Niemann-Pick Disease Type C and Childhood Dementia

Childhood dementia is an area that is under recognised and often misunderstood, despite there being over 140 neurodegenerative conditions – including Niemann-Pick disease type C – that can cause it.  

As these conditions progress, families face daily challenges in providing complex, round-the-clock care. The impact on family life is significant: parents often become full-time caregivers, nurses, and advocates all at once. The effect on mental and emotional health is equally profound, as families live with constant uncertainty, anticipatory grief, exhaustion, and ultimately, bereavement.

The systems that are meant to support children and families are increasingly fragmented and inconsistent.  They experience many challenges in navigating between health, education, and social care services that don’t always recognise the unique needs of children and families living with childhood dementia.

That’s why we are working together with colleagues across the sector and across the world, to bring visibility to childhood dementia, to push for better coordinated care, timely diagnosis, equitable access to therapies, and greater investment in research.

Niemann-Pick disease type C (NPC) is a rare, inherited, progressive neurodegenerative condition and a leading cause of childhood dementia. While dementia is often associated with older age, childhood dementia encompasses over 140 genetic conditions that result in cognitive decline, loss of skills, and premature death in children and young people.

Families affected by childhood dementia face profound challenges, including long diagnostic journeys, limited treatment options, fragmented care, and significant emotional, financial, and practical burdens.

This poster presents findings from a cross‑condition lived experience survey exploring childhood dementia across:

Preliminary findings from families in England and Scotland highlight:

The poster calls for greater recognition of childhood dementia within research, policy, and care frameworks.

Recent media coverage has highlighted the reality for families affected by childhood dementia in Scotland and across the UK, amplifying the voices of parents and carers who are calling for better recognition, earlier diagnosis, and coordinated support.

Childhood dementia is increasingly being recognised within national dementia policy in Scotland, marking a crucial shift towards inclusion.

This work was led and supported by:

With thanks also to:

We sincerely thank the children, young people, and families who contributed to the Lived Experience of Childhood Dementia Survey, and all organisations working to improve awareness, research, and support for childhood dementia.

For further information about the poster or this work: