Identity change after brain injury

I am very delighted to be here, and thank you for the invitation. Thanks to Headway UK. This is a topic that has been present with me throughout my clinical work, and currently, I work in a university role. I am mostly involved in the research side of things and maintain an interest in identity change, but taking a slightly different angle.

I will be talking today about work that represents ideas from about 20 years of experience in different settings, taking different approaches. I think it is a really key one. At the beginning of my journey, asking people what their emotional needs were regarding brain injury and trying to make sense of how we might treat that, around 2001, people said, "I want the old me back." It is one of the first things on people's shopping lists in a rehab setting, so that became the focus.

For this webinar, there are four areas I will cover: what we mean by self and identity in general, thinking about how brain injury can affect self and identity, feeding into one of the key things I worked on some years ago which is the Y-shaped model, and then some ideas about what can be done to help manage identity changes.

Let's start by thinking about what we mean by self and identity. I am a psychologist, so I will approach this from a psychology point of view. It is a huge topic, but there are two key areas that I think are important when we think about brain injury and identity. First of all is the social approach. This is thinking about self and identity in the context of our social experiences. The idea is that our identity comes from and is defined by our social experiences—the groups we belong to and the activities we do. Social identity theory suggests that identity is defined by the "we," the people we spend time with, engaging in shared activities where we feel we belong. In those relationships, we might have people who we aspire to be like, or relationships that are particularly meaningful. It is about fitting in and defining ourselves as like the people we like spending time with, and unlike those we feel less comfortable with. Within the field of health, people are interested in social identity theory because we get emotional and practical support from these groups.

Moving from the social identity idea of the "we" or "us" to the personal identity idea of the "I" or "me," we look at the cognitive approach. This is about the internal workings of self and identity. The self is something that comes from our autobiographical memories—those memories of particularly important experiences in our everyday life. These feed into our internal model of self, our self-images, life story, beliefs, values, and attitudes. What I like about this model is that memory not only forms the facts about ourselves but also informs a goal system. We have a working self that is active at any given moment, with particular goals and aspirations. We have this individual model of self where patterns in our experiences are tagged with people, places, and meanings, forming a self-concept that helps us anticipate the future.

So, identity is a bit difficult to pin down. It seems there is potential for us to have multiple selves or identities. We have a biological element, a psychological element, and a social element. These aren't competing explanations; they exist at the same time. Identity is not defined just by what we do, but also by our values, beliefs, goals, how we connect with others, and our feelings about ourselves. This is constantly being recycled, even when we are doing nothing, through the brain's default mode network.

How does a brain injury affect self and identity? It impacts across the biological, psychological, and social areas. People often express a sense of loss of identity and grief. Following a brain injury, the size of a person's social network often reduces, and the membership changes, spending more time with family and caregivers. This changes the social self. There is also a lot of comparison to how they used to be versus how they are now, and negative comparisons are associated with poorer mental health. However, people might still have the same deeper values and beliefs as they used to.

In rehabilitation, we look at Kurt Goldstein's holistic theory, which says identity operates to preserve a sense of coherence of self. When sudden changes happen, we are vulnerable to having an emotional, catastrophic reaction to this changed circumstance. Because of that, people may avoid situations that trigger that reaction, which can lead to a loss of abilities due to isolation. We need to formulate the consequences of brain injury as being distributed across these areas.

My Y-shaped model is a model of the rehabilitation process with identity at the core. The top of the "Y" represents the experience of self-discrepancy after a brain injury. The process is one of engaging people in reflecting on those identity changes and creating a safe environment. By letting go of that discrepancy, the person has the potential to explore their life anew and engage in new opportunities. We can use the Y-shaped model as a tool to work with the injured person and their family, thinking about what was there before, how they see themselves now, what has not changed, and what might be possible in the future.

To manage identity changes, we should look at things that are unchanged, such as strengths and values. If we define identity by values rather than just specific activities, we can find new ways to enact those values. We should also create safe, humanizing spaces where individuals feel valued, perhaps through peer support, where they can be givers of care rather than just recipients. Connection with others is super important. Services should work together to create a range of spaces and opportunities, and for the brain-injured person, there must be opportunities to share their experiences to support their memory and reinforce their new identity. We must remember the needs of families in their own right, as working with the whole family is a key part of identity work.