Demential Strikes Children Too GIF

Dementia strikes children too


The Dementia Strikes Children Too campaign travelled across the UK with a video and photography team to meet with families whose children were living with a form of childhood dementia. They wanted to share their own unique journeys, the challenges they face, and what action they want to see implemented.

These stories have been developed alongside the Batten’s Disease Family Association (BDFA), Niemann-Pick UK (NPUK) and the Society for Mucopolysaccharide Diseases (MPS Society). These patient organisations helped this campaign reach out and talk to families and children who live with a form of childhood dementia in the UK. While there are several different groups of neurological diseases which make up childhood dementia, some forms of the disease are more common than other types, and you may notice this in the spread of stories from families below.

Professionals in the field hadn't ever come across it by name… I think it's important that changes.

Watch Claire and George’s story here.

Try telling a little girl who's been able to walk and run around, that she can't do it anymore.

Watch Greg, Claire and Kaycee’s story here.

Lleyton walked me down the aisle on our wedding day while he could still walk and stole the whole day.

Watch Joanne, Lee and Lleyton’s story here.

We've had to watch one child lose his ability to do anything - and now again with Amelia.

Watch Lucy, Mike, Ollie and Amelia’s story here.

You just really don’t know where to turn to, or what to do for the best.

Watch Mel and Matilda’s story here.

Over time you realise that actually this is something very, very serious.

Watch Lynsey and Caleb’s story here.