The Childhood Dementia Guide for Families: new information and support resources for families
June 2025 Childhood Dementia Initiative has launched a vital suite of information and support resources for families. The resources were developed in response to consistent feedback from families during consultations on the need for supportive, practical and accessible information and guidance on seeking care and support for their children and families.
The Childhood Dementia Guide for Families was developed by the Childhood Dementia Initiative in collaboration with families. The Guide is designed to help families:
- Understand and talk about childhood dementia
- Manage healthcare appointments and enable better experiences with healthcare providers
- Confidently stand up for their children's needs
- Feel less isolated.
“This toolkit represents an important step toward our goal of improving outcomes for children with childhood dementia and supporting and empowering the families who care for them," says Gail Hilton, Head of Programs at Childhood Dementia Initiative.
“While Childhood Dementia Initiative is driving essential system improvements to reduce the burden on parents to advocate for their children, we're aware that parents urgently need information and support now. Parents who have gained expertise through their lived experience have shared their learnings through this toolkit which will help guide others as they navigate a childhood dementia diagnosis and their child's ongoing care. Utilising parents' lived experiences is an effective and powerful way that we can give parents support now," adds Hilton.
Contents
The first phase of the Childhood Dementia Guide for Families is made up of two components:
Information and guidance for families
Finding Hope: A letter from one parent to another A message of support from a parent which shares personal insights and offers encouragement.
Understanding Your Child's Diagnosis: A guide for parents of children with childhood dementia conditions A clear, straightforward explanation of childhood dementia to help parents make sense of their child's diagnosis.
Supporting a Family Affected by Childhood Dementia: A guide for grandparents, family members & close friends A guide for grandparents, family members, and friends that explains childhood dementia in simple terms and provides practical ways to offer a family support.
Practical Healthcare Resources
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 a child's needs. It includes practical tips about collecting important information, preparing for healthcare appointments, and question prompts.
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 a child.
Doctor Appointment Checklist A comprehensive form to help parents prepare for, manage, and follow up on healthcare appointments. This resource captures essential information and helps parent 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.
The toolkit will be expanded to include:
- 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 representatives, education providers and disability services
- Video resources: Video content featuring real families sharing experiences and advice
- Grief, loss and bereavement resources
Family feedback
“How differently I would have felt then if I'd had this kind of thing to frame it all and frame what I was feeling,"
- Parent of child with dementia.
The Childhood Dementia Guide for Families draws on extensive consultations with families. During consultations, parents consistently expressed the need for emotionally supportive, practical, and accessible information and guidance on engaging with healthcare, disability and education systems.
“These resources were designed with parents, for parents," says Joanne Kershaw, Childhood Dementia Initiative Lived Experience Manager. “The feedback from parents is that these resources address some of the complex challenges they face and have experienced."
Parents who reviewed The Guide strongly endorse the trauma-informed approach taken in the resources. They identified that acknowledging trauma first creates a foundation for:
- Psychological safety: Creating a sense of safety allows parents to process information without feeling overwhelmed
- Incremental skill-building: Parents emphasised how the resources allow them to build skills at their own pace. “Right now, you don't need to have everything. You don't need to suddenly become an expert navigator of healthcare, education and disability systems." - Parent of a child with dementia
- Reclaiming agency: The rights-based approach helps parents transition from feeling like victims to empowered advocates. “You are the leader of this experience... Because sometimes we think we are followers, but we are not followers. We are the leader." - Parent of a child with dementia
- Sustainable advocacy: Resources that account for parents' emotional wellbeing enable more sustainable advocacy efforts over time “I feel like I went a bit too hard, too early... it is a marathon." - Parent of a child with dementia
