Our progress in 2023
Research
A new wave of research is underway
Care
Finally, the voices of families are being heard
Advocacy
Policymakers are starting to listen & respond
VIDEO OVERVIEW
Childhood Dementia Initiative’s CEO, Megan Maack, has shared in this video some of the enormous strides made for children with dementia in 2023. She covers the organisation’s 3 strategic focus areas: research, care and advocacy.
RESEARCH
Ultimate goal: treatments and cures.
The problem: To date research into childhood dementia has been inadequate, fragmented and grossly underfunded. As a result, all children living with dementia today will die; half before they’re 10.
Childhood Dementia Initiative brings all of the disorders that cause childhood dementia together under one umbrella to accelerate research and make it more efficient.
In 2023
- In Australia alone, there were 12 research projects underway that focus on multiple childhood dementia disorders concurrently.
- In 2023, research was published in the esteemed international journal, Brain, that revealed the extent of childhood dementia and just how big a problem it is.
- The Childhood Dementia Research Alliance grew from 120 to almost 500 researchers. Our in-person Childhood Dementia Research symposium, as well as a research webinar series, facilitated collaboration and knowledge sharing across the research community.
CARE
Ultimate goal: equitable access to quality care.
The problem: The impact of caring for a child (or children) with dementia is immense. Families tell us that systems of care and support are letting them down. Families’ experiences, however, have not been investigated and understood. Nothing can change without information on what’s not working and what families need.
Childhood Dementia Initiative is driving a new evidence base and data on families’ experiences and what they need. We’re listening to families and we’re amplifying their voices.
In 2023
- We partnered on a groundbreaking study that looked at the lived experience of families affected by childhood dementia and their interactions with care and support services. The report was titled ‘We don’t fit’ because that was the consistent message from families: they don’t fit within the established systems of health, disability and social care, and they are constantly battling for care and support their kids so desperately need.
- We worked with researchers at UNSW to begin to document the psychosocial impacts on families globally. This research confirmed that families globally experience significant gaps in quality care and support, and are shouldering this burden while simultaneously grieving for their children.
- We partnered with Alzheimers Scotland to enable them to extend services to children that they already provide to adults with dementia. We also continued working with peak Australian dementia organisations in 2023.
- We finished the year co-hosting roundtables with NSW Health to deeply listen to families and better understand challenges they face.
ADVOCACY
Ultimate goal: childhood dementia is a health policy priority.
The problem: Awareness of childhood dementia and its immense impact is low and children have been excluded from dementia policies, research funding and services.
Childhood Dementia Initiative drives greater awareness and calls on governments to lead the way and ensure that children with dementia get the care, support and therapies they so desperately need.In 2023
- The Scottish Government became the first in the world to include children in their national dementia policy. We’re looking forward to the Australian Government following suit when the National Dementia Action Plan is released in 2024.
- We generated unprecedented global media coverage reaching millions of people. This included finishing the year with a great 7.30 Report story. Our social media following helped us again reach millions of people.
- Our annual FACE it awareness campaign on Childhood Dementia Day was the biggest yet. Childhood dementia day was even acknowledged in the Federal Parliament here in Australia.
- Our Family Advocates program grew to over 70 actively involved families, who generously share their experiences with policymakers, researchers and the media, to generate the changes that are really needed.
