Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to reduce the prevalence of childhood dementia.

Dementia in children is exceptionally rare. If a ‘dementia’ developed during childhood, it is likely to be an inherited disease which would have implications for whether a clear diagnosis of dementia could be made.

Childhood dementia stems from several different groups of complex neurological diseases such as Niemann-Pick disease type-C, Batten disease and Mucopolysaccharide diseases. In the case of Batten disease for example, it is estimated to affect 25-40 children in England.

In September 2019, NHS England announced National Health Service funding for the treatment of Batten disease with access to a drug called Cerliponase alfa known to slow down onset and extend the child’s life.

We continue to implement the 2013 UK Strategy for Rare Diseases which contains 51 high level commitments to improve the lives of those with a rare disease or condition.