Understanding Personality Change After Brain Injury

Thank you very much for inviting myself and Marie-Claire. I will speak briefly on behalf of you, Marie-Claire. Thank you. What is going to happen is I'm just going to present a little bit about what we know about personality change after brain injury, and then I'm going to hand over to Marie-Claire, who is going to talk about her own experiences.

Just a little bit of background on how we became interested in this topic. There's a group of us based at University College London and Addenbrooke's Hospital—researchers and clinicians who have been working with Headway East London for several years on a number of projects. We became really interested because, during our discussions with members, personality change after brain injury was something that came up in a lot of conversations with members and their families. They frequently shared their experiences and asked us as researchers what we know about personality change after brain injury. But actually, that was quite a hard question to answer. A lot of the information is scattered all over the place. So, what we did is something called a systematic review. In science, when you want to get lots of medical research and try and get the best answer and synthesize all of that information, you do something called a systematic review. This is a formal process where we search all the databases and medical research and then synthesize everything to come up with some of these answers to some of these really important questions that the members had raised.

The first question that came up is the question of how is personality change defined, which really leans on this question of how is personality defined. This can be quite hard. It's one of those things that we talk about all the time, but when you ask people what they are talking about when they are talking about someone's personality, sometimes we struggle a little bit. Psychologists tend to use this definition: a set of enduring traits, behaviors, thoughts, and emotional patterns that consistently influence how an individual interacts with the world, others, and themselves. But there's still quite a lot of uncertainty.

So, this was a bit of a challenge. And then we decided to take a different tack: instead of trying to define personality and personality change, we decided just to see how it was defined in the medical studies that were researching personality change. Every time one of these studies mentioned a symptom of personality change, we wrote it down. The list we got is absolutely massive. You can see that probably any aspect of human behavior has been defined as personality change at some stage. There's mental health problems, changes in mood and emotions, changes to your behavior, being a bit impulsive, thinking skills, social aspects, our interpersonal lives, motivation, activity, identity, and self-esteem. We took this list and looked at which were the things most commonly identified as personality change in these medical studies, and this was the list that came up: irritability and frustration, depression, unpredictable changes in emotions, anger, withdrawing from social situations, anxiety, being impulsive or impatient, being restless, sleep disturbed, being fatigued, and being aggressive.

When we presented these results to members at Headway and Romford, they had some really interesting thoughts that also came up in some of the work we did with Headway East London. They said, "It's interesting to hear how you researchers and doctors define personality change, but this misses out some really important stuff that affects me as a survivor or a carer." Frequently, people said that sometimes things change which aren't on our list, which may seem subtle but have been really important for them as a family. Sometimes they said, "Something's changed; we can't quite put our finger on it, but it's had a really big effect on us as a family." They mentioned being less enthusiastic, less affectionate, less interested or motivated, or sometimes a little bit obsessive. It's fascinating to hear from Marie-Claire how complete this list seems, because it will tell us about where medical research is lacking in understanding this problem.

There was one study I found really fascinating. They asked survivors of brain injury and their families if they had a personality change, and they tended to agree—about 70 to 80 percent of the time. But in this study, there was almost no agreement on which specific personality traits had changed. There may be lots of reasons for this; it might be down to typical disagreement, or it may be that brain injury can affect your ability to judge yourself. We know that this dilemma—is this them or is this the brain injury?—can become quite important in some of these discussions.

We also tried to answer how common is personality change. We looked at two definitions: personality disorder, which is a severe form, and any personality change detected by rating scales. We found that after traumatic brain injury, 28 percent of people had a personality change so severe it might be diagnosed as a personality disorder, and at least 50 percent of people would have had personality change recorded. These are quite high levels, probably more common than depression or anxiety after brain injury. We also tried to understand how long it lasts, and the studies tended to show that personality change remained stable or constant over the years. However, members at Headway have told us they feel they have grown as a person, and perhaps these medical studies aren't picking that up.

Finally, we looked at what treatment and support has been researched. Virtually no studies have tested treatment for personality change. There are some studies on medication for aggression, but that is a very specific aspect, and the majority of people won't be aggressive. We found no studies that had researched psychological support for survivors or their families. Just because it hasn't been researched doesn't mean it isn't going on; for example, Headway East London has a family therapy service, and we have psychologists that support people. This support is done based on what is going on for them rather than studies. Now, I'm going to hand over to Marie-Claire.

Hello. My name is Marie-Claire. I had a brain aneurysm 10 years ago. My immediate change in my personality was when I woke up; I had no feelings for my children at all. Before I had the aneurysm, I used to take in teenagers and babies—the people that others didn't want because they were too difficult. So, I had so much love to give, but after I woke up, I had no love to give. I recognized my children, but there were no feelings there at all for them. I had to take time to love them again; I had to learn to do it again. That was a massive personality change. My aggression was off the scale; I would stand on my bed in the hospital and shout at people, which wasn't something that would have entered my mind at all before. When I came home, I almost killed my partner; I ripped an iron out of the wall and threw it across the rooms, and if he hadn't ducked, I'd be in prison right now. I knew what I was doing, and I enjoyed being bad; it was like an alter ego had come out. I was such a good person before, but now I strive to be not a great person, and it gives me a little bit of pleasure.

I am so different to who I was before. I couldn't hold down a job now for nothing, yet I used to look after 15 men in a property maintenance company. I was so driven, but now I have a pile of clothes on my floor that has been there for two weeks. The "alpha" in me has gone completely; I'm more of a "beta" now. My personality did a complete 180.

I have become less physically aggressive, but the verbal aggression is still there. There are other things that have changed. I have a first-class degree in math, but I can no longer count money; that was my superpower, and it's completely gone. I mourned that a lot. I wasn't even a mother anymore. I had a 10-year-old I wasn't allowed to speak to because I spoke about sex constantly, 24/7. I split up with my partner of 25 years six months after I came back out of hospital for no good reason; I just felt like it. I feel my emotions are blunted; I don't feel any of the highs I used to feel, especially with loving somebody. I have a granddaughter now, and I could take or leave her, which is a really weird thing to say, but that's how I feel. I don't let anybody know that because it's not normal. I still don't have deep feelings for my children or my grandchild, but I fake it a lot to appear like the family woman I used to be.