Hold the Moment

Most of us tend to think about keeping our bodies healthy and the importance around that, but what about our brains?
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 explain the research behind dementia risk reduction and explore whether mild cognitive impairment always leads to dementia.
If you’d like personalised support, you can contact the National Dementia Helpline on 1800 100 500. You can call 24 hours a day, or request a callback, start a webchat, or send an email with whatever is on your mind.

Janet always wanted to be a writer, but life got in the way, until a diagnosis of  Alzheimer’s disease changed everything. 
Janet began writing again, and it’s become a source of silence, self-reflection and even a means of preserving her brain health for as long as possible. Now, she’s running writing workshops for other people living with dementia, including people who were dragged along at first but came to the second session with a stack of fresh stories. 
Dr Suraj Samtani, a clinical psychologist and researcher at UNSW, says that alongside engaging mental activities, social interaction is one of the most powerful tools we have when it comes to protecting our brains.
Jim and Hamish unpack Dr Suraj’s research and his work on the National Geographic documentary, A Road Trip to Remember, in which Suraj helps actor Chris Hemsworth and his father undergo ‘reminiscence therapy.
 
+++ 
 
Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers and Hamish Macdonald. 
 
ABOUT THE GUESTS 
Janet worked as a teacher, then in women’s education, before completing a PhD in creative writing in her late 50s. Today, Janet lives with Alzheimer’s disease and runs creative writing workshops for other people living with dementia.
Dr Suraj Samtani is a clinical psychologist and researcher at UNSW’s Centre for Healthy Brain Ageing, whose research explores the link between social connection and brin health.  
 
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-brain-health
 
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.

Future Planning means thinking ahead about care, comfort and the kind of support you want as dementia progresses.
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 ways we can empower carers to share their insights as they advocate for their loved ones in palliative care.
If you’d like personalised support you can contact the National Dementia Helpline on 1800 100 500. You can call 24 hours a day, or request a callback, start a webchat, or send an email with whatever is on your mind.  
 
+++ 
 
ABOUT THIS EPISODE 
This ‘Ask Us Anything’ episode was hosted by Jim Rogers with advice from Jayne, Nightingale Program Manager, 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-planning-ahead
 
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

Betsy had no idea that the end of life could be so... peaceful. Her husband, Peter, lived with young onset Alzheimer’s disease, and the pair of them didn’t want to even think about the end of his life when he was diagnosed.
But as Peter’s condition worsened, he made his desires clear: he wanted to stay at home for as long as possible, and he didn't want his life prolonged when quality was compromised.
When they moved to palliative care, everything changed. "The noise went away, the fear went away. There was grief, but lots of love. There was room to breathe." 
Palliative care was central to the peace Betsy and Peter experienced at the end of his life, but managing that time can begin much earlier if you want it to. "Palliative care goes from the point of diagnosis," says Jayne, Nightingale Program Manager at Dementia Australia. "It's not about morphine at end-of-life. It's about living well, having good quality of life, having choice."
Betsy shares how she and Peter made palliative care their own, and Jayne invites you to start thinking and talking about palliative care early, so it can be exactly what you need when the time comes. 
 
+++ 
 
Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers and Hamish Macdonald. 
  
ABOUT THE GUESTS 
Betsy is an Advocate and former carer. An engineer by background, Betsy stepped away from corporate life following her husband Peter's diagnosis with young onset Alzheimer's disease. Peter passed away in palliative care in 2024, on their 25th wedding anniversary. Betsy now works in food relief charity.
Jayne is Nightingale Program Manager at Dementia Australia. She provides national leadership in specialist palliative and dementia care, with a background as a Clinical Nurse Consultant and extensive experience across aged care, community, and person-centred practice. 
  
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-planning-ahead
  
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.

Making decisions is part of staying independent, but dementia can make that a challenge at times. Supported decision making can help people stay in control with guidance and respect.
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 how to manage overwhelming medical appointments and put supported decision making into practice. 
  
+++ 
  
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-still-deciding
  
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.

Ann is fiercely independent and has spent many years working in health and advocating for people living with dementia. Since her own diagnosis, that work has taken on a new dimension: figuring out what it means to keep making decisions for herself.
Her husband Timothy is learning alongside her. The balance they've struck is constant and shifting.
"There'll be days where I'm wearing different earrings, and Timothy will say, 'Do you realise you've got one of these and one of those?' And so I'll go and change one of the earrings, and perhaps be a bit terse, but in actual fact, I'm really pleased that he's telling me."
A dementia diagnosis doesn't end your right or your ability to make decisions. But it does change what decision-making support you might need, and it can shift depending on the decision, the day, the stage of dementia and other factors.
In this episode, Dr Craig Sinclair, a Senior Research Fellow at UNSW who specialises in the field, unpacks how supported decision-making works both legally and in practice, and why the right support at the right time makes all the difference.   
  
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-deciding
  
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.

Childhood dementia is something few have heard of, and even fewer understand. But for the families facing it every moment matters. 
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 shine a light on what happens after a diagnosis and how we can better support the families living with it every day.
 
+++
 
ABOUT THIS EPISODE
This ‘Ask Us Anything’ episode was hosted by Jim Rogers with advice from Meg Maack, CEO and Founder of Childhood Dementia Initiative.
 
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. 

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. 

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.
 
+++
 
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. 
 
+++ 
 
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.