Re-Connecting After Brain Injury: Understanding cognitive communication disorders

Um, thank you so much for being here today. Um, thank you for Headway for inviting me to talk about something that affects many people after brain injury but isn't always entirely obvious. I'm going to be talking about cognitive communication disorders or CCD. Um so hopefully whether you're a family member, a caregiver, professional or someone who's just simply interested in understanding brain injury better, um welcome.

So as Colin said, my name is Anisha and I am a speech and language therapist who specializes in brain injury and neuro rehabilitation. And I called um the title reconnecting after brain injury because that's what um being able to communicate really enables us to do. Enables us to make those connections between people. Um and as a speech and language therapist, that's what we do. We help them rebuild that ability to connect with family, friends, colleagues, and the world around them after their brain injury. Um and communication is vital to this.

So I thought we'd start off by talking about and looking at what is communication. So often we tend to reduce communication down to the words that we say. Um but this is just our language system and only one aspect of our communication. So whilst we do have our conversations with people face to face, over a cuper, over the phone, we also communicate via written um and more often than not nowadays emails. Um we may meet up as groups socially and um over social media. So whether you're sending those DMs, posting a Tik Tok, they're all communications. But also the things that we don't also think sometimes so obviously about is being able to read our hospital letters, being able to make those appointments, being able to ask questions in the GP surgery. Um, and like I said, everything is so digital now and online, you know, managing even our finances, being able to um communicate through the apps that we're using.

So, ignore the labels here, but I just wanted to show a picture in terms of or an image in terms of around where we kind of think around or typically used to think about communication and in the brain. These areas that are highlighted in different colors um are in fact areas that are involved in our language system. So that enable us to understand what people are saying um the words that they're using and us to be able to move our lips and our tongue and our mouth to be able to say and find the words that we want to say. But as I've just said that this is quite simplistic. This is only one aspect of communication. And if we look at it in more detail actually we can see that there's a whole host of other processes that are involved um in in communication in including our cognition. So thinking about what we want to say, how we inhibit what we want to say, um how we don't inhibit what we want to say when we are really angry, how we reason through things, how we make those arguments. Um to the gas guy who um and the energy suppliers who are taking all our money um to how we are um guided by our emotions as well and they do in uh affect our communication. So, we know that when we're not feeling as great, um we're feeling a bit blue, um that we tend to not really be motivated to talk. We're not really for all coming with talking. Whereas, when we're anxious, we actually do um speed up the rate of our conversations. So, when we are in interviews, for example, when we're anxious about something, we might speak at a rate of nods. We become really hyper. Um and in terms of um in terms of physiologically um fatigue, it's a huge impact after a brain injury um after most neurological conditions and this can affect how we communicate um as well. We tend to have more of that increased brain fog thinking, finding the words. We might trip over our words, our speech production a lot more. um the more tired we are and that's all in addition to our communications. So when again when we're thinking about communication, so how we are listening and interpreting what people are saying, how we're processing that information, how we are explaining and using the words ourselves to explain what we're thinking and what we're meaning um and how we interact with people generally um um and and in terms of the nonverbals as well. So, how we read people's cues, read people's body language, their facial expressions. And you can see from this image that essentially all that there's pretty much all the area of the brain that is involved um in communication one way or another.

But just to make it a bit more complicated, on top of this, we need to think about the individual. We're all different and that's what makes brain injury really difficult. Sometimes we're really individual people. Um, so not only in terms of thinking about actually that our age impacts the way we communicate. So obviously when we're younger, we might not have as much of the vocabulary. We might not always understand that actually in certain contexts and situations that we do change and adapt our the words that we use um the language that we use. um in terms of how we communicate as um as males is very different to how we communicate as females. Um in terms of how far or how much we have attended education or been able to um may affect our the the our communication skills as well as culture, our background, our linguistics um in terms of are we do we speak more than one language? Most people are quite a majority of people do speak more than one language. Not only bilingual but multilingual in terms of the communication style that we use. So are we a really chatty person forthcoming? Are we really blunt when we talk naturally? Are we um the person who sits back and listens to everyone? Um or are we the really sarcastic joker in the group?

And then in terms of the type of injury that we might have had. So the brain injury in terms of the type of brain injury, the severity of it, and how well post the injury you are. These are all factors that can impact our communication.

On top of that, just to make it even more complicated, is that actually the context that we're talking in. So who are we talking to? Are we talking to our family, our friends, people that we know? Um um or are we talking to strangers, people that we don't know? And have a think to yourselves. We do actually adapt and change the way we talk um to people depending on how familiar we are to them. Um and in terms of what context it is. So if they are professionals um versus our friends in terms of the environment that we might be talking within. So if it's at home, again, we're much more relaxed, much more familiar versus if we're in the hospital or at a doctor's appointment or in the pub or equally if you got a order appearance and then the task at hand. So actually what are we trying to do with our communication? Where we trying to retell a story. We're trying to retell something. We're trying to explain something. We're responding to a question. We're providing an answer. Are we asking a question? Also, are we asking for clarification? Are we giving an opinion on something? Are we make trying to make an argument or something?

All this really highlights the complexity of communication um and the multiple processes that are occurring when we are communicating. And so after a brain injury, if we think back to the image that we had um of the brain and those areas that are involved um it slightly makes sense that there is um a high prevalence of communication disorders after brain injury and if not more the most often being a cognitive communication disorder. So any type of communication disorders can occur. So there may be language difficulties or ofasia. There may be speech difficulties in terms of slur speech so like dysria, voice disorders like dysphonia or in terms of just communication in terms of the CCD. What we know is that language, speech and voice tends to only take up about a third of our communication disorders that we see. The overriding familiar one that occurs um is a more highly frequent one that occurs is the cognitive communication disorders. And if we look back to that image of the brain and the overlaps, it may make sense and link to when we have in terms of a traumatic brain injury that diffuse axonal um area that is impacted and injured.

So what exactly is CCD or cognitive communication disorders? So it can be defined as deficits in communication that ultimately arise from underlying cognitive impairments. So for example, attention, memory, information processing, executive function um or social cognition. So this next slide is quite a crude um aspect um crude image. It's not linear. Um it's not one causes the other but it's a helpful way to see um just to show and understand a little bit in terms of the complexity again. So in terms of those cog cognitive processes like attention, memory, information processing, awareness and insight, executive dysfunction and social cognition, difficulties or changes to attention might impact someone's communication. They may have difficulty following or changes in following changes in topics. So when we're talking and we suddenly change topic, they may have difficulty following that. They might get easily distracted by either internal thoughts or external. They might not be able to kind of um siphon out and um kind of reduce what the external other conversations might be happening around them. So noisy environments might be quite difficult for them. They might have difficulty multitasking. So for example, taking notes and listening to a webinar for example in terms of um memory. Um so this might impact in someone's communication in terms of recalling kind of information from conversations. They may not remember the details of conversations. Um they may remember overall it happening. They may not remember the the the conversation topics that have been had and so they may repeat themselves quite a lot as a result not recalling that actually we've had that conversation already. Equally um they may not find the right um words or give enough details in what they say as well in terms of information processing. They may have difficulty comprehending large amounts of communication um information either in written form or spoken. So they may be able to um handle in terms of small amounts of information um but when it becomes a large amount it may become overwhelming. It may become difficult to hold on to and process. It may take just a lot longer to process. They might misinterpret information or get the wrong end of the stick. So they may think or assume that they have processed and understood what is being asked but as a result of maybe missing some of the details they may have gotten that wrong end of the circle of what is being asked of them. For example, in terms of awareness and insight, we know that this can be um impacted after a brain injury and that reduced insight into their own communication changes um can become difficulty. It can make it difficult for adapting um and taking on in using strategies to support and not just in terms of communication strategies, but it may well be kind of physio exercises or kind of OT adaptations. um or kind of um well-being strategies in general. Um they may have problems recognizing or repairing communication breakdowns. So, for example, if someone hasn't understood what they've said, they may just carry on repeating it in the exact same fashion, not understanding that they may need to rephrase or um what they've said in order to help someone understand um um or maybe they haven't said it in the most clearest way. An executive dysfunction. So they may have difficulty initiating conversations. Um so once you um they may always require that you need to start a conversation but and once they've started a conversation they have no problem but they will never start an initiate conversation. And this can make it difficult in thinking about when you're talking to new people, when you um are talking to unfamiliar people, when you um are making new friends. it can be quite difficult if you're um if both parties are never initiating. There might be difficulty ending conversations. So in terms of um always may not just read the cues of the of the listener of the other person trying to end or they might not be able to um um realize that how to end a conversation. And we all do this. We think instinctively um but we do do this and we do do it kind of consciously. Um often there might be a lack of kind of structural coherence in their discourse. So what they're saying. So again we all tend to talk um and um communicate with a start, middle and end. Um when there is difficulty in terms of um or lack of structure, they might start in the middle. they may have not kind of let you know um what they're talking about. They may have just jumped straight in middle of their story. Um and that makes you as a listener quite um lost in what they're trying to say. They may be verbose. So they might talk um for a lot longer than is needed. They may go on and on. They might say something that maybe only needed a sentence, but they talk at length about it. they may become they may be tangential. So they might go off topics um when talking. So you may ask them how they were and they're talking about um what they're going to eat for Christmas. They may also have make um quite often literal interpretations. So um particularly in English um and our language we have a lot of idioms, metaphors, similes, words that are not taken literally. But some people may um have difficulty with this after brain injury. They may um not get that you're making a joke or that you are not really meaning that pig when pigs fly um or that you're trying to actually split hairs. And then in terms of social cognition, so in terms of um as I've slightly mentioned already, reading people's emotions, thinking about things from their point of view. So actually noticing that someone's looking upset. Um and so maybe what you're talking about is upsetting them. We would normally do that and then stop talking or move on. Um they may just carry on. um and they may well have recognized it but they may have difficulty due to executive dysfunction around doing something about that. They may appear um or have reduced empathy and so they themselves may not give a lot of information nonverbally to you. They may have difficulty as I said perceiving human sarcasm. Um so in terms of sarcasm is often quite a big one. Um, so they will understand what you're saying, but the tone that makes it that sarcastic tone so that you know that actually that was a joke or they're trying to humor you may go completely over their head. Um, or they may become egocentric. So in terms of they are only able to think from their perspective. Um, and so conversations need to be around what they want to talk about. for example.

So, just to kind of really bring it home, what CCD kind of looks like is if someone is struggling to stay on topic, if someone is forgetting conversations that they've had, they might tend to be repeating themselves. They might be misinterpreting tones or people's tone, their jokes, or their sarcasm. They might dominate conversations or speak impulsively. They might struggle to tell stories in order um in in a coherent order or they may miss out p uh details in that story that they're saying so it doesn't make sense. They find it hard to read the room. um their skills may commonly fluctuate dependent on the environment they're in, the fatigue impacting them at any particular time of the day and the stress that they might feel within the environment that they're in. Um and that they might not always be aware of these communication changes, but it is worth noting that every person with um CCD is different. Um and so they may not it's unlikely they will have all of these symptoms. Um but they may have any number of these um so um yeah and the impact that this has on a person um and subsequently to their injury is that it has a real impact. though their relationships. So it has difficulty in terms of maintaining those relationships in terms of um starting new friendships. We know that um evidence shows that research shows that we tend tend to lose our social networks and we kind of they become reduced after a brain injury. Um and so there is often a bigger need to um make new friendships. Like I say, if you're not initiating, if you're coming across blunt or rude or you're not kind of really hearing what the other person is saying um in that pragmatic sense, that can be really difficult, particularly if the other person doesn't understand the diff the changes that you've had and the difficulties that you're having. Um there's research show that in terms of participating in leisure activities really reduces. So it becomes really difficult to part participate in um activities that not have given them um pleasure. Um it may be difficult again thinking about the social aspects of so you may be able to go play paddle. Um, but there's often a whole social aspect to it as well. And if you've got difficulties with those social interactions that can become quite difficult even though kind of physiologically you can play paddle in terms of academic attainment. So in terms of getting an education. So remember brain injury can happen at any age. Um and particularly if you're um a child or a young person with a brain injury, it can change the trajectory um of your development. Um and it can be make it difficult to access education. It can also impact in terms of employment. So returning to work um so in terms of um maintaining work as well. the biggest um so I think um CCD and communication disorders is normally the biggest point reason that people don't maintain their jobs um because again those social interactions those appropriate professional interactions can be quite hard for people and if you're not always aware um of your communication changes this can make it difficult and impact on your autonomy and independence as well as your identity. So, how we speak, what you know, like I was saying in terms of our communication style, well, if we were the joker, if we were the kind of strong um the the really good listener that people went to and now you're completely the Bose one or the really blunt one. Um that can really change who the type the kind of identity that you had. um and kind of your self identity and how you're identifying yourself. And a result of all of those, it can really impact on someone's mental health and well-being. So, if you're not really um being able to access your education, if you're not being able to hold down a job, if you're not able to participate in things that you enjoy so much, um that's really going to have an impact on your well-being. Um, and it's important to realize that it's not only an impact on the person with a brain injury, but communication is a two-way process. Um, and it takes two to tango. So, it does have an impact on the other person as well, particularly kind of close family members, caregivers. So, there's an increased family and caregiver burden. it can be quite distressing if it's quite um severe um impacts. There's a shift in can might be shifts in roles. So if that person used to be the bread winner for example and they're not no longer able to come go to that um employment level that they were at before and so they may well still be employment but in a different one or a lower kind of pay scale that might have a um a financial implication. They might have been the caregiver themselves and they're no longer able to do that and maybe their partner is now having to be the caregiver for someone else that they were giving the care to.

So what some families have said cuz it is subtle. So he sounds fine but something's different. She keeps asking the same question. He never used to say inappropriate things. conversations are exhausting now. And so there's real subtle changes where there's not something specific that people might not be noticing, but there's something different. There's something that's changed in that person.

And then it's worth highlighting that there are even longerterm consequences if we don't aren't able to intervene at an appropriate time with people with cognitive communication disorders. As I said, it may affect that person's um childhood development if they have that injury like as a young person. There's an increased risk of criminal behavior um which also once they are in the criminal system leads to poor legal outcomes as well. So again, if you're thinking about them understanding what's occurring, what's happening, um, actually in terms of what all that legal jargon is, they're put at a major disadvantage.

So often CCDs are overlooked. And why are they overlooked? Why are we not picking them up as much as we know that they have such huge impacts on? It's because they often talk better than they communicate. So in for example aphasia which is the language disorder we can again it's more visible. We see someone not being able to find their words and therefore thinking not they're not able to talk but actually people with aphasia can talk can communicate really well because it's just one part of their communication that's affected their words. And so they're able to often problem solve. um and learn new ways to adapt. So using kind of um a total communication approach, thinking about can they write it down, can they mime it, can they gesture it. People with CCD as they like I said what they say makes complete grammatical sense. Um but actually when you look at the content of it it's there's not much there. And so it gives the impression that they are able there's no difficulty there.

Um and just to say in terms of um there are a few papers. So if you are professionals out there um listening today um that have come out. So there is the INCOG um guidelines that have the second reiteration has just come out has come out recently in 2023 um that identifies what we as speech and language therapists should do um and how we should support someone um uh with a cognitive brain uh cognitive um cognitive communication disorder. And in the newly updated um NICE guidance for the rehabilitation for chronic neurological disorders um including um brain injury, it highlights that we need an early SRT referral that we are part of the MDT. The MDT should be doing early screenings of um all communication changes um referring on to us to um screen as well. um and that we should be working as as part of uh MDT in an interdicciplinary way and providing um that cognitive cognitive communication rehabilitation to individuals and um as part of RCST so the Royal College of Speech and Language Therapists um there will be new guidance coming out um on um not only acquired brain injury but also the CC around CCDs um early 2026

So, how do we as speech and language therapists support someone with cognitive communication disorders? So, I'm not going to go through this, but you can see there's a whole host of things that we do. Um, and it's not just um in an averted communist therapy. Um, in first place, we need to identify it. We need to assess um we need to see how they are communicating and importantly how this has changed from how they would have how they would normally communicate before their brain injury. What has the change been um and how are they communicating in different environments? So often in hospital um it's quite short interactions. They're quite um visual kind of aids um of what to expect and so people with cognitive communication disorders may not get picked up so easily because it's not so um challenging in terms of complexity for communication and so it may not be so visible. Um once we have um assessed um and identified um a lot around it is around education of how that communication has been affected um after brain injury and how it's affected them um and tailoring intervention for that individual. So that cognitive um uh communication rehabilitation involving being very um communication specific context dependent very um and and meaningful to that person. So it needs to be in that environment that they're having difficulty in with the communication partners that they might be having difficulty in. So if they are having particular difficulties um in the workplace, it would be working with the workplace and their employers. And there's a whole host of things that we might also do alongside that education. Um and that as part of that cognitive communication rehabilitation um is think about using assistive technology or kind of our everyday and by assistive technology I mean in terms of our everyday technology that we kind of use. Um so you know using our smartphones, using our electronic calendars to help us remind um uh remind us of things of have those strategies written down work collaborative collaboratively with um families, friends, caregivers, the MDT um um work with third sector organizations that provide often and now more than ever so much input. think people like Headway um we may work on raising someone's insight and awareness into their communication difficulties um working in groups and not just one-on-one um as kind of that is a whole added complexity for someone um in terms of our communication when we're on oneone we can focus on one thing we're focusing on one person and what they're saying in a group we're having to look at lots of different people and lots of different things that are going on at that time.

In terms of how to refer to SLT, um so anyone can refer um you can make that referral via your health professionals and it can be made at any point after the after the injury. um if there are new circumstances, new context, increased problems that you might notice further down the line, then you can go back to your GP and make a referral and request for that.

So, thinking about kind of just tips um for like I said, everyone um with CCD will present very differently to each other um but some general tips. So if you are the person with CCD um thinking about preparing and planning for um for conversations. So for example, if you've got a hospital appointment, doctor's appointment, um thinking about if there are particular questions you want to be able to ask, having that written down. um taking notes um during or or if the multitasking is difficult, you know, using a recorder, using someone with you um to take those notes. Um um so you are able to ask those questions. You don't you remember to ask those questions and or you're able to say what you want to say as well and you're not put on the spot. to keep speaking clearly and concisely to think about are you going off topic um oh am I talking for too long what tips what hints are giving me that in terms of um as I said record information use your phone use your um take a picture take visuals um aids all that and check that you have been understood by people um or check you have understood them. So reiterate back to them so you can check that you haven't misinterpreted something.

And then just some general tips for if you are working or um living with someone who has a brain injury and CCD. So follow any strategies that may have already been provided by um speech and language therapists. um ask them, ask the person themselves what helps. But in general, reducing noise, reducing that making that environment calm, not stressful, not noisy. Um reducing distractions can always help. Um allow time to respond. Um, I think we'll all really bound out wanting to fill in that silence the minute that there's a silence, but actually if you can count to 10, um, and give that silence, give that time for someone to process and respond is really helpful. Um, break information into short chunks. Don't give huge amounts of notes and visuals to help um, cement that understanding. um highlight to them if you if you feel able to in a gentle way that they've gone off topic that they are speaking for too long. Um use clear concrete um everyday language yourself. Don't use like loads of convoluted if you don't need to be using that. Um provide visual formats and it may be helpful to revisit conversations as well. And it's worth just saying that it is often a tight rope that you have to talk uh you have to walk between being really supportive and not being overly supportive and allowing them to also work on it. So they may well be working on it as part of their rehab as well.

Some just some additional tips for specific cont uh contexts that you might be working in. So in education, you might be wanting to think about that teaching classroom environment um where that person is sitting um using visual aids to help organize and learn information. Um in terms of um the workplace um so if it has lasted or is likely to last more than 12 months um the ABI counts as a as a disability under the Equality Act and so does CCD. So if something is if communication is impacting, so you may want to think about it likely being needing a longer phase return to work. Um having information pre-written, people not putting you on the spot so you're getting overwhelmed. Um employers fostering a culture of compassion and patience and tolerance. Um and then in terms of if you in in terms of health and social care professionals ensuring that you are providing accessible um information, assessment and treatment materials um supporting information um in terms of decision- making about health, finance, housing, the really complex topics that we need and use a lot of complex words as well. How can we break that down? do we need to be using that jargon particularly within the criminal justice system. So avoid using that complicated legal language. Um support them to um complete documents. Um in the criminal justice system you can use a intermediary service which is often made up of um speech language therapists but not always. So where they will support and ensure that these adjustments are put in place um and and supported if needed.

and just some further resources. So in terms of for um professionals, there is a cognitive communication checklist for um wider brain injury um called the cababby um and this gives 45 um reasons to refer to a a speech and language therapist. So it's a really it's free if you Google it um and you can download it. It's a really easy tick box. Um and if you have tick any of those um areas then it suggests that there's a a requirement to refer to SLT. Um there is a open access CCD article about CCD by um S Dr. Susan Howell on on um our role as SLTs. Um so that's a really nice easy read as well. Um and um like I said in terms of um guidance on CCD for the speech and language therapist, it will be coming out um early next year. So watch this space.

Okay, I'm justware of the time so I'm going to skip over that. Um but just to really highlight that communication really is more than words. It's how we connect and belong and make sense of the world. Um, and when that changes, it really does affect every part of our life. Um, so and we're not picking it up as much as we should. Um, and that's because it is so it is very invisible. It's part of that hidden hidden disability and they will appear often better than they are. But it does affect in terms particularly around their social interactions. and simple strategies like taking notes um preparing ahead of time for things can just make to do that and identification to help with that. So by understanding CCD I hope we can build a better support system strengthen those relationships and reconnect in more meaningful ways. Thank you.