Relentless Optimism for People with Brain Injury: Kate Gould in Conversation

Neuropsychologist Dr Kate Gould leads a theme of clinically applied, co-designed and translational research on understanding and improving life after acquired brain injury with the Monash-Epworth Rehabilitation Research Centre and Turner Institute for Brain and Mental Health.

Kate joined the Centre for Optimism in conversation.

Victor Perton: Kate Gould, it's a rule when you come to the Center for Optimism to answer the question, what makes you optimistic? Kate Gould, what makes you optimistic?

Kate Gould: It's so thrilling and a privilege to be talking with you today, to have a conversation about optimism.

It's a short question, but I think it has quite a complex answer. As we've talked about, you can write three pages on why you think you're an optimist. And as you said, I'm a neuropsychologist, and I'm interested in the brain, psychology, and behaviour.

And so the way I see the question is, as a neuropsychologist and what's the formulation? What is the reason why I am the way I am?

So, I'm going to answer it like a neuropsychologist as well. And one of the key ways we look at the world is through the lens of this biopsychosocial framework. So, that's combining biological, psychological and social reasons.

I think there are three parts as to why I'm an optimist. And I'll explore a little bit about each of those.

At the foundation, I have to acknowledge I've had a lot of privileges in terms of my upbringing in a good family and good education, and I haven't had significant hardship in my life.

From a social perspective, but biologically as well, I've had the fortune of good health, and I think I've inherited a half-decent brain that gives me a good head start, excuse the pun. And I think these have enabled me to know, for example, what I want for my life, and then have given me the resources and the motivation. And my brain has given me the ability to work hard to achieve my ambitions, which I'm progressing in.

And so then, in terms of my actual work, I work in the community in rehabilitation and I think that line of work must attract an optimist and hone the value of optimism.

I work with adults who have had severe brain injuries through car accidents, workplace injuries, falls, and strokes, and my job is to help them understand how the injuries affected them. I work with them in their home and community to build a meaningful and positive life. So, optimism's absolutely essential in this. Otherwise, why even start if you don't hope things will improve? And so I really believe in relentless optimism, that there's always something that works, and it's our job to figure that out together. What is it that's going to work? Let's try some things out.

And thirdly, I think my optimism is also a choice that I make, not only in the way of thinking and feeling about myself and others in the world but also in how I behave each day in trying to instil hope.  By way of example, I set through things like just trying out new things, taking chances and investing in myself and in the future. To try to see the best in people, not in a naive way, because there are bad actors out there who take advantage, but I think most people are good, generous, want to be helpful, and that we can all connect through that value of optimism as we're all here doing today.

 And I think that's an essential way to unlock a better world.

And finally, I'm often really inspired by the tenacity, resilience and perseverance of the people that I get the privilege to work with, who have gone through significant injuries and trauma and are steadfastly rebuilding their lives on the other side. And so I think that's my short long answer of what makes me optimistic.

Victor Perton:  Kate, I'm a bit like you;  we've got wonderful quotable quotes on the Center for Optimism's website. They're one sentence or two sentences.

And people say, "What makes you optimistic, Victor?"

I say,  "It's three pages, lots of ancestors."

Recently we hosted the Nelson Mandela Youth Leadership Summit, Kate, at the Parliament and the quote we gave the children from Nelson Mandela was: "I’m fundamentally an optimist, whether that comes from nature or nurture, I cannot say. Part of being optimistic is keeping one's head pointed towards the sun, one's feet moving forward. There were many dark moments when my faith in humanity was sorely tested…”

We first met at your grandmother's book launch. Dita Gould's, The Girl in the Lion's Mouth.  And there's a question online from one of our friends, “Can you learn to be an optimism?”

Kate, is your optimism nature or nurture?

Kate Gould: I think that's a classic great question.

And I think the place we come to it's always a combination of both. I started with my nature, those building blocks that helped me get started in a way that would look at the world in an optimistic way. And then I think my experiences through family life, through my training, my work, they all facilitate that.

My grandmother, Dita Gould, we're talking about her book. She wrote a book in her late eighties and published it during the pandemic. And it's very inspiring to see that and to grow up with that kind of influence as a real go-getter. She says, "Where there's a will, there's a way," and that is optimistic but not complacent. It's also about working hard to get what you want because you believe that it's possible.

Victor Perton: Kate, you're a clinical neuropsychologist; it's a wonderful title, practising community brain injury rehabilitation. So, not everyone goes into this field. We don't know that many neuropsychologists. So, how did you get started, and what does your work involve?

Kate Gould: It's a great opportunity to be able to really, I guess, promote and provide some information to the community about what neuropsychology is about, so that if there is ever a need, that you know that there is a profession that's designed to help. So, neuropsychologists, we're a type of psychologist who is particularly interested in the relationship with the brain on a structural and functional level, and the association between the brain and behavior, emotions, functioning.

So, whereas you might be familiar with psychologists that provide help around anxiety, depression, substance use, or maybe work in school settings as education psychologists, or sports psychologists that help with performance, there's a whole range of different types of psychologists. And neuropsychologists tend to be interested in people who have neurological conditions, working out from a diagnostic perspective, do they have some sort of neurological issue, like a brain injury, or dementia in the elderly, or childhood disorders, epilepsy?

And how does that affect their brain functioning in terms of their thinking, their cognition, memory, attention, speed of thinking, judgment, reasoning, problem solving, planning, their emotions as well in the context of their brain function, and behavior as well. Are they acting and responding to the world and themselves in the way they used to? So, we kind of look at all of that from an assessment perspective.

A lot of neuropsychologists are focused on assessment, and that would be doing structured standardised tests of thinking. So, its kind of is a bit like an IQ test, but more expansive, more detailed, and unpacking not just intelligence, but different facets of cognition. Whereas I'm in rehab, so I'm more interested in so what now? You've got an injury, or a neurological disability, or change, how do we help you live your best life?

Victor Perton: Your revolutionary work, the thing that really attracts me, is your PBS+PLUS. I love that expression: “Relentless optimism is at the core of PBS+PLUS, working flexibly, systematically and creatively together with the person with the injury, their family and team, there is always something that works.” So, do you want to tell us about this revolutionary field, and in particular, how you are growing it out now with handbooks and helping the world deal with brain injury with optimism?

Kate Gould: Well, thank you for those kind words. So, one of the areas that, in the situation of traumatic and acquired brain injury, so people who've had car accidents or maybe a stroke, they can often be still as intelligent as they were, but perhaps have a range of difficulties. Each person's different, everyone starts off differently, they have a different brain to start with, and they have different injuries.

So, some people have quite mild injuries and some people have more severe injuries, and particularly people with more moderate to severe brain injuries, it's quite common to have behavior change. So, we found 70% of people in the first two years have behavior change, and that's things like verbal aggression, being more angry verbally, swearing, yelling, threats, and things like that. It can also be changes in their social interactions and also behavior change might be finding it harder to get up and go and get started.

So, these behaviors can all have a really big impact on the person that can be upsetting, particularly if they're quite aware of them, they can be hard for families. And often clinicians, neuropsychs and other providers who might work with them, often are a bit stumped to know what to do. There hasn't been a huge amount of research evidence specifically for this population of adults with brain injury and behavior change. So, at Monash University and led by Jennie Ponsford and Tim Feeney and myself, we have conducted a randomized controlled trial to look at a positive behavior support approach.

And that's an approach that looks at understanding the behaviors, but more importantly, understanding what the person wants for their life and how to rebuild a really positive life, and how are those behaviors getting in the way of that. And so this work has been done by Tim Feeney and Mark Ylvisaker for many, many years, but it hadn't been subjected to this level of a clinical trial. So, we did that and we finished it only a few years ago.

And we did find that our approach, PBS+PLUS, a positive behavior support approach to challenging behaviors, did improve the people's behavior, but also help them achieve what they wanted for their life. And so my job now is to help translate that into the community. Just because it's been done in research doesn't mean that people are using it. So, that's what I'm really excited to speak to people about. And in particular how we use optimism at the core of what we're doing. So, that hope and that optimism is one of the most critical parts of the way that we work.

Tim says that “optimism is a shield against despair and an invitation to great possibilities”. So, as optimists, we are positive and hopeful, as well as being responsive to the realities that people confront. And that as providers and clinicians, we owe it to the people that we serve to be relentlessly optimistic and that there's always something that works.

Victor Perton: Before we call on the questions from the audience, you've given me some examples that have intrigue me: Little lifestyle changes for  your patients You ask someone what they want rather than you are telling them what they can do. Just before I call on some of the other questions, do you want to give us a couple of the examples of what you do with the people that you are helping?

Kate Gould: So, we have this attitude of relentless optimism and being open minded about possibility and that kind of orientation to the way that we work in a very humanist approach. But then the optimism also comes through with the actions and the practicalities of the way we work. So, that starting question of what do you want for your life? And you can be completely aspirational and you don't have to be realistic. It doesn't have to be that we start the conversation at a six month goal that the funder will support.

But we have this big blue sky thinking to just open that possibility. And for some people they've never really had that kind of conversation and it can be pretty tricky. And so we can provide support around that and how to think about yourself in a more optimistic way for your future. And then also as we are doing the work, it's also about not looking at progress and how things have gone in a success and failure way, but we move to an approach of, well, what did we learn? Then we'll just adjust.

And so whatever's happening where we are looking at that optimistically, we still have a clear eyed evaluation of the outcome. We don't just say, "Oh, everything's great, it's fine." But maybe that didn't go the way we wanted. It's not a tragedy. That's fine. Let's recognise that and think about that and review that, because we don't expect to get things right the first time. But it's a process of learning and improvement. We're experimenters and we're always looking towards that possibility and creating a momentum from that. And I think inevitably something good will happen, and that's that relentless optimism. There's always something that works.

And we keep going through this process, and it might not always be us driving it, but we support the person and their family to keep going with this process of continual improvement. And I think that our research shows that that is an effective way to work with people. And even though we are working towards these aspirations, and I think the example you're talking about, Victor, is when people can say whatever they want, essentially, about what they want for their life, that's each person's prerogative.

And we had somebody said that, "I want to win TattsLotto. That's what I want for my life." And we're like, "Great, that's a wonderful dream to have. And then let's think about that realistically, how are we going to get there to give you the best chance to win TattsLotto?" So, a big part of that will be buying a ticket. And for this person, there were a lot of steps before they could buy a ticket. They had to get back to using their wheelchair. They had to learn the route to get from their home to the news agent. They had to save up some money to buy that ticket regularly.

And so that formed a really effective and important and meaningful program for him to work towards winning TattsLotto. And it's not necessarily even about winning the TattsLotto, it's an unlikely event, but it's that optimism. Let's buy the ticket and see what happens.

Victor Perton: That's lovely because it's so normal. We all go and buy a TattsLotto ticket, and we dream of winning. So, I just love that. And I always love that there's a joke, of course, that someone's praying to God and saying, "I want to win TattsLotto." And this voice comes from above, "First buy a ticket."

Kate Gould: Yeah, exactly. Or my grandfather's experience where he excitedly told my grandmother that he had won TattsLotto. And she's like, "That's brilliant, but I don't remember you buying a ticket," and it was a scam. So, it is important to buy that ticket.

Victor Perton: Wayne Larkin sent in a question and he asks, "What type of brain injuries respond best to your optimistic treatment, your treatment with relentless optimism?"

Kate Gould: So, in our study we had people with a variety of brain injuries, mostly traumatic brain injuries, but also stroke, and some people with brain tumor that was not degenerative. So, they were stable. And I mean I think it's not specific to a type of brain injury. And I think, Victor, in your work, optimism isn't confined to one section of society or one diagnosis. I think it's an attitude and approach for everyone.

In terms of how people respond best, I think again, each person is different, whether they have the same brain injury or not, or no brain injury at all. So, I think some people are more naturally optimistic and some people aren't, and for some people that can be cultivated and for others, they won't. But I think you won't know until you try. And so that's what we're about. We're trying things out. And if there's some hope that things can be better and you're willing to try some things towards that, then you are on the right path.

Victor Perton: May I introduce you to Bobby Redman? Bobby Redman is a retired psychologist and an ambassador for Dementia Australia. And we've done several events with Dementia Australia and optimism is a key to the treatment dementia. So Bobby, you've got a question on rehabilitation for people living with dementia.

Bobby Redman, Ambassador for Dementia Australia: Kate. I'm very excited about what you're saying. I was a clin psych and I actually worked in the disability field, and so much of the work I was doing was similar to your own in that the positive behavioral intervention and giving people hope and looking forward. I was diagnosed with dementia in 2016, and I believe that my level of optimism and my strategies to keep myself moving is keeping me functioning well. So, my question to you is what is your perspective in relation to rehabilitation or reablement for people living with dementia? You've talked about non degenerative type disorders, but I'm interested particularly for those of us with early to mid stage dementia.

Kate Gould: Great question. And I have to acknowledge that it's not the area I work in predominantly, but I know that there's a really huge shift over the recent decades and even more recent years of looking at people and conditions that are degenerative, or where people decline and get worse over time versus a brain injury, which can be a more static event. It's a much more strength based focus in the way people work now in that there's great possibility and still great capacity for learning and adjustment. And you're a great testament and example to that.

You're a few years into a diagnosis. You are still able to do so many things, like be part of a webinar and ask questions at a panel, which many other people wouldn't have the confidence to do. So, I'm really excited to keep watching the field and how it continues to look at opportunity rather than impairment.

Michael Denton: I've worked with TBI for maybe 25 years, I guess. And I just wondered about helping people who have great self-awareness, but they're struggling. They're obviously acutely aware of deficits and just how to encourage people, particularly those people who have that self-awareness and may be quite prone to depression and have suicidal thoughts and all that. And it's just a common thing that comes up.

Kate Gould: Yes, it is, Michael. I think a really important question. My research background was looking at psychiatric disorders after brain injury and finding that there were significantly high rates of depression and anxiety in those first few years, in even the first 12 months it was high as 60% of people having psychiatric problems. So, it's a really significant issue. And in the sample of 100 plus people we reviewed, those were people that were getting the full spectrum of rehab.

So, even with services, there can be really high rates of depression and anxiety. And I don't think we have the magic answer to that. For some people, they require medication. For the people that I support, we often work with strategies and trying to help people cope. Acceptance and commitment therapy has been, I think, a really valuable approach for helping with mood after brain injury. And there's more and more studies coming out to support that. And I think it's also about finding purpose and meaning in somebody's life.

And that needs to be often redefined. If they're not able to do some of the things that they were before their injury, then it's about finding a reason to get up in the morning that is individual for them, and actually gives them a good level of engagement with their life in the world. The other thing to flag, and it's not something we know how to actually really facilitate yet, but one thing that I noticed in my research with interviews with people about depression, anxiety, and other psychiatric problems, is that, yes, there were many people who experienced those difficulties, but then there were also a group of people that didn't.

And I was really interested in that group of people who used, I guess, the trauma that they went through as a bit of an opportunity to step back from their life and reevaluate what was important to them and recalibrate how they were spending their time. And I think we got a bit of a sense of that through COVID when we were all forced to slow down, not all of us, but many of us slow down and think about our lives, and people made a lot of changes. And so I explored that in more detail, and it's called post-traumatic growth.

And I think that's something that we can flag for people and maybe they do have insight to help them understand that that's a possibility, and that the research on post-traumatic growth actually says that to be able to go through that, coming out the other side better than you were before the injury, you actually have to go through a period of depression of really coming face to face with how crappy life is, to be able to really look at life in all its sort warts and all, and reevaluate and recalibrate, to be able to process that really deeply.

I guess that's a bit of a potential silver lining for the difficulties people face, that some people, and in some of the work I've seen, a significant proportion, 20, 30% of people, can come out the other side better than they were in terms of how they view their life, or how they value the way that they spend their time. So, perhaps they were a workaholic before and now they can appreciate they've got more time for family or hobbies, things like that.

Nikki Simos:  I wanted to ask about aneurysms. And I have a friend who is 46 years of age, a female, married couple. Unfortunately, the female had recently suffered an aneurysm, and of course, the complexity of what that involves in a relationship with change of behaviour and attitudes and challenges within their relationship. So, I wonder, with your PBA approach, with the community approach that you're hoping to lead and looking at doing further, what sort of mechanisms, or protocols, or framework are you hoping to support people in that space?

Kate Gould: Great question. Thank you, Nicky. And I'm sorry to hear about your friend. So, now that we've done the trial, we've published papers explaining the research and the approach, and we've got, I guess, a few different ways to try to implement this and translate this in the community. We did a bunch of research looking at clinicians and people with injury and families, looking at what their needs were. And we heard that there was a great desire for support around this topic. Clinicians told us that they were really at the moment just struggling and muddling along with figuring out how to do this work, but they were also quite time poor and they didn't necessarily have a lot of funds to contribute to this.

So, working in the space of challenging behavior is really complex and there's not a quick fix to it. We can talk about it quite simply, we're helping people understand and work towards their meaningful desired outcomes, and along the way helping them self-regulate behavior. But the work is actually pretty hard and complex. And so we've just had some funding from the South Australian Accident Compensation Scheme, Lifetime Support Authority. We're actually trialing for the next three years an approach to train their clinicians in how to do this work through workshops and then more intensive training over six months.

So, we have a six month training program. It's not publicly available yet. We've also got a series of podcast episodes as a cost effective, time efficient way. That was another suggestion from our community clinicians. And so we've been recording interviews with people with brain injury from our trial, their family members and their clinicians, to say in their own words what this work has meant and how to do it. We're also developing a guidebook that will be for clinicians and also family members and teams that use lots of real life cases and really easy to access information.

And again, these will all be launched later this year. And the idea is to really build a community of practice, because it can be quite complex and isolating to work in this space, and it's really a matter of us all supporting each other. And I think a big part of the way I've been working is saying that we're all in this together, the clinicians, the researchers, the people with injuries, the family members. So, we should be developing these resources together. And that's what we've been doing. And along the way, because I'm a researcher evaluating this way of working, and so far we've found that it's been extraordinarily beneficial, not just in terms of the resources we create, but that process of all coming together, putting our heads together and crafting these resources can be really meaningfully beneficial for the people taking part as well.

So, we're very lucky we've had people with brain injury from our trial and family members and clinicians all contributing to podcasts and our resources. And then the final part is that I've established a community clinic from Monash University where we can train clinicians. So, neuropsychologists and speech therapy students so far from Melbourne and from New York as well, from The College of Saint Rose, and as well as registrars and a few clinicians to see how we can best support the next generation of providers so that it's not just a select few of us doing this work. So, we're doing that and evaluating all of those things as well. And that'll keep me busy for a little while.

Eva Sifis: I'm on the other side, Kate. I am a peer, I'm somebody who now has lived half my life without disability and half my life with disability. I was 23 when I was hit by a car on the Nepean highway and I sustained a severe brain injury. Before this time I was an international performer working around Australia as a dancer and in Japan and in cabaret shows. And obviously when I sustained my head injury, there was no clear pathway for me to head. And so my insurance basically left me, dropped me like a boulder from a cliff. And I had a severe brain injury.

I was a four on the Glasgow Coma Scale, three weeks in a coma. It was big. And two and a half months in PTA [post-traumatic amnesia]. So, I found that the most valuable gift that I gave myself was learning the attitude of gratitude, and I found that through gratitude. It finally hit me in about 2007, that's when gratitude came in, and ever since then my life has changed shape. And now it's just progression and all the way forward. Now I did say I was a professional artist before my injury, and now I'm a professional artist after my injury, but I'm also an arts worker.

So, from an artist, I went to disability arts and I've built my 18 year career in disability arts. Then I became a trainer and then I became a business owner. And I've built, By Accident, which is Australia's first and only peer initiated, developed and led training for other people with brain injury. And through my trainings, I recognise everybody around the table as an authority of their own experience. And we share strategies and tools that we have found as the true authorities of people living with the brain injury, we are the ones that know what the best. And so through my workshops, we glean messages from each other and it's so helpful.

And I finally spoke at the Brain Injury Australia Conference this year. So, finally I have a little bit of national awareness. I launched it in 2016 and I've been going from there, but I'm speaking too much. My question was, do you want to collaborate?

Kate Gould: Great question, Eva. And we connected last month in Sydney at the Brain Injury Australia Conference and even a few years before that. And I've just always admired your work and then By Accident movement that you've created. And I can't agree with you more. The people with the living experience are the experts and we've kind of changed even the terminology we use that's often described as people with lived experience. First of all, it's living, because it isn't in the past. And it's not just experience - expertise. So, you're a living expert on brain injury. And absolutely, I think it would be fantastic.

Eva Sifis: And I just want to commend you on this work. I don't know it in any way, shape or form. I will love to find out more about it, but I want to commend you on this because this is the way that rehab has to go. We need to step away from the deficit model and actually see brain injury as what it is. And what it is it's a complete reboot of who you thought you were. And from that point you have the absolute blessing to create your life the way you want to live it. I'm do goddamn grateful for my brain injury. It was one of the best things that happened to me.

Kate Gould:  Oh wow. You're an absolute inspiration, Eva. And what a fantastic attitude and example you set for seeing your life and your injury with gratitude and taking away such incredible positivity from the opportunity to redefine your life. That's posttraumatic growth right there.

Anne Sedgley:  I know some people who have stopped taking drugs and it has affected their thinking, and because they started off taking the drugs to escape from depression and despair, I'm wondering how optimism and proper rehab, which I don't think they mostly get, can help them?

Kate Gould: Well, I guess I can go back to Tim's quote, that optimism is a shield against despair. And if people haven't been engaged with that idea of optimism and they have had a really tough life and they have self-medicated with drugs and alcohol, it can be a really tough journey to get to the other side of that. In our trial, we did have several individuals who had a brain injury and had drug issues as well, and it's can be a really rocky road to finding a pathway out of that.

But we worked with the people with drug issues in the same way we worked with everyone else with that optimism, that sometimes meant engaging specific services for drug and alcohol. And sometimes that was really tough, that people were struggling to stay engaged with and the people around them, even the services, could struggle to stay hopeful and optimistic about their likelihood and their prognosis of sticking it out.

And so that was sometimes the work we were doing, not just with the person with the drug issues, but with the services as well and helping them to see each time the person went in and out of rehab not as a failure, but as a step along that journey. That we're learning each time why did they disengage? What could we do differently next time? And that's the optimism that others have to carry for them. That's okay, you stayed a couple of weeks and the door is open for the next time. And the more that the services actually shifted their approach, the better outcomes there were for the person with the drug issues.

And so I was lucky enough to work with one young man who he had his injury when he was 14 or 15, a bike accident, and I was seeing him now in his early twenties. And he was really frustrated by still, I guess, being treated like a child when he is in his twenties. And his Mum was amazing and helped so much, but maybe almost too much. And he felt quite dependent on her and was, like anyone going through that age and development, he just wanted to break free. And so part of that was using drugs and alcohol for him. And you could see it in his body, in his presentation, the way he looked, he was gray and skinny and scrawny and unhappy and sort of stuck in this cycle.

And for him, when we asked him what his dreams were, he said that he wanted to live a van life. He wanted to drive up the coast in a van and just explore on his own and break free and be independent. And his Mum was obviously beside herself with worry about him being able to do that. And so for us it was supporting Mum to move from doom and gloom to some optimism. What's the worst that could happen? Let's give this a try. He's going to learn some things. And so he did end up getting a van and driving up the coast to Queensland. And it was really interesting, along the way he visited some friends and some of them were drug users as well.

And from this perspective of this journey of driving up the coast in a van, he was able to of look at his friends who were drug users and stuck on the couch just using and looked at them with new eyes of, "Oh gosh, I'm out here exploring, driving around, seeing the sites, and they're just stuck." And that was a huge moment for him, and he turned his life around, and he stopped using drugs, and he got a job. And not to say that the van trip didn't have its ups and downs, but they were his opportunities to learn and figure things out.

And he came back and he got a job and he started exercising and he just turned into this sun tanned, fit, picture of health and it was such a transformation. So, sometimes it's not just about the person, but the people around them, whether that's the drug and alcohol service, or the Mum, or someone else key important in that life, that we're working collaboratively with all the important people.

Victor Perton: There's a lovely question from Taylor Jenkins, and you've answered in part.  How can we apply optimism to working with families of children and young people with acquired brain injuries?

Kate Gould:  Great question, Taylor. The work that we have done in our research is with adults, but Tim Feeney and Mark Ylvisaker who are the originators of this approach to PBS, they started working with kids and families. And so I think this approach applies across the lifespan and across diagnoses as well, because it's not as specific therapy, it's an attitude and a framework and a way of working.

And so I think for each person that we work with, even though they're all adults, they're in completely unique situations. So, we've had people who are so impaired that they were living in supported accommodation and couldn't communicate and in a wheelchair, all the way to people who were able to complete their masters after their brain injury. So, really high functioning and busy moms and people. So, I think it applies the same to kids and families as well, is that this approach of being systematic, being collaborative, treating the person as the expert on themselves.

And with kids and adults, parents, that expertise is much more shared by the parents' knowledge and understanding of their child, but in that really inclusive approach. And sometimes that's been, and through learning from Tim even more extreme, I guess, than I've learned previously. So, for example, with the guy in the wheelchair that was not able to communicate previously, when we'd have a team meeting, it would be the team meeting in another setting, in another room without him there. But with Tim, it was like, well, nothing about me without me. So, we don't really know how much this man is understanding, so let's have him in the room.

And there was a lot of kickback and push back on that, but that will trigger his behaviors, this will be too confronting, it's too complex for him. And Tim's optimism was like, "Well, let's just give it a try and see how it goes." And so he was brought into this meeting of 15 key providers from the house and the therapists in the setting. And he did engage in some behaviors of hitting at himself and that can be distressing, but after a few minutes, he settled down and it was really interesting the change in the tone in the meeting from having him there in the room, and it sort of changed the attitude of the people that supported him.

And they became also a little bit more experimental and trying things out. And that I think was this key event that really led to a different way of working and supporting him. And just in a nutshell, it went from him being put in front of a TV and fed his meals, to taken out to the park where he could have bite size meals himself and feed himself. And then now he's sitting at the table with the other residents and more engaged. And the staff became really excited about what he could accomplish, and it just kept going from there. So, hopefully that, I guess, speaks to the kind of broader approach with any age group and families as well.

Victor Perton: And that notion of having a go, innovation is underpinned by optimism. Some things work, and some things don't. Give it a go and be brave enough to say when it works and doesn't. There's a lovely question from Susan McDermott, who's with us. "One of the side effects of acquired brain injury is the psychological strength to regain independence. What do you think of the building of a triage based on physio, occupational therapy, psychological support to achieve the stated goals?"

Kate Gould:  I think it's absolutely fantastic if you have the ability and the resources to have a team, and that's the way we often work. So, for each person in the community, a new team is created and often familiar faces form that team. A lot of us work privately or for small organizations, but we form a team, and having physio, occupational therapy, psychological support, often social worker or speech therapy as well, and a carer is often a very common allied health team. And working together is really vital, so that we're all on the same page with what really matters to that person and how we can work together for that.

 In the approach that I've been talking about PBS+PLUS, I am a neuropsychologist, but the clinicians are from a variety of backgrounds. So, we have occupational therapists and speech therapists and neuropsychologists all working with this approach and bringing to the approach our own specific kind of skillset, but there's so much that's common. And we try to, I guess, create more expertise in the people with the living experience and their families so that they can become their own therapists and continue to do this kind of work.

Bernadette Cheeseman: "Damage to the amygdala influences what behavior?"

Kate Gould: An excellent neuroscience question.

The amygdala is a part of the brain, and it's involved with our emotions. And it's one section of our temporal lobe.

If you divide the brain into the key lobes, the limbic system is involved with our emotions. So, it also includes the hypothalamus and the hippocampus. So, the limbic system is the real hub of emotional processing and is connected to other brain parts.

The amygdala is typically involved in fear and how we process fear, which is important for survival. We need to feel scared if there's something dangerous.

We also know that it's involved with processing and storing longer-term information, particularly the emotional resonance of a memory and decision-making. So, if people have had damage to the amygdala, it can result in a whole range of changes to their function. So, they might be more impulsive in their decision-making and take more risks because they're not afraid of things going wrong. And take risks in too extreme ways where that behaviour can become dangerous.

Because if you're not getting that emotional response and that kind of heart rate going up when you feel a bit nervous or scared, you're not getting those signals to guide your behaviour. But for some people, it can go the other way, and they might be really fearful of things that aren't dangerous and become a bit paranoid. So, that can lead to behaviour changes as well. It can also affect your memory. So, if you don't have that emotional attachment to things, you might not remember it. So, we might remember particular events from 20 years ago, if they were emotionally very important, like your wedding day or the birth of your sibling, because there are strong emotions. So, that links with our hippocampus, that's got the memory for facts.

And it's interesting with the clients I work with; sometimes they have damage to their memory for facts, but not the damage for the memory, for the emotion. And so one of my clients will say to me, "Oh Kate, I had an awful, awful day. I got so angry and punched a hole in the door." And I'm like, "Well, what happened?" And he's like, "I don't remember. I just remember being so angry." And that's where the amygdala is still working, even if other parts of their memory aren't.

So, obviously, with your emotional hub, if there's damage to that, that can also lead to anxiety and depression. And so it can help to understand for people what's happened to their brain and why it's changed. If they can't rely on that part of the brain to automatically process fear and other emotions, they can learn different ways to consciously regulate and compensate for their mood and behaviour.

Victor Perton: What's next for your programs, and how can we help?

Kate Gould:  For our work, we are continuing to finalize all the resources we're creating and put them out into the world step by step, and continue to evaluate them.   So, if people want to stay engaged, as I said, sign up on our website monash.edu/pbsplus.

I think in terms of how to help though, I think for my area of work, we work with people in their real, everyday lives, homes, and community. And all of us here are part of the community. Brain injury is really common; it's one in 45 people. So, there are lots of people experiencing difficulties that can be often quite invisible. That's another thing about brain injury is we've had several people today speak up who have had experience with brain injury.

And you can't tell from just a conversation what difficulties they might be experiencing. So, I think wherever you are in the community, in whatever circle you are in, I think it's about patience and giving people the benefit of the doubt because we don't know what people are experiencing internally. And that benefit of the doubt, I guess, is an optimistic way to think about everyone in the community. And I think that it really helps create a better world, and a better world is a huge help to me, the work I'm doing, and the people with challenges they're experiencing.