Childhood Dementia Project Echo® Community of Practice
A place for health and 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.
Our goal is to support and empower a range of health professionals and service providers to give optimal care to children who have one of the genetic childhood dementia disorders that cause progressive neurocognitive decline.
We use the Project ECHO® (Extension for Community Healthcare Outcomes) model. This is a trusted collaborative model of education and care management used globally in Communities of Practice.
Why join
- Professional development and education
- Access emerging evidence-based tools and resources
- A chance to connect and collaborate with experts and peers
- You’ll contribute to a world-first knowledgebank that will improve quality of life for children with dementia globally
- It’s free, online, and requires just one hour of your time every second month
“I can’t recommend joining a Community of Practice more. It’s been such a source of support and learning for me, and I’ve got a network now that I not only draw on but can contribute to as well.”
“For me, there’s nothing like speaking with people with first-hand knowledge in this area. And where am I going to find them?”
More information
Session program
BEHAVIOURAL CHANGES IN CHILDREN WITH DEMENTIA
Thursday 5 March 2025
Time: 1 pm AEDT (GMT+11)
Speakers: Dementia Support Australia (DSA)
Content: This session will focus on management strategies, services and resources for behavioural changes often associated with childhood dementia.
Register now: Further information and Zoom links will be sent to you once you join the Community of Practice using the form below.
PSYCHOSOCIAL NEEDS AND SUPPORT FOR THE WHOLE FAMILY
Thursday 1 May 2025
Time: 1 pm AEDT (GMT+11)
Speakers: Case discussion: Azhani Amiruddin, Clinical Psychologist Adolescent and Young Adult Hospice (AYAH)
Content: This session will feature the presentation of early findings from research into the psychosocial impacts of childhood dementia. The case discussion will look at the supports put in place for a teenager living with childhood dementia and their family.
Register now: Further information and Zoom links will be sent to you once you join the Community of Practice using the form below.
TOPIC TO BE CONFIRMED
Thursday 26 June 2025
Time: 1 pm AEDT (GMT+11)
Speakers: To be confirmed.
Content: To be confirmed.
Register now: Further information and Zoom links will be sent to you once you join the Community of Practice using the form below.
TOPIC TO BE CONFIRMED
Thursday 21 August 2025
Time: 1 pm AEDT (GMT+11)
Speakers: To be confirmed.
Content: To be confirmed.
Register now: Further information and Zoom links will be sent to you once you join the Community of Practice using the form below.
TOPIC TO BE CONFIRMED
Thursday 16 October 2025
Time: 1 pm AEDT (GMT+11)
Speakers: To be confirmed.
Content: To be confirmed.
Register now: Further information and Zoom links will be sent to you once you join the Community of Practice using the form below.
Questions and answers
What’s involved?
The Childhood Dementia Community of Practice requires just one hour of your time every second month. Each one-hour on-line session will consist of a brief presentation from an expert followed by a participant-led case presentation with facilitated discussion. Following each session, participants will receive a summary and links to any evidence based resources referenced or discussed. You do not need to undertake preparation before a session, however, you may want to think about questions or knowledge you have related to the topic covered. It’s free to join the Childhood Dementia Community of Practice.
Who can join the Childhood Dementia Commuity of Practice?
This is a professional learning community for healthcare providers and practitioners involved in supporting children with childhood dementia disorders.
While we deeply value and recognise families as the foremost experts in their children's care, this particular community is specifically designed as a confidential space for medical professionals, clinicians, and allied health providers to engage in clinical discussions and professional development. Other valuable opportunities and resources exist specifically to support and connect families affected by childhood dementia. Please visit our page, For Families, for more information.
Can this be used for my Continuing Professional Development (CPD) requirements?
You may be able to self record this activity to count towards your Continuing Professional Development (CPD) requirements. You’ll need to speak with your specific institution.
Can I join if I’m not in Australia?
You are welcome to join if you are not in Australia.. Everyone's experience and knowledge is valuable. Please be aware that this Community of Practice is based in Australia and scheduled in AEDT and AEST time (GMT +11:00 and GMT +10:00).
I’m not sure if I can really contribute…
If you’ve worked with a child with dementia, you already have vital experience and insights to share. There are no standards in care and best practice for your peers to draw on. Even the challenges you faced will be helpful for others to learn from. As this involves collaborative knowledge sharing, sessions are professionally facilitated and every effort is made to ensure participants have a welcoming and inclusive experience.
Am I working with a child with a childhood dementia disorder?
There are over 140 genetic conditions that have so far been identified as causing childhood dementia. A complete list of these disorders is here. Some of the more common types of childhood dementia are Rett Syndrome, Nonketotic hyperglycinemia, Vanishing white matter disease, MPS III (Sanfilippo syndrome), Neuronal Ceroid Lipofuscinoses (NCLs or Batten Disease) and Zellweger Spectrum Disorder.
Will I need Zoom or another platform?
Our initial sessions will be conducted on Zoom. To ensure you have reminders and a link to upcoming sessions, please register below.
Register now for the Childhood Dementia Community of Practice
Fill in this form and we’ll keep you updated on upcoming sessions, how to join them and new resources and tools.
