Working with children and families: professionals' insights

For health and care professionals

Understanding childhood dementia

Families' lived experience 

Working with families

Resources and information to support you in your role  

Thank you for your care and interest in childhood dementia. Children, young people and families will benefit from your awareness and understanding. Here, you’ll find resources to support you when working with children with dementia and their families. We have two sets of resources.

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Heath professionals' insights and reflections on working with children and families

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


Your role and hope: reflections from Professor Kenneth Nunn and Sam, dad to Caleb

In the absence of cures, families and professionals are tasked with ensuring the best possible quality of life for their children. This video speaks to professionals’ roles and the opportunities to provide hope. 

Care, support & referrals for children with dementia: clinicians’ advice

Clinicians’ advice on providing care and support for children with dementia. Topics covered include:

  • The importance of early diagnosis
  • Referrals and support to ensure families access multidisciplinary care, help with symptom management (including sleep and behaviour management), as well as support for parents and carers.
  • Referral to palliative care and its value in giving children quality of life for as long as possible.
  • Clinical trials: the importance of families knowing about them and supporting them to make decisions about their child’s participation.

Forever stories of families impacted by childhood dementia

Insights from Dr Leigh Donovan, Consultant in palliative care, loss, grief and bereavement (Thanatology). Health and social care professionals working with children with dementia become a part of families’ ‘forever’ stories, their memories that last beyond the death of their child. Ali, mother to Eddie, shares an important memory enabled by a nurse during her son’s care.

Paediatric palliative care for children with dementia

Experts share the purpose and value of paediatric palliative care. Discussed are the range of ways palliative care can help give children the best possible quality of life and provide families with important support. When and how to refer families to palliative care is covered as well as the benefits of referring families.

Diagnosing childhood dementia & advice on diagnosis delivery

Clinicians share the signs and symptoms of childhood dementia, the process of finding a diagnosis and how they plan to sensitively deliver a diagnosis of a condition that causes childhood dementia. 

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