Hold the Moment

As dementia progresses, the way people express themselves can change, sometimes in subtle ways and sometimes more dramatically.  

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 offer practical and compassionate strategies for people struggling with evening routines, and for when a loved one’s language reverts to mother tongue.  

 

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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-me

 

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 dementia alters how you express yourself, what you like, even how your senses work... what does it really mean to still be yourself after a diagnosis?

Gwenda’s been living with behavioural variant frontotemporal dementia since 2012, and yes, a lot has changed. Her sense of smell is different now. She’s recently moved into a residential aged care community. She lives day-to-day with a progressive neurological condition.

But here’s the thing: Gwenda is also living some of the best years of her life.

A fierce dementia advocate, and a woman who refuses to be flattened by assumptions, Gwenda is adamant that a dementia diagnosis doesn’t define who you are, and that there’s no single way to “do” dementia.

“To assume that somebody living with dementia isn’t meeting the norms is about you not getting to know them,” Gwenda says. “It’s your problem, not theirs.”

Gwenda sits down with hosts Jim and Hamish to talk frankly about identity, adaptation and why joy hasn’t disappeared from her life, it’s simply changed shape.

They explore how carers and families can better understand the deeply individual ways dementia shows up and how curiosity, rather than fear, can transform relationships.

 

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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

Gwenda is a proud Palawa woman, Dementia Australia Dementia Advocate and former member of the Aged Care Council of Elders. Diagnosed with behavioural variant frontotemporal dementia in 2012, she has spent more than a decade challenging the stigma that often accompanies 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 via the Dementia Australia website.

 

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 acknowledges and appreciates the support of the Australian Government for this initiative.

Dementia is now Australia's leading cause of death and yet the conversations that matter most are still the hardest to have. Hold the Moment returns for a third season to change that.

Co-hosted by Jim Rogers, who is living with young onset Alzheimer's disease, and Hamish Macdonald, a leading journalist who cared for his father through Lewy Body dementia and Parkinson's, the show brings the voices of people living with dementia and those who love them into the open. Real people. Hard questions. No filter.

Series 3 goes further than ever before, into the risk of financial abuse, the isolation faced by young carers, the heartbreak and hope of childhood dementia, and the surprisingly peaceful possibility of palliative care. Jim shares how his own condition has progressed since Series 2, and both hosts sit with guests whose experiences will challenge, move, and inform anyone touched by this disease.

Alongside the 10 main episodes, bonus Ask Us Anything episodes put listener questions directly to experts, covering everything from consent and intimacy to showering routines and residential care. Nothing is off limits. 

Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios.

 

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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.

NEED SUPPORT?

Contact the National Dementia Helpline: 1800 100 500. Available 24 hours a day, 7 days a week - funded by the Australian Government.

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 Kath who lives with dementia became confused inside a public toilet, her husband Bob knew something had to change. 

What started as one small fix in the tiny coastal town of Tumby Bay, South Australia, soon grew into action by the local council — and sparked a ripple effect reaching communities far beyond their town. 

No one can make big changes on their own. Dementia Australia’s National Manager Dementia-Friendly Communities Belinda Curtis explains how small actions can lead to lasting change and why connection really matters when it comes to assisting those living with a dementia diagnosis. 

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Hold The Moment is a podcast from Dementia Australia, produced by Deadset Studios and hosted by Jim Rogers. Follow Dementia Australia on Instagram and find support resources online. Dementia Australia’s Dementia-Friendly Communities program informs and supports people who want to collaborate with people living with dementia to create communities where everyone can participate.   

 

This episode was produced by Amelia Navascues 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.

So much changes when someone you love is diagnosed with dementia and often the most difficult adjustment can be coming to terms with how it affects your relationship. 

You might still be parent-and-child, romantic partners, siblings, but you’ll also have to step into a new role entirely as a carer.  

For Col, this feels like ‘taking his turn’. His wife Shirley took on much of the caring work when they were raising kids together, and now Col and the kids are looking after her.  

For Sanna, who cared for her mother, the relationship shift was much more dramatic. After being diagnosed, Sanna’s mother didn’t recognise her at all and it looked, for a little while, like their connection might’ve disappeared altogether... 

Dementia changes things and it will change your relationship with the person you’re caring for – but you can take steps to ease the change for both of you.  

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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 Facebook and Instagram or find support resources on our website. 

This episode was produced by Gia Moylan and Liam Riordan, with sound design by Ryan Pemberton. The executive producers are Gia Moylan 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.