Childhood dementia: families call for greater awareness and support

Childhood dementia is one of the most devastating conditions imaginable, yet it affects around 2,000 children in Australia at any given time. That means 2,000 families trying to care for and love their children while facing a degenerative brain disease with no cure.

Dementia Action Week is a time to recognise the impact dementia has across all ages. For families of children living with the condition, awareness and support can make an enormous difference.

A hidden collection of disorders

A national study has identified 145 genetic disorders that cause childhood dementia. Each one leads to progressive brain damage and the same heartbreaking symptoms seen in adult dementia — memory loss, confusion, personality changes, disturbed sleep and difficulties with learning and communication.

Dr Nicholas Smith, Head of Paediatric Neurodegenerative Diseases Research at the University of Adelaide, explained, “The 145 disorders we have classified as childhood dementia are complex and varied. Tragically, what they share in common is the heartbreaking, progressive neurocognitive decline and a severely shortened life expectancy.”

The study found the average age of diagnosis is four years old, despite symptoms usually appearing much earlier. Megan Maack, CEO of the Childhood Dementia Initiative, calls this long and painful process “a diagnostic odyssey.”

Families often move from thinking their child is healthy, to managing developmental delays, to eventually hearing the devastating diagnosis of dementia.

Living with relentless challenges

Dr Kristina Elvidge, Head of Research at the Childhood Dementia Initiative, says, “Childhood dementia is a cruel condition that robs children of the skills that they have only just learned — to speak, play and to recognise their loved ones.”

Maack has shared the overwhelming reality of daily life with the condition:

• Families juggle 15–20 medical specialities.
  
• Children gradually lose their ability to communicate, eat and sleep.
  
• Behavioural and psychological symptoms add to the challenges.
  

“Every aspect of daily care and daily life requires assistance,” Maack says. “It’s unrelenting.”

Limited treatments, urgent needs

Current treatment options are severely limited and research funding is sparse. Families are left not only dealing with complex medical needs but also with profound grief. Many have no access to specialised psychological support.

The average life expectancy for a child with dementia is just nine years, and 70% do not survive beyond 18.

Dr Smith and others are calling for stronger collaboration across healthcare, research and disability services. While major resources are devoted to adult dementia, childhood dementia receives far less attention — despite the urgent needs of affected children and their families.

A call for cross-sector support

Experts say lessons from adult dementia care should be applied to childhood cases, but the paediatric system is not yet set up to deliver the same level of support.

Maack says progress is being made but warns that gaps remain huge:
“What we have now is this understanding of dementia as a lifespan disease that also impacts children, but we don’t have a paediatric health system that’s set up in a way that accommodates their needs.”

As Maack puts it, “I’m grieving the little girl my daughter once was, she is gone… there aren’t specialised psychological supports. Most of the families we deal with have never been referred to psychological help.”

No family should have to face childhood dementia alone. Recognition, funding and coordinated care could help ease the crushing load families are carrying and offer children the best possible quality of life.