Show Notes
Dementia doesn’t only affect the elderly. Childhood dementia is an umbrella term for more than 100 rare genetic disorders and one in every 2,900 babies is born with one. There is currently no cure.
For parents Rachel and Eli, awareness and research funding are the lifeline.
Megan Maack, is the founder of the Childhood Dementia Initiative and a parent of two children with childhood dementia. She’s working to connect families, improve healthcare, and push for the research that could one day change everything.
This episode is about grief, love, and refusing to give up.
More from Hold the Moment
It’s time to talk about dementia... at the Sydney Opera House. Jim Rogers and Hamish Macdonald welcome a panel of special guests and a live audience to talk in-depth about dementia. Actor Jessica Redmayne, researcher Dr Anita Goh, and Dementia Advocate Heather Cooper share their unique perspectives on the disease. And Mark Seymour from Hunters & Collectors plays his song, ‘Classrooms and Kitchens.’
Can we reduce the risk of dementia? The evidence behind brain-healthy habits.
What actually protects your brain .. and what’s just myth? Dr Suraj Samtani, a clinical psychologist at UNSW’s Centre for Healthy Brain Ageing, has spent six years researching this question. Spoiler: it’s not just crosswords. Janet, in her 70s and living with Alzheimer’s, is living proof! She runs creative writing workshops for other people with dementia, turning self-expression into a tool for wellbeing and connection. Dr Suraj’s work on reminiscence therapy, including his collaboration with Chris Hemsworth’s father for a National Geographic documentary, offers practical tools anyone can use.
What carers need to know about working with health professionals in the final stages.
Betsy had no idea the end of her husband Peter’s life could be so peaceful. Peter lived with young onset Alzheimer’s disease, and when the time came, he was clear about what he wanted: to stay home as long as possible and not have his life prolonged beyond quality. Palliative care gave them both room to breathe. Jayne, Nightingale Program Manager at Dementia Australia, reframes palliative care entirely: not as something that happens at the end, but as a way of living well from the moment of diagnosis.