Working with children and families
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.
5 requests from families: a guide on how to work together
This information sheet summarises for you the 5 major themes collected during a series of focus groups and interviews with parents and carers. These focus groups were conducted in 2021 and 2022 to collect information on how health and care professionals can work with families.
Video series: Health professionals' perspective
EPISODE 1
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.
EPISODE 2
Care, support & referrals for children with dementia: clinicians’ advice
Clinicians’ advice on providing care and support for children with dementia, including early diagnosis, referrals and support for multidisciplinary care, palliative care, and clinical trials.
EPISODE 3
Forever stories of families impacted by childhood dementia
Insights from Dr Leigh Donovan, Consultant in palliative care, loss, grief and bereavement (Thanatology). Ali, mother to Eddie, shares an important memory enabled by a nurse during her son’s care.
EPISODE 4
Paediatric palliative care for children with dementia
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.
EPISODE 5
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.
EPISODE 6
Using the term 'childhood dementia'
Health professionals share the benefits of using the term ‘childhood dementia’ and their reflections and advice on the use of the term. Childhood dementia is an umbrella term used to describe a range of genetic conditions.
Video series: Parents and carers perspective
EPISODE 1
We need respect, care, kindness and hope
Parents of children with dementia share the value of being treated with respect, care and kindness by healthcare professionals.
EPISODE 2
Please understand we are the experts on our children
Parents of children with dementia share the value of health professionals understanding they are the experts on their children.
EPISODE 3
Please do some research about childhood dementia
Parents of children with dementia share the value of health professionals doing some research to know more about childhood dementia.
EPISODE 4
Use your knowledge of my child’s dementia
Parents of children with dementia share the value of health professionals using their knowledge to give children the care and support they need.
EPISODE 5
Recognise the impact of childhood dementia on the whole family
Parents of children with dementia share the value of health professionals recognising the impact of childhood dementia on the whole family.
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