Brain injury
Contents
What is acquired brain injury?
You may be wondering what acquired brain damage actually is. To put it very simply, it is a type of brain damage that a person is not born with and that they only face during their lifetime. Therefore, it is also sometimes referred to as acquired brain damage. This does not include congenital diseases such as cerebral palsy or brain damage caused during childbirth.
Acquired brain damage includes traumatic brain injury – caused by an accident, brain damage caused by a stroke, brain tumor or infectious brain disease.
The following articles will help you get a basic idea about the issue at hand. You will learn about the individual types of brain damage, the classification of the severity of the damage, and the consequences that can last for a different period of time or even for a lifetime after the damage. You will also learn how such brain damage can affect the life of the whole family. We also include links to services and other practical information, or you can download one of the information brochures.
Types of acquired brain injury:
Traumatic brain injury
Traumatic brain injury usually happen suddenly and without the slightest warning, in situations that almost anyone could find themselves in. These brain injuries are mainly caused by events such as traffic accidents, risky sports, work injuries or as a consequences of a fall. Around 36,000 people are admitted to hospital with a brain injury each year. Among the age groups most at risk are young men between the ages of 15 and 29 (most often due to a traffic accident or risky sport). Then there are people over the age of 65, who often fall. Men are two to three times more likely to suffer this type of injury.
About 85% of people suffer a so-called mild brain injury, when the time of loss of consciousness does not exceed 15 minutes. These are most often concussions, when the patient only experiences a short loss of consciousness or disorientation. Most people with mild brain damage return home from the hospital with a few bruises and make a full recovery in a short time.
About 10% of people are diagnosed with moderate brain damage, where the loss of consciousness lasts at least 15 minutes and at most 6 hours.
About 5% of people suffer severe brain damage, losing consciousness for more than 6 hours. These individuals face long-term, complex consequences of the injury that affect their personality, relationships, thinking, mobility and communication, which can then make it difficult for them to lead independent lives.
A very small percentage of people suffer such a severe brain injury that they remain unconscious despite all medical care for a very long time – weeks, months and in some cases even years. These people are thus dependent on the 24-hour care of the nursing staff and their families have to cope with serious changes in their personal, family and work lives.
Cerebrovascular events
Cerebrovascular events (sometimes also referred to as ictus or stroke) are relatively common diseases that can be very serious. Compared to other organs, the brain is more sensitive to a lack of glucose and oxygen. If supply is disturbed, the functioning of the brain is threatened and it is damaged. CMP most often affects older age groups (65+), but younger people are not an exception either.
Cerebrovascular events can have two basic causes:
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- ischemia, or disorder of the blood supply to a part of the brain due to blockage of an artery by an atherosclerotic plaque or thrombus (blood clot),
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- bleeding into the brain (hemorrhage) as a result of rupture or rupture of a blood vessel (most often due to untreated hypertension or the rupture of a so-called aneurysm).
Nerve tissue is then damaged by bleeding or swelling in the given location.
You can learn more about the types of cerebrovascular accidents and the mechanism of their occurrence, consequences and treatment options in our Neurorehabilitation brochure (available in Czech only).
Brain tumors
This is a very diverse group of diseases, the basis of which is the pathological growth of tissue in the brain. Tumors can arise directly from nervous tissue, or they can occur here as metastases from tumors of other organs. They can be benign or malignant. In terms of severity and consequences, these depend a lot on the type of tumor, its location in the brain, its size, and also the extent to which it grows into other brain tissue (all these factors influence whether the tumor can be removed completely or partially). Treatment may include chemotherapy, radiation therapy (radiation) and, if possible, surgical removal of the tumor.
Inflammatory diseases of the brain
Brain inflammations are usually caused by bacteria, viruses or fungi. Depending on where the inflammation occurs, these diseases are divided into meningitis (inflammation on the surface of the brain, in the area of the meninges), encephalitis (inflammation of the brain tissue itself) and meningoencephalitis (a combination of both). They are treated with antibiotics or antiviral drugs according to the identified causative agent of the disease.
Consequences of brain injury
The consequences of acquired brain damage significantly affect the lives of those who have suffered the damage, as well as their family members. They are often traumatic not only for their scale and severity, but also due to them often not being visible. Many limitations (especially related to cognitive and psychological functioning) are not obvious at first glance, and a person faces the fact that those around him either consider him a “freak”, or believe that he or she can manage the same common activities that a healthy person can.
The following brief overview of the consequences therefore includes not only the limitations of physical and sensory functions, but also the consequences related to cognition, communication and psychology and the associated social limitations that the person concerned and his family have to deal with. More detailed information is clearly explained in our Neurorehabilitation brochure (in Czech only).
Physical and sensory functions
Muscles and sensory organs themselves are usually not affected by an injury or incident. However, as a consequence of the damage to the control functions of the brain, a person may be unable to carry out a movement, manage the coordination of movements or see or hear as before. Statistics show that a larger percentage of people with a traumatic brain injury make a good physical recovery, but many less visible problems can persist long-term.
In addition to movement restrictions (balance disorders, coordination of movements, paralysis of a part of the body), other difficulties may appear, such as increased fatigue, headaches, sleep disorders, tinnitus (ringing in the ears) and other sensory restrictions (taste, smell, sight, hearing), or epilepsy. These represent a significant problem and can meaningfully worsen the quality of life of people, even if the people around them often don’t even notice them.
Cognitive functioning
Cognitive functions are the thought processes that enable us to recognize, remember, learn, and adapt to ever-changing environmental conditions. These include memory, concentration, attention, speed of thought, understanding of information, spatial orientation and visual perception.
Attention deficits are very common in brain damage. They are most often manifested by a reduced ability or inability to focus attention, maintain it, not be distracted by surrounding sensations or concentrate on several things at once.
Cognitive functions also include so-called executive functions – the ability to solve problems, plan, organize, the ability to have an overview of the situation and judgement. Individual cognitive functions are located in different parts of the brain, so brain damage can damage all or just some of them. The good news is that cognitive functioning can be improved through training.
Language and communication
Any pathological process that takes place in the human brain can cause a speech disorder, even if the speech centers are not directly affected. In such a case, the “humanity” of a person is affected – speech is a specifically human ability which distinguishes a person as a species from other animals.
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- Aphasia is the most common impairment – the ability to understand what the other person is saying or the ability to express oneself, to correctly formulate words or sentences, is impaired.
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- Dysarthria is another common impairment – a disorder of articulation. The disabled person knows what they want to say, but the speech is slurred, difficult to understand.
A person with impaired communication skills is severely handicapped. They are limited in their communication with other people and often suffer from social isolation far more than the failures in communication themselves.
The goal of speech therapy is to teach an adult who has lost their previously fully developed and commonly used ability due to brain damage to communicate.
Emotions and behavior
Emotions are psychological processes, including subjective experiences of pleasure and displeasure, accompanied by physiological changes (change in heart rate, change in breathing rate), motor manifestations (facial expressions, gestures), changes in alertness and focus. Emotions are evolutionarily older than rational action, and therefore their manifestations are stronger and more difficult to influence.
Emotional changes occur in anyone who has suffered brain damage. It can be nervousness and restlessness or emotional instability, which can occur in any post-traumatic phase. A person may also lose the ability to control their emotions, irritability and outbursts of anger may occur (also due to difficulties associated with communication disorders or cognitive functions). In some cases, a person cannot experience emotions – we are talking about emotional flatness, numbness. States of anxiety, panic, post-traumatic stress disorder or depression, states of apathy and loss of motivation are also very common.
Changes in personality and behavior tend to be the most challenging aspect of a brain injury, and affect people’s social functioning and especially their relationships with their loved ones, friends or colleagues at work. These include, in particular, rigid thinking and the inability to adapt to change, self-centeredness, loss of inhibitions, impulsiveness or aggression, and sometimes even violent behavior. The whole situation is often complicated by the fact that some people after brain damage have a very limited insight, i.e. they are unable to accept the changes.
Social consequences and limitations
All of the above-mentioned consequences will naturally affect a person’s social functioning – i.e. their personal, family, work and social life. The whole situation is difficult not only for the person with the disability, but also greatly affects his loved ones and family members. It is very difficult for both parties to accept the fact that life “will not be the same” and to adapt to the changes brought about by brain damage. Whether it is work life or a return to former interests and habits. However, even life after brain damage can be filled with contentment and joy, or new friends and challenges.
Life after brain injury
Brain damage affects not only the individual, but the entire family. Sometimes it is family members who suffer most because they see the situation more realistically. The conditions and context in which families must function also change greatly.
Families commonly arrive at their unconscious loved one’s bedside at the intensive care unit and wait to see if they wake up, having no idea what will happen when they do.
In the next phase, families look for information and services that would help their loved one recover or rehabilitate damaged functions.
Last but not least, they must gradually come to terms with the limitations that brain damage brings to everyday life.
Families have to deal with the diagnosis of a life-threatening or significantly limiting disease in the same way as the patients themselves. Even in the experience of families, we can find a curve of psychological response to the arrival and development of a serious illness, as described by Elizabeth Kubler-Ross. Therefore, we can perceive caregivers as additional and often neglected victims of trauma, who are deeply affected by the situation of a loved one after brain damage.
Importance of family care
The role of the family in caring for a loved one after a brain injury is irreplaceable. In the period shortly after a brain injury, the closest family members often feel helpless and think that there is nothing they can do for their loved one. However, without realizing it, they are usually already doing a lot.
Informing
It is very important for families to ask medical staff questions – what the individual devices are for, how they should approach their loved one, what their current state of health is, etc. In doing so, they gradually gain important information that will help them understand their role in care. The more information relatives receive from medical staff, the better they will approach the person with a brain injury and also the medical staff, as they will not feel that the doctors are withholding important information.
Family members can also be helpful during hospitalization by telling the medical staff information about the patient, e.g., what he liked, what he did, what he enjoyed, what he didn’t like, etc. This can help the medical staff, for example, in choosing stimuli for the patients during their unconsciousness.
Stimulation
Family members can start stimulating their loved one themselves. However, the application of the stimulation program by family members should be preceded by an agreement with the nursing staff. The stimulation program is multisensory, which means it targets all the senses. Stimulating an unconscious patient can lead to faster and better recovery. In order for it to be effective, it is necessary to give the patient a sufficient amount of undisturbed rest between its individual phases.
If relatives decide to apply a stimulation program, they should think about what their loved one used to be interested in, what he liked to do, what usually annoyed him or what he didn’t like. It is good to compile the stimulation program individually based on the knowledge of the person in a coma.
In the brochure Coma after Brain injury: How you can help you will find certain recommendations on how to apply the stimulation program. Jenny Sheridan, author of the booklet, recommends starting with simple basic stimuli and gradually incorporating more complex stimuli as the patient’s condition improves.
Strong or contrasting sensations, or those that can evoke strong associations or memories, tend to be most effective. In the case of hot or cold sensations, family members should first test the temperature of the object on themselves. If the patient reacts to these sensations with fright, anxiety or tiredness, it is recommended to stop the stimulation. On the contrary, it is good to repeat such sensations that provoke the greatest reactions.
Defending the rights and interest of a loved one
Another important role that families can play is defending the rights and interests of their loved one. This role permeates all phases of brain injury, from acute to home care. For example, family members can provide their loved one with comprehensive rehabilitation, care by high-quality experts, necessary aids, follow-up social services, care allowance, disability pension or other benefits to which persons with disabilities are entitled.
Rehabilitation in the home environment
Family involvement in the treatment of a loved one after a brain injury is very important, because when a loved one is discharged from the hospital to home care, family members often take over the roles that medical staff performed in the hospital. Families can do certain exercises with their loved ones to improve spasticity, balance, release tightened muscles, and overall body stretching. In addition, family members can train with a loved one memory, attention and other cognitive functions impaired by brain injury or practice communication skills, especially for those loved ones who have aphasia or other communication problems after brain injury.
Increasing independence and competence
Based on the biopsychosocial condition of the loved one and the discretion of the family, family members should try to make their relative as independent as much as possible. This is meant to enable the loved one to do everything for them to be self-sufficient. Families should no longer meet all of their loved ones’ demands, as they often do when their loved one in hospital care or shortly after discharge from a medical facility. Conversely, they should support their loved one after a brain injury in all activities of daily life, even if at the cost of an occasional accident such as spilling a cup of tea, making an appointment with someone other than his attending physician, or forgetting what to buy.
A person with a brain injury needs an opportunity to test their skills and either succeed or fail. If family members continue to provide excessive care, they are subtly sending a signal to their loved one that they are incompetent and do not trust them.
The most important thing families can give their loved ones affected by brain injury is to stand by their side, support them, love them the way they are, create a safe space and environment for them to share feelings and experiences, and be willing to change some of the roles and lifestyle within the family.
Tips for carers and family members
Ever since your loved one suffered a brain injury, it can feel like everything revolves around them. You are looking for information, the best possible care, maybe you are learning to practice a stimulation program, and on top of all this you may still be working, taking care of the children and the household. But your needs may not be taken care of sufficiently. This may cause you to be under a lot of stress, which does not help either you or your loved one.
Don’t be afraid to ask for help
Caring for a loved one after a brain injury is a difficult life situation that requires a lot of effort, patience and often renunciation. Therefore, it is an almost superhuman task for one family caregiver to provide all the care. Asking for help is not a sign of weakness, but rather of strength and consideration of the future need for care. Are you shy to ask for help or are you waiting for someone close to you to offer you help? Your loved ones may also be waiting for you to ask for help, they may think you don’t need their help and support, or they just don’t know how to offer it. Therefore, be assertive and tell yourself about her.
Make time for yourself
While your loved one is in a coma, you are probably spending most of your time at their bedside, with no time for your hobbies, interests, or friends. This is natural in the acute phase of treatment. At the same time, however, there is a danger that this habit will persist for many years and it will be difficult for you to overcome it.
It is extremely important to stay in touch with friends who support you and help you see the situation from a different perspective. At the same time, try to talk to them about other topics, not just about your family situation.
We also recommend participating in self-help groups for family members caring for loved ones after a brain injury. You can find support, information, understanding and maybe even friends here.
Take care of yourself
You can only take good care of your loved one after a brain injury if you pay attention and dedicate time to your own needs as well. Therefore, try to eat well and regularly, sleep and relax as much as possible. This will help you gain new, much-needed strength. Caring for a loved one in a coma is often really difficult, and as a result of repressed feelings, psychosomatic difficulties may also appear. Therefore, as soon as you start to feel any health problems, do not hesitate to see a doctor.
Don’t be afraid to show your feelings
After a loved one’s brain injury, many family members will have a mixture of feelings such as: anxiety, anger, guilt, exhaustion, sadness, etc. What is uncomfortable for family members in the early stages of treatment is that they are not in control of the situation and cannot control most things themselves. However, it is extremely important that you become aware your feelings and are able to talk about them.
If you are anxious that you’re not receiving enough information, ask the attending physician for more information, what the device is for, what will happen in the next few days, what you can do to improve your loved one’s condition, etc.
You may be angry with the attending physician, nurses, immediate family members, or the loved one themselves after the brain injury. You don’t have to be ashamed of these feelings. The important thing is to recognize what triggers your emotions and then avoid those moments (if possible). It usually helps to confide in someone you trust about your feelings. If that doesn’t help either, try to release your anger in some useful physical activity (sport, cleaning the house…).
A brain injury also offers a lot of room for blame-seeking. Parents blame themselves for buying their child a motorcycle or signing them up for a riding course, etc. They may also blame themselves when they take a moment to themselves or think about what it would be like if their loved one wasn’t there. Accept these feelings along with the fact that some things were out of your control. Try to occupy yourself with some interesting activity or allow yourself to spend time blaming yourself only, for example, between 7 and 8 in the morning.
Learn to relax!
10 rules for communication with a person with brain injury
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- Try to eliminate distractions in your surroundings as much as possible.
- Try to maintain eye contact.
- Speak in a simple and clear way, ask direct questions, do not give a lot of information at once.
- After a while, repeat what you have already arrived at in conversation.
- If the person goes off topic, bring them back.
- Don’t pretend you understand if you don’t and don’t be afraid to ask the person to repeat what has already been said. If necessary, repeat simple sentences and, if you cannot understand, try lip-reading or ask the person to write down what they want to say.
- Be patient, give the person time to express themselves, and if necessary offer words or expressions that might help.
- Use gestures.
- Ignore inappropriate behavior, stay calm as much as possible.
- Do not speak to the person as if they were a small child or a poor person to be pitied.
Links for services and state financial support
