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Childhood Dementia Parent Knowledge Network
A practical knowledge exchange for parents of children with childhood dementia conditions
What is the Childhood Dementia Parent Knowledge Network?
The Parent Knowledge Network is a free, online program for all parents and carers of children with childhood dementia in Australia.
It’s where parents can share their practical experiences for daily life, changing needs, and managing different systems (like health, disability and education). It gives parents a place to learn and share what they know now, and wish someone had told them.
The Parent Knowledge Network brings parents together for a monthly online session that:
- Covers a single practical topic chosen by families
- Is structured and professionally facilitated
- Focuses on real-world problem-solving
- Is recorded and made available for all families to access
You can join the program by filling in the form below.
What it involves
Each month, a 60-minute live online session focuses on a topic selected by families. See upcoming sessions here. You may also like to read the Parent Knowledge Network Community Guidelines.
- A defined topic focus
- Questions submitted by families in advance
- A Lead Parent/s sharing their experiences
- Facilitated parent discussion and practical insights
- Join live
- Engage as much or as little as is right for you
- Submit questions before the session, so you get answers even if you can’t attend live
- Access summaries or practical tools that are shared
The Parent Knowledge Network is structured and focuses on practical knowledge. For more informal connection with other families, you may like to join the Childhood Dementia Online Community.
Who can join the Parent Knowledge Network?
TheParent Knowledge Network is open to all dads, mums and primary carers of children, young people or adults diagnosed with childhood dementia conditions in Australia.
This includes parents and primary carers who are:
- Caring for a child or children with a childhood dementia condition today. This includes if your child is a teenager or adult.
- Bereaved
- Both caring and bereaved
- Newly diagnosed or many years post-diagnosis
Not sure if your child’s condition falls under the childhood dementia umbrella? See the full list of conditions that cause childhood dementia.
Upcoming sessions
After the diagnosis
When: Wednesday 29 April 6:30 pm AEST
Topic: A childhood dementia diagnosis is devastating and often unexpected. This session brings together parents who've been there to share what they wish they'd known and how they found their footing. Come with your questions, or just come to listen.
Working with Support Workers
When: Tuesday 26 May 12 pm AEST
Topic: Finding the right support worker can be transformative, but getting there is rarely straightforward. This session brings together parents to share their experiences of finding good people, navigating the unique dynamic of having someone in your home while being their employer, and the very real burden of supporting their emotional wellbeing.
Isolation and connection
When: Thursday 25 June 6:30 pm AEST
Topic: Having a child with a rare, incurable condition can be profoundly isolating in ways that are hard to explain to people who haven't lived it. Your world and your community can look very different to what it once did. This session brings together parents to share their experiences of navigating isolation, changing relationships and finding genuine connection.
Palliative care
When: Tuesday 28 July 12 pm AEST
Topic: Parents can have an understandably strong reaction to the words ‘palliative care’. However, for many families, it can be one of the most important supports they found. This session brings together parents to share their thoughts, fears, questions and learnings about palliative care.
Session recordings, summaries and resources
COMING SOON. We'll share summaries, recordings of specific parts of sessions, and useful resources here after each session.
Questions and answers about the Childhood Dementia Parent Knowledge Network
What if I can’t make a session?
That’s no problem. We invite you to take part when and how suits you.
We will provide resources and summaries after each session so that you can benefit from the knowledge parents share. You can also submit questions before each session, so you’ll get answers even if you can’t attend.
Will I need Zoom or another platform? Can I join from my phone?
Our initial sessions will be conducted on Zoom. To ensure you have reminders and a link to upcoming sessions, please register
You can join from your phone. You may like to download the Zoom app to your phone, or you can simply click on the link and join the meeting.
Who can join the program?
The Parent Knowledge Network is open to all dads, mums and primary carers of children, young people or adults diagnosed with childhood dementia conditions in Australia.
This includes parents and primary carers who are:
- Caring for a child or children with a childhood dementia condition today. This includes if your child is a teenager or adult.
- Bereaved
- Both caring and bereaved
- Newly diagnosed or many years post-diagnosis
Not sure if your child’s condition falls under the childhood dementia umbrella? See the full list of conditions that cause childhood dementia.
I'm bereaved. Is this program open to me?
Yes. Bereaved parents and primary carers are an important part of this community. Some families are both bereaved and currently caring for a child or children. Your experience and knowledge are valued here. You can choose how and when to engage.
Is this program only for parents, or can other primary carers join?
All parents and primary carers of children with childhood dementia conditions are welcome, including grandparents and others in a caring role. If you’re unsure, please reach out at: services@childhooddementia.org
My child hasn’t been formally diagnosed yet. Can I still join?
This group is a space held by and for families who are living with a confirmed childhood dementia condition. Keeping that shared foundation is what makes the knowledge exchange so powerful as everyone in the room understands the reality of that diagnosis.
If you're in the pre-diagnosis or early stages, we see you and we know this can be extremely challenging. Childhood Dementia Initiative is actively exploring a dedicated opportunity for families at this stage. Please reach out to us directly so we can make sure you're connected to the right support in the meantime at services@childhooddementia.org
You can see a list of the conditions that cause childhood dementia here.
My first language isn’t English. Is this accessible for me?
We are working to make this easy to join. If you have specific needs or questions, please get in touch with us: services@childhooddementia.org
Where do I find guidelines for participants?
Will sessions be facilitated?
Yes, each session has a professional facilitator who is there to help the conversation flow, draw out quieter voices, and keep things on track.
Do I have to share my own experiences or speak up in sessions?
No. There’s no pressure to contribute or speak up. You can watch, listen, or read. When you’re ready to share knowledge or ask questions, there will be space for that — but it’s always your choice.
What if I’m not sure if I have any useful knowledge to contribute?
The Parent Knowledge Network focuses on real life when children are diagnosed with childhood dementia conditions. You’re not required to be a formal or technical expert on anything. Your experience as a parent or primary carer is all you need to be a valuable participant, or listener if you prefer — there’s never any pressure to speak. On some topics you may like to share your insights. On others, you may like to listen and learn. It’s up to you.
When this Network was co-designed with families, parents reported that it’s often other parents who give them the most valuable information on practical daily management, problem-solving, systems navigation, real-world experience with treatments and equipment, local information, and unfiltered honesty about challenges.
Many parents share that they don’t feel like experts and that they’re learning as they go. One described it as ‘stumbling in the dark’. The Parent Knowledge Network is to help each other learn, and to share the information you now have.
Can I invite other people to join the Network?
If you know other Australian-based parents or primary carers of children diagnosed with dementia conditions, please share this page with them. A range of families participating and sharing their experiences will ensure the program is helpful for more families.
How is this different from the Childhood Dementia Online Community?
The Childhood Dementia Online Community is an informal, Facebook group space for peer conversation and connection.
The Parent Knowledge Network is a structured program, focused on learning and sharing practical knowledge, and with sessions held monthly.
How was the Parent Knowledge Network developed? What did parents share during its co-design and will you seek ongoing feedback?
The Parent Knowledge Network was co-designed with parents who told us they value:
- Practical knowledge over general emotional support
- Flexibility
- Being able to both learn and contribute, when it suits them, on the topics in which they have interest or knowledge
- Professional facilitation to keep discussions focused
- Minimal administrative burden
The Parent Knowledge Network was designed around these principles and we will evolve and improve the program based on parents’ feedback.
