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.
We're supporting Headway by raising awareness of the impact of memory loss on the back of Action for Brain Injury Week, which took place in early October.
Our personal injury expert, 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 memory problems that affect daily life.
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 and 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 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.
Topographical orientation can also become a barrier to someone’s life, so 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.
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 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.
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 therefore 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.
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, which 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 are the key tools, resources and strategies that are likely to be most effective in supporting someone to be as independent as possible when living with memory loss?
Suzanna: There are all sorts of tools and resources out there these days to support someone who's experiencing memory difficulties after a brain injury and some that have been particularly useful during lockdown.
Video calling has been a lifeline for many people during COVID-19 to keep people connected and keep some sort of routine in place, whether that's working from home, weekly quizzes with friends or receiving therapy virtually.
Routine, structure and setting up the environment well is key to making sure you can function as independently as possible within your home and your everyday activities. Put items in obvious places, use checklists and reminder systems, get into routines that help you stay on track with the things you need, and want, to do.
Making your own wellbeing a priority is extremely important. This might sound obvious but stress and fatigue affect everything. Try to plan out your time so that it incorporates rest periods if you need them, mix up ‘thinking’ and ‘doing’ tasks and take time to try and recognise how you are feeling.
There are some great apps and technology that can assist with memory problems. Consider what is out there and think about using devices that will provide reminders, store information and help you to plan. If you rely heavily on technology to compensate for your memory problems, be careful to always have a backup plan. Consider what you might do if your system failed, for example you lost your phone or had a power cut. Sometimes a back up to a cloud based system or a mixture of paper based and tech solutions can be a good thing.
Ask those around you to help support your memory problems and ensure they have a good understanding of what is helpful or unhelpful for you. Ask them not to do things ‘for’ you, but to help you get there yourself. Simple techniques can help, for example by giving you a clue if you forget rather than giving you the full answer. Ask them to help you work on finding solutions to the things you notice you are finding difficult.
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. 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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