An acquired brain injury (ABI) can happen to anyone. It doesn't discriminate and can occur following a traumatic event such as a stroke, illness or accident.
When someone experiences an ABI it affects not only that person, but their friends and family around them too. The cognitive, behavioural and emotional impact will depend on the severity and location of injury on the brain - no two injuries are the same, and therefore everyone's treatment plan and need for support is unique.
Someone who has experienced a brain injury of any degree will go through a period of change and may feel loss for the person they were before their injury. They may also go through loss such as that of a career, relationships or ambitions for the future.
One of our personal injury experts, Louise Jenkins, caught up with treating occupational therapist, Suzanna Anthony, to find out how the pandemic has affected those with a brain injury, how she’s supporting people with memory issues through this worrying time and what methods and tools there are to assist with the change they’re going through.
Louise: Hi Suzanna, it’s great to get your insight and expertise on acquired brain injury. So how exactly can a brain injury affect memory?
Suzanna: In many cases, memory loss is first seen in the period of post traumatic amnesia (PTA) which occurs straight after the brain injury when the person starts to regain a level of consciousness. There's often a lot of disorientation during this period with the person being confused about where they are and who they are. Memory loss around the period leading up to accident can be a problem and it's widely understood that the longer the loss of memory around the time of the injury, the more severe the damage often is in the longer term.
Milder brain injuries can however be equally as devastating on memory, as these are often unseen and take longer to diagnose due to the changes being more subtle. These types of injuries are also often not visible on scans.
Memory problems more often than not come hand in hand with other cognitive problems including difficulties with information processing, attention and concentration. This can sometimes mean that information is not registered in the first place, so then cannot be retrieved as a memory later on.
Louise: What can this mean for everyday life and how far reaching can the effects be – for example in changes to relationships and our ability to work after a brain injury?
Suzanna: I once had a client who summed up their memory loss in a very simple way by saying “my memory affects every verb.” In other words, every single action is affected by memory; it could be hobbies, work, relationships or just simple, everyday tasks such as remembering how to make a cup of tea.
Relationships with others can change due to a memory problem. It may be perceived that someone’s personality has changed when in fact it could be a memory difficulty that is causing them to be forgetful. For example, they may be seen as not as thoughtful as before if they had forgotten a close friend’s birthday or hadn't checked in with their partner if they knew they had something important going on. It may not be that their feelings had changed at all, but they may need help in remembering the simple actions they would have done automatically before their injury.
Difficulties around topographical orientation can also become a barrier to someone’s life after a brain injury. Whereas before they used to take the same daily route to work or the shops, they can no longer remember road layouts and landmarks which used to help them make that journey.
Ultimately, your memory is who you are and forms the basis of your sense of identity. To lose that can be terrifying and can result in a number of psychological difficulties such as depression and anxiety. These all impact on activity levels and often interfere with sleep, which in turn can cause excessive fatigue. Unfortunately it then becomes a vicious circle as severe fatigue impacts cognitive functioning, worsening the situation further.
There are many ways to help overcome a number of the difficulties memory impairments can bring. The key is to find out what is problematic for that particular individual and what their priorities are before you can help them overcome, or better manage, their memory issues.
Louise: So, could these problems get better over time?
Suzanna: There are a lot of factors to consider. It all depends on the severity of the injury, the part of the brain that was damaged, the person’s ability to engage in rehabilitation, previous lifestyle and the support systems they have access to.
The quality of the rehabilitation they receive is very important but sadly differs quite significantly across the country. One client might only get offered a few sessions of therapy whilst another might be given months of rehab and a tailored, ongoing support plan. In my experience, having a solicitor experienced in personal and brain injury in the early stages can really help the injured client in getting access to the best rehabilitation in their area.
Support systems can have a huge impact upon recovery. If the injured person lives with someone who understands their memory difficulties and will support the use of strategies, it's very helpful. Having a support worker in place to help with practical, day-to-day tasks can also help significantly, especially if they're skilled in using rehabilitation strategies so that they can help to promote independence instead of doing things for the injured person.
There are studies on neuroplasticity that indicate that improvements can be made for many months and even several years after brain injury. We are finding out more each year about how the brain can regenerate. The initial stages of recovery are paramount as this is where the biggest improvements are seen. It's essential that good strategies, structures and routines are in place that set out a good recovery plan, as soon as possible after injury.
Louise: In a complex world and with guidance and information around the current pandemic changing all the time, what challenges can this present for someone with memory loss?
Suzanna: The COVID-19 pandemic has had a devastating impact on many of my clients who have cognitive impairments, including memory loss. It can be challenging for the general public to keep up with the amount of information being given and the speed at which it is communicated, but this is far harder for anyone with cognitive problems.
COVID-19 restrictions have meant that the support structures and networks that people with memory loss rely on suddenly stopped, or had to take a back seat due to social distancing.
Understanding and following the rules have been a massive challenge and it has been important for people to develop strategies around this to aid remembering of the ever-changing guidelines. One client of mine has a good technique that they have used throughout lockdown: to write down the key points they needed to remember, such as wearing face masks to go into a shop, and they would stick it on their fridge and next to the front door, so they always knew the Government rules that protect us all.
Many people who experience memory problems after a brain injury can be anxious about getting back out into the community in normal circumstances but this has been further complicated by the current restrictions. For example the two metre and mask rules can be forgotten and subsequently bring about feelings of embarrassment. There is a danger that this can cause many to avoid leaving the safety of their familiar environments and ultimately delays their recovery.
It’s vital to speak to your support network if you’re struggling during this difficult time. There are lots of ways cognitive (including memory) problems can be addressed to help you get through this.
Louise: What advice would you give someone who is coping with the loss of the person they once were?
Suzanna: There is often a large amount of grief associated with the loss of how life once was. This can be change in the sense of self, altered relationships, roles such as work life or hobbies changing. The people I work with often tell me that this can feel completely overwhelming and it is hard to know where to start in thinking about the future, as it is so difficult to picture.
When it is difficult to imagine the future, it is sometimes helpful to concentrate more on the shorter term and to try to take things one day at a time. Setting small, achievable, positive goals for each day is a good starting point until the client reaches a place where they can think more about the longer term. Rethinking their priorities and planning the next step can be really difficult, but the rehabilitation team can help them to work out their plans when they feel ready.
The changes brought about by a brain injury can be far reaching and affect all areas of a person’s life; this can understandably be very frightening. It’s essential that people know there is help out there to help them deal with trying to face the new version of their life.
Louise: How do you help families adjust to the change they see in a person with a brain injury and how can they support them?
Suzanna: Communication is key in lots of different ways. Keeping the lines of communication open with everyone is really important but is not always easy amidst a spectrum of new emotions. Everybody involved will be facing their own personal struggles and it’s very easy to start to feel isolated, with relationships breaking down further as a result. Support through these times is really helpful and it is important that everyone feels they can ask for it.
As a professional working in the field of brain injury, I believe the provision of education about brain injury is really helpful for families as it gives them a better understanding of what has happened to their loved one. This can then help family members better understand the changes they are witnessing. It’s important to work with families as well as the individual themselves as they often play such a key part in supporting the rehabilitation process.
I try to stress to families, carers and loved ones that it’s important that they acknowledge and look after their own needs as well as those of the person who has been injured. Recovery is a long journey and they need to make sure they factor themselves into the equation too.
Louise: Where can anyone affected by the issues in this article go to find out more about the support available?
Suzanna: Headway ’s website is a brilliant resource to assist with all areas of cognitive function and understanding brain injury in general. They have reading material available that you can print out or share with friends and family so they can better support you on your journey. Take a look to see if there is a local support group in your area, as speaking to people who truly understand what you’re experiencing can be a big help.
On the The Royal College of Occupational Therapists website there is a directory of independent OTs that can support you further with your recovery.
And lastly, check what is in your local area and find local resources that can help. There may be outreach teams which can help you or a local support group.
About Suzanna
Suzanna Anthony is a treating specialist brain injury occupational therapist working with people who have experienced an acquired brain injury. She has over 20 years’ experience in neurology and works closely with her clients to overcome physical problems, as well as less obvious but equally debilitating cognitive, emotional and behavioural difficulties that a brain injury can bring.
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