Epilepsy and Mental Health: Anxiety, Depression, Psychosis - Gus Baker, University of Liverpool, UK
Neuropsychologist Prof. Gus Baker talks about mental health in relation to epilepsy! He highlights the significant morbidities associated, such as depression and anxiety. Gus really does emphasises the importance of clinicians understanding and addressing the mental health aspects of epilepsy, plus, Gus and Torie chat about educating people with an epilepsy so as to improve both their own and other’s quality of life! Transcription and links to Gus are below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Gus Baker
“Sometimes anxiety and depression can be a marker for the onset of epilepsy. And what that tells you is that anxiety and depression are part of the same underlying pathology that produces seizures.”
00:14 Torie Robinson
Who cares if someone’s seizures are controlled if they don’t want to live anyway? Well that’s what I’ve been known to say at conferences - and my point being, that psychiatric symptoms - commonly depression and anxiety - but often others too - need to be simultaneously addressed alongside seizures - because it’s not just about seizure control! We are going to hear all about that from top neuropsychologist, professor Gus Baker in today’s episode!
If you’re new and you haven’t done so already, please do like and comment on this episode, subscribe to our channel, so as to get more people learning about the epilepsies!
00:46 Gus Baker
For the past 30 years I've been a clinical academic working in the field of clinical neuropsychology and I've spent my whole career working within the field of epilepsy. I started at the Walton Centre for Neurology and Neurosurgery in Liverpool and I remained there for 30 years. Couldn't find a better job! And since I've retired from the University Hospital, I now serve as the Secretary General for the International Bureau for Epilepsy, which is an amazing organisation that I know you're familiar with, Torie, and I'm sure many of the listeners today will also be familiar with. And that's been a great honour and a privilege to do that.
01:31 Torie Robinson
Well, it’s great to hear from somebody such as yourself, clinician and researcher, actually seeing things from the perspective of the person with epilepsy and the family, because often there's bit of a… sort of, not necessarily two-tier, but a real division between clinicians, researchers and people with epilepsy. But I like to see that mix. That's great.
01:50 Gus Baker
So, most of the research that I've done has been based on interviews and assessments of individuals with epilepsy. So, I've not come at it from a clinician's perspective of saying “This is what I think from our research”, but “This is what I think from the people I've interviewed with people with epilepsy”. And this is the findings of that research.
02:11 Torie Robinson
Could you please provide us with some statistics - which I know is kind of hard - but statistics on people basically who've experienced epileptogenesis I guess; they've experienced epileptic seizures, but also what else?
02:23 Gus Baker
I need to first of all explain that there are lots of population-based studies out there and each study has produced a unique response in relation to the incidence and prevalence of particular comorbidities in epilepsy. So, we have to just bear that in mind; that there is no definitive figures. But let me just tell you about the rough numbers that we've understood from those studies. First of all, depression, anything between 13 and 36% of people with epilepsy are likely to experience depression. And that's, you know, that's interesting because that's compared to 10% of people without epilepsy having depression. So, we know perhaps 2 to 3 times incidence of depression if you have epilepsy. We know, for example, if you look at the bipolar disorder, about 12% in the population of people with epilepsy compared to 1% in the normal population. So, big difference.
03:32 Torie Robinson
Huge.
03:32 Gus Baker
Anxiety, we know that anything between 20 and 30% of people with epilepsy will experience anxiety. And of course, the more challenging epilepsy you have, the more likely you have to have anxiety. And we know that psychosis in people with epilepsy is somewhere in the region of 2 to 7%. So, if you take the overall global figures, we think it's probably that any psychiatric disorder or psychological disorder about 2 to 5 times larger than the normal population.
04:12 Torie Robinson
Do you think that's - or do you know - if that is because of… does it come along biologically with whatever causes seizures or is it due to social differences or can it be one or the other or a combination?
04:27 Gus Baker
That's a really good question, Torie, and you know, most of these population-based studies have looked at...the… [are] using questionnaires to identify whether somebody meets the DSM classification for depression. They haven't actually examined it in any detail, whether in fact it's an endogenous depression (that is, related to factors to do with epilepsy) or whether in fact it's a reactive depression (that is, the consequences of trying to adjust to having epilepsy and all the comorbidities that go alongside it). So, for example, we know with endogenous depression that there… broadly, there is a dysfunction in the limbic system that might be associated with epileptogenesis or that certain anticonvulsants may also produce impairments in central emotional mechanisms. So, there are a number of potential factors that can cause depression and of course on the psychological and social side we know that if you have epilepsy, you're less likely to be married, you're more likely to be unemployed, you're more likely to experience issues with low self-esteem and mastery. So, there is a lot going on that would make a person experience anxiety and depression as a consequence.
06:02 Torie Robinson
So, do you think that because we don't really have a definitive answer to my former question, that is something we need to look into in order to be able to, I was going to say treat, but, also prevent, ideally.
06:12 Gus Baker
Yes, because I think what the treatments that we might want to use, depending on any one individual, will obviously depend on what the formulation is of that person's depression, you know, do they have an endogenous depression that's part of their epilepsy or is this a depression rising out of a response to their condition? Some of the research that I've been involved in clearly identify that depression seems to be a marker for the onset of epilepsy.
06:47 Torie Robinson
Yeah, this is just personal experience, but I had such depression and suicidal ideation before I was diagnosed. And I'm not saying that the seizures hadn't started by that point, but I'd read a paper about this as well and how sometimes those symptoms precede seizures. Is that correct?
07:03 Gus Baker
That's is. So, we did a very important study - of course, I'm saying that because I was involved in it!
07:10 Torie Robinson
Well, of course!
07:10 Gus Baker
But we were able to identify that people with newly diagnosed epilepsy who hadn't started medication and who'd only had 1 or 2 seizures were already clinically anxious and depressed. There was a strong number of those respondents. So, we've looked back at a number of different studies over the years and it's clear that sometimes anxiety and depression can be a marker for the onset of epilepsy. And what that tells you is that anxiety and depression are part of the same underlying pathology that produces seizures.
07:49 Torie Robinson
I mean, we generally talk, mostly, about anxiety and depression because they are the most common, but also, I mean, I've read that you're much more likely to have schizophrenia, for instance, if you have an epilepsy and vice versa. Do you know, could you tell us anything about that and other disorders? Because you mentioned psychosis, for instance.
08:04 Gus Baker
Psychosis does occur, but it is, you know, in terms of the number of people affected, it's a very, very small number, particularly when you compare it to anxiety and depression.
08:17 Torie Robinson
Yeah.
08:18 Gus Baker
And, you know, there are, again, if somebody does have psychosis, it is really important that they access the right level of treatment as soon as possible.
08:31 Torie Robinson
So, heaps of neurologists, epileptologists, and clinicians often in general can be a bit nervous talking about anything to do with psychiatry. And there's a clear division. Unfortunately, generally, I think, between epileptology and psychiatry. Would you have any tips for clinicians if they don't feel very comfortable asking about a person's mental health?
08:56 Gus Baker
Well, I suppose the important thing is to recognise that the management of epilepsy is not simply just the treatment of seizures and that if you really want people to be “well” as a result of your management of their condition, you need to address all of the... all of the aspects of epilepsy, which including the comorbidities. So, for example, we know that people, when they're less anxious and less depressed, they manage their condition much better! And, you know, and you have to accept that given the instance rates, there is going to be, in any clinic, a number of patients who are going to have anxiety and depression. And I think we owe them a service to identify that and look at how it's managed.
09:48 Torie Robinson
Thank you. As a patient, I agree. And honestly, we, people with epilepsy and families indeed, will love you all the more if you help improve our overall quality of life and don't just look at seizure control.
10:01 Gus Baker
I think that, we…in the best centres you know there usually is a psychiatrist and a clinical neuropsychologist making up the team, and there is also epilepsy nurse specialists and they have a specific remit, really, to address these comorbidities. So, part of the problem is, first of all making sure that if you are… if you have epilepsy, you know, are you experiencing the comorbidities? Can they be identified? And if they're identified what's going to be the management of those conditions? So, for example, if somebody is anxious or depressed you might want to prescribe antidepressant or anti-anxiety treatment but you can also think about not only just prescribing medication but about behavioural treatment as well. And we know that from the NICE guidelines that the best treatment for depression, for example, is an anti-depression treatment alongside a programme of cognitive behavioural therapy. And that produces the most optimal outcome. And I'd like to make sure that if a person is attending an epilepsy clinic, that, you know, at least one of the questions that's asked is “How are you and how do you feel?” 2 simple questions that should be written in the dialogue that goes on between a person with epilepsy and their clinicians who are looking after them.
11:42 Torie Robinson m
So, we spoke a bit about this before, but you mentioned self-management by people with an epilepsy. Tell us about that.
11:50 Gus Baker
One of the desires, certainly for me and also for the IBE, is to really try to make sure that people with epilepsy become ambassadors for their own condition.
12:04 Torie Robinson
Mm-hmm.
12:04 Gus Baker
So that they're able to talk to their clinicians, their family members, their friends, people that they have relationships with; about their epilepsy. They have the basic knowledge to be able to part that knowledge to others so that others will understand exactly what is epilepsy and what isn't epilepsy. So, I'd like everybody, every person with epilepsy to have a really optimal level of knowledge about their condition: what type of epilepsy they've got, how often they have seizures, how is it being treated, what are the triggers for their seizures, how are they managing their anxiety and depression, do they understand it as much as they should do about their condition, do their family understand about it, do their friends understand about it, you know, do they know the risks associated with epilepsy, do they know how to manage their epilepsy so that they reduce the chances of having a seizure? I'd like them to be really well informed and educated because I think that's a really good way of managing a condition. And I say to my friends “If you had a condition that, yu know, you'd never had before and you didn't know about it, what would you do about it?” and they would, they all say “Go straight on the web, look at it, work out what it's about, work out who do I need to see, work out how we're going to manage it”.
13:29 Torie Robinson
Yes, I think so. Education is power. And sometimes it can take us a little bit longer to learn things, some of us, cognitive issues, a lot of the time, not everybody, but some of us, but keep reading if you can, or if you're a caregiver, please keep reading. And also, I think, appreciate that not everything you read is real! So, go to sources that are reliable, like IBE, like Epilepsy Sparks, like Epilepsy Action/Society…
13:55 Gus Baker
Dare I say it, Torie, listen to your webinars! They’re a really…
14:00 Torie Robinson
Thank you!
14:00 Gus Baker
…good source of information and I certainly do listen to them ‘cause you…
14:06 Torie Robinson
Oh, do you?! Thank you!
14:08 Gus Baker
…you've had some great people on there talking about it! But yeah, having a good source of information to be able to draw upon is really important. So, in the IBE we've developed toolkits and we've a special knowledge hub so that people can access information about their condition, about the best way to manage it.
14:31 Torie Robinson
And that's accessible to people from all over the world as well, isn't it? It's not like people can hear we're from the UK, but it's not limited to people from the UK. Any place on the globe, right?
14:41 Gus Baker
Absolutely. We're doing our best to present the information that we produce in as many different languages as possible.
14:50 Torie Robinson
Thank you to Gus for driving home that message that epilepsy isn’t all about seizures and that we, people with an epilepsy, caregivers, and clinicians - need to see and bring up mental health in order to improve - and sometimes maintain (fingers crossed!) - people’s Quality of Life.
Check out more about Gus and his work on the website torierobinson.com (where you can access this podcast, the video, and the transcription of this entire episode) all in one place. And if you’re new and you haven’t done so already, please do like and comment on this episode, subscribe to our channel so as to get more people learning about the epilepsies!
See you next week!
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Professor Gus Baker is a Clinical Neuropsychologist who has worked for 30 years as an academic clinician - spending his time equally between clinical practice (Walton Centre for Neurology and Neurosurgery) and clinical research (University Division of Neurosciences). He currently serves as:
Secretary General for the International Bureau for Epilepsy, a global organisation supporting Epilepsy charities to improve the quality of life with of those with the condition.
An executive member and member of a number of task forces at the International League against Epilepsy
Elected Vice President of Epilepsy Action Leeds UK
Chair of Trustees at The Brain Charity, Liverpool
Gus has published over 300 papers,chapters and books on neuropsychological matters with a specific emphasis on epilepsy and provides a medico-legal Practice (Tribune Psychology Services) with over 60 referrals per year (with particular expertise in Personal Injury, and medical negligence).
Presentations at the following:House of Lords
All-party Parliamentary Group
World Health Organisation
Conferences
Gus has also taken part in meeting in 53 countries around the world.
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LinkedIn professor-gus-a-baker
IBE committees
The Brain Charity gus-baker-chair-of-trustees
University of Liverpool guy-baker
ResearchGate Gus-Baker