Childhood dementia

27 Mar 2026 10:49 AM

Dedicated specialist support for affected families.

Scotland has taken an ‘important step forward’ in recognising childhood dementia by funding specialist support for families affected by it, Health Secretary Neil Gray has said.

The Scottish Government is providing £118,873 to Alzheimer Scotland to support the employment of two childhood dementia development officers – the first country in the United Kingdom to fund this kind of dedicated support.

The development officers will be responsible to raising awareness of childhood dementia, developing understanding amongst professionals, and ensuring a support network is in place for families affected by it.

Childhood dementia is a term used to describe a range of rare, inherited conditions that affect children and young people. Often life-limiting, it can lead to symptoms more commonly associated with adult dementia – including loss of speech, memory, mobility and the ability to carry out everyday tasks.

Mr Gray recently said:

“My sympathies go out to any young people and families affected by childhood dementia.

“Childhood dementia may still be considered rare but for many it can be life-limiting. That’s why we’re doing all we can to maximise life expectancy and to ensure families have access to the support and care they need.

"The First Minister and I recently met with campaigners and families living with childhood dementia. I thank them for sharing their experiences and that meeting had a profound impact on us.

“That's why I’m pleased we have become the first country in the United Kingdom to provide specialised support, through Alzheimer Scotland, for childhood dementia. It’s an important step forward in recognising the impact of childhood dementia in Scotland and providing the care and advice to those who need it.”

Background

Every child with childhood dementia experiences it differently.

Childhood dementia refers to a group of more than 145 rare, inherited conditions that are often progressive and life‑limiting. Conditions commonly associated with childhood dementia include Batten disease, Rett syndrome, Niemann‑Pick disease, and Sanfilippo syndrome.

While some symptoms appear in infancy or early childhood, others may not emerge until the teenage years.