Childhood Dementia: Holding Onto Hope

Isolation can be a common experience when living with dementia or caring for a loved one. If the people around you don’t understand dementia, they might withdraw, they might not know how to be there for you... This experience is amplified for families faced with childhood dementia. Yes, even children live with dementia. ‘Childhood dementia’ is an umbrella term for more than 100 rare genetic disorders that 1 in every 2,900 babies are born with. There is currently no cure for childhood dementia. For parents Rachel and Eli, spreading awareness and helping to secure research funding are critical sources of hope. Megan Maack, whose children also live with dementia, founded Childhood Dementia Initiative to improve recognition, health care, support and research. She is helping parents like Rachel and Eli connect with other families in similar circumstances and advocate for change.    +++   Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers and Hamish Macdonald. For support, you can contact the National Dementia Helpline on 1800 100 500 (24 hours a day, seven days a week). The National Dementia Helpline is funded by the Australian Government. Follow Dementia Australia on Instagram and find support resources online. Childhood Dementia resources and support can be found at www.childhooddementia.org This episode was produced by Luci McAfee and Liam Riordan, with sound design by Slade Gibson. The executive producers are Sarah Dabro and Kellie Riordan. Production manager is Ann Chesterman. Dementia Australia and Deadset Studios acknowledge the Traditional Owners of Country throughout Australia and recognise their continuing connection to lands, waters and communities. We pay our respect to their Elders past and present, and extend that respect to all Aboriginal and Torres Strait Islander peoples today. Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers and Hamish Macdonald.   ABOUT THE GUESTS Rachel and Elijah are advocates raising awareness of childhood dementia through their experience with their own daughter Hannah. Based in regional NSW, they share the realities of caring, grief and adaptation. Working with the Childhood Dementia Initiative, they help create resources and connection for families navigating rare and often isolating diagnoses. Megan Maack is CEO and founder of the Childhood Dementia Initiative, leading world-first action to recognise childhood dementia. A mother of two children with Sanfilippo syndrome, she combines lived and professional expertise to drive change across research, healthcare and policy, improving outcomes for children and families in Australia and globally.   NEED SUPPORT? Contact the National Dementia Helpline: 1800 100 500. Available 24 hours a day, 7 days a week - funded by the Australian Government.   SERVICES & RESOURCES Find links, services and information from this episode → https://www.dementia.org.au/episode-childhood-dementia   EPISODE CREDITS Produced by Liam Riordan | Sound design by Slade Gibson | Executive producers: Sarah Dabro and Kellie Riordan | Production manager: Ann Chesterman   FOLLOW DEMENTIA AUSTRALIA Instagram | Facebook | LinkedIn   Dementia Australia and Deadset Studios acknowledge the Traditional Owners of Country throughout Australia and recognise their continuing connection to lands, waters and communities. We pay our respect to their Elders past and present and extend that respect to all Aboriginal and Torres Strait Islander peoples today. Dementia Australia acknowledges and appreciates the support of the Australian Government for this initiative.