Join Colm, A/Prof Steve Macfarlane and Holly Markwell as they introduce the series ‘Talking Dementia’. Steve is the head of Clinical Services at The Dementia Centre and Clinical Specialist at Dementia Support Australia. Holly is head of professional development at ‘The Dementia Centre’.
The ‘Talking Dementia’ series seeks to provide short and informative episodes on the varying types of dementia. In this episode the panel examines dementia as an umbrella term and discusses, symptoms, treatments and avenues for support.
Dementia Support Australia is a nationwide support service for those living with dementia who are experiencing behavioural and psychological symptoms.
For those in need of support that is specific to their country we have linked this international repository of support agencies.
The novel and online forum 'My home my life' was referenced in this episode and shares practical ideas for people living with dementia.
The 'World Alzheimer Report 2015', Dementia statistics and epidemiology founded by Dementia Australia and this Dementia Fact sheet written the World Health Organisation provide informative and relevant statistics pertaining to the national and global impact of dementia.
Hello to you and welcome again to The Dementia Podcast. I'm your host as always Colm Cunningham and today I'm pleased to announce a new series. We've talked about the fact that throughout the dementia podcast, we hope to build up a collection of themes and issues. And today we start talking dementia, where we're going to initially talk about what is dementia, and we'll probably talk about what is not dementia as well. And we will learn in future episodes, look at different types of dementia, and what specific things we need to know about those types of dementia. We appreciate that dementia diagnosis can be daunting. And so we will ensure that we're connecting you in our show notes with places that you can get advice and support. Today we'll be talking to some of our clinicians. But in future episodes, we'll also be talking to people with lived experience. And indeed, if you visit dementiapodcast.com, you will be able to see some episodes that are with people with dementia and their carers and to hear some of their thoughts which include some of their experience of diagnosis. You can also go to Apple podcasts and Spotify and various other platforms to find the dementia podcasts as well. In 2015, the total estimated cost of dementia was estimated in US dollars at 818 billion, it's now actually estimated to be around a trillion. So it's a significant amount of money that is spent. In fact, if it was an economy, it would be the 18th largest in the world. But how we spend that money and how we support people is another issue. If we look at the size and scale and numbers of people living with dementia, we say currently worldwide, there are 50 million people with dementia. Now that's talking about the current prevalence. So you'll often hear people talk about prevalence and incidence. Well, prevalence is the number of people in a certain period of time who are living with a particular condition. In this case, we're talking about the number of people in a year. And we'll talk about incidence in a second. But if we were to talk about a population like the USA, to give you a sense of the number of people living with dementia have a population of 330 million, which is the population of the USA 6.2 million people currently are living with dementia. By 2060 in terms of incidence, which is the increasing number over a period of time that are expected to have dementia, that will be around 13 point 8 million, so roughly double. So it's quite significant, because we know that the incidence is increasing primarily because we have more people living longer and therefore as dementia is primarily a condition that affects older people. Therefore you're going to have more people living with dementia, there is some good news in terms of the incidence and that there appears to be some decline in relation to vascular type dementia is because some people are stopping smoking and drinking. And that is reducing some of the risk factors there. So we've talked about the fact that it's, of course, a significant issue, because we have many citizens living with dementia, who need support, and we need to make sure that the support is right. But let's firstly talk today about understanding what is dementia. And to do that i'm joined again with our head of clinical services Professor Steve Mcfarlane, who at The Dementia Centre supports us in so many ways. And along with him is Holly Markwell. Holly is our head of professional development at the dementia center. So she makes sure that we are getting the education and knowledge and all that we need to do our jobs. So two very important people for the dementia Center. Welcome to you both. Many of you listening may think of dementia as a condition, which affects older people. However, it's not a normal part of aging. Holly, we often get confusion about the word Alzheimer's disease and dementia. Can you shed some light on that for isHolly Markwell:
Absolutely, it's really a constant source of confusion for a lot of people. But when we're talking about dementia, it's a collection of symptoms or a syndrome. And Alzheimer's disease, of course is one of the diseases that causes that. So really, we can think of it in quite simple terms like an umbrella that dementia is the umbrella term. And underneath that we might have, you know, a disease like Alzheimer's disease, vascular dementia, Lewy body dementia, Frontotemporal dementia, and so on and so forth, many, many different causes.Colm Cunningham:
And I often say that one of the reasons that confusion exists is because a lot of organizations who started to lead the charge In advocacy and recognizing the issue termed themselves, Alzheimer societies or organizations nowadays I do see for example here in Australia that Alzheimer's Australia is now called Dementia Australia. So I guess there's a reworking of the way people communicate about all of the conditions that sit under that umbrella.Holly Markwell:
Absolutely. And I think that's been a really important change to recognize those different types because of course, if you've been diagnosed with one of the slightly more rare types, then you're going to feel disinclined, disinclined to to, you know, to join up and get support from something called Alzheimer's, you know disease, whatever the organization is. So I think that's been a really important change to recognize all those different forms of dementia, different types of dementia.Colm Cunningham:
Now Steve I know in future episodes in this part of the series, we're going to look at specific types of dementia. But talking under that umbrella, can you tell us a little bit about exactly what we mean by dementia?Steve MacFarlane:
Probably equally as important Colm this start by talking about what we don't mean by dementia because they've changed the terminology in recent years and some of the major diagnostic classification documents. Nowadays they referred a major neurocognitive disorder rather than dementia. And a major neurocognitive disorder exists whenever you have a memory or thinking problem that is so severe, that it impacts on your ability to manage daily activities. So you can get a major neurocognitive disorder from the head injury or a stroke or from chronic psychiatric illness. But that's quite distinct to what we've traditionally understood as being a dementia, which refers to any one of 100 or more different neurodegenerative diseases. So a memory or thinking problem that arises in the brain as a result of organic or physical changes in brain cell function. And that is progressive over time.Colm Cunningham:
And Holly what are some of the common things that you when working with people with dementia hear as problems they're experiencing in the brain.Holly Markwell:
Yeah, look, I guess, for many people, but not all, one of the most common and early changes would be memory loss. So there's a part of the brain that is quite uniquely vulnerable to that type of disease process, particularly in Alzheimers disease. And, and that part of the brain really gives you that kind of running, I guess, commentary on what has happened for you throughout the day. And when that is affected, it means that that short term memory is impaired for the person, but dementia is, you know, could affect all different types of the brain, for example, it might be that it affects the lobes that sort of store the little everyday activities, those patterns of activities that we store away for, for anything that we do throughout the day. And when the when that is affected, it might be that the person has trouble sequencing, you know, what is a familiar task becomes really much more difficult to do. But of course, there could be damage in the parts of the brain, the frontal lobes, for example, that give us the social rules of behavior, or, you know, a stroke in the occipital lobe, obviously, you know, removing a portion of vision for the person. So it really depends, you know, where that damage is occurring in the brain and to a certain extent, obviously, the type of dementia that the person has.Colm Cunningham:
So Steve is it wrong to sort of talk in generality and be more specific about the type of dementia or are there some overarching common things that affect all people with dementia,Steve MacFarlane:
there are some overarching commonalities calm and even in, you know, the classical types of dementia like Alzheimer's disease, you can get very atypical forms that present, you know, as Holly mentioned, with frontal lobe features, for example, but it's the early stage symptoms of dementia. When we take a history of somebody with cognitive problems that allow us to make our best decision as to what type of dementia it is. As all dementia has progressed towards the very advanced stages, they they congeal into an undifferentiated assortment of cognitive problems as all parts of the brain ultimately become affected.Colm Cunningham:
And Holly, therefore, we're talking now about the importance of getting the right diagnosis. I've often heard from people with dementia including on this podcast, that that isn't always handled well. Have you any particular thoughts on what's important if somebody is feeling that there's changes happening and about how they get support?Holly Markwell:
Yeah, that's an interesting question and one that really does depend to a certain extent on the person's age. If you're you know, if family or your or you are noticing sort of that things are not quite right and you're in your 40s 50s or even 60s, then dementia is often the furthest thing from people's minds. On the other hand, if you're in your 80s, and you are experiencing those changes, then people tend to assume the worst and that you're going to need full time care within six months, even though you might have only just started to display some of those kind of characteristic symptoms. So there are some real challenges there in the level of insight that the person has. And some people and people, of course, will vary incredibly as to how much information they're ready to receive, or read about their diagnosis at any one point in time. So that makes it quite challenging. For some people, they want to know everything and upfront, and they want all that transparency. But for other people, it's an incredibly challenging time. And they really need the information to be chunked into kind of manageable, I guess doses if you like. So it really, I think it is just very much a variable depending on the person, their age, the diagnosis. And but normally people, you know, you would want more transparencySteve MacFarlane:
There is a great difficulty Colm, you're in a bit of a wedge, depending on whether you're old or young about how long it might take you to get a diagnosis when the starting point is usually with your GP. And if you go along in your late 40s complaining of cognitive problems, the usual response is, you know, you're too young to have dementia, don't worry about it. There was a study done in Australia a few years ago that shows that the average delay between people first going to a medical practitioner with concerns about their cognition to their GP, and ultimately getting a diagnosis was somewhere between two or three years. So it really does depend on the receptiveness of the general practitioner to there being the possibility of a cognitive disorder, and making an early referral to somebody who can make the diagnosis.Colm Cunningham:
Steve, I may be asking an impossible question given that we've got an international audience here about how people should go about getting a diagnosis.Steve MacFarlane:
Well, the first the first port of call should always be a GP. Because not all memory and cognitive problems reflect dementia at all. There's important other conditions that can masquerade as dementia. I'm talking about things like anemia and thyroid problems and kidney problems and liver problems, for example, but also anxiety and depression, I see a number of people in my private practice who are concerned about their cognition but actually turned out to be seriously depressed. And those conditions need to be excluded generally before we move down the pathway to getting a dementia diagnosis, but invariably, the GP is the best place to start. But if people are attending the general practitioner, or family physician and don't feel that their concerns are being taken seriously, you can always push for a referral, or to get a second opinion so that the concerns of your family friends and yourself can be appropriately responded to on a diagnosis given as early as possible.Colm Cunningham:
And I suppose one of the things it's interesting because of course you know, the UK well, having been born there while you're now a fully fledged Australian, that next specialist might be different because it's not always the same person that is seen as a diagnosis with depending on the health system you're living in.Steve MacFarlane:
That's right and different people different doctors refer to different types of specialists for different problems. There's any number of different specialist medical practitioners who are well placed to make a diagnosis of dementia and to exclude those differentials for for older persons. For example, a referral and a referral to a geriatrician is often made old age psychiatrists see this as bread and butter as part of their work as well. And often neurologists will also take an interest so there's no shortage of people who can do the work. Apparently, it depends on the preferences of the referring doctor and the patient themselves. Of course, not everybody is keen to see a psychiatrist.Colm Cunningham:
Holly, one of the things that that we're about to jump into is how you treat some of the symptoms and I'm conscious that "My Home, My Life", one of our publications is about thinking about the non pharmacological approaches, I guess, what would be some of the things that you commonly think are useful to help a person live wellHolly Markwell:
I think one of the key things is to really, you know, maintain social relationships. You know, we know that if, you know, if the person is isolated, they're potentially going to experiencing experience those symptoms in in a more severe way. So I think, you know, maintaining social relationships, trying to adapt what the person enjoys and does. You know, often there are very high standard set for you know, past hobbies and, you know, things that the person's enjoyed but trying to find ways to adapt if possible, or, or, or try new things. So, I guess, still maintaining those social connections, which can be difficult obviously, but you know, if Finding ways to actually moderate So for example, if the person previously liked, you know, going out to a, you know, busy city center, it may be that it's more appropriate to go to a smaller, you know, more manageable kind of size shopping center, for example.Colm Cunningham:
And, Steve, when it comes to treatment, people often look to you as a doctor. So what would you say are important things to think about? You've already flagged the importance of treating something that might be getting in the way of the person's functioning like an underlying infection. But when it comes to treatment for dementia, what are the options people have?Steve MacFarlane:
Look, probably the best option con at the current slave of time is preventative treatment. And this is something that all of us can be doing, you know, taking care of your specific dementia risk factors from middle age onwards, for example, so watching your blood pressure, your cholesterol, ensuring you don't develop diabetes, stopping smoking, modifying your diet to a Mediterranean diet is that is the ideal engaging in regular physical exercise. We have no drug that can prevent dementia. But we know that if people address their modifiable risk factors from middle age onward, we could delay the onset of dementia across the population by about five years, which would have the overall prevalence so preventative treatments are far and away the most powerful thing we've got. But to get to the thrust of your question, once you've got a diagnosis of dementia, I think as Holly's alluded to, there's both drug and non drug treatments there are cognitive enhancers, medications that can improve memory and thinking for people with Alzheimer's disease and other forms of dementia. There's also treatments to treat the complications such as anxiety and depressive symptoms, again, both drug and non drug treatments. But much of the importance of getting a diagnosis is to try and give people a bit of power over their future that the treatments that we currently have aren't life changing treatments, even the newest treatments that have been approved are very expensive, unlikely to be available to everybody. So getting an early diagnosis allows people to take on board that education and for their families and carers to take on board the education that will allow them to live as full of life as possible for as long as possible despite having the diagnosis and despite which type of dementia is diagnosed.Colm Cunningham:
And Holly, we talked in the introduction about the fact that today in US dollars 1 trillion is spent on supporting people with dementia we know in our work obviously there are many things we could be doing smarter and better and the way we do that, if we start with the family and friends, what support can they provide to somebody with dementia?Holly Markwell:
I think the the first thing is to to ask the person and find out what what they what they need, the more we know about dementia, the more we realize that we really have to actually just start with where the person is at. So avoid making those assumptions. You know, there's a classic saying of you know, if you get told tell a friend you have cancer, you get a casserole to tell a friend you have dementia, and suddenly they kind of drop off the planet. So be around Don't Don't be frightened about it. You know, learn about dementia. And and you know, ask for how that support is best given.Colm Cunningham:
So Steve, what would be one of your tips in terms of how people might live? Well, because obviously you see people coming to your clinical trials, who are looking at how that will reduce the impact of some of the symptoms. But what are some of your live well tipsSteve MacFarlane:
keep doing what you're capable of doing for as long as possible and try and simplify your life to follow a more predictable routine in most types of dementia Colm, short term memory and new learning are affected early. So people who have well established routines where they're doing largely the same thing predictably day by day, week by week according to a schedule that they've had for some time. They can run on long term memory and almost on autopilot. By doing that. People tend to struggle when new things are thrown at them that require them to adapt or to learn new things or to be more reliant on short term memory. So sticking to a set routine, learning to live within your limitations, but to the maximum that those limitations allow. Maintain hobbies as much as possible. Maintain social connections, keep listening to music, keep socializing, if you're uncomfortable socializing outside the home because that requires learning and adaptation, modify your life to socialize within the home instead in a familiar environment and stick to a familiar routine. Probably the best thing you can do.Colm Cunningham:
And Holly for somebody listening with dementia, what would be some of the Advice any experience you've had of somebody with dementia really taking control of a particular part of their life and it really helping them day to day?Holly Markwell:
Yeah of course. I think as Steve has said, you know, still finding the the ways you know the things that are enjoyable to the person and still keeping connection with those things that is really connection that that makes life worth living. So being able to do that not expecting her you know, to be some sort of, you know, advocate superhero perhaps, but, you know, taking a little bit easy on yourself and not catastrophizing important for family to do this is well, to avoid making those assumptions that you know that everything is things are going to go downhill very quickly. Because often if the person does maintain, you know, the physical activity and social connections and enjoyable, you know, hobbies and pastimes, things that make life meaningful, then wellbeing can be maintained, you know, really, really well. And keeping those familiar routines. as Steve mentioned,Colm Cunningham:
Steve, we're going to have further episodes where we're going to look at specific types of dementia. What do you think is important to our listeners who might follow that in terms of what areas we're going to cover?Steve MacFarlane:
Well, the big five dementia subtypes if you like Colm. I mentioned earlier, there were over 100 different causes of dementia that Alzheimer's disease alone accounts for about 70% of those 100 different causes. But close behind Alzheimer's well a distant second behind Alzheimer's in truth is something called vascular dementia, which is caused by blood vessel narrowing in the brain and mini strokes. As you get older, you're more likely to have a mixed form of dementia that includes both Alzheimer's and vascular features. Another common form of dementia is called Lewy body dementia, which is related to dementia that's associated with Parkinson's disease. There's also a condition called Frontotemporal dementia as well that affects predominantly the frontal lobes so that can have behavioral or language symptoms early on. Those would be the big types of dementia that I think it's important to cover in a podcast series such as this.Colm Cunningham:
Well, Steve, I'm looking forward to continuing those conversations. It's been great to have you back with us and Holly to have you join us for the first time. Thank you so much for joining us today on the dementia podcast.Holly Markwell:
Thanks Colm.Colm Cunningham:
Steve and Holly, it's been a pleasure to have you with us and to kick off such an important area and I realize that we have touched on o many issues of future pisodes of talking dementia ill address. As I said in the how notes will will navigate ou to your national rganization who are so mportant in helping you get the dvice and support you need, articularly with issues of iagnosis. As always, we would ove your feedback, ideas and hallenges so please don't esitate to email us at firstname.lastname@example.org. Thank ou so much for listening and ye for now.