There are more than 140 neurodegenerative conditions, including Batten disease, being known to cause childhood dementia. As these conditions progress, children and their families face increasingly complex challenges.
Childhood dementia is a primary symptom of all types of Batten Disease diagnosed in childhood. It affects everything that the child does, how they respond, how they initiate what they want, how they move, behave, learn and function. However, it remains widely misunderstood within the medical, education and social care environments.
Each child’s experience with dementia is unique. In CLN1 and 2, dementia symptoms can appear in babies, toddlers and preschool children and progress quickly. While for other children with CLN3 and other juvenile variants, symptoms may not start until they are school age. They all face one common challenge: childhood dementia is progressive. Over months, years or decades, as their brains are increasingly damaged, children lose skills they’ve already developed such as the ability to crawl, talk, walk, play and learn. Their brains also lose the ability to keep the body functioning properly and, eventually, to keep the body alive.
The role of Parents changes in response to the insidious nature of Batten disease on their child’s growing need. Parents become primary caregivers, communicators, educators, risk managers, nurses and advocates all at once. The impact on family life and the effect on mental and emotional wellbeing are at times overwhelming and profound. Families live with ongoing uncertainty, exhaustion and anticipatory grief, while also facing the devastating reality of bereavement.
The systems designed to support children and families can also be fragmented and inconsistent. Families are often required to navigate health, education and social care services that may not always work together effectively or fully recognise the distinct and complex needs of those living with childhood dementia.
This is why BDFA works alongside a broad background of colleagues around the world to increase the visibility and understanding of childhood dementia. Together, we are advocating for better coordinated care, earlier and more timely diagnosis, equitable access to treatments and therapies, and greater investment in research – so that children and families receive the support, care and hope they deserve.
‘Reece’s Batten Journey’
As part of our work with Childhood dementia Scotland we were delighted to attend Scottish Parliament for CHAS’ parliamentary reception, ‘Rewriting the future of how Scotland cares for dying children’, sponsored by Miles Briggs MSP.
The event provides an opportunity to explore how community care, partnership working and innovation can improve outcomes for children and young people with life shortening conditions, and provide families with greater choice.
Inverness Parent Donna, supported by BDFA’s Sarah Kenrick, Head of support and Advocacy, produced ‘Reece’s Batten Journey’ to highlight the key stages where support needs to strengthen.
You can read and download this document via this link below.
Dementia in Scotland – Policy and Evidence
Childhood dementia is increasingly being recognised within national dementia policy in Scotland, marking a crucial shift towards inclusion.
- Dementia in Scotland: Everyone’s Story – Scottish Government
Scotland’s national dementia strategy sets out a shared, long‑term vision for improving understanding, diagnosis, care and inclusion for all people affected by dementia, regardless of age.
New dementia strategy for Scotland: Everyone's Story - gov.scot - Childhood Dementia in Scotland 2025 – Full Report
A landmark report published by Alzheimer Scotland on behalf of Childhood Dementia Scotland, documenting the lived experience of families and calling for urgent, coordinated national action.
https://bdfa-uk.org.uk/sites/default/files/2025-12/Childhood%20Dementia%20Report_web.pdf
Organisations Involved
This work was led and supported by:
- Batten Disease Family Association (BDFA UK) – supporting individuals and families affected by Batten diseases
- Childhood Dementia Initiative – international movement to improve recognition and support
- Alzheimer Scotland – national dementia charity for Scotland
- Niemann-Pick UK (NPUK)
- MPS Society (UK)
Acknowledgements
We sincerely thank the children, young people, and families and all organisations working to improve awareness, research, and support for childhood dementia.
Contact
For further information: Email: support@bdfa-uk.org.uk