In the UK there are an estimated 1.3 million individuals enduring the long-term effects of traumatic brain injury (TBI) living within the community. Often, symptoms of neurobehavioural disability, a legacy of TBI, can go undiagnosed and unsupported, inhibiting how successfully they can live within the community and putting a huge strain on their relationships and family life.
Professor Nick Alderman is clinical director, neurobehavioural rehabilitation services and head of psychology at Elysium Neurological Services. He is acknowledged internationally as one of the foremost experts in neurobehavioural rehabilitation, having more than three decades experience in this field. In June 2021, Professor Alderman, and his research colleagues at Swansea University, published a study which looked at the prevalence and predictors of neurobehavioural disability amongst survivors with TBI in the community.
In this EveryExpert article, we talk with Professor Alderman – also part of NR Times’ expert panel – about how the Swansea Neurobehavioural Outcome Scale (SASNOS) can be used in a community setting and the necessity to raise awareness about the silent epidemic of TBI survivors across the UK.
Hi Nick, thanks for talking with us today. Could you start by explaining more about how the lives of individuals, who are enduring the long-term effects of TBI, are impacted in a community setting?
Nick: “Neurobehavioural disabilities can be very complex. There is a large range of symptoms that are due to a variety of factors that people can inherit as a result of a traumatic brain injury. For example, there’s the organic damage to the brain itself. When the damage is to the frontal part of the brain this can have a significant impact on a person’s life within the community, because this is the part of the brain that’s responsible for controlling behaviour and picking up feedback. A function of the frontal lobe is also to enable us to adapt our behaviour to new and novel situations.
“So, when people have frontal lobe damage as a result of a TBI, not only are they more likely to have challenging behaviour, they can often have real difficulties in coping with novel situations. This produces a sort of dilemma as in situations, like a formal conversation or structured exchange, where people are well rehearsed in the behaviour, because before injury the behaviour was just habitual, there are no obvious problems. The person can seem to be functioning ok. This is why individuals can perform well in formal assessments but outside of the assessment they actually struggle in many aspects of life.
“As soon as you put someone into a new or novel situation where they’ve got to think on their feet, you see problems with planning and organisation. This can easily result in frustration, and because they may also have difficulties inhibiting behaviour as another legacy of TBI, they may express this by shouting or being aggressive, which can be frightening and intimidating to other people.
“So that’s the organic damage, but of course there’s damage to function as well, particularly to cognitive function, memory, attention and planning skills.”
So neurobehavioural disabilities is about a lot more than just challenging behaviour or aggression?
Nick: “Yes, exactly. It’s about all different sorts of impact on people that have a very subtle, but in many cases, a very catastrophic effect on their day-to-day lives. One common example is that individuals can often have difficulties with the ability to attend to multiple events. For instance, let’s take myself as I’m speaking here now. I’m having to think about what I’m saying, what I’m about to say, I’m looking at you to see if you’re paying attention to gather some feedback. So I’m having to process lots of things at the same time and that has an impact on my behaviour.
“For individuals with brain injury, often their ability to monitor, in that sense, is much more restricted. So in social situations where an individual with TBI is engaging in conversation with another person, and somebody else joins that conversation, perhaps the conversation changes direction, the individual with TBI can struggle to respond appropriately.
“Somebody with these sorts of difficulties can’t pick up on the fact that the conversation has changed, because they’re so intent on monitoring their own output in terms of their verbal behaviour. As a consequence, their behaviour therefore becomes socially inappropriate because they’re not adjusting it to the new set of circumstances. It can often be labelled as rude or ignorant, when they’re not deliberately being so. The behaviour is a product of the cognitive problems they have.”
And these are considered quite basic social interactions – conversations, exchanges etc. So if an individual can’t manage this it can be quite limiting on what they’re able to do in everyday life.
Nick: “Absolutely, and this issue is often missed in formal assessments – because of the reasons explained earlier. People will think of things like aggression because that’s easy to conceptualise and much easier to measure. But when it comes to the social niceties it’s much more difficult to establish their impact.
“For clinicians working face to face with individuals with brain injuries, we have long been cognisant of these issues but there weren’t really any good instruments out there to measure neurobehavioural disability in the round. That’s why we developed the SASNOS and why it’s important from a rehabilitation point of view. We need global measures to give us this all round assessment, otherwise they’re biased. If clinicians are only measuring aggression, for example, they’re not measuring these other very subtle symptoms that are often the bigger problem.
“The other thing is, which led to the development of the SASNOS, was the fact that nearly all of the measures that were being used had been modified from psychiatry so they hadn’t been specifically developed for brain injury. There’s obviously an assumption on the part of people who think that the psychiatry of aggression is going to be the same as the psychiatry of brain injury, and they’re not. The drivers are completely different.”
So let’s talk about your recent paper, looking at the use of the SASNOS in the community. What was the reasoning behind the study?
Nick: “The main motivation was to try and illustrate the prevalence of neurobehavioural disability holistically, not just with aggression, but with the whole range of symptoms that individuals experience. The SASNOS has been used extensively in patient settings. We’ve successfully been able to compare the prevalence and severity of neurobehavioural disability for people in specialist neurobehavioral units such as the Avalon Centre.
“But, we know from the research, that most people who have these sorts of difficulties are out in the community and they don’t get access to the appropriate support. There are 1.3 million people, it is estimated, that are living in the community with the long-term effects of an acquired brain injury, including traumatic brain injury. The research shows that these difficulties are chronic, they don’t go away and they don’t tend to get better. They are more disabling in terms of community reintegration than physical disabilities. They are the reasons why marriages and families break up, why people have hit out at home and ended up in prison or on the streets, or in long term psychiatric care.
“So the motivation to look at the community group is very much from that point of view. In the paper we show that the difficulties weren’t as severe as you would find in patients who’d been admitted to specialist neurobehavioural programmes, because they’re a particular sample. But the difficulties were still quite severe, even for violence and aggression. Particularly with interpersonal relationship problems and problems with cognitive function.”
Was there anything particular about the community sample in your study?
Nick: “Well the main point to stress here is that these individuals looked for all intents and purposes like they are fully recovered. However TBI is a silent epidemic, individuals seem to be functioning normally and, if you look at someone, there doesn’t seem to be anything wrong with them. But actually the reality is very different.
“It’s only when people are put in situations where their ability to direct frustration gets tested, or they are put into a very unique situation and they don’t have the capacity to cope. They’ve lost the ability to plan and change behaviours. If they’re in novel or new situations their difficulties really come to the fore.”
Could we talk a little more about contextualizing and self-awareness i.e. the individual has an awareness that they have this disability or that they’ve been impacted in this way. Does this self-awareness help them to manage behaviour and responses?
Nick: “You’d think it would, but it doesn’t always. Some people are very insightful about what has happened but this can lead to an increase in depression because they are very aware that their situation has changed. Others have less awareness and insight. For example, if you ask relatives or someone that knows the individual well, and talk to them about their difficulties, there’s often a disconnect.
“Relatives can describe numerous difficulties and then we talk to the person with TBI and they might say “I don’t have any problems and I don’t know why I’m here today”. It can be a barrier for rehab because if people don’t recognise that they are experiencing difficulties, they won’t necessarily want to seek out rehabilitation.
“An advantage of the SASNOS is that it has two versions. One version that people that know the person with TBI can complete, and another version that the person themselves can complete. So clinicians and researchers can look at that paradox.”
If the individual who has TBI doesn’t have that insight into their situation, they’re not going to come forward for help, so do you have to rely on the families to come forward?
Nick: “Yes often we do, the families are usually the torch bearers or flag bearers for trying to get their relatives into a rehabilitation programme. Or it’s because their behaviour is such that they’ve got into trouble with the law, and may need residential neurobehavioural support.
“An individual can suffer a TBI and make a good physical recovery whilst they are in hospital, because they’re in an environment that’s structured and supported. They get to know the environment and can make progress. However when they get discharged, often without a follow up, they’re just left to get on with it and that’s where the difficulties begin to show.
“That’s why it’s quite unusual for us to see patients within months of injury, it’s usually years before the full social impact of the injury is felt. So this is why the SASNOS is important, it makes these hidden disabilities, that have such a catastrophic impact on daily life, apparent and visible which gives them substance. And it can be done much more quickly, hopefully reducing the negative impact on the individual and their family.”
Thanks for your time today Nick, as we conclude our conversation is there anything else you’d like to add?
Nick: “Well I’d just like to reiterate the importance of continuing to try and educate people and raise awareness of the issues for individuals with TBI who are living within the community. I often refer to the startling statistic that there are 1.3 million people living with TBI in the UK, many of whom are living without adequate support. As a silent epidemic, they are hidden from sight, until their difficulties become so great they need help from residential services.
“The figure of 1.3 million people just refers to TBI but if you add to that the number of people with other forms of acquired brain injury, that’s a sizable portion of the population. And if this article can contribute to that growing movement of raising awareness and education, that would be a very positive contribution.”
- For more about Elysium Neurological Services, visit here
Dementia care – how to use storyboards
Dementia Carers Count look at how this valuable creative tool can be used at home
Do you know that people living with dementia often process visual stories and information better than verbal communication?
Misunderstandings, distress, fear and worry all impact heavily on us and can place strain on relationships. Visual aids such as storyboards can help maintain mental wellbeing for both the person with dementia and for the carer.
Sue Hinds, head of services at Dementia Carers Count, takes us through a range of techniques that carers can adopt (or adapt).
When and why visual support might be useful
There may be times when you need to support a person with dementia in attending events which are important to them. This might include appointments with the GP or other services, family events, shopping excursions, planning a trip and opportunities to engage in hobbies and pastimes.
We know that people with dementia often have challenges in both understanding information provided to them and/or retaining the information for long enough for it to be meaningful.
Carers tell us that a range of situations and emotions can arise. This could include the person with dementia refusing to go because they genuinely believe they were never told about it. Anxiety about where they are going, confusion, disorientation, agitation, distress, tearfulness, a sense of unease, and many more emotions can all emerge.
These situations can also provoke a range of emotions for you as a carer including stress, worry, fear, frustration, and anger.
Things we know:
- Providing information in bitesize chunks can help a person with dementia.
- Providing visual reminders can help.
- Visual information is often better understood than verbal information.
- Visual information can be referred back too, spoken descriptions (unless recorded are fleeting).
- Step-by-step instructions help.
- Visual formats can help a person express their concerns more clearly.
What are story boards?
Storyboards are one way to help support a person to understand, remember and engage fully with a meaningful visit, event or routine either inside or outside the home. They can capture key elements and stages of an event with images which can help the person to understand the event and will help to describe the actions at each stage.
By creating a storyboard, it can help you to identify all the stages and can help you think about what situations might arise, and can support a person with dementia to express areas which give them concerns.
Often storyboards can then be adapted or used again for other events.
Misunderstandings, distress, fear and worry all impact heavily on us and can place strain on relationships, and a storyboard can help maintain mental well being for both the person with dementia and the carer.
They provide a way to cope, help to maintain relationships and provide a new way of coping with challenges – providing a new way of thinking, behaving and interacting together even when things are tough.
How to create a storyboard
Generally, a story board can look how you want it to look, but they should not have too much information on a page as this can be overwhelming.
You may wish to create a storyboard on one page, or a storybook where you flick from one page to the next, or even a storymat where you can add, remove drop things down into a ‘we are here now’ section.
Follow the steps:
Think about the task e.g. Going to the doctors, and then think of all the steps which will happen (this is unique to your own routine):
- We need to get up and out of bed at 8am
- We will go downstairs
- We will have breakfast
- We will go to the bathroom and have a wash
- Clean teeth
- Get dressed
- Go to the car
- Travel to the surgery
- Wait in the waiting room
- Go in to see the doctor and talk to the doctor
- Say goodbye and leave the surgery
- Get back in the car and drive home
- Arrive home
- Sit down in the kitchen for a cup of tea and a cake
Ideas of things you can use to help you
There are lots of symbols and resources which you can purchase to help with this, but a good tip is to also take photos within your own home and when you are out and about with the people and places you visit. This will help you to tell the story with as many familiar pictures as possible.
It’s also often worth taking photos during a familiar event so these can be used in the future. However, if you need some symbols there are various sites you can purchase them from and I have listed a couple below.
The creative visual aids website also gives a wonderful explanation of how visual aids can be used to support children, but the principles are exactly the same. The video below talks about the use of storyboards with children and I am currently in discussion with Gina regarding storyboards for people with dementia.
Talking Mats is another incredibly useful resource for supporting conversations, with videos and case studies of how visual aids can help a person with dementia in conversation and day to day life.
Good luck creating one, and have fun – we would love to hear from you with photos, descriptions and stories of how and when you use them. Perhaps you could also inform other carers through our forum: Virtual Carers Centre | Dementia Carers Count
Supporting mental and physical needs in complex dementia
St Andrew’s Healthcare look at the importance of meeting the needs of this client group
In supporting the mental and physical healthcare needs of people living with complex dementia, specialist expert support is vital to achieving the best possible quality of life.
St Andrew’s Healthcare is renowned for its work in this area and for its support of people and their families. Based within its Northampton site, the St Andrew’s neuropsychiatry service supports people with the most complex neuropsychiatric needs.
The service extends across Kemsley, the hospital’s brain injury unit, which has pioneered specialist neurobehavioural care since it opened over 40 years ago, and Lowther dementia hub, a bespoke environment opened in 2020 that is designed to meet the needs of people living with complex dementia and other progressive neurological conditions.
Working with older people within a neuropsychiatric service requires a range of specialisms. Here, we meet two of the multi-disciplinary team at St Andrew’s as they explain the importance of meeting the mental health, but also the physical health, needs of this particular patient cohort.
Muthusamy Natarajan, consultant forensic psychiatrist
My name is Muthusamy Natarajan, I’m a consultant forensic psychiatrist and also clinical director for the neuropsychiatry service at St Andrew’s Healthcare.
How do you approach the care and support of older people in a neuropsychiatric service?
It’s important when working with and supporting older adults with mental health problems to consider how their organic and functional illnesses intertwine and how we progress them in their pathway at St Andrew’s and onward into the community. Connections with the patient’s family are also key so we also need to make sure we work to maintain those links whilst offering support to family members too.
We have a lot of our patients who are living with dementia and obviously communication with those who are caring for them is a tricky challenge sometimes and making sure that their voices are heard. We have multiple methods do that including our advocacy services, but also our staff are really experienced and skilled in making sure that the patient’s voice is heard.
How do we support people living with dementia and complex needs?
In 2020, we opened the Lowther village. The Lowther village was very much a critical part of our ability to deliver the best care for patients who are living with dementia and other complex progressive neurological conditions such as Huntington’s disease.
The dementia village concept comes from the Netherlands, where the key area of focus is making sure that patients are able to experience familiar activities throughout their journey with dementia and that they are able to link with the community, and that’s what we try to do. Our aim is to make sure that patients have the least possibility of feeling like they are in an inpatient setting and that includes people who are on Mental Health Act sections and Deprivation of Liberty Safeguards (DoLS).
What key interventions do you use when working with people living with dementia?
When somebody comes to us, we carry out a comprehensive multidisciplinary assessment that is the basis of their care and treatment.
An individual might require specific psychological therapies and that may include things like reminiscence therapy, individual sessions to look at what their actual cognitive impairment is meaning for them on a day to day basis and we will use tools such as life story work.
One of the key things we will look at when an individual comes to us is what activities and supports are going to help them through their journey, and that will include activities within the unit, but it also may include activities within our grounds and also further afield in the community.
The third intervention is obviously in terms of our medical support, and we have a full complement of doctors, a responsible clinician, a geriatrician who works alongside us and also our specialty doctors and the medical team who look at the treatments we’re offering and make sure that is the most holistic approach to that individual’s care.
Having worked across a number of organisations what do you think makes St Andrew’s different?
What makes St Andrew’s different is that the culture and the organisation are geared to deliver care to very complex patients who come to us. The challenge to us is that we need to be able to demonstrate we can meet the complex care needs of our patients and ensure their journey is delivered in the best possible way and that we maintain our links with the carers and family for that patient. St Andrew’s does that incredibly well, and it does it holistically and in some ways, effortlessly. So building on that is a key area I think within the neuropsychiatry division and also within the charity as a whole.
Parul Shah, consultant geriatrician
My name is Parul Shah, I’m a consultant geriatrician, and I joined the St Andrew’s neuropsychiatry multi-disciplinary team in February 2021.
As a consultant geriatrician, what is your role within the neuropsychiatry team at St Andrew’s?
My role as a consultant geriatrician within the team is to pick up on the subtleties of medical issues amongst our older adult cohort of patients and implement proactive management of their conditions so that patients don’t deteriorate any further with their physical health, reducing visits to acute hospitals and improving their safety whilst they are in our care here.
What are some of the key areas of focus for you with St Andrew’s neuropsychiatric service?
One of my key areas of focus is to improve the overall strategy for older people’s health within the neuropsychiatry service with a particular emphasis on identifying frailty. Older people are often living with multiple conditions, and as they physically decline people become frailer, if we identify this and are aware of increasing frailty we can put approaches into practice such as exercise programmes and lifestyle changes that may prevent people’s physical health deteriorating.
Sometimes our patients exhibit very advanced stages of frailty, and then we need to recognise that they may be approaching end of life and that maintaining their quality of life is of prime importance, rather than necessarily focusing on physical health care interventions.
So I think that’s one of my main aims; to provide comprehensive assessments to older patients and identify why they’re getting frailer. If there are no reversible factors we then need to think about how to make them more comfortable and make the right decisions for them in their best interest by involving them.
To find out more about the St Andrew’s neuropsychiatry service visit: Neuropsychiatry services » St Andrew’s Healthcare (stah.org)
The impact of stress on sleep
Dr David Lee at Sleep Unlimited offers advice on how to reduce stress and improve sleep
In response to acute stress, our body produces adrenaline, to help us with the fight or flight response.
When our body perceives there is an immediate threat to our lives, this activates our Sympathetic Nervous System (SNS) to increase our heart rate, respiratory rate, stop non-essential functions such as digestion and produce stress hormones.
During acute stress you may experience issues falling asleep and entering the restorative sleep stage as your body believes your life is in danger and so prevents you from entering a deep sleep in case you need to fight or flee during the night.
Once the threat has diminished the Parasympathetic Nervous System (PNS) is activated to lower our heart rate, respiratory rate and stop the production of stress hormones.
Evolutionarily this response was useful as we had to fight for survival if, for example, a bear was going to attack us. However, now our stressors tend to be due to relationships, financial stresses, or work-related stress. Things we are unable to run from, which can cause long term stress and SNS dominance.
Long term stress increases our cortisol production. Cortisol is normally at its highest peak in the morning to help us wake up, get out of bed, and have enough energy for the day. Levels of cortisol steadily decrease during the day, reaching its lowest point at around 10pm. This is so we are relaxed and able to fall asleep.
When cortisol levels are low, the PNS is activated during sleep, and we enter the restorative period of sleep. Cortisol levels start to slowly rise again at around 2am. If you are experiencing long-term stress, you may wake up at around 2am/3am as cortisol levels are already high.
To help reduce stress, you need to allow your body to feel safe. Here are some tips to help reduce stress and improve sleep:
- Stick to a good sleep routine but try to go to bed earlier rather than later. If we are constantly stressed the PNS system may only be dominant during times we are asleep. As PNS is only dominant until around 2am, going to bed around 10pm will provide you enough time to rest and restore.
- In times of acute stress, exercise is important, so we move our bodies as if we are acting upon the fight or flight response. However, in terms of long-term stress more restorative exercise, such as yoga, may be helpful as this activates our PNS. High-intensity exercise activates our SNS as it increases our heart rate and respiratory rate, so try to incorporate restorative exercises into your routine as well. Remember exercise outside in the morning is better as it increases melatonin production for release later in the day to help you fall asleep.
- Try deep belly breathing when you are feeling stressed to helps you to feel relaxed. When we are stressed, we tend to breathe short quick breaths from our chest instead of long deep breaths from our stomach.
- Allocate time during the day to write down your worries and your to-do list as this will prevent you from worrying about them as you try to fall asleep.
- Try to reduce caffeine intake. When we do not enter the restorative stage of sleep, we can wake up feeling unrefreshed and groggy, this can cause us to make a cup of coffee to increase our energy. However, caffeine also increases cortisol so try to reduce the amount of caffeine you consume, at least try to stop caffeine intake after lunchtime as this can increase difficulty in falling asleep. If you improve your sleep practices you are likely to feel refreshed in the morning, making it easier to reduce your caffeine intake.
- Avoiding screens and working in the 2 hours before bed allows us to wind down and help us to switch from SNS to PNS. If we engage in work or see something on social media that causes our stress levels to rise, then this may cause us difficulty falling asleep.
* Dr David Lee BSc PhD CertEd CPsychol AFBPsS CSci is clinical director at Sleep Unlimited
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