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‘I felt very lonely after my dementia diagnosis’ – Groundbreaking Australian-first podcast launched

Dementia Australia 3 mins read

Dementia Australia has today released an Australian-first podcast that aims to alleviate the loneliness and social isolation people living with dementia experience. 

The podcast was developed by people living with dementia and is hosted by Jim Rogers, who lives with younger onset dementia and journalist Hamish Macdonald, whose father has dementia with Lewy bodies and Parkinson’s. 

Throughout seven episodes Jim and Hamish explore with people living with dementia, carers and health experts the experiences of being diagnosed, managing sleep disturbance and hallucinations, travelling, staying active and managing relationships.   

Their stories are honest, raw, sometimes harrowing, heartwarming and at times heartbreaking. 

“I felt very lonely after my dementia diagnosis. It’s pretty scary, scary territory,” Mr Rogers said. 

“Being able to hear about others’ experiences in a positive way on a podcast like this would have been an amazing thing for me when I was diagnosed.” 

Survey results released today by Dementia Australia back the need for the podcast, finding a third of respondents suggest people avoid or exclude their loved one with dementia, while nearly half the survey respondents perceive people don’t keep in touch as they used to.  

“As a journalist I’ve met many people living with dementia, but all of this hit close to home a few years ago when my dad was diagnosed with dementia,” Mr Macdonald said.  

“The stories shared by all the people living with dementia involved will help to break down barriers that discourage people seeking help and reduce the impact of social isolation. Receiving news of a diagnosis is huge and at every step of this project I’ve been in awe of all of the people living with dementia willing to share about their often intensely personal experiences to help others.  

Jim and Hamish are joined on the podcast by Heather Cooper, Catherine Daskalakis, Pam Eade, Juanita Hughes, Ann Pietsch, Anthony Pollock and Kevyn Morris – who all live with different forms of dementia, and Dom O’Leary, who cared for her father with dementia. They are also joined by Professor Nola Ries, from the Faculty of Law at the University of Technology Sydney and co-founder of the Dementia Law Network, Associate Professor Stephanie Rainey-Smith, a neuroscientist from Murdoch University and Kristin, an Advisor from the National Dementia Helpline.  

Dementia Australia CEO Professor Tanya Buchanan said: “In Hold the Moment, you’ll share the podcasters’ struggles and triumphs as they rise to the challenges that come with a diagnosis of dementia.   

“It is a powerful example of people continuing to live well while experiencing daunting changes and upheavals to their lives. 

“I want to thank each and every person who has contributed to the making of the podcast and acknowledge the support of the Australian Government. They all have been so generous in sharing their experiences and expertise in order to help others.  

“I’m also so delighted today to welcome Hamish Macdonald as an Ambassador for Dementia Australia. 

“Hamish has been extraordinary in his support for Dementia Australia helping us to raise awareness about dementia and our organisation.” 

Follow Hold the Moment wherever you listen to podcasts. Listen to the Hold the Moment trailer here www.dementia.org.au/podcast. 

-Ends- 

Note to Editors: 

Hold the Moment is produced by Deadset Studios. Dementia Australia acknowledges and appreciates the support of the Australian Government for this initiative. 

Episodes one and two of the seven-part series are available from today, with further episodes dropping weekly, in the lead-up to Dementia Action Week, which is from 16-22 September.  

Dementia Australia is the source of trusted information, education and services for the estimated more than 421,000 Australians living with dementia, and the more than 1.6 million people involved in their care. We advocate for positive change and support vital research. We are here to support people impacted by dementia, and to enable them to live as well as possible. No matter how you are impacted by dementia or who you are, we are here for you. 

For support, please contact the National Dementia Helpline on 1800 100 500. An interpreter service is available. The National Dementia Helpline is funded by the Australian Government. People looking for information can also visit dementia.org.au  

Media contacts: Stephen O’Connell Media & Communications Advisor, 0402 284 257, Stephen.OConnell@dementia.org.au | Catherine McCarthy Media & Communications Advisor, 0466 796 201, Catherine.McCarthy@dementia.org.au 

When talking or writing about dementia please refer to Dementia-Friendly Language Guidelines. 

 

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