For health and care professionals

Thank you for your care and interest in childhood dementia. Children, young people and families will benefit from your awareness and understanding. In this section, you can access information and resources to support you when working with children with dementia and their families.

Childhood dementia: it's time for a new approach

Compared to adult-onset dementia, childhood dementia has received little recognition. This is because, until now, each of the genetic conditions causing childhood dementia have been considered and viewed individually, rather than as a broader group as the adult dementias are. 

Collectively addressing childhood dementia gives greater visibility of this cohort’s unique needs, and opportunities to improve support services and research.

Childhood Dementia Initiative drives systemic change by collaborating with and supporting professionals who work with children and families, and by putting consumer insights and evidence at the centre of improvements to care and policy.

“I think the key thing for everybody is to realise these kids by themselves are almost forgotten. More awareness can make some really massive differences to the kids' lives and the consistency of support that they receive, and help them live their best lives.”

John, dad to Eleanor and Joshua

A man smiles into the camera from front seat of car. Two kids smile from the back seat.

What is childhood dementia?

Childhood dementia is caused by a devastating group of 100+ genetic disorders that cause progressive brain damage.

‘Childhood dementia is an umbrella term representing a heterogenous group of childhood neurodegenerative disorders. Defined as global neurocognitive decline with multiple developmental skill loss following a period of developmental progress, the hallmark of childhood dementia is enduring and progressive loss of previously acquired developmental skills, in contrast to static or transient intellectual loss.’ (Nunn et al, 2002)

Developmental trajectories of individuals with typical development, intellectual disability and childhood dementia. 

Graph showing developmental trajectories of kids with typical development, intellectual disability and childhood dementia

The trajectory of childhood dementia classically proceeds in line with normal development for a long or short interval then decelerates and ultimately regresses (adapted from Haugen et al., 2019).

Families' lived experiences

Childhood dementia is a chronic, progressive, life-limiting condition. This means that care needs continually increase until a child dies. Families face a unique set of challenges:

  • All will become bereaved families.
  • They are managing complex physical challenges and dementia symptoms.
  • The lack of knowledge, data or research on childhood dementia creates additional burden, isolation and difficulty accessing care.

Emerging evidence shows that the specific psychosocial needs of children with dementia and their families are currently not being met.

"I wish that it wasn’t so lonely for kids with dementia, or so isolating for families when their child has dementia. I wish people understood what we are going through."
Jane, mum to Noah

A woman and boy smile into the camera. The boy holds onto a dog.

Working with children and families

We’ve collected insights and advice from a range of families to help you when working with children with dementia.

You'll hear families reflect on support for them and their children, and how they want health professionals to work with them.


“Realise that these children are often at the very extreme end of what you might treat or see on a day-to-day basis.”

Insights from health professionals

We have collated insights from a range of health professionals to help you when working with children with dementia.

You'll hear from health professionals on a range of topics spanning diagnosis, symptoms, impacts of childhood dementia, palliative care and more. 


More from health professionals

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Related content for health professionals

Understanding childhood dementia

Families' lived experiences

Working with children and families

Childhood Dementia Knowledgebase