A Life Re-written - brain injury survey

Our Action for Brain Injury Week 2024 campaign, A Life Re-written, has sought to explore these changes and illustrate life before and after brain injury.

As part of the campaign, we launched a set of surveys to explore what contributes to the experience of life feeling so changed after brain injury. The surveys contained both quantitative and qualitative questions to gather experiences from people with lived experience of brain injury on how their lives had been changed by the injury.

The surveys were completed by a total of 3,693 people affected by brain injury. Of these, 2,406 were brain injury survivors and 1,287 were family, partners, friends and carers of survivors.

Here are some key findings, and a selection of quotes from survey respondents. 

Brain injury and mental health

The impact of brain injury on mental health has been well documented, with brain injury being linked to a range of mental health conditions such as depression, anxiety and post-traumatic stress disorder.

Seven out of ten brain injury survivors and carers report that their mental health is worse, with anxiety and depression commonly reported.

Brain injury survivors and carers commonly experience worsened mental health after brain injury, with depression and anxiety being especially common. Living with the consequences of brain injury caused worsened mental health in many survivors. Carers often attributed this to their concerns over the survivor’s well-being as well as the changes experienced in their own lives. Anniversaries of injuries are particularly sensitive times. Carers as well as survivors can feel traumatised by circumstances surrounding the injury.

Need support with your mental health after brain injury?

The Headway helpline offers a free and confidential support service to help anyone experiencing the effects relating to brain injury. Freephone: 0808 800 2244 | Email: helpline@headway.org.uk.

Changing life goals

Over three-quarters of brain injury survivors (78%) have had to change their life goals because of their brain injury.

Types of goals that needed to be changed varied, but often related to:

• Career prospects
• Retirement plans
• Sports and hobbies
• Undertaking further studies
• Getting married, having children or becoming a grandparent
• Travelling
• Owning one’s own property.

“My entire life and plans were changed. I had career goals, now I will never be back in that job. I wanted marriage, kids and a house…now it’s completely unknown..”

67% of carers have had to change their life goals because of the injury.

Meet Liz and Justina, whose lives were completely re-written when mum Liz suffered a stroke at just 37.

One survey respondent told us:

“Initially I was studying when my dad got sick. So I gave that up. I also changed jobs and initially was working part-time; I now work full-time due to the cost of living plus supporting my dad. It is hard, but with all of life’s experiences I have learnt to embrace this - my goals may have changed but that doesn’t mean there still aren’t goals I’m working towards achieving.”

Read more about caring for someone with a brain injury.

Developing new skills after brain injury

Around a third of brain injury survivors (34%) have developed new skills since their injury.

Various types of skills were reported, including:

• Coping skills to manage the effects of brain injury, such as being able to monitor behaviour and using breathing exercises;
  “I've worked hard to learn new skills to counter-balance my behaviours and impulses to control them and to be more socially acceptable.”
• Positive personal traits including perseverance, empathy, kindness, confidence and a greater appreciation of life;
  “I have a glass-half-full outlook now, and I am more optimistic.”
• Daily living skills, with many survivors specifically describing new cooking skills;
  “New work skills and qualifications, knitting as I mentioned earlier, basic baking, I make a mean Victoria Sponge now!”
• Recreational skills, with a wide range of hobbies described including art, sewing, gardening and sports;
  “Learning to play piano. New gardening techniques.”
• Educational/vocational skills, assisting with career prospects.
  “Since my brain injury and first-hand experience of feeling a complete loss of personal power (and losing my job) I have retrained as both a teaching and learning assistant in schools and am now a registered member of the British Association of Counselling and Psychotherapy having taken a diploma in therapeutic counselling.”

52% of brain injury survivors have tried new activities since their brain injury that they had not considered before the injury.

“I'm happy that I was able to learn how to build dry stone walls as I really wasn't sure if I'd be able to learn anything new again. I had a great teacher though - very kind and patient!”

“There is much enjoyment to be found in trying out new activities, especially outside in nature. Change is everywhere, outside us and inside us and nothing is forever - keep on pushing yourself when the time is right and rest when it isn't.”

Social life after brain injury

60% of brain injury survivors experience a worsened social life after their injury.

Reasons given for social life being worse included the following:

• Struggling with the effects of brain injury in social environments, such as anxiety, overstimulation and concentration difficulties.
  
  “I struggle in social situations due to anxiety and sensory overload.”
  
  
• Fatigue affecting energy levels to socialise.
  “I don’t have the stamina that I once had and the fatigue really kicks in regularly, hence I don’t do or go to half the things I used to.”
  
  
• Friends failing to understand or accommodate for the effects of brain injury.
  “I struggle in public and have lost friends because they don’t understand the new me.”
  
  
• Friends no longer staying in touch or including the survivor in social activities.
• Being unable to remember social events.
• Socialising being a different experience due to no longer drinking alcohol.
• A lack of interest in socialising any longer.
• Practical issues with socialising, such as being unable to drive, work taking priority, fear of stigma and having less money.
  “Better in that I have more friends but worse in that I can’t afford to do as much anymore.”
  “I am still a social person however anxiety and depression effect it as well as if alcohol is involved people see my wobble and assume I'm drunk when it's my disability it makes me wary or discourages me from going out.”

Receiving peer support after brain injury is a largely positive experience, with the benefits including being connected, interacting with others and providing and receiving support. Peer support after brain injury has also been found to have the potential to positively influence activity and participation.

Find details of your nearest Headway group or branch offering peer support.

Download the full report or a short-form summary to explore the results.