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Supporting a Loved One with an Acquired Brain Injury

Acquired brain injuries cost the UK economy £15 billion per annum due to premature death, health and social care costs, continuing disability and lost work contributions. 

In the UK there are approximately 1.4 million people living with a brain injury. According to Headway there were 356,699 UK admissions to hospital with acquired brain injury in 2019-20. Males were 1.5x more likely than females to be admitted for a head injury. 

Acquired brain injury

Understanding Acquired Brain Injuries

An acquired brain injury is a brain injury that is not present at birth, but occurs at a later stage in someone’s life. It is a fairly common occurrence with around 350,000 people admitted to hospital each year with an acquired brain injury. It usually occurs as a result of a traumatic head injury or a stroke. It can also be as a result of some other diseases, substance or alcohol use or the brain being starved of oxygen. 

The effects of acquired brain injury can range from being mild to completely debilitating. Even after a mild head injury, brain functioning can be affected temporarily. This is called concussion. This can lead to symptoms such as headaches, dizziness, mood swings, anxiety, depression, fatigue, irritability and problems with memory. Most people with a mild head injury will be symptom free within a few weeks; however, some people can take much longer to fully recover. The more severe the injury is, the more serious the symptoms are likely to be. People with more severe brain injuries are likely to have more complex, long-lasting symptoms which can include:

  • Changes in behaviour and personality.
  • Difficulties in their existing relationships or their ability to form new ones.
  • Finding it difficult or being unable to lead an independent life.

There are several possible causes of an acquired brain injury. A traumatic brain injury is where the brain is injured as a result of a trauma or injury to the head. Examples of a traumatic brain injury include:

  • A road traffic accident.
  • A fall.
  • A violent assault.
  • An accident in the workplace or at home.

Other forms of an acquired brain injury can include:

  • A tumour.
  • A stroke.
  • Brain haemorrhage.
  • Encephalitis (an inflammation of the brain usually caused by an infection).

The brain is a complex organ that controls thoughts, memory, emotion, touch, motor skills, breathing, vision and hunger. It is the part of the body that interprets signals and sends instructions to the rest of the body. Every sense we have relies completely on the brain and it functioning well. This means that damage to the brain can affect every part of the body. 

The symptoms depend on which brain area is affected and the severity of the injury. Some of the causes of acquired brain injury can include:

  • A lack of oxygen to the brain – this is called anoxic brain injury. An example of this could be brain injury caused by nearly drowning.
  • Disease – this could include Alzheimer’s disease, dementia, cancer, multiple sclerosis or Parkinson’s disease.
  • A stroke – a stroke is a serious and life-threatening medical condition that happens when the blood supply to part of the brain is cut off.
  • A physical injury – this could happen due to an impact or blow to the head, for example in a car crash, sporting accident, or a fight or fall.
  • Alcohol or drug use – this can poison the brain.

Different parts of the brain control different parts of the body. Depending on which part of the brain is injured and how serious the damage is will determine how the person is affected and what symptoms they will present with. Injuries to the front, back, left or right of the brain all have very different effects. Within the brain there are lots of complex, subtle parts which can be damaged. 

Brain injuries usually result in some form of cognitive impairment and can result in:

  • Loss of language/speech.
  • Problems with memory.
  • Problems with visual-perceptual skills.
  • Reduced concentration abilities.
  • Reduced motivation.
  • Difficulties processing information.
  • Impaired reasoning skills.
  • Difficulties with empathy.

Changes in behaviour and personality are common in people with certain types of brain injury. Personality changes after brain injury are some of the most difficult symptoms to cope with for both the person with the brain injury and their family members. The location of the brain injury can change how the person behaves. An example of this is the orbitofrontal cortex, which helps control impulsive behaviour and plays a role in someone’s empathy towards others. If this area becomes damaged, the person may struggle to empathise with other people and might engage in more reckless, risk-taking behaviour.

A head injury can also affect a person’s mood and emotions. This can make them seem more depressed, angry or irritable than they were pre-injury, causing others to believe that the person has had a change in personality. Treating the emotional and behavioural effects of a brain injury can often help the person return to their old self again.

Emotional and behavioural changes after a head injury can include:

  • Severe mood swings – also known as emotional lability, emotional reactions can be extreme and the changes in emotional state can occur quickly.
  • Aggressive behaviour – this is the most common change in personality after suffering an acquired brain injury. Research has shown that around 30% of people who have suffered an acquired brain injury report that they feel increased levels of anger and will display symptoms of aggression. This is thought to be caused by damage to the brain’s impulse control centre being more susceptible to overstimulation and fatigue.
  • Flat effect – this is reduced emotional expressiveness after a brain injury. An example of this may be someone being unable to show emotion through facial expressions, or appearing less engaged or less interested in other people or things they once enjoyed. While brain injury can cause symptoms of apathy, it is important to remember that most patients with flat effect do still care about their loved ones but have lost the ability to express their feelings.
  • Egocentric behaviour – many acquired brain injury patients seem to develop a more self-centred personality which is caused by damage to the frontal lobe. Areas of the frontal lobe contribute to a person’s ability to empathise. When this area becomes damaged, this can impact on a person’s ability to empathise, leading to egocentric behaviour.
  • Obsessive behaviour – this may cause distress when a person’s routine changes or it may cause them to continuously talk about the same subject and struggle when the topic changes. They may get stuck in certain patterns of thought or activities and they may be unaware of this and unable to change it. This is thought to be caused by reduced cognitive flexibility. Cognitive flexibility allows people to move between different tasks and change their ways of thinking in order to solve problems.
  • Disinhibition – this is the loss of control over behaviour which can result in socially inappropriate behaviour.
  • Impulsiveness – this may mean that the person with the brain injury speaks or acts without understanding the possible consequences of their behaviour.

The Emotional Impact on Loved Ones

An acquired brain injury can have profound emotional impacts on the loved ones of the person affected. These impacts can be wide-ranging and may evolve over time as the family and friends of the person with ABI navigate the challenges and changes that come with the injury. Some common emotional impacts experienced by loved ones of those with an acquired brain injury include:

  • Shock and grief – the suddenness of an ABI can be overwhelming. Loved ones may experience shock and disbelief, especially if the injury was caused by a traumatic event such as an accident or stroke.
  • Grief and loss – there can be a deep sense of grief for the loss of the person as they were before the injury. This grief may feel similar to mourning, as the loved one may feel that they have lost the person they once knew.
  • Anxiety and uncertainty – the future becomes uncertain, and loved ones may worry about the long-term implications of the injury on the person’s health, capabilities and quality of life.
  • Financial concerns – anxiety about financial stability can arise, especially if the person with ABI was a primary earner or if costs for medical care and rehabilitation are involved.
  • Stress and overwhelm – caregiving responsibilities. Taking on a caregiver role can be incredibly stressful. The demands of providing physical care, managing medical appointments, and offering emotional support can be overwhelming.
  • Burnout – chronic stress and exhaustion can lead to caregiver burnout, characterised by physical, emotional and mental fatigue.
  • Changes in relationships – relationships may shift dramatically. Spouses, parents or children might need to take on new roles and responsibilities, which can strain family dynamics.
  • Social isolation – the demands of caregiving and the behavioural changes in the person with ABI can lead to social withdrawal, resulting in feelings of isolation and loneliness.
  • Emotional rollercoaster – loved ones might fluctuate between hope for recovery and despair when progress is slow or setbacks occur. This emotional rollercoaster can be draining.
  • Guilt and anger – feelings of guilt over not being able to do more or anger towards the situation can be common.
  • Depression and mental health struggles – the chronic stress, grief and emotional turmoil can lead to depression. Loved ones may struggle with feelings of sadness, hopelessness and helplessness.
Loved one with brain injury

Educating Yourself about ABIs

When educating yourself about any medical condition, it is important to obtain your information from reliable sources. Some of the ways to educate yourself include:

  • Connecting with medical professionals. Going along to appointments and asking questions will be useful so that you understand the specifics of your loved one’s condition.
  • Participating in online forums and support groups to hear first-hand accounts and experiences of people who have had similar experiences.
  • Reading or listening to personal stories and case studies can provide a deeper understanding of the day-to-day challenges and triumphs.
  • Subscribing to newsletters from relevant organisations and following blogs and social media accounts of professionals in the field.
  • Learning about the rights of people with brain injuries and available support systems.

Effective Communication

Communicating with a loved one who has an acquired brain injury can be challenging, but with patience, understanding and the right strategies, it can become more effective. Understanding the specific type of brain injury and its effects can help you anticipate potential communication difficulties. ABIs can affect cognitive functions, memory, speech and behaviour differently depending on the severity and location of the injury.

Some other things to consider include:

  • Minimise distractions – choose a quiet and comfortable environment to talk, free from background noise and other distractions.
  • Be patient – give your loved one extra time to process information and respond. Avoid rushing them or completing their sentences.
  • Adapt your communication style – use simple language. Speak clearly and use simple, short sentences. Avoid jargon or complex language that might be confusing.
  • Repeat and rephrase – if your loved one doesn’t understand something, try repeating it or rephrasing it in a different way.
  • Use visual aids – sometimes visual aids like pictures, gestures or written words can help convey your message more clearly.
  • Ask yes/no questions – these are easier to answer than open-ended questions.
  • Acknowledge efforts – recognise and praise their efforts to communicate, even if the outcome isn’t perfect.
  • Stay positive – maintain a positive attitude. Your loved one might feel frustrated or embarrassed, so your encouragement can be very reassuring.
  • Non-verbal communication – pay attention to body language. Sometimes non-verbal cues can be as informative as words. Watch for facial expressions, gestures and other body language.
  • Use touch – if appropriate and comforting, a gentle touch can convey support and understanding.
  • Establish routines – routines can provide a sense of security and predictability, making communication easier.
  • Use memory aids – tools like calendars, notebooks or apps can help your loved one keep track of important information and reduce anxiety about forgetting.
  • Seek professional help – consult a speech-language therapist. A professional can offer tailored strategies and exercises to improve communication.
  • Join support groups – support groups for families dealing with brain injuries can offer practical advice and emotional support.
  • Maintain patience and empathy – understand their perspective. Try to see things from their point of view and be empathetic to their struggles.
  • Be flexible – adapt to their changing needs and abilities over time.
  • Practise self-care – take care of yourself. Supporting someone with an ABI can be demanding. Ensure that you also take care of your own mental and physical health in order for you to be able to remain a strong support system for your loved one.

Providing Practical Support

Providing practical support to someone with an ABI depends upon their individual needs. Some things to consider include:

  • Physical support – help with mobility aids such as walkers or wheelchairs. Ensure the home environment is safe and accessible, with ramps, grab bars and clutter-free spaces.
  • Encourage rehabilitation – support attendance at physical therapy sessions. Engage in recommended exercises or activities at home in order to aid recovery.
  • Provide cognitive assistance – use tools like calendars, alarms and reminders to help manage daily tasks and appointments. Break tasks into smaller, manageable steps to prevent overwhelm.
  • Assist with daily living activities if needed – this may involve helping with personal care tasks such as bathing, dressing and eating. Support meal planning and preparation, ensuring a balanced diet to promote overall health.
  • Promote social engagement – encourage and facilitate social activities and outings to prevent isolation. Help maintain relationships by organising visits or virtual meetups with friends and family.
  • Advocate for independence – support their involvement in decision-making processes about their care and daily activities. Encourage autonomy by allowing them to do tasks independently when possible, even if it takes longer.
  • Assist with legal matters – help manage legal and financial matters, including accessing disability benefits or insurance claims.

Encouraging Independence and Rehabilitation

A personalised rehabilitation plan that considers the individual’s specific needs and goals will be a necessary starting point. This plan should involve a team of professionals, including neurologists, physiotherapists, occupational therapists, speech therapists and psychologists. 

Physical rehabilitation will include physiotherapy which will focus on improving mobility, strength and coordination. Regular exercise tailored to the individual’s abilities can significantly enhance physical independence. Occupational therapy will help the person relearn daily activities, such as dressing, cooking and using technology. The home environment can be adapted in order to support these activities, including installing grab bars, using adaptive tools, and creating an accessible layout. 

Cognitive rehabilitation is just as important, and the use of things like memory aids, calendars, alarms and notepads to assist with memory issues can be beneficial. Cognitive exercises that improve problem-solving, attention and memory can also be useful.

Some people may benefit from cognitive-behavioural therapy (CBT) as it can address challenges like impulsivity, poor judgement and emotional regulation. 

Social and community integration is important for promoting independence and rehabilitation. This can include:

  • Social skills training – relearning and practising social interactions can improve confidence and relationships.
  • Community activities – encourage participation in community events, volunteering or joining clubs to foster social connections and a sense of purpose.
  • Education and work – if possible, support them in returning to work or continuing education. This might involve vocational training or adjustments at their current job or school.

Coping Strategies for Loved Ones

It is crucial for loved ones to seek professional support for their mental health, whether through therapy, support groups or counselling. Over time, some loved ones may find ways to adapt to the new normal, developing resilience in the face of ongoing challenges.

Building a strong support network of family, friends and community resources can be vital for emotional well-being. Learning about ABI and effective caregiving strategies can empower loved ones and reduce anxiety. Prioritising self-care is essential to maintain physical and mental health. This includes regular breaks, healthy eating, exercise and hobbies.

Connecting with others in similar situations through support groups can provide emotional support, practical advice and a sense of community. Professional counselling or therapy can help you process your emotions and develop coping strategies.

Navigating the Healthcare System

Navigating the healthcare system after someone has an acquired brain injury can be complex and overwhelming. The process will usually involve initial treatment and stabilisation. Ensure the person with the brain injury receives immediate medical attention. This may involve emergency services, hospitalisation and possibly surgery. Diagnosing a brain injury will require a combination of medical assessments and investigations. There are various tests available, including X-rays and CT brain scans, which can help pinpoint the exact areas of the brain that are damaged. 

Once stabilised, the patient may be moved to an acute rehabilitation facility. These centres provide intensive rehabilitation to improve function. Neurologists, neurosurgeons and rehabilitation specialists are crucial in the early stages of diagnosis and treatment. The treatment plan will depend upon the type of injury and how severe it is. Some traditional treatment approaches include:

  • Rehabilitation therapy – this typically includes physical therapy, occupational therapy and speech therapy. These therapies aim to improve mobility, strength, coordination, balance, fine motor skills, communication and swallowing abilities.
  • Cognitive rehabilitation – this involves various techniques and exercises designed to improve cognitive functions such as attention, memory, problem-solving and executive function. Cognitive rehabilitation may include activities such as memory drills, attention exercises and problem-solving tasks.
  • Psychological support – acquired brain injuries can have significant psychological effects on patients and their families. Psychologists or counsellors may provide individual or family therapy to help patients cope with the emotional impact of the injury, adjust to life changes, and develop coping strategies.
  • Educational support – for people who have sustained brain injuries during childhood or adolescence, educational support may be necessary to address any learning difficulties or academic challenges that arise as a result of the injury.
  • Vocational rehabilitation – for people of working age, vocational rehabilitation may be necessary to help them re-enter the workforce or transition to alternative employment that is compatible with their abilities post-injury. This may involve vocational assessments, job coaching and training in adaptive skills.
  • Community reintegration – as people progress in their recovery, efforts are made to reintegrate them into their communities and support their participation in meaningful activities. This may involve helping people access community resources, recreational activities and social support networks.
  • Family education and support – family members play a crucial role in the recovery process and may require education and support to understand the effects of the brain injury, assist with caregiving responsibilities, and advocate for their loved one’s needs.
supporting person with acquired brain injury

Advocate for the patient’s needs within the healthcare system. Be persistent in seeking the best care possible. Educate yourself and others involved in the care about ABI to make informed decisions. Stay updated on new treatments, therapies and research related to brain injury recovery.

If you have an acquired brain injury due to a stroke, Stroke Association help people to rebuild their lives after stroke. They also offer local support services and groups and their dedicated Stroke Helpline where you can contact them on 0303 3033 100. 

Brain Injury is Big support the severely brain injured and their families. 

You can find brain injury support in your area by contacting Headway.  

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About the author

Claire Vain

Claire Vain

Claire graduated with a degree in Social Work in 2010. She is currently enjoying her career moving in a different direction, working as a professional writer and editor. Outside of work Claire loves to travel, spend time with her family and two dogs and she practices yoga at every opportunity!

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