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. 

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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. 

The need for love, touch, and closeness doesn’t disappear when dementia enters our lives - but how affection is experienced and expressed can change.

In our Ask Us Anything episodes, you send us your questions about living with dementia and we’ll answer them as honestly as we can. Nothing is off limits here!

We explore consent after a dementia diagnosis and provide practical advice for partners and families navigating this emotionally complex territory.

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ABOUT THIS EPISODE

This ‘Ask Us Anything’ episode was hosted by Jim Rogers with advice from Louise, a National Dementia Helpline Advisor at Dementia Australia.

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-still-us

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. 

When Karen was diagnosed with primary progressive aphasia, she and her husband Jonathan knew their relationship would change. What surprised them was how. "It’s just made us more tender and gentle," Karen says.   

They've become more mindful, more aware of each other's needs, and they're having conversations they never expected to have, including about consent as things evolve.   

When you hear “dementia and intimacy”, sex might be the first thing that comes to mind. But intimacy is about so much more. It's about connection, closeness, and love. And it includes the relationships beyond your romantic ones.  

“Intimacy is about a human connection, and that can be sex,” says Dr Catherine Barrett, CEO of Celebrate Ageing, “but it can also be loving your children or your grandchildren, or having other special relationships in your life”.

Karen and Jonathan share how they’re managing the changing conditions of their relationship in real-time, and Catherine outlines some of the tools and tactics she uses in workshops to help people of all ages and abilities develop the skills of love. 

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Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers and Hamish Macdonald.

ABOUT THE GUESTS 

Karen is a Dementia Australia Dementia Advocate and retired teacher, coach and facilitator. Earlier this year, Karen received a diagnosis of primary progressive aphasia (language variant frontotemporal dementia). She and her husband Jonathan speak openly about how their relationship is changing in real time. 

Dr Catherine Barrett is the CEO of Celebrate Ageing, a charity committed to combating ageism and building respect for older people. A former nurse with more than 40 years of experience working with older people, Catherine helps people of all ages and abilities develop what she calls the skills of love. 

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-still-us

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.

If you’re on North Wollongong Beach in New South Wales around sunrise, you’ll probably see David with his camera. After his daily morning swim, he likes to take photos of the sunrise – whenever he meets someone with young children, he offers to send them photos.

“This is the sunrise on the first day of your life,” he tells them to write under the pictures.

David was diagnosed with Alzheimer’s disease in 2023 and instead of withdrawing, he asked himself: How can this become a new way to help people connect?

Amanda knows about isolation too. She’s been caring for her mum, who lives with Lewy body dementia, since she was just 17. For years, she hid it; embarrassed, exhausted, carrying the weight alone.  

But eventually, she reached out for help.

David and Amanda share how they’ve built and maintained connections after a diagnosis for their own sakes, but also so they can share what they’ve learned about dementia with their communities.  

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Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers and Hamish Macdonald. 

ABOUT THE GUESTS 

Dr David Williams AM, lives in Wollongong and was diagnosed with Alzheimer’s disease in 2023 after a varied career spanning industrial chemistry, recruitment and consulting, alongside decades of community leadership. He continues to foster connection through daily swims, sunrise photography and his long-standing men’s group, believing openness about diagnosis is how you make a difference.

Amanda is a digital and ICT leader who works across complex industries, alongside caring for her mother Petronella, who lives with Lewy body dementia. Through Dementia Australia, she found community, became an advocate, and now speaks openly about asking for help as an act of love, for others and yourself. 

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-community-support

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.

Community can make all the difference when dementia enters a family. From practical help to emotional support, there are so many ways that people can stay connected.

In our Ask Us Anything episodes, you send us your questions about living with dementia and we’ll answer them as honestly as we can. Nothing is off limits here! 

We give advice on supporting people with dementia in public spaces, and ways to connect with other people in your community going through a similar experience.  

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ABOUT THIS EPISODE 

This ‘Ask Us Anything’ episode was hosted by Jim Rogers with advice from Rose, a Policy Advisor at Dementia Australia.  

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-community-support

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.  

Deanne’s seen it all – with more than 25 years’ experience in banking under her belt, she has encountered customers who have been coerced out of their own money by friends, family members and even strangers. She says it’s even more common for people living with dementia.

But when Deanne’s own father was diagnosed with dementia, the issue of financial vulnerability took an even more personal dimension.

Robert Fitzgerald AM is the Age Discrimination Commissioner for the Australian Human Rights Commission. He says that for several reasons, financial abuse of older people, including people living with dementia, is only increasing. He lays out the common patterns that lead to abuse and offers advice on protecting yourself and your loved ones after a diagnosis.

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Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers and Hamish Macdonald. 

ABOUT THE GUESTS 
Deanne is a former carer and Dementia Advocate who her father through Lewy body dementia. With nearly 25 years in banking, she has seen the impact of delayed estate planning and is passionate about encouraging early, proactive decision-making following a dementia diagnosis. 

Age Discrimination Commissioner Robert Fitzgerald AM is a respected lawyer and advocate with extensive experience across government and community sectors. He champions the rights of older people, and is working to reduce ageism, prevent abuse and strengthen protections through policy leadership and cross-sector collaboration. 

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-staying-control 

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. 

Managing money is tricky for anyone, and dementia can make it even harder. So what are the best ways to keep control and make informed choices around our finances?

In our Ask Us Anything episodes, you send us your questions about living with dementia and we’ll answer them as honestly as we can. Nothing is off limits here!

We discuss putting the right supports in place, and what to do if you’re worried someone might be taking advantage of a person living with dementia.

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ABOUT THIS EPISODE 

This ‘Ask Us Anything’ episode was hosted by Jim Rogers with advice from Rose, a Policy Advisor at Dementia Australia.

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-staying-control

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.

When Louise’s husband was diagnosed with young onset Alzheimer’s disease, she knew the day would come. What she didn’t expect was how hard it would be to find a place that could actually take him.

For Susan, the challenge was different. Her Italian-born father rarely spoke about his wartime childhood. But in residential care, something as simple as a uniform could transport him back decades in an instant.

Moving into residential care is one of the toughest decisions for many people living with dementia and their families. When is the right time to move, how do you find an appropriate place, and how do you even start the conversation?

Co-hosts Jim and Hamish talk with Louise and Susan about the reality of transitioning into residential care, the hard parts, the unexpected ones, and the small, peaceful moments that made it worthwhile.

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Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers and Hamish Macdonald. 

ABOUT THE GUESTS 

Former carer Louise’s husband Craig was diagnosed with young onset Alzheimer’s disease at 46. Navigating a system not designed for younger people, Louise founded the Think Again campaign and now raises awareness while sharing her experience supporting Craig through care.

Susan cared for her father Tony, a gentle and hardworking man who experienced moments of great distress as his dementia progressed. Drawing on her experience navigating residential care, she now advocates for greater awareness, understanding and more personalised support for people living with dementia.

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-residential-care

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. 

Moving into residential care is never an easy decision, but it's about finding support, safety and dignity along the way.

In our Ask Us Anything episodes, you send us your questions about living with dementia and we’ll answer them as honestly as we can. Nothing is off limits here!

We discuss how to navigate daily routines when your loved one stops wanting to shower, and residential care for people with young onset dementia.

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ABOUT THIS EPISODE 

This ‘Ask Us Anything’ episode was hosted by Jim Rogers with advice from Jane, a Senior Family Engagement Counsellor at Dementia Australia.  

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-residential-care

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.

Tully was only 15 when her mother was diagnosed with young onset dementia. She figured nobody at school would understand.

John’s experience has, thankfully, been quite different. He’s 25 now, and cares for his grandmother who lives with dementia. Caring for her has been so rewarding for him that he’s now a professional support worker and studying to be a counsellor.

Caring for a loved one living with dementia always has its challenges, and a sense of isolation is a common one. But for younger carers, that isolation can be even more profound.

So few people in their teens or early twenties have done it, so it can feel like nobody around you understands the struggle.

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Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers and Hamish Macdonald.

ABOUT THE GUESTS

Tully Smyth is a writer, content creator and Dementia Australia Ambassador who was just 15 when her mother was diagnosed with young onset dementia, an experience she now shares as an advocate for other young carers.

John has been caring for loved ones since the age of five and is now a professional support worker studying to become a counsellor. John cares for his Mum as well as his Nonna, who lives with Parkinson’s disease and dementia.

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-big-responsibilities

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. 

Caring for a parent with dementia in your teens,  20s or 30s brings challenges most people don’t see.

In our Ask Us Anything episodes, you send us your questions about living with dementia and we’ll answer them as honestly as we can. Nothing is off limits here!

We examine the pressures young carers face and share advice on managing the juggle.

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ABOUT THIS EPISODE

This ‘Ask Us Anything’ episode was hosted by Jim Rogers with advice from Jane, a Senior Family Counsellor at Dementia Australia.

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-big-responsibilities

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.