Understanding and responding to behaviours that challenge following acquired brain injury

Dr Will Curvis

Understanding and responding to behaviours that challenge following acquired brain injury

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I am a psychologist who has worked over the last few years in a range of different settings, including hospital settings, rehab settings, and also people's own homes, predominantly after different kinds of brain injury. I hope this sets us up nicely to think a little bit today about the kinds of behaviors that can sometimes cause difficulties or challenge after brain injury. This is going to be a whistle-stop tour of a session because it is obviously a really big topic, but I hope to introduce some key principles that can be helpful in guiding the approaches we take.

First, I encourage you to think about the kinds of behaviors that come to mind when we think about the word 'challenging.' What behaviors cause difficulty for family members or professionals? There can be lots of things that go with that, such as disengagement from therapy, impulsivity, aggression, or competitive behavior. This is by no means an exhaustive list. The definition of 'challenging behavior' is a bit tricky to pin down, but generally, we are talking about behaviors where there is some sort of negative consequence or implication for the individual, where quality of life is affected in some way. I like the definition from the Royal College of Physicians and the British Psychological Society, which talks about the impact on the individual as being excluding in some way and leading to responses from services or professionals that impact the person's quality of life or safety.

It is also really easy and normal, especially when we are stressed, to think negatively of these kinds of behaviors. Sometimes that can lead to quite stigmatizing and negatively framed comments. I don't know if any of these might sound familiar if you've worked with people with behaviors that cause challenge, but we sometimes see quite negative judgments, which I think can just set us down a really negative path in terms of being able to provide a personal and compassionate way to support the individual.

In order to come up with a framework to think about this, I think it is really helpful to recognize and remember that all behavior occurs in a context. There are things to do with us as individuals that drive the behaviors we have, but that behavior also happens in an environment, and the environment in which it is happening is what will determine whether it is challenging or not.

Thinking firstly about the factors to do with the individual, these can be particularly challenging after brain injury because we know that brain injury can cause a massive, wide range of difficulties. This might involve physical problems like pain, sensory processing issues, or mobility problems. It might also involve emotional distress—brain injury often goes hand in hand with emotional changes like low mood, depression, anxiety, fear, problems with anger or frustration, trauma responses, or grief. The list goes on and on.

People often experience cognitive problems as well, which might be anywhere from very mild to significant and severe. They might affect things like memory, retention, concentration, or the thinking skills that allow people to manage situations effectively. Fatigue is also worth mentioning; for all of us, we are more likely to respond differently in situations when we feel tired, but the kind of fatigue experienced by people after brain injury is often really significant and can drive their ability to manage situations in a positive way.

I want to identify the complexity of the kinds of cognitive problems that somebody experiences. If I were to ask you to wave your hand, you have to be awake and alert, paying enough attention to listen. You then have to process the information to make sense of the instructions, integrate that with what you know, and turn it into a movement. As we move up the pyramid of cognitive problems, we can see that somebody who struggles with attention, information processing, or memory might take longer to make sense of a prompt. If I give you a problem to solve, even a simple one, it might be awkward or uncomfortable. After brain injury, that kind of problem-solving might not work as well; it might take longer or be less effective. Finally, we need to monitor our actions to know when to stop. That ability to monitor might be a challenge for somebody who struggles with processing after an injury.

These kinds of difficulties can affect everyday simple tasks, and that can sometimes affect the way that people interact and their responses to different situations. For example, if someone in a hospital struggles to pay attention or remember what people are saying, we wouldn't be surprised if that person became disorientated or confused. Perhaps as a result of the injury, they are more disinhibited and act without thinking, potentially becoming aggressive or demanding because they don't understand why they are in the hospital. That would be upsetting and difficult for staff.

Of course, we also need to think about the environment. If staff members tell a patient they are safe, but that information isn't retained, that's not going to help. If some staff are impatient while others are ignoring the person, that inconsistency is just going to drive more feelings of being unsafe, more confusion, and more disorientation. Also, think about your average hospital environment—it is busy, noisy, and has lights and buzzers going off all the time. When somebody needs quiet, they might very quickly become overstimulated. We must also be careful with medications; sometimes people assume we can give sedative medications to help calm someone down, but that might actually dampen the cognitive skills they are already struggling with, leaving the person more confused.

All behavior occurs in a context, and that context is going to be very different in different situations. What might be appropriate in our own home might be different to what is okay to do in a hospital environment. Fundamentally, it is important that we think about the culture of that environment and the quality of the interactions. A lot of behaviors that cause challenge are driven by fear, anxiety, and feeling overwhelmed. Providing a safe base and good, trusting relationships is absolutely key. Consistency is important, as are clear boundaries, good communication, and opportunities for positive social connection. We must think about stimulation—when somebody might be becoming overstimulated and needs rest, or when they might be under-stimulated and bored.

Fundamentally, it is about understanding these behaviors as a form of communication. A lot of people after brain injury might struggle to explain what it is that they are feeling or what they need, so the people around them need to work a little bit harder to understand those reasons. This is not about excusing behavior; I'm not saying we should let people off the hook no matter what they do. Behavior can still be unacceptable, but it is important for us to understand the good reasons a person might have for that behavior. By doing that, it allows us to wonder a little bit about how we might be able to offer a more compassionate response.

It is worth thinking about what kinds of needs drive behavior. Some common ones include a lack of social connection or attention, resulting in boredom or loneliness. If a person finds that they get a response from staff when they act out, they are much more likely to keep doing it. We should also consider if the person is trying to escape or avoid something unpleasant, like pain or discomfort. There might be tangible or practical needs, like being too hot or needing a drink, which they cannot communicate. Sensory processing issues also mean that the brightness of a room might be really difficult for someone.

In our training sessions, we talk a lot about positive reinforcement-based approaches. Fundamentally, this is about reducing the need for the behavior. If somebody is shouting in a hospital bed because they are lonely, let's give them more attention. By showing them better ways to get their needs met, we can have a positive impact. That might take years, practice, and consistency, but it is worth it.

These behaviors are complex. After a brain injury, the systems that allow us to calm down and regulate our emotional responses might not work as well. I often use the analogy of a Ferrari with no breaks because that is what it can feel like. A person might go from being calm to really angry very quickly. That still doesn't come from nowhere. I often challenge teams when they say someone gets angry 'out of nowhere' because there is always a trigger and a process of escalation. It just might be quicker than it was before the injury. There are still signs that we can watch out for.

This is about getting to know the person and being tuned in to their triggers. Often, the plans we put together emphasize a proactive approach. Sure, there are things we might need to do in the crisis management phase to keep people safe—like giving them space—but we are never going to change the behavior by only focusing on that. The good stuff, the thing that makes a difference, is being proactive when the person is feeling calm. That is when we can help the person learn new skills, have conversations about what triggered an angry response, and think about how to change the environment or communicate better.

A key part of the environment is the relationship with the people around them. Unfortunately, we see in practice that if somebody shows aggression, staff teams often pull away. It is harder to have positive relationships when somebody is challenging, but it often becomes a vicious cycle. If the staff spend less time with them, that person feels even more frustrated and less understood, which just keeps the cycle escalating. Ultimately, it is about empathy. Even if we don't necessarily see anxiety or distress, and it just comes out as anger, understanding that this behavior might be driven by other emotions is really helpful.

To bring this to a close, my take-home message is that any behavior we experience as challenging is more often than not a way of communicating something. We have to work a little bit harder to think about how we can understand what that message is and what the good reasons might be for why that behavior is happening. That might be complex and might need specialist input from a psychologist or other health professionals, but there shouldn't be any kind of behavior that we just write off as the person being 'difficult.' There is always a reason, and while we might not resolve everything, we can generally make improvements to people's lives.

In this expert webinar, Dr Will Curvis will discuss what behaviours can be challenging following ABI for families and professionals, thinking about how these can be best understood and responded to within a compassionate and person-centred framework.

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