- Language Impairment – Aphasia
- The Importance of Expression and Context
- Effects on Relationships – The Family Perspective
- What is Really Happening?
- Navigating Confusion – For Families
The effects of brain injury are classified under four categories – cognitive, physical, behavioural and emotional.
Any, and all, of these, can play a role in communication difficulties, so, several factors can affect communication, for example:
- Memory – being unable to recall the information you need
- Attention – being unable to stay focused
- Processing – being unable to process the incoming information in a timely way that allows you to keep up
- Judgement – can be affected by the loss of experiential memories, so people struggle with understanding their reasoning
- Social skills – can be affected by changes in emotion and behaviour
- Self-awareness – people can lose the ability to place themselves and their thinking within a context
- Disinhibition – no longer understanding what is appropriate
We can see that there can be a large number of issues that can affect communication.
It is important to note that many factors can exacerbate these problems, such as stress, alcohol or illicit drug use, medication side-effects, a poor diet, and so on.
Reading and writing skills can also be affected – although not always together.
A speech and language therapist can help with communication impairment.
Language impairment – aphasia
Aphasia is a condition caused by injury to the language centres of the brain.
Injury to the Wernicke’s area and the Broca’s area of the brain lead to the two main forms of aphasia – receptive and expressive.
The term dysphasia, which means a partial loss of language, is commonly used interchangeably with aphasia.
The complexities of language mean that the observable outcomes can be confusing to families and friends.
For example, some people:
- can read some words but not others
- can struggle with writing or recognising all the letters of the alphabet
- might be able to read but have difficulty processing the information or be unable to recognise some words
- may struggle with remembering the information given in simple sentences
- might be able to write but not read
- speak about and be involved in one topic but be unable to engage at all in another
People living with aphasia will have no notion that what they are saying makes no sense to others.
The importance of expression and context
Even with written information, communication can still break down. Seek expert advice from a specialist, such as a speech and language therapist, neuropsychologist, or occupational therapist.
One of the reasons for communication break-downs is language. It is almost as though there needs to be a ‘brain injury dictionary’ giving descriptors of the words people are using to try and describe how they are feeling.
For example, someone may say that they feel overwhelmed; however, what they are feeling has minimal similarity to those experiences a non-brain injured person would feel.
For someone living with a brain injury feelings of being overwhelmed are very often entirely persistent and pervasive in every waking moment. The brain is overloaded by everything in the environment and it takes time for people to learn what they need to pay attention to and what they can safely ignore.
For uninjured people feeling overwhelmed is usually only temporary because their cognitive skills kick in and quickly start to organise incoming information into manageable pieces. These processes no longer work the same following a brain injury, and often the skills of filtering incoming information, being able to break this down, process and understand it, can take a long time to rebuild.
It is precisely these kinds of functions that once lost, may never fully return to what we would understand as ‘normal’ functionality. Even when someone is aware of their deficits, this doesn’t mean they can do anything about them.
Knowing that any skill is lost doesn’t mean that you can include its use; it doesn’t work this way. You no longer know how it feels in the brain to use that lost skill.
You have to rewire, and this takes a lot of dedication, stamina, and repetition.
Effects on relationships – the family perspective
Communication problems can be one of the primary causes of relationship breakdowns following a brain injury.
It can be difficult for you to understand the difficulties your loved one is having with communication and for you to learn to defer automatic relational judgements.
When you have known or lived with someone for a long time, the way you converse and interact becomes a habit. You intuitively know how someone expresses themselves and unconsciously pick up on all manner of cues, such as body language, inflexions, tone, and even personality traits such as humour or dry wit.
These tell-tale indicators that usually enhance relationships, can be changed quite drastically by a brain injury. It isn’t the person who has changed – the cognitive impairments change the way the brain operates, and this causes the differences.
It is important to make allowances for these changes but at the same time to offer gentle guidance and supportive feedback.
Very often, communication won’t feel any different to the person living with brain injury.
For them, sometimes the only noticeable signs that something is awry is having awareness of problems with word-finding, or they will start a sentence and not be able to remember why.
They may repeatedly interrupt you and other people because they are desperate to say something, and terrified they will forget. They will also interrupt you if you change the subject before they are ready.
You may have to learn to reorganise you day and priorities, and ask other people to support you so that you aren’t distracted and have time to make all communication count.
If you fail to make the adjustments needed, you may inadvertently add to the communication problems in your household. Things have changed and you might be the only one who can figure out how best to accommodate the changes. It can be very hard to step back and do this objectively when you are dealing with your own feelings of ambiguous loss.
You are also dealing with multiple, complex and drastic overnight changes. Be gentle with yourself and take time to familiarise yourself with other peoples’ experiences as this may help.
When you have a brain injury there is often a feeling that everything you want to say holds more importance than it ever did before. This panicky feeling has several causes, including a psychological need to be able to do something, anything, that feels as though it is contributory and relevant. It also results from those rare moments of clarity which people want to share while they are in their moment.
These can be rare glimpses into their world and sometimes they want to try and share what they are going through as part of a desperate need to fit in and to be accepted.
Underpin – don’t undermine.
Everyone wants to feel accepted and normal so making assumptions, and assuming they can no longer think for themselves, can lead to families telling their loved one what to do, what they should think, and how they should behave.
Think of a pinball machine. Your loved one is still pulling the lever in exactly the same way as they have always done, but the ball now no longer follows the same path. The path is now erratic and the results you will see will be bizarre. What you see isn’t a manifestation of the impetus; it is the result of neuronal pathways being damaged.
The person you love isn’t only doing their best, however that appears, they are putting in monumental efforts in every waking moment. It is okay to let things go – even if they feel like they were personal in nature.
To keep relationship healthy, people need support and to be allowed to realise one thing at a time about the changes in their functionality.
People are very keen to present well for the same reasons – to fit in and be accepted, and the importance of this cannot be stressed enough.
When everything you do from the second you wake up, until the second you go to sleep takes enormous amounts of effort, and you are afflicted in every moment by strange, confusing, and frustrating thoughts and feelings that the brain itself cannot understand, feeling that others are supportive is crucial.
Communicating with someone who has a brain injury can take a lot of conscious effort as well. You need to give more time, be patient, listen, and pause to absorb before you respond. In many ways, taking this stance can help reduce perseverance where someone will use multiple means of saying the same thing to feel understood. If you change the topic before your loved one has finished, they will try even harder to explain because they will think you haven’t understood their point. They want to do everything they can to help you understand why they are struggling or what they want to achieve; and they are often doing this with impaired access to memories, knowledge, vocabulary, ideas, values, preferences, beliefs and more.
Talking helps people to practice many skills, such as, maintaining their attention, switching topics and keeping their focus, organisation of thoughts, understanding relevance, listening, and so much more. Conversations can also improve memory as the activity necessitates maintaining awareness of the subject.
What is really happening?
From the inside, having a conversation can feel very much the way it did before the brain injury; although you may notice getting stuck with remembering what you wanted to say, or finding the words you need.
The familiarity happens because the ‘drivers’ are still the same. You are still pulling the same pin-ball lever that you always did.
The same part of the brain is trying to do the same work it did before.
Even though language, and other areas important for communication may be injured, other areas close by will be trying to learn to take up the function.
Problems come when the outgoing communication gets caught in the crossfire of neurological injury in the speech and language centres and also by other cognitive deficits. It is the brain that is damaged – not who you are.
There may be many complex reasons why you might not understand that there are problems with the way you communicate. You might be more aware of feelings of frustration or confusion than you are of there being differences between what you think you said, and what you actually said.
Other people around you can give you feedback on this and if you try to be open-minded and trusting, you will be able to recognise when someone is sincerely trying to help you.
Sometimes it can be difficult to trust other people, because you instinctively recognise you can no longer trust your brain. If you feel this way then you are doing well – the perception that things are going wrong, is a big step forward.
Worrying too much or trying to hard with communication, can make things worse because of the added pressure you are putting on the brain.
Try to remember that meaningful communication always takes effort and even where there is no brain injury, understanding isn’t always a surety. People only take in a small portion of what they hear because of the way their brain matches their own preferences, values and beliefs to what you are saying.
If people do point out their problems with what you have said, you may take it personally or even vehemently deny issues mentioned.
Usually, the best signs that something is going wrong with your communication skills, comes when you practice reflective techniques, which enables you to spot problems and gain insight for yourself.
Even when corrected, for example, someone lets you know that you are discussing a different topic to them, it can take several minutes to figure this out.
Although some people are uncomfortable with long pauses, it is essential to take your time. Let other people know you need time to think, write down as much as you can remember, and find a quiet space to reflect. Come back when you are relaxed and understand a bit more.
If you forget where you were at, this is okay – it will either come back to you or it wasn’t as important as you thought. If it was important, your brain will keep working on it and it will pop back out another time.
It can help if people around you make a brief introduction to the topic they want to discuss, and it can also help to let people know when you have finished what you wanted to say.
When you are struggling with word-finding, it can be helpful if others give you a little space before they begin to help. If you are really stuck, ask people to help.
There are prompts your family and friends can use, such as, asking you what other words are similar or what letter the word starts with. This can help you work things out on your own.
See if you can describe the meaning or description of the word you are trying to think of. If your family get involved with these approaches and encourage you to try, this also help improve cognitive flexibility and independence.
When people on the outside help, this assistance can feel like interference or a lack of trust or patience.
Try and keep your conversations short, make allowances for fatigue, and plan anything important for the part of the day you have the most energy.
If you can, get a referral to a speech and language therapist who will be able to offer a lot of support, and will teach you strategies that can help.
Navigating confusion – for families
It can be unhelpful to be worried about what not to say to someone living with a brain injury.
Focusing on possible pitfalls can make it more difficult to know how to help, and can leave you stumped tying to find alternatives. Let conversation be natural and normal but slow down, listen, consider, and redirect if needed.
Even though you will have a clear idea of your intentions and will consciously know precisely why and how you are addressing someone, it doesn’t mean you will always be right. Also, try and recognise that it will be horrendously difficult or impossible for the person you love to reach the same levels of comprehension. It is their brain that ‘can’t; these disabilities aren’t generated by attitude but may be influenced by previous habitual attitudes.
Even the best-meant comments can leave people feeling misunderstood. A useful place to start is to acknowledge that your life experiences are not comparable to the life changes your loved one or friend is living. For example, you may have misplaced your keys several times in your life, but you don’t do it many times every day with almost all the articles you need.
The feeling you have when you can’t remember where you put your keys is fleeting, but your loved one will be living with those feelings all day and everyday.
Many of the statements we make to be empathetic use comparison as a method of communicating how much we care. For example, saying ‘I know how you feel’ is only genuine if you have honestly been through the same thing.
People living with brain injury recognise when empathy is out of context and it can make them feel misunderstood and even belittled.
However, compassion, caring, and understanding or wanting to listen is more helpful, so we might say, ‘do you want to talk about it,’ rather than trying to let people know we think we know how they feel or inadvertently give the impression you think you have been through something similar.
Try to switch your internal agenda from wanting to be helpful, to wanting to learn. Focus on listening and the practical aspects of what you can do and try to accept that the people most likely to understand, are those who are also going through recovery from brain injury.
Not everyone wants to join a local support group but many individuals are more than happy to chat with and make friends in online groups.
Comparing people to others who are also living with disabilities or disease is also unhelpful. People will find their intrinsic routes to inspiration and will understand that life is tough for other people in different ways. Helping people to remember what is personal to them and reminding them about things they believe in is a much better strategy, but again, needs to be used with compassion. Let people know that you are on their side and try asking them if they want to talk about whatever it is that they are struggling with, rather than trying to interpret their answers for them.
Sharing personal anecdotes or parts of your life story as a comparison will very likely create confusion and increase stress. Listening to others and trying to fathom their point while trying to solve a particular problem, can overload the processing abilities of the injured brain. Sometimes people are better left to figure things on their own however long it takes them.