Childhood dementia

What is childhood dementia?

Childhood dementia is poorly understood and is caused by over 100 rare genetic disorders which are progressive and life limiting. While these conditions are rare, there is a commonality that they cause dementia in children.

Types of childhood dementia include:

• Batten disease
• Rett syndrome
• NiemannPick disease
• and Sanfillipo syndrome

Alzheimer Scotland and childhood dementia

In 2023, Alzheimer Scotland formed a partnership with the Childhood Dementia Initiative in Australia, embedding childhood dementia into our core work, and recognising that dementia-causing diseases can affect people at any stage of life.

In late 2024 we developed a collaborative partnership with organisations from Scotland and across the UK to start addressing the challenges around childhood dementia. This includes researchers, academics, and
other groups that work with rarer dementias such as Battens Disease Family Association and NiemannPick UK.

This collaborative is called ‘Childhood Dementia Scotland’ and aims to raise awareness of childhood dementia, help support and give a voice to families of children with dementia, improve the response from health and social care, and encourage greater investment in coordinated and collaborative research around the conditions that cause childhood dementia.

The initial focus for Childhood Dementia Scotland is on publishing a report that will highlight the size and scale of childhood dementia within Scotland. It will demonstrate through family narratives and stories the impact that childhood dementia has on the children and their families, and it will look to make some recommendations on how we raise the profile and respond to childhood dementia.