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.
- Insights and reflections from families on how families want to work with heath and care professionals.
- Insights and reflections from clinicians (below) on a range of topics including diagnosis, care, the importance of hope, the impacts of childhood dementia and palliative care.
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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.
Resources
- Video: Your role and hope: reflections from Professor Kenneth Nunn and Sam, father of Caleb.
- Video: Care, support & referrals for children with dementia : clinicians’ advice spanning early diagnosis, palliative care referral, multidisciplinary support, symptom management & clinical trial participation
- Video: Your role and families’ forever stories: Dr Leigh Donovan & Ali mother of Eddie on professionals being a part of families’ memories that last beyond the death of their child.
- Video: Paediatric palliative care: Experts give insights on its purpose, ways it gives children the best possible quality of life, when and how to refer families.
- Video: Diagnosing and diagnosis delivery: clinicians on the signs, symptoms and how they plan to sensitively deliver a diagnosis
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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