Life after an acquired brain injury | Coping and Rehabilitation

Understanding Acquired Brain Injuries

Acquired brain injury is a leading cause of death and disability. Acquired brain injuries affect all genders and age groups, with the Child Brain Injury Trust suggesting that between 40,000 to 50,000 children acquire a brain injury each year in the UK.

Estimates suggest that more than 100 out of every 100,000 people have a traumatic brain injury which causes problems that affect their lives for over one year after the injury happened.

An acquired brain injury (ABI) refers to damage to the brain that happens after birth. ABI can occur for a number of reasons, including:

Treatment-and-rehabilitation-after-injury-or-stroke

Infection
Disease
Accident
Head trauma
Alcohol or substance misuse
Stroke
Lack of oxygen

Acquired brain injuries can be further categorised into traumatic brain injury (TBI) or non-traumatic brain injury (NTBI).

A traumatic brain injury is the result of force, such as a blow to the head, a fall from height or a car accident.
A non-traumatic brain injury is caused by a non-traumatic cause, such as a stroke or near-drowning accident, where the brain is starved of oxygen.

Both TBIs and NTBIs can result in a person acquiring an injury to their brain that they were not born with. These acquired brain injuries can have major consequences including personality changes and challenges with everyday living, which can impact the person who has injured their brain, their family, the wider community and public services.
Even after a mild head injury, some people will go on to experience cognitive issues that have a significant impact on their relationships or career. Problems are not always immediately obvious and may show up weeks (or sometimes months) after the injury.
No two experiences of ABI are identical and whilst some people are able to make a full recovery after injuring their brain, others experience lifelong changes and challenges.
In 2003, the British Society of Rehabilitation Medicine published extensive guidance in conjunction with the Royal College of Physicians regarding rehabilitation following ABI. The guidance suggested that the following common impairments, suffered by people who have had ABI, need to be checked for by doctors before patients could be considered for discharge:

Limb motor impairment (including weakness and coordination problems)
Issues with speech or swallowing
Sensory problems (including vision and hearing)
Cognitive dysfunction (in particular memory, orientation and concentration)
Problems with speech, language processing or understanding (including reading and writing)
Issues with bladder or bowel control
Emotional, psychological or neurobehavioural problems

Early detection and treatment of ABIs is key to improving outcomes for patients. It is vital that doctors dealing with patients who may have ABI have been taught how to assess patients for the above problems and that they have an understanding of the long- and short-term issues associated with brain injuries, as well as how to make plans for rehabilitation.

Immediate Challenges and Emotional Impact

Every year 350,000 people are admitted to hospital with an acquired brain injury. It can happen to anyone, regardless of your age, gender or how healthy you are. ABI can change every aspect of a person’s life, leading to serious challenges at home, in the workplace and in general life.

Emotional and psychological challenges can result from changes to the parts of the brain that deal with emotional regulation or from the frustration of living with the brain injury itself. If the injury was caused by a traumatic or violent incident, you may also experience emotional or mental problems resulting from the incident as well.

Some emotional issues caused by acquired brain injuries include:

Depression
Sadness
Anxiety
Anger/frustration
Post-traumatic stress disorder (PTSD)
Stress
Struggles with empathy/relating to others
Impulsivity
Hopelessness/lack of motivation

People with ABI can struggle in social situations and may lack a ‘filter’ leading them to say inappropriate or shocking things or behave in an unpredictable way. The change in personality that sometimes happens to people who have an ABI can be frustrating, difficult and upsetting, especially for the loved ones of the person who has undergone this change. It is possible that people go through a sense of loss or even a grieving process once faced with a loved one they no longer recognise. The good news is that in some cases, these changes are only short term. For other people who suffer longer-term changes, with the right care and support they will learn to get back to their usual selves.

An ABI can also cause other mental, physical and behavioural problems, some of which may show up quickly after the injury or incident and last only a short time, while others can cause long-term issues. This can include any of the following:

Memory problems
Speech issues
Problems with bodily functions (including bladder or bowel control)
Motor problems (including motor skills and fine motor skills)
Headaches
Problems with balance
A lack of self-awareness
Fatigue

Each individual will experience their own issues after a brain injury, with some experiencing only mild problems and others left with long-term, complex needs. Receiving good quality care from professionals and relatives will support the recovery process whilst patients learn to readjust and learn coping strategies to help them navigate the challenges they are faced with.

Coping Strategies

Recovering from an acquired brain injury can be challenging and frustrating.

Tips for people living with ABI:

Rest as much as possible and try not to push yourself too hard
Look after your health, including staying hydrated, eating a healthy and balanced diet, reducing stress
Practise good sleep hygiene and try to get at least 8 hours of sleep each night
Take things slowly and increase your activities gradually over time
Accept that you may have to ‘relearn’ simple things whilst your brain recovers
Consider attending a local support group or contacting the Headway helpline for free, confidential advice about brain injury
Engage with your GP, support team and any other services to keep your rehabilitation plan on track
Use alarms, diaries, post-it notes or calendar reminders to help you with organisation and planning
Don’t be tempted to return to work or education until you are ready

Tips for family and friends of those living with ABI:

Encourage the patient to engage with their GP and rehabilitation team
Take turns with other friends/relatives/carers to look after the patient to avoid burnout
Stay calm and collected if the patient is showing challenging behaviour – remember this is a direct result of injury to their brain and not their fault
Allow yourself to grieve for the person you have lost but don’t lose hope that they will return
Educate yourself about acquired brain injuries so you know what to expect and what signs and symptoms are considered ‘norma
Avoid stress or overwhelm
Practise self-care – you need to look after yourself too
Provide the patient with a calm and quiet environment

The Role of Rehabilitation

Caring for people with brain injuries puts a significant strain on the healthcare service. The costs associated with traumatic brain injury alone are estimated to stand at £15 billion per year (0.8% of UK GDP). It is not always possible to prevent an ABI from occurring; however, given the significant cost burden of such injuries and the life-changing effects ABI can have, safety precautions should be taken to reduce the likelihood of requiring rehabilitative care, for example:

Wearing a helmet when cycling
Driving safely
Practising good risk management and adhering to health and safety policies at work
Following work at height regulations
Not abusing drugs or alcohol
Using protective equipment when playing sports

People suffering the after-effects of an ABI may have both short-term and long-term care needs and the services they require will depend on what stage they are at in their recovery.

Brain injury rehabilitation may be done in the following settings:

In-patient care – this may be done in a hospital, or in a specialist neurological rehabilitation centre after you have been discharged from hospital. In-patient care is needed by people who have significant needs and are not yet well enough to be at home.
Outpatient care – if people are well enough to return home and travel to a hospital for follow-up appointments, they may be treated as an outpatient.
Community rehabilitation – in some cases, people may be able to go home and receive home visits from their community outreach team. This may include home visits from nurses, therapists and occupational therapists. Sometimes, community rehabilitation may be done in a residential facility.

It is not possible to give an exact timeline for how long it will take for you to be fully rehabilitated after a brain injury. Recovery rates vary from person to person and may depend on how bad the damage was, your general health, how soon you were treated and the quality of immediate care and aftercare you received.

Rehabilitation may include a mix of therapy (physical and/or psychological), medication and self-led care.

Rehabilitation services for people with acquired brain injury work best when they are:

Goal oriented
Patient-centred
Planned out on an individual basis
A coordinated effort

Accessing Rehabilitation Services in the UK

Before you leave hospital, your clinicians should make a plan for your rehabilitation. They should talk you and your relatives through the plans and give you the opportunity to ask questions.

Your care needs regarding rehabilitation will need to be assessed by professionals who will then make the relevant referrals. You may be able to access neurorehabilitation services through the NHS. You can also access specialist, private care and support if you can afford to pay for these services.

Places at rehabilitation facilities are assessed on a case-by-case basis and sometimes NHS funding is available even at private units. Funding may also come from other sources such as:

Your local authority
Medical insurance
Payouts from compensation claims (where applicable)
Charities

The specific rehabilitation services you require will depend on the difficulties you are having as you learn to cope with life after an acquired brain injury.

Primary care (your GP)
Clinical psychologist
Neuropsychologist
Counsellor
Occupational therapist
Physiotherapist
Speech and language therapist

If you are discharged from hospital after a head injury and are not referred for the support you feel you need, you are entitled to go back and ask to be reassessed. You can make an appointment with your GP to discuss this. If you are struggling with communication, you should consider taking an advocate with you, such as a friend or relative.

Support Resources and Organisations

In addition to clinical care, a coordinated effort with other key services to support people with ABI may be necessary. This may include helping them to access help with:

Welfare and benefits
Employment or employment support
Housing
Education
Organising finances
Transport
Legal representation

If you have any worries about your health or the progress you are making after a brain injury, you should make an appointment to speak to your GP in the first instance.

You can find a list of useful organisations, from helplines and charity groups to accessible holidays and legal services, on the Headway website. Headway is a UK-wide charity that aims to improve the lives of people living with ABI by providing education, funding and links to approved care and rehabilitation services.

The issues encountered as you learn to live with an acquired brain injury can be wide ranging and you may benefit from a range of different services depending on the problems you are having. If you and your partner are finding it hard to cope with your altered personality and/or physical problems that affect your relationship, you may benefit from relationship counselling.

If anger is an issue, you may want to consider trying some anger management strategies or attending therapy. You may also require support from an organisation that advocates for the specific reason you acquired your brain injury, for example: