Due to the nature of hidden impairments in brain injured individuals, they may be assessed as having capacity to make their own decisions when they cannot. As a result, they can be vulnerable and find themselves in dangerous situations.
People working with brain injured service users must be aware of how this injury impacts decision making and be prepared to share and explain this to other professionals.
The Mental Capacity Act (2005) is presumably familiar to most people working with individuals with a brain injury or mental impairment.
It refers to how we should assess the ability of people with mental impairment to make a specific decision, based on whether they can understand the information, retain it (for long enough to decide), use and weigh that information when deciding, and communicate their choice.
The quality of said decision is not a criteria – someone with capacity has the same rights as everyone else to make unwise decisions (and suffer the consequences).
The implications of these decisions can be significant. Some examples of capacity assessments faced by our service userscan include their capacity to manage their own money, decide where to live, to decide whether they will access intervention or support, either formally or in their day-to-day life.
Other decisions may cover lifestyle choices, such as whether to eat junk food, smoke or drink.
The person making the decision about capacity should be the professional who is responsible for the final decision or action.
This can be a diverse range of professionals including social workers or care coordinators, care managers, GPs, surgeons, dentists, support workers, clinicians and nurses, to name a few.
Although the assessor is likely to have expertise in their own particular area, and therefore understand the decision best, they may not always be the person best placed to understand the client.
Gilbert and George (2018) point out that for people with brain injury, assessment of their ability to make decisions often requires both expertise and experience in brain injury and how it can present.
They refer to the “frontal lobe paradox”, which is the ability of individuals with damage to executive functions but often intact speech and social skills to do very well in formal office-based assessment tasks, and yet struggle significantly in their day-to-day life.
Someone unaware of this possibility may unwittingly take a service user at face value.
They may not realise the information they are missing, or may find it hard to understand how someone self-evidently capable of talking and reasoning can at the same time be oblivious to their own difficulties or incapable of putting their plans into action.
One difficulty is that at the surface level, these difficulties may not appear to be related to cognitive impairments.
Just as difficulties with motivation and planning can be misinterpreted as laziness or depression, and impulsivity may be seen as being rude or “not listening”, service users with executive functioning problems can be mislabelled as an individual with capacity who happens to make unwise decisions – often repeatedly.
Just as with the earlier examples, this mislabelling can mean they are unable to receive the support, treatment and assistance that they need. In worst case scenarios, this can lead to being put in vulnerable situations, to increasingly risky and criminal behaviour, to failed discharges.
So what are the issues that may come under the “frontal lobe paradox”?
The paradoxical ability of the individual to perform very well in a one-to-one setting, but to struggle in the “real world”, makes more sense when we remember that assessments are not really very similar to the real world.
In most assessments, we make the effort to control the environment and the situation as much as possible. We reduce distractions, and clearly describe the task, and make sure all the information they need is clearly laid out. The task – almost always just one single task – is clearly explained.
Compare this to the real world. In most everyday situations there are distractions and competing pieces of information we need to pay attention to.
We’re frequently performing more than one executive functioning task at a time – someone shopping is both using working memory and planning skills to think about their meal and what is required, and also using visual scanning and attentional skills to find the items they need, whilst also paying attention to their surroundings, trying not to walk into people, coping with stimulating environments and possibly keeping one eye on the time.
Performance in the former situation is not likely to be an accurate reflection of performance in the latter.
Consider also the role of impulsivity, which may not be apparent in an office setting where someone is focused on how they are performing in an assessment, but is likely to be a difficulty in an environment where there are many distractions and the person is potentially paying less attention to their own behaviour.
Many of the problems described above could be overcome or compensated for, were it not for the role of insight. Insight in this context is associated with the ability of an individual to self-monitor and evaluate their actions and connect these to the consequences or outcomes.
Someone with a lack of insight will be genuinely unaware of their own difficulties or limitations, no matter how obvious they may seem to other people.
These service users may tell you that their memory is fine, even though they don’t remember having this conversation with you many times before. They may see no problem with staying within a budget, even though they have failed in every previous attempt.
Sometimes it may be that they do not recall their previous difficulties and cannot learn from the experience, but often when reminded of their previous attempt they still cannot accept their difficulties.
A service user with insight difficulties is unlikely to be able to use and weigh information about how their impairments impact on the decision to be made, or make accurate predictions of the outcome of any choice.
They’re also unlikely to be able to identify what kind of support they need. They’re extremely unlikely to be able to bring their difficulties to their examiner’s attention.
Additionally, as service users without insight may not see the need for support or the consequences of actions, even if they have access to support or strategies, they may not realise when they need to use them.
Overall, these difficulties are unlikely to be immediately apparent to an external professional. To someone who works closely with the service user, who has seen them in a variety of settings and knows their pattern of behaviours, they may be hard to miss.
The 2018 National Institute of Clinical Excellence (NICE) guidelines on assessing capacity make specific reference to executive difficulties, and recommend both real life observations and consulting other professionals involved in the individual’s care.
Caution should be taken about the information requested from professionals – for example, some professionals may only see service users in controlled, individual sessions and be equally vulnerable to these errors.
Even cognitive assessments attempting to measure executive functioning are affected by the frontal lobe paradox, although some cognitive assessments have deliberately attempted to overcome this difficulty by mimicking a real-world situation.
For example, the Multiple Errands Test, which is performed in a shopping centre, is known to identify difficulties in clients who have otherwise performed well in more controlled assessments.
It may be essential to seek information from people who see the service user regularly, day-to-day, in a variety of situations – including nurses, therapy or activity coordinators, support workers or family members.
These people may be uncertain about questioning a perceived expert opinion, but can report feeling surprised by the outcome of professional assessments, given their own observations.
This may include observations of an individual who can sit down and add up the cost of items in a session and recall their budget, but in each shopping trip they regularly bring more items to the tills than they can afford, or a person who uses strategies such as Google Maps to plan their route, and is in constant imminent danger of walking into traffic because they are looking at their phone rather than the road.
This would be best practice; however it competes with pressures on time and resources in many services. Also, most services are dedicated to empowering service users, and are all too familiar with the need to advocate on their behalf against risk adverse professionals.
In these circumstances, faced with an individual who is articulate and knowledgeable and by every usual standard performs well, it is easy to see how the assessor may want to believe they are capable and autonomous.
It is our role to do our own advocating for our clients, and not only explain what difficulties we see, but the subtle underlying impairments that they represent, so that the assessor has all the information they need to make a good quality capacity decision.
Dr Jennifer Tibbles is a clinical psychologist and Warren Bridges is a nurse associate at Cygnet Heathers, a neuropsychiatric rehabilitation facility in West Bromwich. For more information please call 0121 796 2731 or visit www.cygnethealth.co.uk
George, M. S., & Gilbert, S. (2018). Mental Capacity Act (2005) assessments: why everyone needs to know about the frontal lobe paradox. The Neuropsychologist, 5(1), 59-66.
Brain injury case study: Simon’s story
Simon’s story demonstrates that consistent support from a small, specialist team can maximize quality of life and reduce barriers to discharge home.
In August 2019, Simon was admitted to the Coach House in Northampton, a specialist residential care home for adults with acquired brain injury. He was the first service user in a brand new service from experienced care provider, Richardson Care.
He had sustained a hypoxic brain injury in 2015 following cardiac arrest, and had resided in a number of care environments following his discharge from acute rehabilitation.
He was referred to Richardson Care due to an increase in unsettled and challenging behaviours and as his current placement was no longer best-placed to meet his needs.
Simon had been increasingly isolating himself from the rest of the care home and would only engage in very limited activity with 1:1 support. He would frequently make complaints about his placement.
Goal for Placement
On admission to the Coach House, the overarching goal was to enable a safe discharge home for Simon. To enable this, further exposure to more independence would be required to appropriately risk assess and inform future care provision once at home.
This would provide information as to whether his previous environmental restrictions within care homes were preventing his progression or whether his needs were more enduring.
Intervention and Support
Following an initial assessment of his needs it was evident that Simon struggled with flexibility of thinking and that unsettled behaviours would present when his expectations were not met. This could then manifest itself in paranoid behaviours, which he would then perseverate and allow to dictate his day.
Simon was provided with a structured programme to assist him in managing his expectations: a programme which he devised with the support of his Keyworker, Gareth.
By adopting a person-centred approach to the formulation of his programme, Simon felt in control of his day and less reliant on others to initiate activity for him. Simon was able to manage his own expectations of how his day would look.
He became increasingly able to manage deviations from this if he was informed of the purpose of these changes. Whilst Simon still presented with some agitation on such occasions, the structure and the relationship he had built with his key staff enabled him to become more receptive to feedback.
Simon became more flexible in other ways and was more willing to take on new challenges. His initial engagement in food preparation was short lived, but his willingness to at least ‘have a go’ was a marked difference from his previous compliance. He started to eat different meals at lunch time and take interest in his nutritional intake.
He joined the gym and set goals around his personal fitness. Whilst Simon was still largely dependent on others for some activities of daily living, he had developed new interests which significantly and positively impacted on his quality of life and mood.
Whilst Simon remained resistive to face-to-face therapy, he benefitted from oversight from the clinical team who would assess and inform future interventions and support. Simon gained some insight into the limitations imposed on him by his brain injury and focused on realistic goals, rather than shutting down at the suggestion of anything new. In brief, Simon started to enjoy his life.
Simon’s placement, in part, was to assess whether plans for future independent living were a viable option. During the year of his placement, on-going risk assessments were completed and observations made to inform future care needs on discharge home.
Close liaison with his case manager enabled remote planning during the Covid-19 pandemic, using technology to ensure that Simon could make decisions and choices regarding his future adaptations and environment. An occupational therapist from the team assessed Simon’s future home and made recommendations.
The team at Richardson Care also made recommendations on how a care package should look and Simon was involved in drawing up a person specification for the role of his personal assistant. In August 2020, almost a year since his admission, Simon discharged to his own home.
What did Simon say about the Coach House?
He felt that the staff treated him with dignity and respect and listened to him.
Simon said: “I like the room at the Coach House, I can’t complain.”
“I was only disappointed once during my stay.”
What did his case manager say about the Coach House?
Five weeks after admission:
“It was really lovely to visit yesterday and to see how well Simon is doing at the Coach House. It was particularly encouraging to hear that he is engaging with eating at the Coach House and not spending fortunes on going to a restaurant every day anymore! It was genuinely heart-warming to see the enthusiasm and satisfaction on his face, describing the steak lunch he had just bought, helped prepare and eaten.
Simon seems a great deal more relaxed in his new surroundings and it is abundantly clear that he has a great team around him, who understand his needs and are pro-active with him. He has not experienced that before, so it is all very pleasing! Many thanks.
After Simon’s discharge
“Could not have managed yesterday (or the past year!) without yours and especially Gareth’s support. He was an absolute legend yesterday – he really is a credit to himself and the Coach House. He did not relent in his efforts to help Simon settle in. He even put a ton of DVDs away on shelves after driving down and unloading the van in that heat. The man is a tank!
“I will make sure our paths cross again the next time I have a suitable candidate – I’ve really enjoyed working with you and your team too. You helped transform Simon’s life!
Chris Dindar RGN, Associate Case Manager at Brain Injury Services Ltd
Richardson Care is an independent family business and has a proven track record over more than 30 years. It has six specialist residential care homes in Northampton, three of which provide care for adults with acquired brain injury. The remaining specialise in supporting adults with learning disabilities. Its focus is on providing an inclusive family environment in which service users develop daily living skills, increasing their independence and well-being.
Expanding the horizon of neuro patients
With AlterG Anti-Gravity Treadmills.
A wide range of patients are now benefiting from the use of AlterG Anti-Gravity Treadmills throughout clinics across the UK.
Patients with a wide range of neurological conditions are gaining confidence within a fall-safe environment which allows for high intensity repetitions along with increasing motor learning early on in the rehabilitation stage.
Originally designed for NASA, the AlterG uses patented Differential Air Pressure Technology to unweight patients from 100% down to 20% of their bodyweight in precise 1% increments.
AlterG started in Professional Sport assisting with rehabilitation from ACL and Ankle injuries, moving onto MSK Physiotherapy Clinics. However multiple research papers and case studies have now been carried out to show the benefits of use with multiple neurological conditions including Stroke, Multiple Sclerosis, Parkinson’s, Functional neurological disorder, Brain Injuries & Incomplete Spinal Cord Injuries.
Developing the technology further, along with a precise partial weight bearing environment, AlterG has liaised with multiple Neurological Physiotherapists and Surgeons and added new features to enhance the experience on the machine and enable patients to gain as much as possible from each session.
The machines are now available with basic Gait Analytics (Stance Time, Step Length and Weight Bearing Symmetries and Cadence), Pain scales, pre- programmed exercises and camera for live video monitoring allowing patients to see their feet whilst walking.
Multiple case studies have been carried out, one of which is Brainstem Cerebrovascular Accidents (CVA) or Strokes. In conjunction with AlterG, Kate Haugen from Great Moves Physical Therapy (Colorado, USA) wrote a great case study with regards to a 42-year-old runner and university tennis coach. The individual presented two strokes resulting in right sided weakness and significant balance deficits from the first stroke and almost complete paralysis on his left side for 8 days following a second CVA.
“Weightbearing exercises caused medial tibiofemoral joint line pain and swelling. The patient was unsuccessful with a stationary bike and elliptical trainer. AlterG allowed for more controlled loading progression for returning to Full Weight Bearing.”
After multiple weeks of rehabilitation, the patient can now step over objects and change direction quickly. In addition, there are no limitations with the distance the patient is able to walk, and they are not limited by fatigue.
Along with a range of case studies, various research papers are available online showing how the treadmill can be an effective intervention for those who have experienced a stroke or other neurological conditions.
“The AlterG enables Neuro patients to experience what they thought they could never do again – be it walking, jogging or running. We have had some very encouraging results – even with clients who had trialled some of others rehabilitation technologies, including a conventional partial-weightbearing treadmill. Any neuro patient who can achieve an assisted step to transfer into the AlterG can benefit.
The AlterG allows a physio to challenge neurological patients in a safe manner and in a cost-efficient manner without the need for an additional therapist or assistant”.
– Jon Graham, Physiofunction.
Trevor Donald, Managing Director of SportsMed Products Ltd (the UK distributor) stated “it is great to see research coming through about the huge benefits the AlterG can have for individuals suffering with neurological conditions. The patient stories emerging from our customers at neurological physiotherapy clinics has been incredible”
Not only does the AlterG aid walking but it can be used simply in a partial weight bearing environment to carry out exercises such as single hand throwing and catching, squats and hopping.
If you would like further information on the papers and case studies carried out along with clinical protocols please feel free to contact AlterG’s UK distributor, SportsMed Products Ltd.
The family experience of brain injury
After a person acquires a brain injury, the impact on the whole family can often be life changing as they adjust to a new reality and relationships come under intense pressure…
Karen Ledger (KL): When brain injury occurs, it’s like a bomb going off in the family. Life will never be the same again for any of the members of that family.
People will be shocked, bewildered and overwhelmed, and they then have to go through a complicated process of adjustment, and people reach that adjustment at different stages.
The person with the brain injury will generally have a neuropsychologist assigned to support them. Most will pay attention to people’s feelings and emotions, but the rest of the family may not have any psychological support.
This situation doesn’t get better of itself without professional input, it can get worse and people’s mental health can and often does spiral down.
Louise Jenkins (LJ): It’s a particular challenge if you’ve got someone with little or no insight. They often won’t recognise the need for or be willing to engage with neuropsychological treatment until much further down the line, by which stage, the family may have entered a more advanced stage of crisis and their whole family unit may be at risk of breakdown. There are complex emotions involved in the adjustment process following trauma which include shock, guilt and loss.
KL: That’s a scenario we see a lot. The client’s relationships may get to an advanced stage of deterioration and as Louise says, crisis, before they’re able to accept help. This is often because there is an immense amount to absorb from their new world of injury, rehabilitation and the medico-legal process and clients do not have the psychological space to consider how they are, never mind undertake the rehabilitation.
LJ: That’s where some of the challenges come in from the legal perspective. The compensation claim process is quite rigid in that generally speaking, only the injured person can claim for financial losses and for professional support, but we maintain that as the underpinning principle for compensation claims is to restore someone to their former lifestyle, you have to consider them both as an individual and as part of the family unit. We try to build into the claim some therapy sessions not only for the injured person but also for their spouse and their children.
Some defendants (compensators) say they’re happy to support that because, if the family unit breaks down and the uninjured spouse has been providing a lot of the day-to-day support, prompting and encouragement that the injured person needs, the cost of commercial care to replace that support is significantly more expensive than the amounts you can recover in a claim for support provided by a family member. It is also about embracing the spirit of the Rehabilitation Code and Serious Injury Guide in looking at the wider family need.
KL: Often, people can’t work anymore; they feel their work is taken away from them. People get their sense of identity out of work, as well as from being a spouse or a partner, a father or a mother. And if they lose their ability to earn and their relationships start to deteriorate these are often perceived as more failure and thereby serve to reduce a client’s confidence and self-worth.
LJ: It is akin to a bereavement process for the uninjured partner, yet the person is still there with you.
KL: People don’t have to have a death to experience loss, and loss can activate a bereavement process. So they’re grieving for the person they once knew, and now they’ve got this new person which makes adjustment to the injury complicated. And the thing about brain injuries is they’re hidden. The person looks the same but behaves differently to how they did before. It understandably takes a long time for clients and family members to really grasp the effects of brain injury, because they’re often traumatised, angry, discombobulated and distressed.
The family that includes somebody with a brain injury goes through a process of understanding, just as the client hopefully does. It’s a complex situation trying to comprehend what a brain injury means whilst feeling bereaved.
Family and children’s therapy is relevant too. Children often get missed because they deal with loss and trauma in different ways to adults. Children tend to get on with their lives, as if it’s not happening, so they need particular attention. They won’t be talking about it so much, but they’ll be experiencing it. The sooner that’s managed by specialists, the better it will be for children in the longer term, giving children the best chance of allowing normal development to take place.
LJ: It’s difficult because there’s a significant investment of time and energy put into implementing a rehabilitation programme and support around the injured person. This is integral to the claims process. The spouse can feel as if all the focus is on the injured person and they’ve been left out.
From a legal perspective, we try to involve the uninjured spouse as much as possible in discussing what we’re doing and why we’re doing it. We try to weave in that therapy support for the uninjured spouse so they come along the journey with us rather than becoming a disrupter to the rehabilitation programme because they feel excluded and unsupported. If securing interim payments through the claim to fund support is challenging at an early stage, our in-house team of client liaison managers, all of whom have a healthcare background, can provide time and input in discussing the challenges and in signposting for support both for the uninjured spouse and children as well as for the injured client. There are some really valuable resources for children, for example, which explain some of the problems that can arise in a parent who has sustained a brain injury to help them to understand and come to terms with changes in the family dynamics.
KL: People affected by brain injury can feel deserted by their partner and like a single parent. This is because they’ve lost their partner’s contribution to childcare and work in the home. The complexity and challenges of living in these circumstances should never be underestimated.
LJ: At the point of injury, they are in shock and just want to be there for the person who’s injured. I’ve worked with a number of people where the grief and adjustment process is very substantially delayed. These delays extend to weeks, months or even years.
They’re in a fight/flight/freeze situation. They’re managing a situation that’s about life and death initially in the most serious cases. When the acute stage is over and they have some space to start thinking about themselves, rather than the person who’s injured, they can start reflecting. It’s an emerging awareness that it’s never going to be the same again, that some degree of permanence will remain with the injuries, that this is how it will be in the longer term and a realisation that you need support to adjust to the new normal.
KL: It takes a while for that realisation to come in. I am often working with partners who are in that process of adjustment and what initially attracted them to the person pre-injury has been lost post injury, for example agile thinking and intelligence. Moreover they now find themselves in a caring role and one where many strangers are entering their home and talking to them in alien language! It’s not surprising that for many people this is often too challenging for them to manage and why therapy is needed as soon as possible for clients to regain their own personal power as soon as possible. They will have a private listening, respectful and tender place for them when the rest of their lives are so exposed.
LJ: They don’t know where that injured person is going to land with their recovery in the longer term. There’s a natural recovery process of a minimum of two years following brain injury, often longer, and they don’t know how much recovery the person’s going to make. They’re living with that uncertainty for a long time before being able to understand and adjust to what the long term will look like, often with significant physical, cognitive and behavioural changes which place great strain on sustaining relationships. Independent family law and financial advice is often essential to protect both parties in the event that the relationship does break down.
KL: I believe that acquired head injury is usually devastating to the person and those around them. However, in my experience, people are often amazing in how they find the strength to establish new ways of being and making their life work for them. Therapy can often speed up that process because clients feel heard, respected and understood, a powerful combination for a restorative process particularly when they are so often feeling powerless. This process can help families stay together or decide to go their separate ways and with support they are more likely to do this without acrimony and additional trauma. Observing and supporting clients and their loved ones to dig deep to find the strength and commitment to establish a new life is such an amazing privilege and honour for me.
LJ : When the claims process is managed by expert serious injury lawyers, early access to specialist rehabilitation and support will enable an injured claimant to restore their life to the best possible position and allow them to maximise their potential for the long term, restoring a sense of control and positivity for the future. Working together with therapists like Karen is essential to ensure that a multi-disciplinary network of support can be put in place in order to support an injured person to achieve their goals and rebuild their life as an individual and as part of a family unit after a life changing injury.
Louise Jenkins is a partner at Irwin Mitchell and leads the serious injury team at the firm’s Sheffield office. Karen Ledger is managing director of KSL Consulting and a therapist, counsellor and supervisor with over 30 years of experience.
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