Life after a dementia diagnosis – support and referrals to services are key
The first episode in Dementia Australia’s Hold the Moment podcast series explores the experience of receiving a dementia diagnosis and discusses how accessing support and information early can be life changing.
In the episode Jim Rogers, a 57-year-old living with younger onset dementia, shares how it felt to be diagnosed with his co-host, journalist and Dementia Australia Ambassador Hamish Macdonald.
“I was shocked. It was almost an out-of-body experience, it was as though time stood still,” Mr Rogers said.
“I can’t stress enough how important it is to seek support after receiving a diagnosis of dementia.
“I implore all general practitioners and healthcare professionals involved in dementia diagnosis to direct all their patients to Dementia Australia for support and information.
“Their support absolutely turned my life around and I hope this podcast helps others to know there is help available.”
People living with younger onset dementia have received a diagnosis under the age of 65. In 2024, it is estimated there are almost 29,000. This is expected to rise to almost 41,000 people by 2054.
Dr Marita Long, Dementia Australia Honorary Medical Advisor and general practitioner reiterates this call.
“I encourage all my colleagues to refer patients of any age, with any concerns or questions about dementia to Dementia Australia to access support and services,” Dr Long said.
“Dementia Australia’s Referrer Kit is a great start and is easily found on their website.”
The episode also features Catherine Daskalakis, a 57-year-old Sydney kindergarten teacher, who shares the frightening experience that led to her own diagnosis and what gives her hope in the dark moments.
“Not in my wildest dreams did I think I had Alzheimer’s disease.” Mrs Daskalakis said.
Since her diagnosis, Catherine has become determined to live well with dementia and share her story, reducing the stigma and highlighting that dementia does not just impact elderly people.
“I wanted to share my story, and if I could just give that one person hope, I have done my job.” Mrs Daskalakis said.
Dementia Australia CEO Professor Tanya Buchanan said with more than 421,000 Australians living with dementia, a figure that is expected to double by 2054 it is vital that people know to contact Dementia Australia for support and for health care professionals to refer their patients to Dementia Australia for ongoing support and information.
The full episode can be played here.
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About Hold the Moment
Hold the Moment is a podcast by people living with dementia. People living with dementia were involved in the development and production of the podcast from the start, so you’re hearing about issues that impact them from them.
Whether you've enjoyed what you've heard already, or are yet to start listening, there is plenty of impactful, emotional, inspiring and uplifting content for you to discover on Hold the Moment.
Listen to and follow Hold the Moment wherever you listen to podcasts. You can find it on our website here.
For support, please contact the National Dementia Helpline on 1800 100 500, 24 hours a day, seven days a week. 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.
Dementia Australia acknowledges and appreciates the support of the Australian Government for this initiative. Hold the Moment is produced by Deadset Studios.
Hold the Moment was released in the lead up to Dementia Action Week 16-22 September. Head to dementia.org.au to find out how you can join us to create a future where all people impacted by dementia are supported and welcomed in their communities, no matter where they live.
For general practitioners and healthcare professionals
A key resource for supporting a patient's cognitive concerns is Dementia Australia’s Referrer Kit. The Referrer Kit includes a dementia service guide, The Dementia Guide, information on the BrainTrack app and a GP referral script pad. You can order a free Referrer Kit on the Dementia Australia website.
Dementia Australia's services play a vital role in supporting your patients. Patients can be referred directly to Dementia Australia or a request can be made for Dementia Australia staff to contact your patient.
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: 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.