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STThe parents of children with dementia have told STV News caring for their child have left them feeling “helpless and broken”.
It comes as a new report, seen exclusively by STV News, found “catastrophic failures” in the current system to support youngsters living with the condition.
Almost 400 children in Scotland have dementia, but charity Alzheimer Scotland says the disease remains largely invisible, poorly understood and overlooked by policymakers.
Darren and Amanda Scott’s daughter has Sanfilippo syndrome – an incurable, rare condition that causes childhood dementia.
Sophia, now aged 14, was diagnosed the day before her fourth birthday.
“The words were that she won’t live long,” says Darren. “(We were told) take lots of photos while you can, I’m very sorry,’ and that was it.”
Childhood dementia is an umbrella term for more than 145 genetic, metabolic and neurodegenerative conditions that result in progressive brain damage in children and premature death.
They share the symptoms of adult dementia but start in early life. 70% of children with dementia will die before their 18th birthday. Most variants of childhood dementia are caused by inherited gene mutations.
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