The Dementia Podcast

The Next Step

October 27, 2022 Professor Colm Cunningham Season 1 Episode 2
The Dementia Podcast
The Next Step
Show Notes Transcript

In episode two of our new series, Ailsa heads over to talk to Dr Sally Cockburn, also known for her regular radio hosting role as ‘Dr Feelgood’ in her segment Talking Health with Dr Sally Cockburn

They talk next steps, following on from those first signs, and what that process looks like for the GP and how Sally has handled those conversations. 

To find out more about this process Ailsa chats with Donna Lee, a dementia advocate at the International Dementia Conference that happened in September. Donna shares her experience of diagnosis and moving on with her life. 

The Dementia Podcast will be released 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

Ailsa Wild:

We've been sitting with this red helmet

Sally Cockburn:

Oh my red helmet on the table

Ailsa Wild:

tell me what it looks like um is it a moto? it looks like a motorbike helmet but no.

Sally Cockburn:

It is ish.

Ailsa Wild:

why is it here?

Sally Cockburn:

Here it is my that's my thing the 1996 Celebrity Grand Prix in Melbourne. I was a celebrity challenge I drove

Ailsa Wild:

you did not

Sally Cockburn:

I so did in a in a small four it was what itself four cylinder car that I got up 6000 revs and took off and it almost stood on it's hind wheels. Amazing.

Colm Cunningham:

This is the Dementia Podcast and I'm your host Colm Cunningham. You just heard the voice of Dr. Sally Cockburn. Before we also got to hear about Sally's adventures in the Celebrity Grand Prix, she first had to brave the wet weather season in Melbourne.

Ailsa Wild:

Hi Sally it's Ailsa and Joel we are at your gate. I'm in a particularly leafy part of Melbourne. The weather doesn't look like it's going to hold but we'll be recording indoors. We're met at the gate by Molly, a fluffy Shih Tzu-Cavalier with a high ponytail who Sally says saved her life. The lounge room is stuffed full of art objects and I just want to stare at the dressing dummy that looks like it's kitted out in a kind of glorious Scotch Gothic. Sally Cockburn is pretty well known here in Melbourne because of her regular radio segment as the fabulously named Dr. Feelgood.

Sally Cockburn:

Time for your appointment. Welcome to Talking health. I'm Sally Cockburn with you for two hours of talking health on this lovely, beautiful Saturday night in the middle of a long

Ailsa Wild:

From those first few conversations. I've had GPs come up a lot. While in Australia, they're not usually the ones providing the diagnosis, as I find out later, they're often the first point of contact. So you're a GP,

Sally Cockburn:

I am a GP I've been a GP guess what, how long? Well, this is our 40 year graduation year. So you know if any of my year are listening, come to the reunion.

Ailsa Wild:

Oh, wow. And so I guess the first thing I want to do is I feel like the general listener they've been in to see their GP. So they have a little sense of what their GP's day looks like. Because they've seen that 15 minutes of that. But for you, what does the day look like? You know, how many different people do you see how many different kinds of people do you see?

Sally Cockburn:

I'm a bit different to most of these? Because I'm semi retired? Yeah, so I paced myself, and I must admit, and I've got the luxury of only booking a patient every half an hour.

Ailsa Wild:

So 40 years ago, you just graduated? I did. And at that point, how much training had you done in dementia care? Like, just graduated, Doctor, what did you know? I mean,

Sally Cockburn:

Ahh, not a lot. Yeah, I'm trying to remember it. Look, I don't recall having intensive training in dementia at the time. I think that's more that gathered along the way in, in the hospitals. But gee, things have changed so much. There is more education out there. And I think also advocacy that we used to sort of in those days think once you've got a diagnosis of dementia, you know, then that's it. But now we know, A) Dementia is caused by many different things. It's an umbrella term. And B) There is sort of treatment and, and a lot of stuff that you can do. Yeah, to live independently. Yeah.

Ailsa Wild:

Yeah. So I don't know if you can tell me this, but I'm going to ask and we'll see how we go. Do you have a story about someone who, who has come in to your practice? Who you've thought maybe this person has dementia, and this is what we need to do next? And what did that look like?

Sally Cockburn:

Look, I think without identifying anyone, I think I've probably had quite a few. And it's the hardest thing to broach with someone because they are often not aware and they are often railing against it. And so I have to take it softly, softly. I want to obviously what I say to them is I'd like to do some maybe some blood tests and rule out some vitamin deficiencies for example that can or and mineral deficiencies that can be the cause of their memory issues. But because I've been maybe their GP for many years Yeah, I do notice these sorts of things and the most important thing as their longtime GP is to retain their confidence and to make sure they feel that they can trust me, because the problem when people are telling you that you know hey you got a problem with the memory, and you go, No, I haven't what you're talking about? Is that you don't trust them. Yeah. And I think we all have to decide who we trust and say to them, in fact, I'll tell you a story. My father said to me, when he was probably my age, I think. He was a clinician, he was an optometrist. And he said, Okay Sally, what I want you to do is, if you think I'm losing it, I want you to tell the other partners in the practice that they need to tell me to retire, and you need to tell me then, and I'll trust you. Yeah, he retired early. And I said, What are you doing? And he said, I think it's time for me to retire. Because I'm not up to what we said, Yes, you are. So that's the opposite end of the spectrum, when someone feels that they're losing it, and they're not. And that's a very important thing, that the person feels that they're part of this, I mean, medicine is teamwork, and very much should be patient centred. And I have a very short trigger for sending someone off to see a specialist, a Dementia Care Specialist, because I think they also need to see someone who's a specialist in this area, and look, many GPs are but I also want to know, what is the best treatment, and you know, the treatment, what can happen when someone is in this situation is they can get depressed. And the thing about depression is we have to tease out how much of their issues is due to dementia, and how much is maybe due to depression, because it can overlay it. And sometimes putting them on an antidepressant lifts the depression and their functioning gets better. So that the hardest part though, is when someone's living independently. And they may leave the gas on. And I think this is what children will often adult children will often worry about their parents that what if they something goes wrong? What if they, you know, leave a candle burning? And also what if they have some other medical problem that they need to manage? Are they taking their pills, and there's simple seems like getting the Webster packs, yep. And you can put their medication in a Webster pack and you just grab a list of your shots. And that's the particular brand. But it what it is, is a bubble pack. And it's usually labelled each day. And you just basically, and maybe if it's three times a day, and you just punch out the tablet your pharmacist can can make it happen. And they deliver it to you. Yeah, I mean, you can get those little boxes, and you can do them yourself. And you can do it with your older parent or spouse or whoever it is that's losing it. So they feel part of it. Yeah. But medication management can be tricky.

Ailsa Wild:

So in terms of that, like early conversation, or that it's obviously a series of conversations, it's not just one

Sally Cockburn:

Absolutely a series of conversations. And conversation that's the beauty of general practice. So we don't have to go, you come in cold, you may bring you some support person with you who says I'm worried they've got dementia, and you walk out with a diagnosis, because we have to do tests rule, and everybody needs to have things ruled out and classically, dementia and delirium, and I really would like to spend a bit of time just talking about the two of those. Dementia is a slow process. Delirium can be almost overnight. Now, delirium is confusion due to some intervention, it can be often it's an infection, most frequently a urinary tract infection. So obviously, the first thing that you do with someone who comes in is your check that they've got a urinary tract infection, or a chest infection, or something else. Now delirium generally can be treated, and it passes because you treat the urinary tract infection and their brain recovers. Yeah. And the trouble that I think is probably out there is how many people are in aged care facilities who have delirium, maybe even on top of dementia, making them worse than they are. And I think we have to be very, very careful to always look for any underlying cause. And what it is, is that when they've got an infection, the brain just, it just sort of was gonna say short circuits, but that's not really the right term. The infection or whatever it is underlying, just temporarily shaves off that that cognition that that ability to make decisions that memory, and it's such a delight when you get those people back.

Ailsa Wild:

Donna Lea is someone that I will meet a few months after chatting with Sally. We're at IDC, the International Dementia Conference in Sydney to explain some of that background noise. I'll talk more about IDC soon because some of the people I meet there will help flesh out a lot of this. I heard Donna speak and I knew I wanted to know more about her and her experience. We find a quiet spot, relatively speaking, in our little podcast hideaway. Among a publishing stand. The mic is precariously balanced on a tall stool. But Donna doesn't seem to mind. Yeah I sing. Oh that's right, you do! I ask Donna about when she received her diagnosis. I just I tell you the funny story. Like how it all started. Back then I was with my, I had a I had a boyfriend back then. And we used to argue and stuff like that. And he goes, You need to get your head examined. And I said, Yeah, that's that's typical, blame the other person. And I often say that this also, in my private we do I do talks about libraries with Deanne, extending about to get help. Yeah. So that always gets a laugh. The women always say, Yeah, that's right. But don't be like that. I'm thankful. And I'm grateful. Even though sometimes we fell out. I'm thankful for that. Because if he didn't, I wouldn't have known I have dementia. Like today. So I went up, to get my head examined, you go to a psychiatrist. So I did, anyway, the GP, I went to mentioned the psychiatrist, and she's speaking to me and she goes Donna, she said, you don't have a mental issue issue, you have a medical, and I thought, okay, so I went back to the GP and she's wrote a letter saying, I need to see a neurologist. And I don't know, I got confused because I'd probably had the dementia. I went back and saw her again, she goes, Donna, what are you doing here again? Because I need to get help. Because I've got a mental problem. She has no, I told you, Donna, you have to go back. Go to your GP. I'm gonna write. You've got something seriously wrong with you. And you need to face it. So I went to my doctor and he pointed me to a neurosurgeons. Neurologists, the brain doctor. Yeah, and, and he did a lot of testing and stuff. And follow up, like, we read a lot do testing and stuff like that. And we saw two, because I got I didn't understand the other guy was looking for dementia. And then the other one was doing dementia too. I just got confused. Because I had no, I had nobody to take me, I was taking myself. Donna was happy just to keep on talking. And I felt like nothing was off topic in a way because of how she is the topic. We're nearing the end of our talk. And the space is about to fill up with attendees as they come out of the main conference room. I asked Donna about what she would want to say to someone who's just had a diagnosis. What would you want to say to someone who's just been diagnosed? What would you what would you want to say to someone who's? Oh, I would I would, I would say? Is, I understand where you are. It's very hard to say how do you say talk to somebody? You can't say it's not the end. I said it's just it's, it's, it's a journey. And it's not as if once the doctors say you've got dementia, it's not the end. It's not you can't do it, you can do it. And to keep on it's really to keep on going.

Colm Cunningham:

At the start of the season, Ailsa and I were chatting about who she would be talking to you next. As you can tell from Donna and countless others. Those first conversations are very important. For me, I've had plenty of time to consider this. But I was curious what Ailsa's response would be. Just like me, I imagine you do think about all what's going to be important to you? You know, we've over you've also therefore heard the reality that one in three people in their 80s may well have dementia. So you and I, you know if we had another person here, one of us is likely to face this. So it's probably made you reflect on what you would want that to be like when you go to your GP first. Has anything jumped out about what you've heard hasn't happened for people or what would be important to you?

Ailsa Wild:

Oh, look, so as you're asking the question, I wasn't thinking about the GP first, I was just thinking about my life with dementia, which is I just really want to have audiobooks. And I don't know if that would actually work for me once once I'm there, but I just want to keep having stories. Like you know, I'm a story person. And I was Just thinking, even if there's a time when I can't read and I, you know, I, I'm not really getting to make other decisions about my life, I would really love it if someone would put on some audiobooks so that I can just keep listening to stories and probably the familiar ones. So that's the answer to the question that you didn't quite ask. So then you did ask, when I first go into the GP, what would I want from them? I would just want them not to look too frightened. For me, I think I would want them to look calm, and say, look, we've, I what do I want? I don't know, what do I want, I just want them to not look frightened. I want them. They think I'm gonna be okay, I just want them to look like they think I'm gonna be okay.

Colm Cunningham:

And I think that that's spot on, I totally agree with you. And you've. But you've also said, another interesting thing is we were focusing on the GP here, and they are not often or they're not always sorry, the person who's gonna first pick up on the fact that you need help. It can be the police, because often somebody will call the police because somebody's out on the street and not looking like they're, they're coping and so a neighbours call. So back to what you've just said, our police, our ambulance crews, our GPs, we want exactly what you've said, we want to calm response, we want to just pay attention to what I'm telling you. So we do actually need to inform a whole lot of professionals on that general awareness about the significant proportion of our citizens. And I'm very emphatic about our citizens with dementia, and the majority of people live at home. Normally, we focus on the stories that come out, either good or bad from care homes. But actually, that's not where the majority of people live. Around 70% of the people with dementia here and in Scotland are living at home and being supportive. So there's actually all those community supports. So helping them be informed. But at the core of it, you're absolutely right, that they come they look that I've got this.

Ailsa Wild:

Yeah. And I think then the other thing would be, these are the ways that the people around you can get good information. That would be the other thing. These are this is the this is how your partner, your children, your family, your friends, these are this is this is where they can get good information. Because I feel like I'm someone who, like lots of people. I'm so dependent on the people around me already. And I would want them to be coming on the journey with me from the beginning.

Colm Cunningham:

So you would talk to you, you think that you would talk to your family and friends about your diagnosis.

Ailsa Wild:

I think I'm that kind of person. I'm like, guess what? I feel really stressed blah, blah, blah. I think I think that I would, I would I would use my judgement. I do use my judgement about who I tell what. And who knows where my judgement would be at but I think I'm someone who notices who I trust and who I think is going to listen to me and I would be going to those people.

Colm Cunningham:

Thanks for listening. The Dementia Podcast is produced by Joe Martin with editing from Sally Grosvenor. Mixing and technical support from Neil Blanco, with fact checking and research by Gina Pirello. Dr. Narelle Yeo manages the music team at Sydney University's Conservatorium of Music with composition supervised by Erin Mckellar, who's also the composer of the Dementia Podcast theme. The composer for this episode's music is Isabella Lavenuta. Our website is dementiapodcast.com which will be getting a new look in the new year. The Dementia Podcast is a production by HammondCare's Dementia Centre