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Loss of Insight – For Families

Loss of Insight – For Families

*Loss of insight is very common

*What it means when someone has a loss of insight

*How the world looks from the inside

*How the world looks from the outside

*Getting help

Introduction

Loss of insight is prevalent after brain injury and can show in many different ways, most noticeably when people are unable to self-feedback or process information about themselves, their actions, communication and behaviour. When this deficit isn’t understood, or people don’t know about it, the challenges it can raise can quickly disseminate out – turning ripples into tidal waves. People living with a brain injury can struggle with understanding the world around them and where they fit in. They can easily misinterpret incoming information that is related to themselves and can have difficulty in understanding how they relate to others, facts and data.

Loss of insight happens when someone is unaware of the cognitive, emotional, and behavioural changes caused by their brain injury and the term is used interchangeably with lack of self-awareness; however, while both are caused by disruptions to the executive functions, it is the loss of experiential memories which adds to the loss of self-awareness. They are experienced very differently.

Loss of insight causes people to struggle with self-observation, and they have trouble with reflecting on their thoughts and actions after an event. Loss of self-awareness, on the other hand, causes people to sense a ‘loss of self,‘ which can be very frightening and disturbing.

When a loss of insight and loss of self-awareness happen together, it can be challenging to help people understand what is happening to them. Speaking factually, in medical terms or trying to offer feedback in personal terms can often make things worse. It is better to lead people towards consideration about themselves and give them time to figure things out on their own.

People may be desperate for help, but don’t know what type of advice to ask for because of a lack of understanding about their confusion. They may have no realisation that anything is wrong or may blame others for upsets and arguments or a lack of knowledge. While some people are in psychological denial during the time they are trying to come to terms with all the changes, this is not a determining factor of lack of insight although if it coexists individuals may be unaware of this.

In all cases, it will feel to people as though they are doing the ‘right’ things in their usual way.

People struggle to understand they need help

Dealing with the outcomes that transpire from a loss of insight, is usually extremely problematic for everyone. It is rather like people observing that someone looks ‘fine’ from the outside when they aren’t, but in this case, it is the feeling of being ‘fine’ on the inside that gets in the way. People might not even recognise how tired or lacking in energy they are. They may not realise that they are not contributing in the ways they did before. They often have no awareness that they are the cause of many of the issues that arise, and it may not occur to them to consider this.

One of the biggest hurdles to be crossed is helping people understand that they need help. Lack of insight can also be very problematic for professionals to manage and can have an impact on rehabilitation. Often people receive feedback with distrust and are sceptical about efforts designed to help them understand.

It can be distressing because the ‘internal’ information that should help people to understand, i.e. self-feedback, is missing. For example, if someone is restricted from carrying out a particular activity they will only know they are being told not to do something – they will be unable to fill the gaps which should help them understand why and will miss understanding the reasons behind this even when they are pointed out. The primary and automatic workings of the brain continue in the same vein so, in effect, the brain itself believes that things are business as usual. Helping people to understand this can lead to breakthroughs and to them being open to receiving help.

The problems lack of insight cause

Family and friends may struggle with knowing what to do for the best and, when many of their efforts fail, they may feel disempowered themselves.

When the intention is to protect and help a loved one it can be very hard for relatives and friends when they receive negative responses such as feeling ignored or shut-out or having someone shout at or argued with them over almost every shared event or communication. Helping can start to feel like you are not helping at all, and people can become resigned and upset when someone continues to act inappropriately or dangerously and doesn’t seem to care about how anyone else feels. They do still care, but this caring ‘can’t get out.’

Families can become desperate and will recognise they need help. Because their loved one is unable to see their point of view cognitively, they often refuse point blank to be involved with any rehabilitation or talking therapies. Just the mere suggestion of getting help can leave people living with a brain injury feeling uncared for and misunderstood because they can’t see what those around them can.

Things can become more confusing for everyone when the loss of insight isn’t ‘total.’ For example, someone may be aware of other physical injuries, or that they can’t remember things, but may have no idea that any other issue exists. The ‘evidence’ can seem contradictory, and this can lead people to think that their loved one is in psychological denial, rather than understanding that they are unable to choose which things they are aware of that have changed.

The danger is between being able to tell the difference and being careful not to put all behavioural changes down to a lack of insight. There are many outcomes of brain injury that can all play a role in changes in behaviour and understanding.

From the inside

From the inside it can feel as though you can’t do anything right. It feels as though you are always being told off, and that no one understands you. The problems don’t feel as though they are coming from the inside because the motions of intention and sponsoring thought feel the same. People begin to wonder what on earth they did that made people stop listening and caring. Most people don’t get past feeling incredulous when offered feedback and therefore commonly reject other people’s interpretations. To someone living with lack of insight, it feels as though everyone is making assumptions, and that they are always jumping to the wrong conclusions.

One of the main reasons for this is that the core intentions stay the same. Underneath the layer of cognitive disabilities, there remains the real person still automatically firing from the same place they always have. The thing is that the higher levels of conscious interruption and control have been altered or taken away, so, there is no conscious awareness that anything observed on the outside, is any different from what people have always been able to see.

The deeper parts of the brain are the best protected. Generally known as the ‘reptilian brain,’ it is this area of the brain that subconsciously outputs behaviour in predictable ways that we see as the personality. Once an impulse is set off in an uninjured brain, it is then filtered through a mass of learned data that that helps us be conscious of things like intention or motivation. This filtering system is one of the roles of the ‘executive system,’ which is often impaired by brain injury. The output is therefore raw because it isn’t being checked against personal beliefs, history and previous choices.

If we go back to the iceberg example in ‘increasing your awareness,‘ we can start to figure out how the disparities between ‘automatic behaviour’ and seen behaviour can occur. If you don’t know that you are different, and the brain isn’t feeling any of the changes other people see back to you – you remain oblivious. People are also often unaware that the dynamics of their relationships have changed.

It can take a long time for people to work this out on their own, and in the meantime, everyone gets stuck in an endless cycle of complete bewilderment, bemusement, and confusion.

Because many people don’t think they need help, they will often feel insulted when suggested to them. Some people will flat-out refuse even to consider speaking to a doctor about rehabilitation because they believe they are okay.

There is an accompanying blog called, ‘Why Don’t You Know Me Anymore?‘ that was written to help people understand the functionality they have lost, and hopefully encourages them to seek help. If can also help to understand more about the loss of self-identity that can also happen following a brain injury.

From the outside

For families and friends dealing with someone unable to receive feedback, life can be distressing and frustrating. It can be hard to be patient with someone who seems incapable of listening – especially when they ‘look fine’ on the outside.

In a marriage or partnership, it can feel as though all the responsibility for the health of the relationship now falls back on you. People describe feeling alone, abandoned and isolated. Extra practical obligations and stress from fear and worry can be draining, especially for people who were previously able to share everything with their loved one. A lot of people feel sadness and as though they have lost their closest friend and constant ally. Many people describe a complete change in the dynamics of intimate relationships and say that they feel more like a carer than a spouse. There can be a deep sense of loss or grief if romance or affection is ‘gone.’

One of the most challenging things to come to terms with is the loss of support and the suddenness of having to take on many more responsibilities alone. Every situation is unique, but these commonalities do crop up very often.

Lots of people turn to others who are going through similar experiences for help and support. Peer support can make a real difference in helping people feel they are not alone.

Loss of insight can look like selfishness, laziness, ignorance, rudeness, a bad attitude, all of the above, and more. It is essential to try and remember that if your loved one could be the same as they were previously – they would be. They will have an innate drive to get back to the authentic self that will continue unabated, even beneath any negative protestations or depressive symptoms to the contrary.

If your loved one was previously loving and self-responsible – they are still these things. If they were kind and thoughtful – they still are these things too. You may see some previously rarely seen traits intensified such as anger or irritability that make you think someone had changed.  These reactive changes can continue for variable periods, even years in some cases. The more somebody rehabilitates and heals and regains their insight, the more like their old selves they will become.

Any change can throw anyone off track – with or without loss of insight and other cognitive changes – but that ‘true’ self always keeps fighting to come back – because it is always still there…

Things that help

Some of the following generic suggestions may seem impractical or may not suit your circumstances or you personally. Every brain injury is different, and every person and journey is both individual and unique, so please pick and choose to find what works for you.

It can help to show the ‘Lack of insight – for people living with brain injury’ page to your loved one so that they can start to notice any aspects that they are struggling with.

Understanding that other impairments can exacerbate problems with loss of insight, such as:

  • Difficulty focusing – may mean it is even harder to listen to feedback
  • Slowed processing – may mean that someone can grasp some aspects of communication but not others
  • Memory problems – may mean that someone forgets the aspects they previously grasped
  • Memory problems – may mean someone has forgotten the incident that you want to address or talk about
  • Memory problems – may mean someone gets you right ‘now,’ but soon forgets because of problems with retaining information
  • Impaired reasoning – may mean that someone is easily overwhelmed by even a small amount of information
  • Impaired thinking – may mean that if someone has grasped a small amount of information, they may have no idea what to do with it
  • Unaddressed grief – may mean that someone is too emotionally drained to cope with anything else
  • Loss of sense of self – may mean that someone has lost their self-confidence and ability to bounce back impairing what else they can take on
  • Loss of self-monitoring skills – may mean that someone hasn’t even realised they did anything out of the ordinary or didn’t complete a task

Pause and breathe before responding:

  • Try to remember that you are the one who has the cognitive capacity to control your emotions and reactions
  • Try to remember that loss of insight may look like many things (above) – try to give the benefit of the doubt
  • If you become frustrated, this may lead to confusion, disagreements, anger, and conflict – all things that serve little purpose and serve no one’s interests
  • If your loved one insists nothing has changed about them let the conversation drop – trying to pursue an argument ‘to be right’ will only make things worse and may undermine trust
  • Try not to get frustrated if someone doesn’t do what they said they would – your loved one may be unaware of the things they can achieve or where to start or how to finish a task
  • Be wary of venting directly – you may cause temporary or even irreparable damage or may undermine self-esteem meaning your life will be even harder as trust may be impaired
Use strategies:

  • Consider using videos to provide feedback – recorded messages are less personal and allow someone to ‘hear’ you in their own time. They can pause and rewind
  • Use checklists – these can raise awareness of performance and also divide tasks up
  • People may not realise they have difficulty with decision making – set concrete goals that are written down and easy to see (whiteboard) and cross off but leave up, so those achievements act as reminders
  • Encourage people to get on-line and to join support groups – feedback from peers is often easier to accept and often the experiential language used is easier for people to understand
  • Try to relate tasks to the goals people have for themselves, for example, being able to focus and listen may help with the goal of being able to help the children with their homework
Communicating:

  • Ask people if they would like help before you give it and accept their answer
  • Make notes of the things you want to talk about in calm and quiet moments
  • Treat people with respect and avoid trying to ‘sneak something in.’ You don’t want anyone to feel undermined or patronised
  • Put time aside for your loved one to talk about their feelings, resist interrupting or adding your feelings – make this a time to listen and learn
  • Ask your loved one if they would like you to point out anything that you notice is different
  • Ask your loved one what things they have noticed are different and encourage them to write these down
  • Prioritise everything, for example resting before discussions so that neither of you is tired
  • Don’t sweat the small stuff – the bigger picture is the one that counts – getting through this and helping your loved one get better is more important than whether they remembered to put the laundry in the drier
Understanding you:

  • There will be a lot more demands on your time and attention
  • Be ready to go the extra mile consistently and get or ask for help when you are tired
  • Make a note of your own ‘end goal’ and keep focused on it
  • Use positive affirmations that empower you to stay on top of things
  • Use guided meditations or make time every day to keep this routine up
  • Take time out for you every day – even twenty minutes – and believe time is abundant, especially when organised
  • Give lots of thought to organising your day and consider long-term goals in your daily priorities
  • Ask for help and gracefully receive it
  • Join support groups so that you have somewhere to vent if you need to and have people to talk to who are, or have been, where you are
  • Make conscious efforts to note progress so that you can feedback to yourself what a great job you are doing
  • Forgive yourself rapidly and allow yourself to be human
  • Don’t chew things over – find a way of dealing with things positively – such as finding out more information
  • Know it is okay to have a bad day – resist being hard on yourself
Other useful tools:

  • Speak to other people – their experience may help you not to repeat their mistakes, saving you time and emotional energy
  • Guide your loved one towards information that is empathetic of their needs and changes, such as blogs or similar stories
  • Let your family and friends know what you are trying to achieve and ask them to support you and to use the same strategies to provide consistency
  • Read as much as you can anywhere you can but make sure you use trusted sources
  • Avoid confrontations as your loved one may feel unconsciously compelled to gap-fill or use justifications, and this will get you nowhere – it just creates yet another hurdle to cross
  • Share everything you learn with other people you may rely on – it helps when everyone is on the same wavelength and also helps you to feel that it is okay to invite a friend round to hang out while you go out with your friends
  • Make sure that anyone who visits understands that brain injury is a neurological condition and that it is not a mental disorder – if people can’t get their attitude straight keep them at a distance – don’t let them cause problems that you will be left to solve
  • Think forwards! People can and do recover, and relationships do flourish.
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