Working with children and families
For health and care professionals
Understanding childhood dementia
Families' lived experience
Working with families
Find resources and information to support you in your role here
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’ve collected insights and advice from a range of professionals and families to help you when working with children and families. We have two sets of resources.
- Insights and reflections from families (below) on how families want to work with heath and care professionals.
- Insights and reflections from health professionals on a range of topics including diagnosis, care, the importance of hope, the impacts of childhood dementia and palliative care.
Insights and reflections from families
Insights and advice from health professionals
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: Working with families and children with dementia
These videos provide an opportunity to hear directly from parents and carers. They share insights gained through their lived experiences working with health and care professionals. Their interviews align with the 5 themes identified during a series of focus groups and interviews undertaken with parents and carers.
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 to know more 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.
Stay up to date on new resources and developments
Tell us how to reach you, and we'll notify you about new resources and developments.