The work of a healthcare expert at De Montfort University Leicester (DMU) that influenced policy on childhood dementia in Scotland has been recognised at the UK Dementia Awards.
Dr Chris Knifton, Associate Professor of Neurocognitive and Neurodevelopmental Education at DMU, co-authored the report Childhood Dementia in Scotland 2025 for the charity Alzheimer Scotland. The report helped persuade the Scottish Parliament to fund two childhood dementia development officers, making Scotland the first UK nation to provide dedicated funded support for families affected by childhood dementia.
Dr Knifton and his co-authors received special recognition at the UK Dementia Awards for their work on Childhood Dementia Scotland and raising awareness of the rare but devastating and incurable condition - around half of affected children die before the age of ten, and very few reach 18.
Childhood dementia remains one of the least recognised areas of dementia care and research. Much of the wider dementia sector, including awards programmes and services, is primarily focused on adult dementia. Even the term “young onset dementia” generally refers to adults developing dementia before the age of 65, rather than children.
But, in the UK childhood dementia causes more than 200 deaths each year — a figure approaching the number of annual childhood cancer deaths — yet public awareness remains comparatively low.
Unlike adult dementias, childhood dementia is not a single condition. It can be caused by around 150 rare genetic, metabolic and neurodegenerative disorders, including Batten disease, Sanfilippo syndrome and Niemann-Pick disease type C. Symptoms can include memory loss, confusion, difficulties with communication and learning, personality changes, disturbed sleep, anxiety and progressive neurological decline.
Dr Knifton, who is passionate about raising awareness of childhood dementia and improving diagnosis, care and support for the families affected, said:
“It was hard to see how this project would fit within these awards, because childhood dementia is still not widely recognised, even within the dementia community. But we tried anyway, and we’re very pleased to receive this special recognition.
“It means childhood dementia is beginning to become more visible within the wider dementia sector. We hope it encourages more dementia conferences, research programmes and awards to recognise and include childhood dementia in future.”
Dr Knifton is a member of the Childhood Dementia Initiative and recently presented two posters on childhood dementia at the 37th Global Conference of Alzheimer's Disease International in Lyon.
One of the presentations argued for the many rare conditions causing childhood dementia to be recognised collectively under a single term, helping improve awareness, diagnosis, research funding and care pathways for affected families.
Childhood Dementia Scotland has also been shortlisted for two categories at the forthcoming Dementia Care Awards 2026: ‘Outstanding Contribution to Dementia’ and ‘Equity, Diversity and Inclusion’.
Dr Knifton will also shortly be travelling to Portugal to raise awareness of childhood dementia at the invitation of the Portuguese psychologists association - Ordem dos Psicólogos Portugueses.
Posted on Tuesday 19 May 2026