Introducing Hold the Moment, a podcast by people living with dementia

"You could’ve knocked me off my chair. It was like time stood still."

Jim Rogers was blindsided by his diagnosis of younger onset Alzheimer’s disease in his 50s. He didn’t see a dementia diagnosis coming, and yet it changed almost everything.

The way you sleep, exercise, travel around, and even how you interact with your loved ones will change after a diagnosis. So how do you even start to process all these changes?

On Hold the Moment, you’re not alone. Join Jim and his co-host, journalist and broadcaster Hamish Macdonald whose father has dementia with Lewy bodies and Parkinson’s, as they learn how people with dementia are managing their changing circumstances.

We’ll also bring in a few experts along the way for advice on the especially tricky stuff, like getting your legal affairs in order.

Follow Hold the Moment wherever you get your podcasts so you don’t miss an episode. And share it with anyone you know who has a dementia diagnosis or who knows someone who does.  

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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 Liam Riordan. Sound design by Sean Holden. The executive producers are Grace Pashley and Kellie Riordan. Production manager is Ann Chesterman.

We 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. 

Episode Transcript

(00:04):
People pointed out that I'd had conversations with people, or met people in my work. And I couldn't
recollect the meeting when they could. I'm very organised as a person. And I was starting to
realise that I wasn't able to file things where I could find them. So, it was frustrating. And

(00:29):
a lot of the decisions I was making were pretty big decisions, so you get them wrong and it makes
life difficult. And it wasn't till much later, at some point, went for a cardiologist appointment.
"Mr. Rogers, the doctor will see you now."
And the cardiologist sat me down in the room. And my phone was ringing.

(00:58):
And it was annoying, because it was ringing, I couldn't work out how to put it on silent,
or turn it off. So anyway, the call stopped and I sort of left it and then
it rang again. And she said, "you know, could you just turn your phone off?" And
I just couldn't work out what I needed to do to stop this phone from making noise.

And she said (01:28):
"You know, are you experiencing  this sort of thing now and again, or have you...?"

And I was saying (01:35):
"Yes, like these are the weird  things that are happening." And from that point,
she then referred me to a memory clinic. And when they said: "Unfortunately,
we can see that you have younger onset Alzheimer's", you literally could have

(01:59):
knocked me off my chair. It was almost an out-of-body experience.
I just... it's as though time stood still.[Sound effect representing a shift in time.]

(02:20):
I'm Jim Rogers. I'm 57 years old and I'm living with younger onset Alzheimer's. This is Hold the
Moment, a podcast from Dementia Australia, full of real stories about life after
diagnosis. But I'm not alone. I'm joined by my co-host and friend, Hamish Macdonald.

(02:43):
G'day Jim. I've met heaps of people living with dementia through my work as a journalist. But
all of this hit much closer to home when my dad was diagnosed a few years ago with Lewy
body dementia. He'd been diagnosed previously with Parkinson's disease. And I guess it was
a bit of an evolution from there. Getting news like that Jim - well, it's pretty big.
It is. It's huge. To be honest, Hamish, it's shocking. Since getting that

(03:08):
diagnosis all I wanted to do was find out information and connect with other people:
people who are experiencing what I am, because it's very isolating.
And I knew nothing about dementia. So I needed to find out as much as I could.
In many ways that's exactly why we're doing this podcast together, for Dementia Australia.

(03:29):
And you'll meet lots of people who are living with dementia. And we're
going to explore some of the common issues that all of us are facing.
So dad's living in residential aged care now, close to my siblings and I. We are
all in Sydney. I go to see him probably at least once a week. And when he's up for it,
we go swimming in the Bronte ocean pool. It's something he loves, and I enjoy too. He's also an

(03:52):
outdoors man. We grew up in the Snowy Mountains. Dad was always out rowing, cross-country skiing,
hiking in the mountains, but also running his pharmacies. It was really difficult for him to
move away from 'the Snowies'. I know he misses it enormously. But he also misses his independence.
This is something that so many people I talked to feel. We're

(04:14):
not going to sugarcoat how difficult things can get. We're also going to
show the many ways you can live a full and rich life, with dementia.
So, in this series, we're going to meet Heather who's staying
active and learning new skills along the way.
Oooh certainly. I have line dancing. My teacher, only the other day, she said:

(04:37):
"You're all facing the wrong way." And they said:

"Oh and Heather is too." And she said to them:  "And Heather's got an excuse!" [Laughter.] (04:40):
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And Anthony, who isn't shying away from dating with dementia.
Ooh la la.
I clicked straight away. And then we started texting,
and then talking on the phone. And then I told her my diagnosis.

(05:03):
And then there's Pat, facing the scariest part of it all with a smile.
I'm very lucky because I was diagnosed early,
because that allowed me to do what I did to get my - I call my 'active dying plan' - out of the
way. And now I'm on my 'active living plan' and my adventure with dementia.

(05:32):
Hold the Moment is full of helpful tips and stories that we hope you might take
some comfort from. Alright, Jim, you ready to do this?
Let's do it. Let's find out how to live your best life with dementia.
Search 'Hold the Moment' wherever you listen to podcasts.