.
The report calls on the Scottish Government to take three key actions:
- Include childhood dementia in the national dementia strategy second delivery plan
- Develop a nationally standardised, evidence-based framework of practice for childhood dementia in Scotland
- Invest in research.
Jim Pearson, Alzheimer Scotland’s Deputy Chief Executive and Chair of Childhood Dementia Scotland, said: “Childhood dementia is poorly understood and because of this remains largely invisible within our health, social care and education systems.
“This report puts childhood dementia into the spotlight. It shares the experiences of families and children living with childhood dementia and sets out key actions Scottish Government can implement to change that.
“Families cannot wait. Scotland must act now so every child gets timely, compassionate support.”
