Hold the Moment

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. 

  

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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-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.

 

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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. 

 

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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.