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Childhood Dementia Online Community

The Childhood Dementia Online Community is a private, hidden Facebook group, co-designed with parents to offer an accessible space for parents to connect with other families with a child or children with a dementia condition. This is a safe and supported space for all parents impacted by childhood dementia, those who are caring and those who are bereaved.

"Wow, I'm not alone. There's actually a lot of us, you know, and feeling like that sense of belonging... when you've got those families together, together we can really do things."

How it works

Step 1 - Complete the sign-up form below

You will be asked to provide your contact details and information about your connection to childhood dementia.
Step 2 - You'll receive a welcome email from us

This usually arrives within 1-2 business days. It will contain your instructions for joing the Facebook group.
Step 3. Join the Facebook Group

Read and accept the community guidelines and join the group.


Frequently asked questions

Who can join the Childhood Dementia Online Community?

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The Childhood Dementia Online Community is a safe and supported space for Australian-based parents impacted by childhood dementia, including those who are caring and those who are bereaved. It was co-designed with parents and has been set up as a private, hidden Facebook group.

Can I invite other people to join the community?

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If you know other Australian-based parents or guardians of children with dementia conditions, please share this page with them. The community will be most valuable when diverse families participate and share their experiences.

Can I join if I'm not in Australia?

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We have just launched the community and in this early phase, it is only available to Australian-based parents. We plan to expand globally in late 2025.

If you complete the form below, we will add you to our international contact list and notify you when the community becomes available in your region.

We know how important it is to make connections with other families and we appreciate your understanding and patience.

How involved do I have to be in the community?

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This is a space to connect, share, and be understood by others walking a similar path. We invite you to participate at your own pace and in ways that feel comfortable for you.

Based on parent feedback, the community will include:

  • Opportunities to connect with other families
  • Space to share both challenges and achievements
  • Resource sharing for practical support.

Who moderates the community?

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This community is moderated by a qualified social worker with extensive experience supporting children, young people, and families through grief, loss, medical diagnoses, and healthcare navigation.

We selected a professional moderator rather than a parent with lived experience of childhood dementia, to prevent adding responsibilities to families and ensure parents and guardians can focus entirely on authentic connections with others sharing similar experiences.

How do I know it's safe?

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Parents involved in the co-design of this community indicated the importance of keeping this group private and hidden from the rest of their social media activity on Facebook, to ensure this remained a safe space.

In addition, we ensure that only parents and guardians impacted by childhood dementia, who provide their information in the form below, are invited to join the community.

You can read more about how we protect your information in our privacy policy.

What if I don't use Facebook?

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Parents involved in our co-design process indicated that a Facebook group is the most accessible platform for this community. You will need to create a Facebook profile in order to access the community.

Connect with Childhood Dementia Initiative

If your family is impacted by childhood dementia, you can connect with Childhood Dementia Initiative and with other families in the ways that best suit you. Complete your details below and we'll be in touch with more information. Read about how we protect your personal information in our Privacy Policy.

Start by subscribing to our email updates

We send these about once a month, and they include news, resources, and information for the childhood dementia community.

If you'd also like to register for the Childhood Dementia Online Community, complete the following information

The Online Community is a private, hidden Facebook group, co-designed with parents to offer an accessible space for parents to connect with other families with a child or children with a dementia condition. You can read more here.

Finally, if you're interested in becoming a Childhood Dementia Advocate, complete the following information

The Childhood Dementia Advocates Program provides an opportunity for primary carers and former primary carers of children with dementia to share their stories, identify current issues and positively affect change. You can read more here.