The Dementia Podcast

The Questions

November 03, 2022 Professor Colm Cunningham Season 1 Episode 3
The Dementia Podcast
The Questions
Show Notes Transcript

We join Ailsa on a chilly Melbourne afternoon as she chats with Steve Macfarlane, head of clinical services for DSA. They discuss how a diagnosis is delivered and we hear from Clare and Jim as they recount the experience.

One question the podcast asks is how early is early when it comes to picking up on a future diagnosis. To that end, we hear from Craig Ritchie as he explains looking for new ways to detect and measure the progression of the disease in the brain in a ‘silent period’.

In addition, Craig stresses the importance of looking at dementia as a disease of the brain and the focus on maintaining brain health.

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:

Ailsa our partnership here, you're meeting lots of people who I know and you met my colleague, Steve McFarlane recently. How did that go?

Ailsa Wild:

Yeah, it was great. It was really, it was really fascinating talking with him. I feel like I didn't really have that sense of all the things that you might want to rule out when someone first comes to you with a memory issue. And he was talking about that process of ruling things out and that was really interesting to me. It was good. We met in a busy cafe and it was really loud. And I was like, Joel, is the sound okay?

Colm Cunningham:

This is the dementia podcast, and I'm your host Colm Cunningham. It's 10 in the morning and else's chatting with Steve in a cafe down the road from HammondCare's Melbourne office. It's another great day, and the cafe is just filling up with the sounds of the late morning coffee crowd. Steve is the head of clinical services for Dementia Support Australia, DSA for short, overseeing the national program and supporting the team of doctors located across Australia who work in the DSA program. But one of the reasons Ailsa is also talking to Steve is his ongoing work as a geriatric psychiatrist and his many years of experience in this area. He specialises in the care of older people. And Steve shares with Ailsa that around three quarters of the people he sees, will have some kind of cognitive concern.

Ailsa Wild:

When Steve walks in, the first thing I noticed is how tall he is. We shake hands and sit down. And I ask a lot of questions. As we talk, the cafe gets more and more full, and the coffee machine is working overtime.

Steve Macfarlane:

My job is to try and decide whether what they're presenting with is normal for their age, or representative of something not necessarily a dementia. Because various psychiatric disorders can present with memory problems as a symptom. So try and tease out the cause of their apparent memory concerns or complaints, and either reassure them or make a diagnosis and start them on some treatment. Hopefully,

Ailsa Wild:

When we heard from Claire and Jim, one of the things I was interested in was how the diagnosis was delivered. I'd heard from Colm and the others, that that is often the part that can be handled poorly. I get to asking Steve about his process. And so when you're thinking about being sensitive, we're in the delivery, what are the things that you are, you know, what are the how do you do that? What are what are the ways in which you would deliver a diagnosis sensitively?

Steve Macfarlane:

Well, part of what I do during the the hour that I spend with people during initial consult is I try and get a sense of who they are and what their personality style is, like, what their concerns are, you know, if they have already reached the conclusion that this is likely to be a dementia, and you can get a sense for that once you develop rapport in a consultations, then you can break the news in a different way, compared to somebody who's clearly terrified that this might be the outcome. You have to read people quite well during consultation. If I don't read them well enough, during the first hour and more testing is necessary, then, you know, you develop that further rapport and sense of their personality style and their expectations with subsequent consults. And you just do it on the fly. Really, it's a bit of an art based on how you read the person and their family and their expectations during the relatively brief time that you've known them.

Ailsa Wild:

Yeah. And it's not long, really,

Steve Macfarlane:

There is no correct no single correct way to break bad news. It's an individual thing

Ailsa Wild:

I could tell from talking with Claire and Jim in episode one, that the meeting with the doctor and receiving the diagnosis. All of that was tough, despite how well it seems to have been handled. So he did some so the doctor did some tests. John? Ramon Romand remonde Yeah, there's no D I think monoamine Romane. Yeah. And he, and he gave me some tests. Did you have to do kind of written stuff? Yes. Yeah. And what was that? Like? Do you remember?

Clare:

Don't remember. I can't remember that.

Jim:

We were both very stunned by the information that he was giving us. Yeah. And he came to a very professional conclusion diagnosis if you like, yeah. And we then knew we were what we're heading towards Yeah, I broke down.

Ailsa Wild:

And do people then have misinformation about what dementia is? And if what happens then?

Steve Macfarlane:

The commonest one, when you tell them they have Alzheimer's disease, for example, there'll be a sigh of relief from the other side of the table and they'll say, well, at least it's not dementia. Okay. Or if you tell them that they have dementia, because you're not quite sure what type it is. They'll say, Oh, thank God, I thought it was Alzheimer's disease. So that's the commonest misperception. That's the commonest question I get asked by patients and families what's what's the difference between dementia and Alzheimer's? Yeah. And the answer to that is, you know, there's 100 of different types of dementia, most of which are incredibly rare. But the commonest type is Alzheimer's disease. So it's a subset of dementia, if you like, but it's about 70% of all cases, will be Alzheimer's type dementia,

Ailsa Wild:

Everyone's been there really, the trip to the doctor or GP or specialist. Someone tells you something, and maybe you're not really sure what that thing they said actually means. What do you ask? How do you ask it? Is it any different with dementia? I asked Steve about this.

Steve Macfarlane:

Usually not initially, not at the first consultation, their priority is to get a diagnosis or to be reassured. They want to have their concerns validated, or a particular condition ruled out or ruled in. What's the what they typically do is once you've broken the diagnosis, there tends to be a period of numbness on the other side of the table. And people haven't thought of what questions they want to ask at that point. I usually tell them as soon as you leave this room, all of these questions that you wanted to ask will come flooding back. So I'll invariably schedule a follow up appointment to allow both the patient themselves and their family member to think about what they want to ask. They'll typically ask a variety of questions. The commonest one is, you know, how long have I got? Or what can I expect going forward? Yeah, which is a bit of a moveable feast. There are sort of general rules about prognosis and life expectancy for all different types of dementia. But as I say, if you're in your late 80s, and you have a diagnosis of an early dementia, you're not going to die of that you're going to die off something else. Yeah, people often find that piece of knowledge very reassuring. Yeah. Otherwise, in Alzheimer's, the average survival from diagnosis with Alzheimer's to death from Alzheimer's might be 10 years, okay. But there's such a wide variation on either side of that, that the average becomes meaningless. I've seen some people go downhill in two years, from the point of the very first changes to requiring nursing home care. Other people have followed up for 15 years, and they're still living at home with the same diagnosis. So the best guide you have for prognosis with the person sitting in front of you, is to ask the question, how long have things been going on for to reach this point? And then you can roughly extrapolate forward if they've had five or six years of concerns, and they're still only very mildly impaired, no, that's not a rapidly progressive condition and you can give them some reassurance. On the other hand, if they were working six months ago and driving a car, and now they're struggling to cook meals at home, that's a very rapid change. And you'd be more concerned about how the course is going to evolve.

Ailsa Wild:

Have you had any surprise questions? I wouldn't have expected anyone to ask that.

Steve Macfarlane:

Well, you know, one of the questions I had having just delivered a diagnosis was how do I donate my brain to science? Yes, yes. Which completely caught me out of left field. I wasn't expecting that. That's a good question, though. Like, absolutely yes. It's not something that people typically consider. No organ donation is one thing that donating your brain to a brain bank. Yeah. It's a great idea. We are always looking for pathology samples to be tested. Sure. So for so forth. Um, but I was very surprised that that was at the top of the person's list of questions.

Ailsa Wild:

One of the things I mentioned to Steve was about getting that early diagnosis. Are there any negatives? Steve's thought on this was no. It was much better to have an early diagnosis as it gave them agency in their own future planning for care. That got me thinking about early detection, and how early is early? This is one of the things that came up at IDC. So we're sitting here in our podcasting station with Craig Ritchie, who we hauled out of a session to come chat with us. There's the faint buzz of the crowd coming from the main conference room, neatly partitioned off by large double doors. So hi, your name is Craig it is can you tell me a little bit more about yourself, Craig Ritchie,

Craig Ritchie:

Yeah, sure

Ailsa Wild:

Tell me about your job for starters.

Craig Ritchie:

My job I'll start with my job.

Ailsa Wild:

I mean you can tell me about the West Highland way if you like,

Craig Ritchie:

Probably rather talk about that to be honest.

Ailsa Wild:

It's beautiful.

Craig Ritchie:

It was a long walk, as is my job. It's a long

Ailsa Wild:

When he begins talking with me, I realised journey. Craig has a quiet, almost self effacing voice, which feels somehow surprising after his confident presentation and his strong clear opinions. Craig is a professor of ageing at the University of Edinburgh, as well as being the chair of the Scottish Dementia Research Consortium, and the director of a new organisation called Brain Health Scotland. Before we get on to early detection, Craig said something when he was on the main stage that seems quite foundational to our conversations. For starters, one of the things I heard you say was Alzheimer's is a brain disease, not a mental illness. And that feels like a really important thing for people who are kind of new in the realm of, you know, maybe someone they know has just been diagnosed with dementia, or maybe they themselves have just been diagnosed with dementia, or they're, you know, starting to work as a carer. So can you tell me a bit more? What does that mean? It's a brain disease. It's not a mental illness.

Craig Ritchie:

Well, yeah, I mean, I think the thing is, we have to turn back the clock to 1906, I know that this is not going to be a, you know, 120 year long story.

Ailsa Wild:

I'm also a history geek. So as soon as you put those pictures up there of Alzheimer's, Alzheimer's patient

Craig Ritchie:

Auguste Deter, Augustus

Ailsa Wild:

and then the illustrations that okay, sorry.

Craig Ritchie:

So the point is, when, when when, in 1906, when when Alzheimer first described Alzheimers disease, it was a brain disease, you know, then and as I was saying earlier, the problem that we faced in this branch of medicine is we haven't had the advantages other brands of medicine have to be able to do what we call a tissue diagnosis. So most infectious diseases and cancer, you will know what is going on in hepatology, you will know specifically what's going on in the body, because you can actually look directly at the cells that are changing or whatever might be going on with a virus or bacteria.

Ailsa Wild:

But we can't go in and cut people's brains up.

Craig Ritchie:

No, not ethically No. So what we have to do is we've we've had to spend the last 100 years or so kind of approximating to what may might be happening in the brain, because of how we live our lives, how we relate to the world around us and the symptoms that we develop. So one of the most obvious is memory impairment. So over that 100 years or so, we've conceptualise these brain diseases, through the lens of the symptoms that they present with, we call that and that's in a phenomenological approach, we look at the phenomena that emerged because of the disease. And because those symptoms tend to present and come to the attention of the family or to the doctors tend to be things like memory impairment and behavioural problems, the work on neuro psychiatric symptoms. They fell into the kind of the, the the remit of the psychiatrist. And therefore not because this was a mental health condition, but because of the people who were looking after these individuals were psychiatrists, ipso facto, it became a mental health condition. But when you, I am a psychiatrist, but when you speak to families and carers, I think there's there's almost inevitably a kind of a resistance or a disquiet about being seen in a mental health hospital, the outpatient clinics are in psychiatric institutions, that there are beds for people with dementia and guess where they are, they're in psychiatric hospitals. So what we're trying to do is, is pivot back to I think what Gus D would have wanted, as well as Alzheimer's would have wanted. And that is to recognise this as a brain disease. The frustration, if I'm being perfectly candid, is probably 20 years ago, 30 years ago, we were beginning to get better at actually measuring the disease in the brain, brain imaging, spinal fluid assays, you know, the lumbar puncture, you can actually look at the proteins that are in the brain that relate related to the disease. However, it's taken the legacy of how the 20th century was, is carrying on through into the 21st century. So we're, we're still, in effect, we're providing 20th century care, quite deep now into the 21st century. And I think one of the things that, personally, that I've been trying to do, in listening to people, both patients and family members and clinical colleagues, is say. Is it going to be possible to take where we are now and move to this earlier stage disease and younger people, or do we have to start again? And my view is we have to start again. Okay, we have to give ourselves a blank canvas to say, look, we're over. We're over there at the moment. So I'm pointing on a podcast that has now been pointing to the right, we're over there at the moment in terms of older people with the dementia syndrome. Yeah, there's still so much we need to do with those people. And so much need to understand improve quality of life. But let's let's create a new space. The brain health space, where we recognise from the outset it was the brain disease and we have a different paradigm. That's what the title of my talk was about this paradigm shift.

Colm Cunningham:

Craig is passionate about challenging us to change the conversation. To think about dementia as a preventable disease. The medical tests used to detect and measure the disease may need a new approach, with the aim of much earlier detection, allowing for timelier treatment and support when people are younger. Preventing the disease in the first place and understanding our brain and brain health is at the heart of Craig's message. And Ailsa goes on to chat with Craig about this, and the potential for an optimistic future for preventing dementia.

Ailsa Wild:

So in your talk, you talked about the silent period, which is that kind of 30s 40s 50s 50s Okay, but it's a time when we can't actually we're not noticing signs and symptoms of dementia at all in someone who's just going about living their life.

Craig Ritchie:

Can I just stop there? We're not noticing signs and symptoms of Alzheimer's disease. Okay. Dementia is a clinical syndrome. Sure. So you don't have people who are diagnosed with Alzheimer's disease who don't have any symptoms or very early symptoms don't have dementia. Dementia is a condition where you've got significant medical, you know, memory impairment, functional impairment, etc. That's, that's the D word. Yeah. We never use the D word. Yeah. Yeah, it's specifically about Alzheimer's disease Or Lewy Body disease, or whatever it might be. It's a horrible mouthful Neurodegenerative Disease. NDD if you like, so those Yeah, so that silent period is those people who may have very early disease. I mean, I love to speak in analogy, but think about a lot of cancers. Let's think about cervical cancer, for instance. So the earliest stages of cervical cancer are asymptomatic people, women don't notice any symptoms, because I have to go and get a pap smear. Exactly, exactly. And that's the whole point. So you pick up this disease at an early asymptomatic phase. And guess what the prognosis is? 1000 fold. Don't quote me on that number 1000 for better than if you pick it up, when it's cin four and a spread all over your body? Yeah. Unfortunately, the way we are on clinical services at the moment for people with dementia is in effect when the disease has spread all over their brain. So what we need to be doing a similar How can we identify these diseases decades before that stage is reached? Yeah, it's quite emotive. But I think in some ways, we run palliative care services and memory clinics for people who have end stage disease. And the challenge has been to get my colleagues and the public to say, Well, should we be moving earlier to identify this? This is a disease of midlife.

Ailsa Wild:

And maybe once you have some more information, it's going to be not so silent, the silent

Craig Ritchie:

Well, that means to make my, because we call it a silent period. Because as I said in my presentation, we call it a silent period for not listening properly. Yeah. And the tests that we do in memory clinics, are cognitive tests, we do the assessments we do. Aren't we tuned in to those early changes that I was presenting one particular cognitive test called the four mountains test, which does seem to be sending out a signal that there may be a problem?

Ailsa Wild:

Okay, can we talk about that, because I completely failed that test to the like input. So what I did is he put, you put a picture an image on a screen of four mountains from a particular perspective, and then said, have a look, get familiar with it. Now I'm going to show you four more pictures of four mountains, but only one is those four mountains, but they're from a different perspective. And I looked at it, and honestly, I was like, I actually don't know, like, and I have to tell you, I'm here with Joel, who's the producer, and Joel and I went out for dinner last night, and we walked in the exact opposite direction of where we intended to. We were but neither of us were both wrong. That's wrong. And then we and then we laughed at each other. But so I'm someone who's not crash hot with directions and spatial and, you know, I don't know what's going on in my hippocampus. But um, you know, my question is I am bad at because I'm walking the complete wrong way to dinner and I can't look at those mountains and tell you does that mean, you know? No, you're not telling me I have.

Craig Ritchie:

Absolutely, not. And I think that there's the I'm glad you're listening to the presentation, because you articulated beautifully with the four mountains test was so you're obviously paying attention. The the most important thing in any neurodegenerative disease is change. Okay? It's a delta as we call it as a change between one assessment and the next assessment because, you know, Alzheimer's disease, dementia is a progressive condition. So one of the things that factors that go into any analysis of you know, what is wrong would be the interval change over a year to mean as I said, in my presentation, I can't do the four mountains test. And I even know the answer to it. But But what if I were to get worse, you know, 2, 3, 4 years down the track, my scores were to get even, you know, that was the one off test, we do that test, we do 15, 16, 17 different screens with different things, some are super easy, some are hard. So there's a change score that we're looking at. These are the things you see, you might begin to see as being important for doing that early assessment. So rather than doing the memory testing that we do, on cognitive tests, necessarily be doing people with suspected of dementia, like the mini mental state examination, or there are other tests, which in in early life, and if you have early disease, you just ace them, you have 30 or 30, or 100%. So you need to look at Better a test and maybe pick up these more specific changes earlier on, and then look at how they change over time. And that's that then stops being a silent period and starts being a period of time that we can actually see. And we don't just look at a single test, there's no there's never going to be one single test for Alzheimer's disease, it's going to be looking at risk factors, genetic risk factors. Other sort of so called modifiable risk factors, brain changes through imaging, brain changes through cognition, bring all that lovely information together and using modern statistical techniques to say, Who are you what is happening from all of these different features.

Ailsa Wild:

It could have been the conference and the feeling of shared knowledge, of course, but there was a sense of positivity, or at least forward momentum talking with Craig.

Colm Cunningham:

Having worked with Craig for many years, and listening to him talk with Ailsa, I'm always inspired by his knowledge and passion for debunking the many myths around dementia. And by doing so, shifting the focus to maintaining brain health throughout our lives. Maintaining brain health isn't anything that we don't already know, exercise, a good diet, sleep. These are all things that help us maintain a healthy brain. This change is an important shift in our thinking about dementia, not as an illness of our brain as we age, but brain wellness throughout our life. Thanks for listening. The Dementia Podcast is produced by John 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 Oran Harkin. Our website is dementiapodcast.com. The Dementia Podcast is a production by HammondCare's Dementia Centre.