Childhood Dementia Initiative and the Rare Care Centre are inviting Western Australian families to attend a special consultation.
When and where
Date: Wednesday 27 March 2024
Time: 9.00am – 12.00pm AWST
Venue: QT Perth, 133 Murray St, Perth .
Lunch will be provided
The long table format
The Perth Long Table: Exploring the Issues in Health will focus on families’ experiences accessing state-specific health care and support services. The goal is to unearth challenges and opportunities for change.
The ‘long table’ method allows for free-flowing, frank conversation. Facilitators will share 3 overarching questions, however, the content of the session will be very much up to participants.
“This consultation centres on really listening to families affected by childhood dementia and being led by families. Its unique format allows participants to cover the topics that matter most to them. It also gives families the chance to have an open conversation with other families,” says Joanne Kershaw, Manager, Lived Experience, at Childhood Dementia Initiative.
Present on the day to listen and learn will be key stakeholders including leading researchers and professionals working across paediatric and adult settings, the NDIS, education, allied health, clinical nursing and palliative care.
Who should register
We are hoping to hear from a broad range of families who are based in Western Australia including:
- Families who love a child or children alive today with a childhood dementia condition
- Bereaved families
- First Nations families
- Families from metropolitan, regional and rural locations
- Culturally and linguistically diverse families
- Families who have recently received a diagnosis
- Families in post-diagnostic care
- Those whose child(ren) is/are transitioning from paediatric to adult services
- Families with experience accessing clinical trials
Not sure if your child’s condition is considered a childhood dementia? There are over 100 rare and ultra-rare neurodegenerative genetic conditions currently identified as causing childhood dementia. You can see a list of these conditions here.
Research findings
Findings will be published in a report and add to emerging and vital research on families’ experiences.
“Research and consultation of this kind are vital to create change. Until now, there has been very little research or data collected on families impacted by childhood dementia. It’s really important that we document and share the realities and challenges that families experience, says Kershaw.
How do I get involved?
Please register here: https://events.humanitix.com/childhood-dementia-the-long-table
You can also let us know of your interest to be involved by return email to joanne@childhooddementia.org or call/text 0449 007 217.
Any further questions?
Please do not hesitate to contact Joanne Kershaw, Manager, Lived Experience at Childhood Dementia Initiative on joanne@childhooddementia.org or call/text 0449 007 217 if you have any further questions about this important opportunity.
If you would like to learn more about these or other future consultation opportunities, please join the Family Advocates Program to connect in to a range of opportunities to contribute to change.
