Memory loss after stroke

15 August 2017

Read the transcript below

Memory forms a big part of our understanding of our experiences and our selves. It's also essential on a smaller scale for simply getting through everyday life. And when you've had a stroke it helps you with your ongoing recovery. But memory is also commonly affected by stroke, and for many people this has a big impact.

In this podcast we will talk about what you can do if you're facing memory problems after stroke. Our guests are:

  • Toni Withiel and David Lawson, Monash University neuropsychology doctoral students and stroke survivors.
  • Dr Rene Stolwyk, clinical neuropsychologist from Monash University.
  • Jan Corcoran, stroke survivor from Far North Queensland.
  • Alana Stewart, speech pathologist from StrokeLine.

memory podcast guests sitting at the recording desk 

If you’d like to take part in Monash University’s one-on-one or online memory program, contact David Lawson david.lawson@monash.edu. If you’re in Melbourne and interested in the Monash Memory Skills Group, you can contact Dana Wong at the Monash Psychology Centre in Notting Hill, email dana.wong@monash.edu or phone 03 9902 4188.

You can also find out more about Rene Stolwyk’s research on cognitive and mood rehabilitation after stroke by emailing psych.strokeresearch@monash.edu.

Podcast transcript

Download the transcript

Announcer: Welcome to the EnableMe podcast series where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke.

You can join the conversation at enableme.org.au.

This series is presented by Australia's national Stroke Foundation.

Chris: Memory forms a big part of our understanding of our experiences and our selves. It's also essential on a smaller scale for simply getting through everyday life. And when you've had a stroke it helps you with your ongoing recovery. But memory is also commonly affected by stroke, and for many people this has a big impact. In this podcast we will talk about what you can do if you're facing memory problems after stroke.

Now, we’ve got a bit of a full house today. In the studio we have psychology doctoral students Toni Withiel and David Lawson, both also stroke survivors themselves, as well as one of their supervisors, clinical neuropsychologist Rene Stolwyk. And as well as sharing their knowledge and experience they'll all be telling us about their memory skills and rehabilitation programs that they run out of Monash University.

On the phone we also have stroke survivor Jan Corcoran, who's taken part in the memory program remotely from North Queensland and she'll tell us what it was like and how it helped.

And later on from StrokeLine we have Alana Stewart to give her perspective as a speech pathologist, and the advice that she gives when you call the StrokeLine service.

Thank you for everyone for joining us today.

David: Thanks for having us, yes.

Chris: Now, we'll start with you Jan, which is the way we normally start these podcasts. Could you just tell us briefly your stroke story?

Jan: Well my stroke happened about six weeks after I had a home invasion. And I was at work in the Cairns pathology laboratory and my ear popped, and down I went. And that was sort of the basis of it.

The staff put me into their room, where they take blood, etc. But anyway they got me in their car and took me to the local doctor who never knew me anyway. And he looked after me and I could not keep my eyes open, so he decided he'd better put me in hospital. So I had five weeks and another stroke four days after I went to hospital.

Five weeks in there I did not have a neurologist I had… a gastroenterologist looked after me. And it took five weeks and they still did not make their mind up that, that I had had two strokes. It was confirmed later when I went down to Townsville and saw someone else down there.

So that's briefly the stroke.

Chris: Yeah, what sort of impacts did you have from the stroke?

Jan: Well, both strokes were either side of my cerebellum. Balance, speech was the main one, forgetfulness, words. You name it, I couldn't walk and I couldn't talk properly. It was everything combined.

Chris: Okay, so you said you had some forgetfulness and some problems with the words. How did the memory issues affect your life then?

Jan: I think I just ... I don't really remember, I just lived day by day and I thought I was fine. But obviously I wasn't.

Chris: Yep.

Jan: And I could not even say a sentence for about three years.

Memory ... I was probably so forgetful. I couldn't even work out how to get, say a glass out of the cupboard. If I wanted a certain glass and I saw it four rows back, that was the glass I wanted and forget about anything in front of it, it would just smash.

My memory was tight because I had to basically start, like I suppose, maybe start to learn how to do things all over again.

Chris: Well now to understand I guess what's really going on there, Toni I'm going to ask you to explain the science of memory for us, but as I mentioned in the introduction you are a stoke survivor yourself. Could you tell us a bit of your own story?

Toni: Sure, so I had my stroke when I was 20 years old. It was a month before my 21st birthday. It was after I went to gym, I started feeling a bit weak and then I sort fell on the floor, not realising what had happened. I was quite stubborn at the time, so when my parents came home, I was refusing to go to hospital, saying that I was fine and everything would be okay. But I was taken to Box Hill Hospital, thankfully, and I was given quite acute treatment there, so it was lucky in that it was caught within the first three hour window.

Chris: And from that you've also gone through quite bit of recovery since then. How has that affected your own research interests?

Toni: I was always interested in neurological conditions including stroke, but I guess it's really reinforced by passion to help, particularly in young stroke survivors. And to be able to provide better care and treatment for young people who suffer a stroke. And I think, coming from my experience being on the other end where I wasn't old, I didn't fit any of the characteristic stereotypes of a stroke and seeing how that affected people around me and myself, and wanting to sort of change that perception.

Chris: So we're talking about memory today. Now it is a very complex subject, is it possible to give a brief overview for everyone to have a basic understanding of how it works?

Toni: Yes absolutely.

So, as you say memory is an extremely complex part of the brain and a part of our functioning, and memory's actually not one thing. When we talk about memory we talk about a number of different systems that all work together. So for example, remembering how to ride a bike and play an instrument is very different to remembering to take medication or attend a doctor's appointment. So certain systems are more vulnerable to the impacts of a stroke.

Many listeners may still be able to remember how to ride a bike but may have more difficulty remembering people's names.

And when we think about how memories are formed in the brain we often like to refer to an analogy of a filing cabinet, where our brain is a filing cabinet and in that filing cabinet there are a number of different files, which represent different memories that we hold.

When we form a new memory or how memory works, the first step is getting the file into memory, so actually physically storing or getting memory ready for storage through a process that we call encoding. Once that memory is in our filing cabinet it's then stored for a period of time until we need it again. And that's just simply a process of storage, and when we're ready to recall it or we want it back in our conscious awareness, we need to then find that file from our filing cabinet. Get it out and bring it back to that awareness through a process called retrieval.

So after stroke any one of these processes can be impacted, it can be one or it can be a combination of them that ultimately lead to what people experience in an everyday basis.

We also see a distinction between the side of the brain where the stroke occurred and what types of memories we're forgetting. So for people who have a stroke on the left side of the brain, often our memory loss can be more around language and conversations. While people who have a stroke on the right side of the brain it can be more spatial things, for example directions to places and things like that.

Chris: Okay.

Toni: That's a very brief overview.

Chris: That is a good starting point. I'm sure we'll have a few more questions to clarify on that.

Well I might go to you now, David. Now you're also a stroke survivor but you've had a longer journey to get to where you are at the moment with the current studies.

When did you have your stroke?

David: My stroke was more than 20 years ago now. I was 19 at the time.

Yeah I was living out of home and I felt well. I knew I had a problem with high blood pressure, but I don't think, thinking back now, that I really appreciated the importance of compliance with medication. I felt pretty well. I felt pretty invincible.

Yeah so, there was a night that I was just watching Wimbledon and eating pizza with a mate and I got pins and needles down one side. I had no idea what was going on and I realise now that I was having a parietal haemorrhage and that put me in an induced coma for 12 or 13 days and I woke up with a fairly dense hemiplegia, so paralysis down my right side and I was unable to speak. I was in inpatient rehab after that for about three-and-a-half, four months.

Chris: David, when people talk about memory problems after a stroke, it often seems to be the short term memory that has the biggest impact. Why is that in particular?

David: Well, really if you kind of consider what Toni was saying about all the different kind of functions that are involved in and implicated in the function of memory. We know that every stroke is different, it can occur in lots of different areas of the brain, in different ways to different severities. So in that respect it's kind of like a fingerprint. Every stroke can be unique.

And if you think of all the different kinds of strokes that you can have, and all the different parts of the brain that can be involved in that stroke, all the different thinking skills that can be damaged. Yeah, it involves ... you end up with a huge amount of combinations.

If you take Toni's filing cabinet idea, yeah the brain structures involved in thinking skills, like attention and processing speed, if there's damage to those systems that can make it very difficult for information to be taken in, or to organise the information quickly or efficiently enough.

And a different kind of stroke could damage, you know hippocampal regions. So the hippocampus is really important for the transference of short term to long term memory or the storage of memory. In terms of the filing cabinet, that's just kind of those files not being stored in that filing cabinet. So while the root of the problem could be one of, or several of a huge range of different fundamental ways that stroke can affect the brain, a lot of those can have this knock-on effect to memory.

That's what people notice, is that end result. So the root of the problem could be anything but, what people notice is that end result, which is “I've forgotten my appointment” or “I can't remember the name of that person that I met a few minutes ago”. And as a neuropsychologist I think it's really important that we get a comprehensive assessment of memory and cognition, so you really understand the nature of the memory deficit if there is a memory problem. So you know what you're working with and in that way rehab can be a little more targeted.

Chris: I understand ... well I imagine that there are some other factors that you need to take into account then as well such as fatigue, is one in particular would have a bit of an effect.

Toni, I believe you had a bit of fatigue after your stroke. So can you explain what fatigue has to do with memory issues?

Toni: Sure, so fatigue is a very common issue people face after stroke and it can be quite debilitating. In my experience in particular it really limits what you can do on a daily basis, and that effect is not only what you can do but also what you can take in and how you can remember things.

So when we're fatigued often we're feeling a little bit sluggish, a little bit slow. A bit like there's a cloud hanging over our heads. And when that happens, that really impacts what we can take in from in our environment and that – speaking to David again – that impacts the process of getting that information into our memory store, so that process of encoding. If we're not able to attend to that information in the environment it won't be there later when we have to remember it.

So fatigue is a big barrier and has a big impact on our ability to remember things later on. In saying that though, there are a number of important ways that we can manage our fatigue and that we can reduce its impacts on a daily basis. So if we think of energy as almost like a battery store, after a really good night’s rest you probably have about 100% battery and as the day goes on your battery store will gradually get lower and lower.

So things that you can do to make sure that you're still operating at a range where you're able to take in and respond to things in the environment. And they include things like taking rest breaks where you think are appropriate, so not pushing yourself to the point where there's no coming back from that level of work or that level of input.

Also, things like spacing really complicated tasks. If you have a task that's quite difficult or you have a lot of elements that are involved, really breaking that down and pacing yourself through that process. By doing that you're reducing that cloud or the likelihood of that drowsy feeling I guess, and you're more likely to improve your memory performance. I'm sure everybody has noticed, irrelevant of whether they've had a stroke or not, that when you're tired you're more likely to forget things on that day.

And there's also some new, novel, exciting research that's looking at a way of managing fatigue through a behavioural therapy approach. So it’s called cognitive behavioural therapy. And this approach provides helpful behavioural strategies to help manage sleep patterns and activities to conserve that battery or to conserve your energy.

For instance by focusing on the pacing of tasks, like I said, as well as integrating breaks into activities and a few other strategies around maintaining good sleep habits.

Chris: I suppose this does show how memory is tied up to these other issues of recovery, like with fatigue.

Now Rene, you have many years of history, I think, in stroke rehabilitation and neuropsychology and that part of that.

Can you tell us a bit about what people can expect during their recovery? Should they expect their memory to improve from its initial state or will it stay the same or potentially get worse?

Rene: Well, I guess just what David was saying before in terms of types of memory problems after stroke, actually people are really individual in terms of their recovery patterns following stroke.

Usually what we see is within the first three to six months after stroke, you do see improvement and that really is in line with the neuronal recovery of the brain. There's a lot of recovery early on, particularly within those first few months. Historically they didn't think there was much neuronal recovery in the brain, but now we know that actually there's lot more than we originally thought.

Chris: What do you mean by that, neuronal recovery?

Rene: So when you have a stroke, you have, obviously an infarct in the brain, which is an area of cell death. But – and when I'm talking about neuronal recovery I'm talking about in those first few weeks and months – there is actually some regeneration, particularly in terms of connections between brain cells and actually restoration of some of those functional networks within the brain. And some of those functional networks are involved with attention and memory. So we do see this neuronal recovery.

Chris: Okay.

Rene: And that’s talking about within the first three to six months. Beyond that though, people also experience quite significant recovery. Maybe due less to actual neuronal regeneration. People learning to manage their memory problems in a lot more efficient and adaptive ways. So learning to use a range of rehabilitation strategies, which I think we might talk about a little bit later. There's that kind of improvement long term as well.

As I said it's very individual, some people might experience maybe not so much in terms of improvement. Some people actually may experience some decline. And it's probably worth having a chat about, because that's probably of some concern.

It wouldn't really fit ... if someone does experience, maybe a decline in their memory, that's a bit of a red flag that something is maybe going on and there's a lot of factors that might cause that. Some of them might be kind of psychological. So that's a common one. If someone is experiencing depressed mood or anxiety, we know that mood can really impact on cognitive function, particularly memory. So that's one reason why someone might experience a decline.

Poor sleep, there's a whole range of psychological and lifestyle factors that can impact on memory. So that's something, if you are experiencing a decline in your memory after stroke, that's something that you'd probably want to check out with a GP or a psychologist or someone within your rehabilitation team.

Chris: Is there any connection between stroke and dementia? Because that's of course the other big fear with memory loss.

Rene: Yeah and I've come across a lot of patients that have seen me, maybe a few weeks, few months after their strokes saying, "Hey look, I've got these memory problems, I'm really scared I've got dementia." I guess the important thing to realise is that those two things are very, very different. So stroke is usually a one-off event where there's damage to the brain, whereas dementia is an umbrella term that refers to a progressive degeneration of brain structure and brain function.

And dementia is actually an umbrella term for a number of different pathologies. So you've got Alzheimer's disease, vascular dementia and these other types of dementias as well.

I guess a really important message to get out there is that just because you've had a stroke doesn't mean you'll get dementia. And if you have memory problems after stroke that doesn't mean it's dementia as well. A lot of people have memory problems after stroke due to the stroke, it's not so much a dementia process.

The question that I often get is, am I at higher risk of getting dementia because I've had stroke? And unfortunately, yeah, the risk is a little bit higher. It is higher for people that have had a stroke. A major factor behind that, I think though, is that the risk factors for both stroke and dementia, some of them are very common. So if you think about all those cardiovascular risk factors of hypertension, high cholesterol, they're similar risk factors.

The one type of dementia that people with stroke are particularly at risk at, is what's called vascular dementia. And without getting into too much detail, that's often due to people having numerous strokes, what's called multi-infarct dementia, which is people having a number of strokes over time, which is causing progressive neuropathology over time.

What would make you concerned that you do have vascular dementia? It's again that noticing deterioration over time of your cognitive functions, or maybe some behavioural changes. Again everyone with stroke, and even people with vascular dementia, are very different. Depending on where that damage is in the brain, people will look very different.

So again if you're any experiencing any decline in function after a stroke, it's something that you do really want to get to seek help.

In terms of preventing, even though your risk is higher, it's important to think about how to prevent or minimise your risk of getting dementia, and it's really about controlling those risk factors, the cardiovascular risk factors.

And in recent years, also we’ve realised the importance of keeping active, really the importance of a good diet, getting enough sleep, getting enough exercise, looking after yourself, social interaction. All those strategies are really helpful in terms of preventing and lowering your risk of the future dementia or cognitive decline.

Chris: Great. That's a fairly positive outlook there. I think.

Let's talk about some other things that can be done to help. Now I imagine, though with all the work that people like yourselves are doing that it has changed a lot over the years. David, given that your stroke was over 20 years ago, what was cognitive rehab and that sort of rehabilitation like when you had your stroke?

David: Certainly, when I was rehab the focus was understandably on movement and physical functions and learning how to walk again and you know, the focus was getting me talking again and teaching me how to make breakfast for myself.

But yeah, I think there has been a change. I don't remember anything around that time about rehabilitation of cognitive functions or thinking skills. Particularly things like memory are really important for quality of life. But I remember after my period of formal rehabilitation, yeah, there certainly wasn't anything for me to go on to, focussed on those thinking skills. And I think a lot of those problems from thinking skills don't really emerge to their full extent until someone goes home.

While you're an inpatient in a hospital, happen for you a lot. There's ... meals appear and nurses tell you when you've got an appointment, or people come and see you. You're surrounded by schedules and spreadsheets, and all of that is managed by other people. So to an extent a lot of your thinking skills are being outsourced to other people. It's not until you go home and you're having to rely on your own thinking skills again that ... you know a lot of people go back to work, the people who can. That's when changes in thinking skills really come to the fore and make you realise that there has actually been a change.

So while 20 years ago I don't believe there was the recognition that there is now on cognitive rehabilitation, I think that we are moving in that direction. Things like memory, those kind of problems with those kind of skills can be a bit of hidden disability. You know, it's very easy to see if someone is not being able to walk the way they could, or there's an impact to speech that you can hear, but being able to, or having a problem with your memory is not as obvious to other people. So it can be a bit of a hidden disability and some people may not understand really what's happening for them to the same extent.

These days there is a growing body of research about cognitive rehabilitation, thankfully, and some of that research has actually fed down into rehab services for the community. Some of the work that we do with some memory rehab programs are evidence of that. But there's still a pretty big gap between what we understand about the prevalence of cognitive problems after stroke and what is available in terms of rehab services in the community.

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Chris: Okay look, this might be a good point to ask Jan about her experiences with the program. I imagine you've gone through a fair bit now with the Monash memory program. Can I first ask how did you find out about it?

Jan: Well first of all I found it out through EnableMe. I did see it and I think they were doing face-to-face interview, but I did apply for it and send off and inquire that I was interested if they did it basically online. But I can refer to, Chris, I can refer to David and Toni, Rene, all about what they've said about the cloud, the fatigue.

In my case I had about 12 months rehab part-time and my memory ... and the biggest thing was the cloud and not thinking of anything. My brain felt like it was hollow and when I saw this I thought this may be of some help.

I took three years to be able to even say a sentence. Put a sentence together for me. But it was through EnableMe, the new website for stroke survivors and families, etc. And I think it's one of the best things out, because it's helped so many, and already I've handed it out to someone today, it's a little flyer from EnableMe. That's where I found out about it and then I think David might have given, I can't remember who, but someone did ring me from Monash to say would I be interested in doing it online? So I did.

Chris: And you found it's helped you a lot?

Jan: Well, to start with I thought I'd be embarrassed by doing it, I'd be stupid or whatever. Not stupid, that's probably not the right word. But silly doing it, because to me I was pretty hopeless to be able to get my thoughts together and it sort of... Since basically starting, my negative thoughts started to turn into positives and David and Chantal, I think it was, put me at ease. Especially with David with his Monash MSHS or something qualtrics, who sent out surveys to do every week.

But I learnt so much, the new words and skills, but most importantly I learnt strategies. As, I think, Toni said it was about the retrieval in the brain. And I also learnt about the hippocampus, though I did refer to it as the hippopotamus, because that's what it felt like.

It has done so much to me, to help things, improve my memory. My speech is still not perfect because I'm tired today and I apologise about that. I have to concentrate to talk to you guys. But it taught me new skills, how to look after myself better and to... Instead of being able to only do one thing at a time I can actually do two things at a time now if need be. The actual program itself has helped me so much, and it was like waking up, like I'd a bolt of lightning or something going into my brain.

It’s just doing things like remembering. The safety box, David taught me about a safety box, which I still use. The safety box. Put everything into the box and you won't lose it. And you look in the box or you set up an app. You have apps if you need them, and keep a diary. But I write down everything basically if it's important and I've now got my own little way of doing things with a whiteboard, and putting appointments on and things like that. I am remembering, whereas I didn't before unless I'd written it down. But then I'd lose it, where I put it, because I'd put it in a safe place and never find it.

Chris: So David and Toni, what other strategies and tips do you supply people as part of this program?

Toni: Sure. So there are a number of strategies taught or we have gone through in the memory skills group and we broadly group these into internal and external strategies.

So internal strategies are those where we modify our approach to task within our own minds. And a good example of that is, people find it helpful, or can find it helpful to associate something new to be remembered or learnt, with something that's a little bit more familiar to them. So for example if you're trying to remember my name, Toni. It might be a bit easier for you if you could associate that with a Toni that you're familiar with, somebody from childhood or somebody else that you know. So building that link between something that’s familiar and something that's unfamiliar really strengthens your ability to recall that new memory.

The other side of that is the external strategies. So they're things that we can modify in our environment to help support our memory. Jan mentioned a few of those ones, they include things like the whiteboards and diaries. More importantly, well becoming more prevalent, are smartphones and smartphone applications. So there are a number of really great smartphone apps, including calendars and electronic notes, that can be really helpful in taking that pressure off the memory system, so really outsourcing that to something that's in the environment.

Chris: Okay. Those are organising apps. I suppose the other kind of apps and computer things that come to mind when we think about memory, is your brain training games and that sort of thing. Do they help, are they any use to people?

Toni: So, currently as it stands there is no evidence to support the effect of brain training games in improving our thinking skills. So there's evidence from my study that we've just finished analysing, as well as an existing body of research, that seems to point to the fact that anybody who plays these games tends to get better at them in the way that we get better at anything that we do quite repetitively. But that improvement doesn't transfer or generalise to real world every day improvement.

For example participants in my study, they did improve in the games that we got them to play in the memory set of games, but overall they didn't report that there was a change or an improvement in their functional memory. And that's a common thread that's coming out from the brain training research area. But in saying that a lot of people do enjoy playing the games and they feel like it does give them something to do and they're quite engaging and interactive. And if that is the case, by all means continue to play them, but I guess having that understanding that it's not a miracle solution, or that they're not going to improve your memory necessarily.

Chris: David, I understand the program is being run remotely as a telehealth trial. Can you explain what that is and how people can get involved in it if they're interested?

David: Yeah, absolutely. Before I do I'd just like to say how encouraging it is to hear how much Jan got out of this program and yeah, that's kind of really positive to hear and I'm so pleased that Jan got so much to change her life.

Jan: I'm just going to say, it did change my life, because it took 18 years and I still learnt something new.

David: Even this long later after a stroke there's still potential for change.

Just as a little bit of background, if that's alright, about my study. At the heart of it is a program called the Monash Memory Skills Group and that's led by Dr Dana Wong at the Monash Psychology Centre in Notting Hill in Melbourne. And that's a six week course in memory skills and that's designed for people with an acquired brain injury to get together in a group that's supportive and social. To share that rehabilitation experience.

So the course is one, two hour session each week and it covers a lot of the strategies that Toni just mentioned in terms of internal mental strategies and ideas to support your memory functioning, using tools in your environment as effectively as you can. It includes information about how memory works and how it's impacted by stroke, or brain injury in cases of the group.

And all of these other lifestyle factors as well, like sleeping fatigue, and diet and exercise and managing stress. All of those have a contribution and a potential impact on the way memory operates. So, which is great... You know it's a fantastic program and it's really good for people who have access to it. That brings me to my study, which is about the fact not everyone has access to a great program like this.

You know, there's a lot of people who have memory issues after stroke but they might live in a country town or a regional or rural area, you know they don't have the same local services to sign up to. But even in the city, our stroke community, there's a lot of us who have impacts to how easy it is that we can get around and how easy we can travel in our community. So a lot of people find it a little bit more difficult to get out of the house to access a program like this.

So for the program that I'm running we've adapted that Monash Memory Skills Group for a one-on-one setting. Some people also find it a little bit difficult to be a group setting. And also for delivery over the internet, so using a program that's very similar to Skype, I think a lot of people are very familiar with that. So we're delivering this program over the internet and we're measuring the benefit that people get out of that program, whether it's face to face or over the internet.

Yeah so we hope to ultimately, provide evidence that there is programs like this that can be provided to people with limited access to other things.

Chris: So people are able to get in touch with you if they want to be part of this?

David: Absolutely, yeah.

Certainly for my study, that's the one-on-one or the internet delivery of the program, absolutely get in touch with me. My email is probably best, which is david.lawson@monash.edu.

Of course if you are in Melbourne and you're interested in the Monash Memory Skills Group, yeah I think it’s just a matter of getting in touch with Dana Wong at the Monash Psychology Centre in Notting Hill in Melbourne.

I should mention as well that as part of a research program, the program one-on-one with me is free of charge. So that's a positive as well.

Chris: Great.

And Rene, I understand your lab does cognitive assessments and that sort of thing as well?

Rene: Yeah absolutely. So we have, in our lab we really specialise our research in terms of rehabilitation of a range of cognitive and mood issues after stroke and are always looking for people to participate in our research.

So if anyone out there is interested in participating in some of our research, looking at cognitive and mood rehabilitation after stroke, they can get in contact with us too. Our email is: psych.strokeresearch@monash.edu.

Chris: Great. Well look we'll put all those links up on our website. I encourage everyone to go to the podcast page on EnableMe website for these contact details. There is also a transcript of our conversation we've just had, so that you can read all the advice in case you can't remember it all.

Look, thank you all for coming in. I think we've run out of time now. So yeah, thank you to Jan Corcoran in Queensland and Toni Withiel, David Lawson and Rene Stolwyk.

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Chris: Right, and finally today we have speech pathologist Alana Stewart from StrokeLine. Thanks for joining us again, Alana.

Alana: Thanks for having me Chris.

Chris: Now do you speak to many people on StrokeLine with memory problems affecting their life?

Alana: We do, we speak to a lot of stroke survivors and a lot of their partners, husbands and wives, family and friends, who are observing that person struggle with their memory difficulties and they're also feeling the impact of that themselves as well.

Chris: And how does it affect some practical things, like returning to work and that sort of stuff?

Alana: Memory can, I guess like all of our speakers have touched on so far, affects day-to-day tasks, such as things like remembering to take medication or remembering to eat breakfast in the morning or what time you need to catch the bus. And when you experience those difficulties in a work setting, you've got to think about the impact that that has on attendance at meetings, remembering notes that you need to jot down, or telephone numbers, or the names of people that you meet, can have a big impact on your productivity and your enjoyment at work. When you add things like fatigue, difficulty concentrating on top of that it can be a really challenging time for stroke survivors.

That's when looking at a return to work programme that may encompass a staged return, or a return at reduced hours, is a really good workaround because you can see how am I coping in this situation, do I need to implement some new memory strategies, and what might they be and are they effective.

Chris: Okay would that involve working with occupational therapists? Or would it be looking at, say, a neuropsychologist like our previous guests.

Alana: So the short answer would be both.

Like Rene was saying earlier, every stroke survivor is different and every memory difficulty is very individualised as well. So when we get callers through to StrokeLine we are recommending that they see a neuropsychologist if that service is available to them. An occupational therapist is normally more accessible in most community settings, and we can talk people through that referral pathway.

The occupational therapist and or neuropsychologist can really help with that return-to-work plan and can support you through that transition period.

Chris: Okay. Now you are a speech pathologist, so I just wanted to ask you too what is the connection between memory and language problems after stroke?

Alana: So both Toni and David were talking about difficulties recalling people's names or remembering words, and I think stroke survivors would be quite familiar with the term word-finding difficulties, which many stroke survivors experience as do all of us. No matter whether we've had a stroke or not.

That ability to recall and retrieve that word from the language centre of the brain can be impaired after a stroke. We can also find that we repeat a conversation or tell a story that we've already told before and it's often... It can be frustrating for friends and family who will give the feedback, "You've already told me that story." And the person has no memory of that. So it can have an impact on relationships most definitely.

Chris: Okay. So then, what would be the top tips that you would give to people regarding their memory issues?

Alana: So, I love some of the strategies that Jan gave. You know, using a diary, using these external memory aids that work best for you.

Creating a routine is a really great idea, so having some kind of predictability around what you do at certain points in the week, at particular times, where do you put the keys every time you get home, do they go on the hook by the door. Just setting up some level of predictability so that you can rely on that and fall back into that pattern.

Ring StrokeLine and we can definitely help you out with some tips as well. Using an iPhone, we spoke briefly about the use of applications and things now, where you can take notes electronically.

Chris: Yeah.

Alana: You can set reminders on your calendar. Set an alarm to say take medication. Use something like a dosette box where your medicine's organised for the week.

And I guess, speaking about medication I would like to add that memory difficulties can definitely put a person... It can put their safety at risk, particularly when something like medication is involved. So not only a person remembering to take the medicine or not, but also if they've already taken it they're at risk of doubling up on the dose. And then there's a risk around safety with things like fire. So, leaving the oven or the iron on when the person leaves the house.

So that's particularly concerning for us and we would be working with that person and their carer or their support network around supervising that person and linking them into these memory services that Rene, Toni and David spoke about earlier.

Chris: Fantastic. Okay, anything else, any other advice you want to add there?

Alana: I’d just say as always, stay active, eat well, sleep well. You know, I think if you listen back to a number of our podcasts those themes really flow through and underline a lot of these post-stroke difficulties. And we know that if a person's mood is good, that they're well supported by friends and family, they're sleeping well and eating well, that these strategies and rehab programs are much more likely to be effective.

Chris: Yeah, it sounds like those, as you said it's a common theme affecting our recovery but also quality of life and general outlook as well.

Alana: Most definitely.

Chris: Fantastic. Well thank you very much Alana.

Well if you do need to find out more you can speak to a health professional on StrokeLine by calling 1800 787 653 or 1800 STROKE. And of course through EnableMe you can also ask your question and get a response from health professionals and other stroke survivors.

And that is it for today. If you like what you've heard, please give us a good rating and review on iTunes as that will help other people to find our podcast.

Thank you once again to all our guests, we've had Jan Corcoran, Toni Withiel, David Lawson, Rene Stolwyk and Alana Stewart.

Announcer: That's all from today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in the series at our website: enableme.org.au

It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. We also have health professionals from StrokeLine who can answer your questions and give evidence-based advice.

The advice given here is general in nature and you should discuss your own personal needs and circumstances with your health professional. If you would like to suggest a topic or provide feedback, contact us via the website enableme.org.au.

The music in this podcast is “Signs” by stroke survivor Antonio Iannella and his band The Lion Tamers. It was recorded at Antonio's studio, which you can find out more about at www.studiofour99.org.au.

This EnableMe podcast series is produced by the national Stroke Foundation in Australia.

Memory loss after stroke

15 August 2017

Read the transcript below

Memory forms a big part of our understanding of our experiences and our selves. It's also essential on a smaller scale for simply getting through everyday life. And when you've had a stroke it helps you with your ongoing recovery. But memory is also commonly affected by stroke, and for many people this has a big impact.

In this podcast we will talk about what you can do if you're facing memory problems after stroke. Our guests are:

  • Toni Withiel and David Lawson, Monash University neuropsychology doctoral students and stroke survivors.
  • Dr Rene Stolwyk, clinical neuropsychologist from Monash University.
  • Jan Corcoran, stroke survivor from Far North Queensland.
  • Alana Stewart, speech pathologist from StrokeLine.

memory podcast guests sitting at the recording desk 

If you’d like to take part in Monash University’s one-on-one or online memory program, contact David Lawson david.lawson@monash.edu. If you’re in Melbourne and interested in the Monash Memory Skills Group, you can contact Dana Wong at the Monash Psychology Centre in Notting Hill, email dana.wong@monash.edu or phone 03 9902 4188.

You can also find out more about Rene Stolwyk’s research on cognitive and mood rehabilitation after stroke by emailing psych.strokeresearch@monash.edu.

Podcast transcript

Download the transcript

Announcer: Welcome to the EnableMe podcast series where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke.

You can join the conversation at enableme.org.au.

This series is presented by Australia's national Stroke Foundation.

Chris: Memory forms a big part of our understanding of our experiences and our selves. It's also essential on a smaller scale for simply getting through everyday life. And when you've had a stroke it helps you with your ongoing recovery. But memory is also commonly affected by stroke, and for many people this has a big impact. In this podcast we will talk about what you can do if you're facing memory problems after stroke.

Now, we’ve got a bit of a full house today. In the studio we have psychology doctoral students Toni Withiel and David Lawson, both also stroke survivors themselves, as well as one of their supervisors, clinical neuropsychologist Rene Stolwyk. And as well as sharing their knowledge and experience they'll all be telling us about their memory skills and rehabilitation programs that they run out of Monash University.

On the phone we also have stroke survivor Jan Corcoran, who's taken part in the memory program remotely from North Queensland and she'll tell us what it was like and how it helped.

And later on from StrokeLine we have Alana Stewart to give her perspective as a speech pathologist, and the advice that she gives when you call the StrokeLine service.

Thank you for everyone for joining us today.

David: Thanks for having us, yes.

Chris: Now, we'll start with you Jan, which is the way we normally start these podcasts. Could you just tell us briefly your stroke story?

Jan: Well my stroke happened about six weeks after I had a home invasion. And I was at work in the Cairns pathology laboratory and my ear popped, and down I went. And that was sort of the basis of it.

The staff put me into their room, where they take blood, etc. But anyway they got me in their car and took me to the local doctor who never knew me anyway. And he looked after me and I could not keep my eyes open, so he decided he'd better put me in hospital. So I had five weeks and another stroke four days after I went to hospital.

Five weeks in there I did not have a neurologist I had… a gastroenterologist looked after me. And it took five weeks and they still did not make their mind up that, that I had had two strokes. It was confirmed later when I went down to Townsville and saw someone else down there.

So that's briefly the stroke.

Chris: Yeah, what sort of impacts did you have from the stroke?

Jan: Well, both strokes were either side of my cerebellum. Balance, speech was the main one, forgetfulness, words. You name it, I couldn't walk and I couldn't talk properly. It was everything combined.

Chris: Okay, so you said you had some forgetfulness and some problems with the words. How did the memory issues affect your life then?

Jan: I think I just ... I don't really remember, I just lived day by day and I thought I was fine. But obviously I wasn't.

Chris: Yep.

Jan: And I could not even say a sentence for about three years.

Memory ... I was probably so forgetful. I couldn't even work out how to get, say a glass out of the cupboard. If I wanted a certain glass and I saw it four rows back, that was the glass I wanted and forget about anything in front of it, it would just smash.

My memory was tight because I had to basically start, like I suppose, maybe start to learn how to do things all over again.

Chris: Well now to understand I guess what's really going on there, Toni I'm going to ask you to explain the science of memory for us, but as I mentioned in the introduction you are a stoke survivor yourself. Could you tell us a bit of your own story?

Toni: Sure, so I had my stroke when I was 20 years old. It was a month before my 21st birthday. It was after I went to gym, I started feeling a bit weak and then I sort fell on the floor, not realising what had happened. I was quite stubborn at the time, so when my parents came home, I was refusing to go to hospital, saying that I was fine and everything would be okay. But I was taken to Box Hill Hospital, thankfully, and I was given quite acute treatment there, so it was lucky in that it was caught within the first three hour window.

Chris: And from that you've also gone through quite bit of recovery since then. How has that affected your own research interests?

Toni: I was always interested in neurological conditions including stroke, but I guess it's really reinforced by passion to help, particularly in young stroke survivors. And to be able to provide better care and treatment for young people who suffer a stroke. And I think, coming from my experience being on the other end where I wasn't old, I didn't fit any of the characteristic stereotypes of a stroke and seeing how that affected people around me and myself, and wanting to sort of change that perception.

Chris: So we're talking about memory today. Now it is a very complex subject, is it possible to give a brief overview for everyone to have a basic understanding of how it works?

Toni: Yes absolutely.

So, as you say memory is an extremely complex part of the brain and a part of our functioning, and memory's actually not one thing. When we talk about memory we talk about a number of different systems that all work together. So for example, remembering how to ride a bike and play an instrument is very different to remembering to take medication or attend a doctor's appointment. So certain systems are more vulnerable to the impacts of a stroke.

Many listeners may still be able to remember how to ride a bike but may have more difficulty remembering people's names.

And when we think about how memories are formed in the brain we often like to refer to an analogy of a filing cabinet, where our brain is a filing cabinet and in that filing cabinet there are a number of different files, which represent different memories that we hold.

When we form a new memory or how memory works, the first step is getting the file into memory, so actually physically storing or getting memory ready for storage through a process that we call encoding. Once that memory is in our filing cabinet it's then stored for a period of time until we need it again. And that's just simply a process of storage, and when we're ready to recall it or we want it back in our conscious awareness, we need to then find that file from our filing cabinet. Get it out and bring it back to that awareness through a process called retrieval.

So after stroke any one of these processes can be impacted, it can be one or it can be a combination of them that ultimately lead to what people experience in an everyday basis.

We also see a distinction between the side of the brain where the stroke occurred and what types of memories we're forgetting. So for people who have a stroke on the left side of the brain, often our memory loss can be more around language and conversations. While people who have a stroke on the right side of the brain it can be more spatial things, for example directions to places and things like that.

Chris: Okay.

Toni: That's a very brief overview.

Chris: That is a good starting point. I'm sure we'll have a few more questions to clarify on that.

Well I might go to you now, David. Now you're also a stroke survivor but you've had a longer journey to get to where you are at the moment with the current studies.

When did you have your stroke?

David: My stroke was more than 20 years ago now. I was 19 at the time.

Yeah I was living out of home and I felt well. I knew I had a problem with high blood pressure, but I don't think, thinking back now, that I really appreciated the importance of compliance with medication. I felt pretty well. I felt pretty invincible.

Yeah so, there was a night that I was just watching Wimbledon and eating pizza with a mate and I got pins and needles down one side. I had no idea what was going on and I realise now that I was having a parietal haemorrhage and that put me in an induced coma for 12 or 13 days and I woke up with a fairly dense hemiplegia, so paralysis down my right side and I was unable to speak. I was in inpatient rehab after that for about three-and-a-half, four months.

Chris: David, when people talk about memory problems after a stroke, it often seems to be the short term memory that has the biggest impact. Why is that in particular?

David: Well, really if you kind of consider what Toni was saying about all the different kind of functions that are involved in and implicated in the function of memory. We know that every stroke is different, it can occur in lots of different areas of the brain, in different ways to different severities. So in that respect it's kind of like a fingerprint. Every stroke can be unique.

And if you think of all the different kinds of strokes that you can have, and all the different parts of the brain that can be involved in that stroke, all the different thinking skills that can be damaged. Yeah, it involves ... you end up with a huge amount of combinations.

If you take Toni's filing cabinet idea, yeah the brain structures involved in thinking skills, like attention and processing speed, if there's damage to those systems that can make it very difficult for information to be taken in, or to organise the information quickly or efficiently enough.

And a different kind of stroke could damage, you know hippocampal regions. So the hippocampus is really important for the transference of short term to long term memory or the storage of memory. In terms of the filing cabinet, that's just kind of those files not being stored in that filing cabinet. So while the root of the problem could be one of, or several of a huge range of different fundamental ways that stroke can affect the brain, a lot of those can have this knock-on effect to memory.

That's what people notice, is that end result. So the root of the problem could be anything but, what people notice is that end result, which is “I've forgotten my appointment” or “I can't remember the name of that person that I met a few minutes ago”. And as a neuropsychologist I think it's really important that we get a comprehensive assessment of memory and cognition, so you really understand the nature of the memory deficit if there is a memory problem. So you know what you're working with and in that way rehab can be a little more targeted.

Chris: I understand ... well I imagine that there are some other factors that you need to take into account then as well such as fatigue, is one in particular would have a bit of an effect.

Toni, I believe you had a bit of fatigue after your stroke. So can you explain what fatigue has to do with memory issues?

Toni: Sure, so fatigue is a very common issue people face after stroke and it can be quite debilitating. In my experience in particular it really limits what you can do on a daily basis, and that effect is not only what you can do but also what you can take in and how you can remember things.

So when we're fatigued often we're feeling a little bit sluggish, a little bit slow. A bit like there's a cloud hanging over our heads. And when that happens, that really impacts what we can take in from in our environment and that – speaking to David again – that impacts the process of getting that information into our memory store, so that process of encoding. If we're not able to attend to that information in the environment it won't be there later when we have to remember it.

So fatigue is a big barrier and has a big impact on our ability to remember things later on. In saying that though, there are a number of important ways that we can manage our fatigue and that we can reduce its impacts on a daily basis. So if we think of energy as almost like a battery store, after a really good night’s rest you probably have about 100% battery and as the day goes on your battery store will gradually get lower and lower.

So things that you can do to make sure that you're still operating at a range where you're able to take in and respond to things in the environment. And they include things like taking rest breaks where you think are appropriate, so not pushing yourself to the point where there's no coming back from that level of work or that level of input.

Also, things like spacing really complicated tasks. If you have a task that's quite difficult or you have a lot of elements that are involved, really breaking that down and pacing yourself through that process. By doing that you're reducing that cloud or the likelihood of that drowsy feeling I guess, and you're more likely to improve your memory performance. I'm sure everybody has noticed, irrelevant of whether they've had a stroke or not, that when you're tired you're more likely to forget things on that day.

And there's also some new, novel, exciting research that's looking at a way of managing fatigue through a behavioural therapy approach. So it’s called cognitive behavioural therapy. And this approach provides helpful behavioural strategies to help manage sleep patterns and activities to conserve that battery or to conserve your energy.

For instance by focusing on the pacing of tasks, like I said, as well as integrating breaks into activities and a few other strategies around maintaining good sleep habits.

Chris: I suppose this does show how memory is tied up to these other issues of recovery, like with fatigue.

Now Rene, you have many years of history, I think, in stroke rehabilitation and neuropsychology and that part of that.

Can you tell us a bit about what people can expect during their recovery? Should they expect their memory to improve from its initial state or will it stay the same or potentially get worse?

Rene: Well, I guess just what David was saying before in terms of types of memory problems after stroke, actually people are really individual in terms of their recovery patterns following stroke.

Usually what we see is within the first three to six months after stroke, you do see improvement and that really is in line with the neuronal recovery of the brain. There's a lot of recovery early on, particularly within those first few months. Historically they didn't think there was much neuronal recovery in the brain, but now we know that actually there's lot more than we originally thought.

Chris: What do you mean by that, neuronal recovery?

Rene: So when you have a stroke, you have, obviously an infarct in the brain, which is an area of cell death. But – and when I'm talking about neuronal recovery I'm talking about in those first few weeks and months – there is actually some regeneration, particularly in terms of connections between brain cells and actually restoration of some of those functional networks within the brain. And some of those functional networks are involved with attention and memory. So we do see this neuronal recovery.

Chris: Okay.

Rene: And that’s talking about within the first three to six months. Beyond that though, people also experience quite significant recovery. Maybe due less to actual neuronal regeneration. People learning to manage their memory problems in a lot more efficient and adaptive ways. So learning to use a range of rehabilitation strategies, which I think we might talk about a little bit later. There's that kind of improvement long term as well.

As I said it's very individual, some people might experience maybe not so much in terms of improvement. Some people actually may experience some decline. And it's probably worth having a chat about, because that's probably of some concern.

It wouldn't really fit ... if someone does experience, maybe a decline in their memory, that's a bit of a red flag that something is maybe going on and there's a lot of factors that might cause that. Some of them might be kind of psychological. So that's a common one. If someone is experiencing depressed mood or anxiety, we know that mood can really impact on cognitive function, particularly memory. So that's one reason why someone might experience a decline.

Poor sleep, there's a whole range of psychological and lifestyle factors that can impact on memory. So that's something, if you are experiencing a decline in your memory after stroke, that's something that you'd probably want to check out with a GP or a psychologist or someone within your rehabilitation team.

Chris: Is there any connection between stroke and dementia? Because that's of course the other big fear with memory loss.

Rene: Yeah and I've come across a lot of patients that have seen me, maybe a few weeks, few months after their strokes saying, "Hey look, I've got these memory problems, I'm really scared I've got dementia." I guess the important thing to realise is that those two things are very, very different. So stroke is usually a one-off event where there's damage to the brain, whereas dementia is an umbrella term that refers to a progressive degeneration of brain structure and brain function.

And dementia is actually an umbrella term for a number of different pathologies. So you've got Alzheimer's disease, vascular dementia and these other types of dementias as well.

I guess a really important message to get out there is that just because you've had a stroke doesn't mean you'll get dementia. And if you have memory problems after stroke that doesn't mean it's dementia as well. A lot of people have memory problems after stroke due to the stroke, it's not so much a dementia process.

The question that I often get is, am I at higher risk of getting dementia because I've had stroke? And unfortunately, yeah, the risk is a little bit higher. It is higher for people that have had a stroke. A major factor behind that, I think though, is that the risk factors for both stroke and dementia, some of them are very common. So if you think about all those cardiovascular risk factors of hypertension, high cholesterol, they're similar risk factors.

The one type of dementia that people with stroke are particularly at risk at, is what's called vascular dementia. And without getting into too much detail, that's often due to people having numerous strokes, what's called multi-infarct dementia, which is people having a number of strokes over time, which is causing progressive neuropathology over time.

What would make you concerned that you do have vascular dementia? It's again that noticing deterioration over time of your cognitive functions, or maybe some behavioural changes. Again everyone with stroke, and even people with vascular dementia, are very different. Depending on where that damage is in the brain, people will look very different.

So again if you're any experiencing any decline in function after a stroke, it's something that you do really want to get to seek help.

In terms of preventing, even though your risk is higher, it's important to think about how to prevent or minimise your risk of getting dementia, and it's really about controlling those risk factors, the cardiovascular risk factors.

And in recent years, also we’ve realised the importance of keeping active, really the importance of a good diet, getting enough sleep, getting enough exercise, looking after yourself, social interaction. All those strategies are really helpful in terms of preventing and lowering your risk of the future dementia or cognitive decline.

Chris: Great. That's a fairly positive outlook there. I think.

Let's talk about some other things that can be done to help. Now I imagine, though with all the work that people like yourselves are doing that it has changed a lot over the years. David, given that your stroke was over 20 years ago, what was cognitive rehab and that sort of rehabilitation like when you had your stroke?

David: Certainly, when I was rehab the focus was understandably on movement and physical functions and learning how to walk again and you know, the focus was getting me talking again and teaching me how to make breakfast for myself.

But yeah, I think there has been a change. I don't remember anything around that time about rehabilitation of cognitive functions or thinking skills. Particularly things like memory are really important for quality of life. But I remember after my period of formal rehabilitation, yeah, there certainly wasn't anything for me to go on to, focussed on those thinking skills. And I think a lot of those problems from thinking skills don't really emerge to their full extent until someone goes home.

While you're an inpatient in a hospital, happen for you a lot. There's ... meals appear and nurses tell you when you've got an appointment, or people come and see you. You're surrounded by schedules and spreadsheets, and all of that is managed by other people. So to an extent a lot of your thinking skills are being outsourced to other people. It's not until you go home and you're having to rely on your own thinking skills again that ... you know a lot of people go back to work, the people who can. That's when changes in thinking skills really come to the fore and make you realise that there has actually been a change.

So while 20 years ago I don't believe there was the recognition that there is now on cognitive rehabilitation, I think that we are moving in that direction. Things like memory, those kind of problems with those kind of skills can be a bit of hidden disability. You know, it's very easy to see if someone is not being able to walk the way they could, or there's an impact to speech that you can hear, but being able to, or having a problem with your memory is not as obvious to other people. So it can be a bit of a hidden disability and some people may not understand really what's happening for them to the same extent.

These days there is a growing body of research about cognitive rehabilitation, thankfully, and some of that research has actually fed down into rehab services for the community. Some of the work that we do with some memory rehab programs are evidence of that. But there's still a pretty big gap between what we understand about the prevalence of cognitive problems after stroke and what is available in terms of rehab services in the community.

Announcer: Setting goals is crucial to stroke recovery. Goals can be as simple as walking to the letterbox to check the mail, or bigger goals like getting back to work.

EnableMe has a unique tool where you and your carer or family can plan what you want to achieve, track how you're progressing and celebrate your successes.

You can also connect with other people who set goals similar to yours and challenge or inspire each other.

You can even set up a blog to write down how you are feeling and share your own story. And don't forget our professionals from StrokeLine can help with personalised and confidential advice to help you grow stronger after stroke.

Visit enableme.org.au.

Chris: Okay look, this might be a good point to ask Jan about her experiences with the program. I imagine you've gone through a fair bit now with the Monash memory program. Can I first ask how did you find out about it?

Jan: Well first of all I found it out through EnableMe. I did see it and I think they were doing face-to-face interview, but I did apply for it and send off and inquire that I was interested if they did it basically online. But I can refer to, Chris, I can refer to David and Toni, Rene, all about what they've said about the cloud, the fatigue.

In my case I had about 12 months rehab part-time and my memory ... and the biggest thing was the cloud and not thinking of anything. My brain felt like it was hollow and when I saw this I thought this may be of some help.

I took three years to be able to even say a sentence. Put a sentence together for me. But it was through EnableMe, the new website for stroke survivors and families, etc. And I think it's one of the best things out, because it's helped so many, and already I've handed it out to someone today, it's a little flyer from EnableMe. That's where I found out about it and then I think David might have given, I can't remember who, but someone did ring me from Monash to say would I be interested in doing it online? So I did.

Chris: And you found it's helped you a lot?

Jan: Well, to start with I thought I'd be embarrassed by doing it, I'd be stupid or whatever. Not stupid, that's probably not the right word. But silly doing it, because to me I was pretty hopeless to be able to get my thoughts together and it sort of... Since basically starting, my negative thoughts started to turn into positives and David and Chantal, I think it was, put me at ease. Especially with David with his Monash MSHS or something qualtrics, who sent out surveys to do every week.

But I learnt so much, the new words and skills, but most importantly I learnt strategies. As, I think, Toni said it was about the retrieval in the brain. And I also learnt about the hippocampus, though I did refer to it as the hippopotamus, because that's what it felt like.

It has done so much to me, to help things, improve my memory. My speech is still not perfect because I'm tired today and I apologise about that. I have to concentrate to talk to you guys. But it taught me new skills, how to look after myself better and to... Instead of being able to only do one thing at a time I can actually do two things at a time now if need be. The actual program itself has helped me so much, and it was like waking up, like I'd a bolt of lightning or something going into my brain.

It’s just doing things like remembering. The safety box, David taught me about a safety box, which I still use. The safety box. Put everything into the box and you won't lose it. And you look in the box or you set up an app. You have apps if you need them, and keep a diary. But I write down everything basically if it's important and I've now got my own little way of doing things with a whiteboard, and putting appointments on and things like that. I am remembering, whereas I didn't before unless I'd written it down. But then I'd lose it, where I put it, because I'd put it in a safe place and never find it.

Chris: So David and Toni, what other strategies and tips do you supply people as part of this program?

Toni: Sure. So there are a number of strategies taught or we have gone through in the memory skills group and we broadly group these into internal and external strategies.

So internal strategies are those where we modify our approach to task within our own minds. And a good example of that is, people find it helpful, or can find it helpful to associate something new to be remembered or learnt, with something that's a little bit more familiar to them. So for example if you're trying to remember my name, Toni. It might be a bit easier for you if you could associate that with a Toni that you're familiar with, somebody from childhood or somebody else that you know. So building that link between something that’s familiar and something that's unfamiliar really strengthens your ability to recall that new memory.

The other side of that is the external strategies. So they're things that we can modify in our environment to help support our memory. Jan mentioned a few of those ones, they include things like the whiteboards and diaries. More importantly, well becoming more prevalent, are smartphones and smartphone applications. So there are a number of really great smartphone apps, including calendars and electronic notes, that can be really helpful in taking that pressure off the memory system, so really outsourcing that to something that's in the environment.

Chris: Okay. Those are organising apps. I suppose the other kind of apps and computer things that come to mind when we think about memory, is your brain training games and that sort of thing. Do they help, are they any use to people?

Toni: So, currently as it stands there is no evidence to support the effect of brain training games in improving our thinking skills. So there's evidence from my study that we've just finished analysing, as well as an existing body of research, that seems to point to the fact that anybody who plays these games tends to get better at them in the way that we get better at anything that we do quite repetitively. But that improvement doesn't transfer or generalise to real world every day improvement.

For example participants in my study, they did improve in the games that we got them to play in the memory set of games, but overall they didn't report that there was a change or an improvement in their functional memory. And that's a common thread that's coming out from the brain training research area. But in saying that a lot of people do enjoy playing the games and they feel like it does give them something to do and they're quite engaging and interactive. And if that is the case, by all means continue to play them, but I guess having that understanding that it's not a miracle solution, or that they're not going to improve your memory necessarily.

Chris: David, I understand the program is being run remotely as a telehealth trial. Can you explain what that is and how people can get involved in it if they're interested?

David: Yeah, absolutely. Before I do I'd just like to say how encouraging it is to hear how much Jan got out of this program and yeah, that's kind of really positive to hear and I'm so pleased that Jan got so much to change her life.

Jan: I'm just going to say, it did change my life, because it took 18 years and I still learnt something new.

David: Even this long later after a stroke there's still potential for change.

Just as a little bit of background, if that's alright, about my study. At the heart of it is a program called the Monash Memory Skills Group and that's led by Dr Dana Wong at the Monash Psychology Centre in Notting Hill in Melbourne. And that's a six week course in memory skills and that's designed for people with an acquired brain injury to get together in a group that's supportive and social. To share that rehabilitation experience.

So the course is one, two hour session each week and it covers a lot of the strategies that Toni just mentioned in terms of internal mental strategies and ideas to support your memory functioning, using tools in your environment as effectively as you can. It includes information about how memory works and how it's impacted by stroke, or brain injury in cases of the group.

And all of these other lifestyle factors as well, like sleeping fatigue, and diet and exercise and managing stress. All of those have a contribution and a potential impact on the way memory operates. So, which is great... You know it's a fantastic program and it's really good for people who have access to it. That brings me to my study, which is about the fact not everyone has access to a great program like this.

You know, there's a lot of people who have memory issues after stroke but they might live in a country town or a regional or rural area, you know they don't have the same local services to sign up to. But even in the city, our stroke community, there's a lot of us who have impacts to how easy it is that we can get around and how easy we can travel in our community. So a lot of people find it a little bit more difficult to get out of the house to access a program like this.

So for the program that I'm running we've adapted that Monash Memory Skills Group for a one-on-one setting. Some people also find it a little bit difficult to be a group setting. And also for delivery over the internet, so using a program that's very similar to Skype, I think a lot of people are very familiar with that. So we're delivering this program over the internet and we're measuring the benefit that people get out of that program, whether it's face to face or over the internet.

Yeah so we hope to ultimately, provide evidence that there is programs like this that can be provided to people with limited access to other things.

Chris: So people are able to get in touch with you if they want to be part of this?

David: Absolutely, yeah.

Certainly for my study, that's the one-on-one or the internet delivery of the program, absolutely get in touch with me. My email is probably best, which is david.lawson@monash.edu.

Of course if you are in Melbourne and you're interested in the Monash Memory Skills Group, yeah I think it’s just a matter of getting in touch with Dana Wong at the Monash Psychology Centre in Notting Hill in Melbourne.

I should mention as well that as part of a research program, the program one-on-one with me is free of charge. So that's a positive as well.

Chris: Great.

And Rene, I understand your lab does cognitive assessments and that sort of thing as well?

Rene: Yeah absolutely. So we have, in our lab we really specialise our research in terms of rehabilitation of a range of cognitive and mood issues after stroke and are always looking for people to participate in our research.

So if anyone out there is interested in participating in some of our research, looking at cognitive and mood rehabilitation after stroke, they can get in contact with us too. Our email is: psych.strokeresearch@monash.edu.

Chris: Great. Well look we'll put all those links up on our website. I encourage everyone to go to the podcast page on EnableMe website for these contact details. There is also a transcript of our conversation we've just had, so that you can read all the advice in case you can't remember it all.

Look, thank you all for coming in. I think we've run out of time now. So yeah, thank you to Jan Corcoran in Queensland and Toni Withiel, David Lawson and Rene Stolwyk.

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Chris: Right, and finally today we have speech pathologist Alana Stewart from StrokeLine. Thanks for joining us again, Alana.

Alana: Thanks for having me Chris.

Chris: Now do you speak to many people on StrokeLine with memory problems affecting their life?

Alana: We do, we speak to a lot of stroke survivors and a lot of their partners, husbands and wives, family and friends, who are observing that person struggle with their memory difficulties and they're also feeling the impact of that themselves as well.

Chris: And how does it affect some practical things, like returning to work and that sort of stuff?

Alana: Memory can, I guess like all of our speakers have touched on so far, affects day-to-day tasks, such as things like remembering to take medication or remembering to eat breakfast in the morning or what time you need to catch the bus. And when you experience those difficulties in a work setting, you've got to think about the impact that that has on attendance at meetings, remembering notes that you need to jot down, or telephone numbers, or the names of people that you meet, can have a big impact on your productivity and your enjoyment at work. When you add things like fatigue, difficulty concentrating on top of that it can be a really challenging time for stroke survivors.

That's when looking at a return to work programme that may encompass a staged return, or a return at reduced hours, is a really good workaround because you can see how am I coping in this situation, do I need to implement some new memory strategies, and what might they be and are they effective.

Chris: Okay would that involve working with occupational therapists? Or would it be looking at, say, a neuropsychologist like our previous guests.

Alana: So the short answer would be both.

Like Rene was saying earlier, every stroke survivor is different and every memory difficulty is very individualised as well. So when we get callers through to StrokeLine we are recommending that they see a neuropsychologist if that service is available to them. An occupational therapist is normally more accessible in most community settings, and we can talk people through that referral pathway.

The occupational therapist and or neuropsychologist can really help with that return-to-work plan and can support you through that transition period.

Chris: Okay. Now you are a speech pathologist, so I just wanted to ask you too what is the connection between memory and language problems after stroke?

Alana: So both Toni and David were talking about difficulties recalling people's names or remembering words, and I think stroke survivors would be quite familiar with the term word-finding difficulties, which many stroke survivors experience as do all of us. No matter whether we've had a stroke or not.

That ability to recall and retrieve that word from the language centre of the brain can be impaired after a stroke. We can also find that we repeat a conversation or tell a story that we've already told before and it's often... It can be frustrating for friends and family who will give the feedback, "You've already told me that story." And the person has no memory of that. So it can have an impact on relationships most definitely.

Chris: Okay. So then, what would be the top tips that you would give to people regarding their memory issues?

Alana: So, I love some of the strategies that Jan gave. You know, using a diary, using these external memory aids that work best for you.

Creating a routine is a really great idea, so having some kind of predictability around what you do at certain points in the week, at particular times, where do you put the keys every time you get home, do they go on the hook by the door. Just setting up some level of predictability so that you can rely on that and fall back into that pattern.

Ring StrokeLine and we can definitely help you out with some tips as well. Using an iPhone, we spoke briefly about the use of applications and things now, where you can take notes electronically.

Chris: Yeah.

Alana: You can set reminders on your calendar. Set an alarm to say take medication. Use something like a dosette box where your medicine's organised for the week.

And I guess, speaking about medication I would like to add that memory difficulties can definitely put a person... It can put their safety at risk, particularly when something like medication is involved. So not only a person remembering to take the medicine or not, but also if they've already taken it they're at risk of doubling up on the dose. And then there's a risk around safety with things like fire. So, leaving the oven or the iron on when the person leaves the house.

So that's particularly concerning for us and we would be working with that person and their carer or their support network around supervising that person and linking them into these memory services that Rene, Toni and David spoke about earlier.

Chris: Fantastic. Okay, anything else, any other advice you want to add there?

Alana: I’d just say as always, stay active, eat well, sleep well. You know, I think if you listen back to a number of our podcasts those themes really flow through and underline a lot of these post-stroke difficulties. And we know that if a person's mood is good, that they're well supported by friends and family, they're sleeping well and eating well, that these strategies and rehab programs are much more likely to be effective.

Chris: Yeah, it sounds like those, as you said it's a common theme affecting our recovery but also quality of life and general outlook as well.

Alana: Most definitely.

Chris: Fantastic. Well thank you very much Alana.

Well if you do need to find out more you can speak to a health professional on StrokeLine by calling 1800 787 653 or 1800 STROKE. And of course through EnableMe you can also ask your question and get a response from health professionals and other stroke survivors.

And that is it for today. If you like what you've heard, please give us a good rating and review on iTunes as that will help other people to find our podcast.

Thank you once again to all our guests, we've had Jan Corcoran, Toni Withiel, David Lawson, Rene Stolwyk and Alana Stewart.

Announcer: That's all from today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in the series at our website: enableme.org.au

It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. We also have health professionals from StrokeLine who can answer your questions and give evidence-based advice.

The advice given here is general in nature and you should discuss your own personal needs and circumstances with your health professional. If you would like to suggest a topic or provide feedback, contact us via the website enableme.org.au.

The music in this podcast is “Signs” by stroke survivor Antonio Iannella and his band The Lion Tamers. It was recorded at Antonio's studio, which you can find out more about at www.studiofour99.org.au.

This EnableMe podcast series is produced by the national Stroke Foundation in Australia.