Childhood Dementia Guide for Families

Information, guidance and practical tools created with families who’ve been there

These resources were co-designed with parents who understand the challenges of childhood dementia. From explaining your child's condition, to managing care and understanding your rights, this guide offers useful insights, compassionate support, and real-life guidance from parents who have faced childhood dementia.

“You are not alone. While it may feel isolating now, please know that there are parents like me who understand without explanation. " - A parent who helped create these resources

Information and guidance for families

Finding Hope:
A letter from one parent to another 

A message of support from a parent who has walked in your shoes. This letter acknowledges feelings you may be experiencing, shares personal insights, and offers encouragement during this challenging time.

Understanding Your Child's Diagnosis: A guide for parents of children with childhood dementia conditions

A clear, straightforward explanation of childhood dementia to help you make sense of your child's diagnosis.

Supporting a Family Affected by Childhood Dementia: A guide for grandparents, family members & close friends

A guide that explains childhood dementia in simple terms and provides practical ways to offer a family support. 

Practical healthcare resources for families

Healthcare Rights Guide: For parents of children with a childhood dementia condition

This guide suggests practical ways to talk with healthcare providers and stand up for your child's needs. 

Doctor Appointment Checklist

A form to help you prepare for, manage, and follow up on healthcare appointments. Use this to capture information and ask important questions.

Easy Read Doctor Appointment Form

A simplified version of the Doctor Appointment Checklist with straightforward language and clear formatting to help track medical visits.

About My Child: A one page summary for new doctors

A summary form to share with a new doctor, giving them all the important details they need to know about your child.

Resources coming soon

• About My Child template: A comprehensive template that captures the child's personality, preferences, and needs beyond medical information
• Systems navigation map: A visual guide to help parents understand the various systems they'll need to navigate (health, NDIS, education, etc.)
• Accessing the National Disability Insurance Scheme (NDIS) and disability support: Resources for families in Australia
• Template letters: Letters for advocacy with MPs, education providers and disability services
• Video resources: Video content featuring real families sharing experiences and advice
• Grief, loss and bereavement resources