The Dementia Podcast

First Signs

October 20, 2022 Professor Colm Cunningham Season 1 Episode 1
The Dementia Podcast
First Signs
Show Notes Transcript

The Dementia Podcast is back!

In this the first episode in our new series, Starting Conversations, host Colm Cunningham is joined by author and resident guest, Ailsa Wild.

Ailsa meets with her neighbours, Clare & Jim to talk about what it was like for them when Clare had those first signs of dementia and the conversation with their doctor receiving a diagnosis.

Colm then joins Ailsa to talk about what some of those first signs might look like, as well as set the context for their conversations moving forward.

The Dementia Podcast will be releasing every week, so please subscribe on your favourite podcast platform to stay up to date.

If you have any questions, please get in touch at hello@dementiacentre.com

The music for this podcast is reproduced with the permission of the composer and is registered with APRA

Colm Cunningham:

This is The Dementia Podcast. I'm your host, Colm Cunningham. We began planning this new season of the podcast during lockdown. So I got to know our new resident guest, initially through a computer screen. In addition, Ailsa's chats observations, and the expert discussions throughout the season and beyond, will form the basis of a book she's putting together about dementia. But more importantly about people and told through these conversations.

Ailsa Wild:

Hi, Colm.

Colm Cunningham:

Hey, Ailsa, how are you?

Ailsa Wild:

Yes, I'm good on the other side of the world from you.

Colm Cunningham:

I am. Well, hopefully you've got a bit of sun. We are enjoying the sun in Edinburgh, which is a rare event.

Ailsa Wild:

Oh, beautiful. It's been miserably cold here today.

Colm Cunningham:

Oh, hold on. I'm gonna challenge you on that. What temperature does miserably cold mean for you? Because it's all relative? It's 17 degrees here.

Ailsa Wild:

Okay. All right. Fine. It was 15. Today,

Colm Cunningham:

Oh, then that's not miserably cold. It's just an Aussie world. That's Ailsa Wild. Ailsa is an author from Melbourne, Australia. So she's not kidding when she says from the other side of the world. We talk often about telling stories and sharing them. And that's what we're going to do right now. Ailsa is going to be joining me on this shared story. While Ailsa has experience with dementia through her family history, she's here to ask questions. Questions maybe that some of us don't get to ask. We'll come back to that first conversation I had with Ailsa. But first, we start in an apartment building. Ailsa's to be exact. As we prepare to have a chat with her neighbours,

Ailsa Wild:

I'm about to go around to Jim and Clare's house. I feel nervous because the recording with John and Penny didn't work. So I feel extra, like stressed about this working but also it's my neighbours and I actually haven't really been in their house yet. So this is my first visit to their house. And then we're just going to keep being neighbours. So hopefully, this is gonna go well. I went around to the French bakery near my house and bought some macarons like, is it macaron or macaroon? I feel like macaroons have anyway, coconut or something. I feel like they're French little cute French colourful biscuits. And that's what I've got. And I'm trying to decide whether to get pickles that my kid made and give them as well like how many gifts is a good number of gifts? Clearly I care about what's happening this morning. So breathe in. And I'm gonna go around there. That was me just before I walked out my door. I swear I'm not usually that stressed but I had a wonderful chat with a couple only a week before Penny and John. Penny lives with dementia. And it was great to hear their perspective and how their life has been since Penny received her diagnosis. And then the strange setup we used to record the call decided to fail on us. With all those thoughts still in my mind, I walk out the door. Clare and Jim's apartment is just down the corridor from mine. Our floor has a shared WhatsApp group, which was created during the COVID lock downs. And when my family first moved in last November, we were immediately invited to join the group. When my six year old flooded our place by blocking the plug hole trying to make a swimming pool in the shower, Johnno sent out the distress signal to the WhatsApp group and Jim was over in a flash to help. So I guess I feel like I want to get a picture of your lives before there was any diagnosis. Before there was any changes in your behaviour. Like what did you do when what was what were your daily lives? Like? Do you want to start Clare?

Clare:

Well, you could sort of say, you know the first 20 20,000 was one that was a cool no 2000 2000 Yeah. 2000 And of course she's now over 2020 passed what more so who am I am I get a bit uncertain, you know oh

Ailsa Wild:

yeah, it's fine. Yeah, that's I feel really relaxed now. That's

Clare:

when so happened. Yeah, well, let's have it 2020s 20 Wait, I can't wait weeks. No, no, no, not weeks. But years.

Ailsa Wild:

Yeah. 20 years. Yeah. Because 2022 It is now. So what was your job? Because

Clare:

I was a principal a principal. Yep. And get all sorts of things in a I'm getting very worrying about this. But it's Oh, sure, yeah, I'm not that much that not. Not that much, really. But anyway.

Jim:

Perhaps I can start and answer the question and you can well, okay.

Ailsa Wild:

Clare starts out holding the microphone. But she says she's worried. And Jim very quickly takes over. He reaches an arm around her, and she leans into him as he holds the microphone for them both.

Jim:

Prior to Claire's diagnosis, we were both very busy professionals. Clare being a principal of a primary school, in a Catholic Primary School in Malvern, well it was Deepdene, Deepdene definitely. And I'm I was a an accountant. Yeah, semi retired from selling my practice. And I was then auditing. Yeah. So I was doing auditing of super funds. So I was very busy with that. Clare was very busy. And then there was a hiccup at Clare's school, which didn't involve Clare so much as it involved other people. And Clare decided that the pressure from that not worth it was not worth it when she wanted to retire. That was supported by her employer. But it was well, we won't go into the details of that. But it was very unfortunate for Clare to finish her wonderful career that way.

Ailsa Wild:

Yeah, so I'm just because we're recording, I just wanted to say I saw your face Clare when Jim said there was a hiccup at your school and you pulled a face with a mouth. So I don't need to go into the details about that. But do you want to talk about what that felt like for you, Clare, when that happened?

Clare:

Terrible. I was just just devastated. Stunned and

Jim:

So at that stage, we were still running backwards and devastated. forwards to Mansfield, which was our retreat to get away from our busy lives. The two hours travelling in the car was two hours talking and communicating, which we didn't have a lot of prior to our retirement. Absolutely. Yeah. And then we noticed some problems with Clare's thinking. At first, I thought it was her hearing. She wasn't hearing me. Yeah, I think so. And so I sent her off to a hearing specialist. And and who tested her hearing. And she came back. Well, 20/20 is a vision thing. So whatever that is in hearing, she came back 20/20. And so I figured that that was unusual. And then we have a son who's involved in the medical industry. And he suggested that we talk to a specialist, psychologist. Sorry, psychiatrist. Yeah. And we went and saw a Doctor Mocellin

Ailsa Wild:

Do you remember the little things that made you think, oh, there's something going on? Just to kind of go back a little bit? Like, what were the what were the kind of moments where you went? Oh, that's not

Jim:

Yeah.

Clare:

I'm not sure now.

Jim:

As I said earlier, I thought it was her hearing. Yeah, that I was saying something like, for example, can I have a cup of tea because Clare's a great tea maker? Yeah. And she'd say, Yes. And then she wouldn't make cup of tea. So I thought that was strange. And then I'd say something like, do you want to go over to Highpoint with me? Yeah, yes. And then she'd sit down and, and not think about it anymore. Yeah. And I'd be fussing around waiting to go and she'd be where are we going? So there were these small things like that? Yeah. And so in the end, in the end, Clare was displaying similar condition with the boys, our three sons, and one of them in particular who had referred us to Dr. Mocellin, because I had gone to him with the with the issue. He said that there's something wrong. Yeah. Yeah. And that's why he referred us to Dr. Mocellin. From his diagnosis, Clare has a degenerative brain disorder. And that is probably early onset dementia, leading into Alzheimer's.

Ailsa Wild:

What can you can I ask you those first few visits? What were they like where you both there?

Jim:

Yes. Yeah.

Clare:

Yep. And I think he was I felt sort of like stoned a bit like, what's this going on? What's this place? This is just a bit, don't know whether I'm here or not or whatever I was. Yeah.

Jim:

I think you're the word you meant. I was stunned. Yes. But we were both very stunned. Yeah. We weren't expecting that. Yeah. Claire went in on her own at that time.

Ailsa Wild:

Okay, so you got that diagnosis, like when you're by yourself? Yes. Yeah. And then how do you remember what how the doctor was when he gave you that diagnosis?

Clare:

Well, I'm trying to think whether he was with Jim or by himself.

Jim:

He called me in to the room. That's right. I was in the waiting room. Okay. He called me in and gave me the news. Yeah. Which he had already broken to you. Yeah. He's a beautiful man.

Clare:

Yeah, he is a beautiful man. Yeah, yes.

Ailsa Wild:

Yeah. So he did. He did a good job of giving you the information.

Jim:

Absolutely. Yeah.

Ailsa Wild:

Jim lets a few tears go as he talks. Clare speaks less, but her whole face is alive with agreement and feelings. She nods, raises her eyebrows and grins wickedly at me, or shakes her head in exasperation, a constant silent commentary on what Jim is saying. We end up talking about their travel stories, their family, and how they spend their day to day. We'll hear from both of them again soon.

Colm Cunningham:

When I first met Ailsa she asked me to tell her a little bit about myself, and why raising awareness and knowledge about dementia and dementia care is so important to me. So let me share a little bit about what a told Ailsa. For over 25 years I've been involved in dementia care. And until the end of 2022, I had the privilege of leading HammondCare's Dementia Centre. It's a centre of international thought leadership and dementia, where practitioners, care workers staff, and importantly, people with lived experience of dementia come together to drive change in dementia care. While I have a background in general and intellectual disability nursing, it was my time in a L'Arche community had a massive impact on me. It really changed the way I thought about providing care for people with complex needs. More recently, my focus has been on unravelling the issue of complex behaviours in dementia, connecting research with practice, which has led to much greater understanding of the evidence supporting non drug treatments. And along with my colleagues, the recent publication of a textbook on this subject. Design of the built environment for people living with dementia is also a passion for me, I am sure you'll hear a lot about how our environment and building design impacts on people's quality of life. But now let's get back to that first conversation with Ailsa. The author Oscar Wilde once said, "Memory is the dairy we all carry about with us". So it's not surprising then in those first few signs that Jim describes, we see memory being one of the first things that is noticed. Ailsa asked me about this. And short term memory issues are often the initial signs people notice. And I discussed this and some of the other changes a person with dementia may experience. Importantly, there may be other reasons for these changes that are not about dementia

Ailsa Wild:

Colm is in the UK, and I'm in Melbourne. So we meet at 8pm. My time, my partner has a work meeting until eight and my six year old is supposed to turn his lights out at eight. So it's all happening at the most high stakes moment of our family evening, I passed the baton, slam the study door and click through my emails into the recording site. Colm and I start talking and eventually we get on to those first signs of dementia, and how it might present itself early on.

Colm Cunningham:

Well, there'll be a few people with dementia that I talk to who would say don't start with the memory stuff Colm, but it is often that people are noticing memory issues and that they are defaulting to things that happened before. Or they're not making the connection with something that's happening in the room. Now the first thing we would say and all the consultants that work in the dementia centre and all of that would say is let's start with making sure that the person can see through their glasses and that their ear canals are not blocked with wax and all those things because it may well be a receptive issue and it's got nothing to do with dementia. It may well be that they have a urinary infection, that's just knocking things off slightly, all of these things must, must be part of the first stage that we are. And it's significantly because we know that things like isolation, which happened increasingly during COVID, and depression, depression can often mimic, many will not mimic, sorry, but many of the things that come out of depression do look like dementia. But if treated, might well again, resolve that. So I guess my starting point is make sure before you start jumping to the D word, that you've actually ruled out everything else. A medication change, I could go on with the list of things that's really important to think about, but generally people start having problems with their short term memory. And therefore our brains are quite clever, we will still try and use that information and processes but we will be using more of our long term memory, I often describe the your memories as if somebody has filed everything in order of date. And somebody started using a shredder, on the short term memory thing. So you quite rightly default to things that are in your memory bank, because they are solid.

Ailsa Wild:

So Colm gives me a few examples of how we can work with changes in people's memory. From making sure the clocks are accurate. So even if people's short term memory is affected, they're still able to place themselves within the day. Or maybe because they're only accessing long term memory, they're only able to read analogue clocks and not a digital one. He talks about needing classic signage for public toilets, that's clear and makes logical sense. I get the feeling that design is something Colm is pretty passionate about. So the next thing I am going to do is I'm going to be going into a conversation with a GP. And I'm going to be talking with her about dementia and those kind of first conversations that people might have when they come to a GP really early on, maybe with an early diagnosis, or maybe without yet having a diagnosis. Is Is there anything in particular you would like to hear about that conversation? Or what are what are your thoughts about that early conversation with the GP?

Colm Cunningham:

Well, I think one of the things is really important is that GPs, see lots and lots of different people with different needs and different conditions. They probably on average, I think one study said you might they might see three people in a year, that day that might have dementia. So it's not something that they're doing day in and day out. So the first thing I'd want to make sure is that they have access to information and resources that help them in that early stage when they go out and hang on something's genes so that they follow a really good process for that person and know where the help is. Because I don't think we can expect our GPs unless if specialised to be all things. So it's really important, however, that they do know. So what I'd love to hear is that they tell you a Yeah, I use this resource. And I know about these people. Because I think that's the really important thing I've heard from people with dementia is that for want of a better description, the person fumbled along, and in particular, that they said a lot of the wrong things. And that person, you know, we talk about memory problems. People never forget those first messages to them about what's what's been said, like, well, you just need to go and put your affairs in order or things like that. So I would encourage the GP in many ways, I don't mean this the wrong way, but to say nothing until they know what they need to say, because that person will never forget it. Those first conversations can be really impactful for both the person with dementia and their family members. We'll hear more from Clare and Jim in subsequent episodes, and in next week's episode, we'll join Ailsa as she sets out on her trip to chat with a local GP. Thanks for listening. The Dementia Podcast is produced by Joel Martin, with editing from Sally Grosvenor. Mixing and technical support from Neil Blanco, with fact checking and research by Gina Pirello. In partnership with Sydney University's Conservatorium of Music, we have Dr. Narelle Yeo, managing the music team, with compositions supervised by Erin McKellar, who is also the composer of the Dementia Podcast theme. The composer for this episode's music is Charlotte Lehman. Our website is dementiapodcast.com. The Dementia Podcast is a production By HammondCare's Dementia Centre