Information for education professionals
Here you will find information and resources for those working in a school community where you are supporting a child with childhood dementia. Every child's experience is different, and this progressive condition can affect learning, communication, mobility and behaviour in ways that change over time.
These resources are designed to help you understand childhood dementia, adapt your approach as a child's needs evolve, and work alongside families and other professionals to provide the best possible support.
For information relevant to all professionals, including what childhood dementia is, families' lived experiences, and how to support and communicate with them - visit our Information for Professionals page.
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Using the term 'childhood dementia'
You may have a student who has been diagnosed with a condition resulting in childhood dementia, and whose family uses that term to describe it. Childhood dementia is an umbrella term for a group of serious, life-limiting conditions that cause a child's brain to progressively lose function, beginning before the age of 18.
Children affected gradually lose the ability to write, read, talk, walk and play. They may experience seizures, changed behaviour, and difficulties with sleep and feeding. Presentation and progression differ for every child.
Families have found 'childhood dementia' the clearest way to communicate their child's condition to teachers, schools and the wider community. While many found the term confronting at first, it quickly became the clearest and most useful language they had.
“I just think that it makes people understand really what she’s going through. It’s just been the easiest way to tell her story.”
Parent, Childhood Dementia Initiative focus group
Supporting a student with childhood dementia
Once you know a student in your care has childhood dementia, you may be wondering what this means day to day and how best to support them.
This guide for teachers and school staff covers what to expect in the classroom, what the family may be going through, and practical ways to support both the student and their family - from preparing for your first meeting to working with the wider care team and looking after yourself along the way.
Childhood Dementia Project Echo® Community of Practice
Join the online community of health, education, disability and care professionals sharing and building knowledge on optimal care for children with dementia.
A place for health, education, disability and other care professionals to connect with experts and learn together about care for children with dementia.
The Childhood Dementia Community of Practice is a free, supportive, educational platform. It is designed to connect you with subject-matter experts and other professionals to share knowledge and experience on caring for children with dementia.
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Subscribe to our newsletter and join the growing community of health, disability and education professionals who are learning more and contributing to solutions. We will keep you up to date on emerging research and insights, the Community of Practice and how you can take part, information resources for professionals working with children and families, webinars, information sessions and in-service opportunities.
