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NeuroRehabilitation 34 (2014) 3–13 DOI:10.3233/NRE-131018 IOS Press
What ‘works’ in cognitive rehabilitation: Opinion paper Kit Malia∗ The Society for Cognitive Rehabilitation (SCR), Surrey, UK
Abstract. This opinion paper provides a summary of some aspects of rehabilitation which seem to empower change and progress in people following brain injury according to the authors experience. It frames this within 3 factors: 1) What you do, 2) Who the brain injury survivor is, and 3) Who you are. Keywords: Cognitive rehabilition, brain injury, insight, self concept
My experience in the past 15 years of providing Cognitive Rehabilitation Therapy (CRT) for people with acquired brain injury (ABI) in schools, homes, inpatient rehabilitation centres, community settings, and support groups has resulted in the development of practical training courses in Cognitive Rehabilitation Therapy (CRT) for therapists, relatives, care workers and support groups, and the production of materials that can easily be used by these groups of people. This article is a summary of what I have found that works. Figure 1 is a schematic that represents the important factors. The centre of this schematic illustrates the interaction between the following 3 factors:
Who you are
Who the brain injury survivor is
Rehabilitation environment Social/Family environment
1. What you do 2. Who the brain injury survivor is 3. Who you are These 3 factors are embedded into the environment, culturally, socially and within the rehabilitation context. This article presents my views on the 3 factors that sit at the centre of this figure, and represent the essence of what ‘works’ in CRT.
What you do
Cultural environment
Fig. 1. Important factors in Cognitive Rehabilitation Therapy.
1. What you do 1.1. What is cognition?
∗ Address
for correspondence: Kit Malia, Brain Tree Training, PO Box 79, Leatherhead, Surrey KT23 4YT, UK. Tel.: +44 1276 472 369; E-mail: [email protected].
Cognition refers to our ability to make sense of our environment; it is easy to only think of this as the outside
1053-8135/14/$27.50 © 2014 – IOS Press and the authors. All rights reserved
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K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
world around us, but this also includes our inner environment – our thoughts and feelings and to a degree, even our impulses. Whenever we think and whenever we learn, we are using cognition (Parente & Hermann, 1996). 1.2. What is cognitive rehabilitation therapy (CRT)? CRT is the process of relearning cognitive skills that have been lost or altered as a result of damage to brain cells or altered brain chemistry. If skills cannot be relearned, then new ones have to be taught to enable the person to compensate for their lost cognitive functions (Bergquist & Malec, 1997; Schutz & Trainor, 2007). The aim of CRT is to improve the ability to carry out everyday tasks. This cannot be emphasised enough – there is no point in developing cognitive skills unless they have an impact upon real life functioning and thereby improve the quality of life for the individual (Wilson, 2002). 1.3. Approaches to CRT There are at least 2 general approaches to cognitive rehabilitation that are based on different assumptions about learning and the ability of the brain to compensate for damage (Bergquist & Malec, 1997; Gianutsos, 1980; Wilson, 2002; Robertson, 1999). The first is termed a cognitive-didactic approach. This approach assumes that treatment of specific neurological, communicative, cognitive and behavioural deficits is necessary for the individual to achieve maximum recovery – the ‘broken down’ approach. The second approach is functional and experiential; this approach assumes that by focusing on overall functional goals, any underlying relevant skills will improve or be compensated automatically. Most CRT programmes use a combination of these two approaches – this could be termed the “Integrated Holistic Approach” – training underlying skills in a hierarchical manner, whilst simultaneously ensuring that any learning is generalised into the persons’ everyday life. Bottom up impairment based work married with top down functional application. (Schutz & Trainor, 2007). Along with my colleague I have described four components to CRT (Malia & Brannagan, 2005): i. Education about cognitive weaknesses and strengths (aiming to improve awareness)
ii. The development of skills through direct retraining or practising the underlying cognitive skills often called process training (aiming to improve the neuronal and chemical pathways) iii. The use of external and internal compensatory strategies iv. Application of these in everyday life, and using functional tasks to improve cognitive skills functional activities training 1.3.1. Education This component provides information about how the brain works, how it gets injured and how it deals with recovery and repair. It should be provided to staff, relatives, and wherever possible, the people with brain injury. Education is an indispensable step in developing brain injury survivor insight – which remains the largest hindrance to successful rehabilitation (Cicerone & Tupper, 1991). Ideally, a person with TBI should become the world’s expert on his or her own particular brain injury. This does not mean that they are an expert on brain injury, but rather that they fully understand the nature and effects of their own particular injury. However, for the majority of people with brain injury and their relatives, this will be the first time they have come into contact with neurological injury. Up to this point they will not have spent much time, if any, thinking about how the brain works. Indeed, it is likely that this has always seemed a bit scientific or dry and academic. In addition, during our school years, most of us are not commonly taught about our own brain, and how we can maximise and enhance our cognitive skills. So, bearing this in mind, it is very important for the therapist to provide accurate information/education at an appropriate level for the person with brain injury and his/her relatives. The purpose of this is to enable the person to understand the terminology and to comprehend why they are experiencing the functional problems they have, and even more importantly what they can do to help optimise their recovery. To facilitate the education process, I suggest the following brief syllabus of topics (Table 1). The best way that I found to impart this information is through a structured educational group since the participants can learn from each other. A three-week group running for one hour a day with a minimum of four and a maximum of seven brain injury survivors, run by two staff, works well. Sometimes a more severely injured brain injury survivor will need to sit through two or three cycles of this course. Written materials to reinforce the information should also be given. The informa-
K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
Fig. 2. The Process Training Cycle. The theory of process training can be summarised as follows.
Table 1 A brief syllabus of brain injury topics • The areas of the brain • How the brain works and what it is designed to do (make sense of the world). Electricity and chemicals. Networks or pathways in the brain. The neurone, what damage can do to it and how this damage occurs • The mechanics of brain injury. How the brain can be damaged through impact injuries, strokes, tumours etc • The areas of the brain that are most likely to be injured as a result of different types of injury • The role of awareness (insight) into the problems and how insight is often affected after brain injury. The brain injury survivor needs to be encouraged to accept that this is an issue that needs to be improved, and, where possible, taught how he/she can develop this area of function • The normal pattern of recovery of problems • The four approaches to rehabilitation: Education, Process Training, Strategies and Functional Activities. How these all need to be done and how they are done in the rehabilitation programme. What the overall aim of the rehabilitation programme is i.e., to maximise recovery leading to best quality of life – as it is defined by the individual brain injury survivor • How specific cognitive problems impact upon all other areas of function and therefore how important they are • Models to understand the problems in each cognitive area • The Emotional consequences of having a brain injury • Coping Skills – the best way to cope with these changes in function
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tion should be reinforced through individual therapy sessions as needed. This form of ‘drip-feed’ system provides maximum rehearsal of the topics, i.e., telling the brain injury survivor the same information, using the same terminology time after time so that gradually over time they begin to remember it. 1.3.2. Process Training Repetition facilitates automaticity. Practising a skill is essential for moving a skill from conscious to automatic processing (Goldberg, 2001; Shiffrin & Schneider, 1977). Therefore a restorative approach to CRT, derives from the theory that repeatedly practising a skill will eventually help to re-route information around non-damaged pathways in the brain. In doing this it is important to use structured activities, which have been designed to improve cognitive skills, and to be consistent in their application. The therapy therefore provides ‘scaffolding’ for the damaged skills to be rebuilt. It is important to understand that process training is not simply a stimulation approach. The stimulation approach assumes that the mind is a muscle and that through exercising it will eventually improve cognition, which will in turn generalise to real life functions. This approach has some utility to it since the individual will usually improve on the tasks given, but there does not seem to be a corresponding improvement in everyday life skills (NIH, 1999; Cicerone et al., 2000; Cappa et al., 2003, 2009). Figure 2 below shows the process. This is therefore not simply a generalized stimulation approach, because it rests on assessment, analysis, goal setting, on going monitoring of progress, feedback and reassessment.
• 100% stated the modules increased their motivation • 100% stated the modules increased their confidence • 80% stated the structured nature of the tasks and homework gave them a sense of control over their treatment • 100% stated they found the consistent feedback useful • 80% stated they thought the work they did directly related to the brain injury Process training does not operate in isolation; the following processes and skills are inextricably linked with success in process training approaches (Malia & Brannagan, 2005): Measurable results Concrete feedback Executive Functions Feelings of success Self Responsibility Amount of practice Locus of control Discipline of routine
Seeing that strategies work Awareness Self Esteem Confidence Concrete goals Consistency Motivation Structure
This complex linking is problematic for research because it increases the number of ‘variables’ or possible contributing factors when searching for a cause-effect relationship i.e. ‘If we implement this particular exercise does it improve this particular function or skill?’
Does process training work? I conducted a survey with brain injury survivors who were treated within a multidisciplinary team setting (Malia et al., 2007). Part of their cognitive rehabilitation involved the use of Brainwave-R (Malia et al., 1997a). Upon completion of the CRT programme the 56 brain injury survivors were asked for their comments on the Brainwave-R modules:
How does process training work? As stated previously, process training aims to reroute information – a restorative approach. But my experience of using process training extensively in my treatment programmes has shown me that this is not the only way in which it appears to work. The 10 points made here are in no particular order of importance as all of these factors interact to varying amounts in different individuals:
• 80% enjoyed the modules • 100% thought the modules helped them to understand their injury • 80% thought they could explain their injury as a result of the modules • 100% stated the modules made them feel better about themselves
i. It provides a structure to the brain injury survivors’ day ii. It produces measureable ‘concrete’ results iii. It allows simple ‘concrete’ goals to be set iv. It provides lots of success v. It helps an individual feel in control vi. It can be given for homework
K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
vii. It allows the benefits of strategies to be seen quickly viii. It is non-threatening to brain injury survivors ix. It helps to develop executive skills x. It increases awareness The therapist needs to be actively involved throughout process training – including the phases of assessment, analysis and goal setting, along with providing feedback, monitoring and discussion on progress with the brain injury survivor. Thus simply giving computer based or pen and paper based activities is not sufficient – the therapist is crucial. In addition, it is essential to implement process training only as part of the cognitive rehabilitation process – along with education, strategies and functional applications – otherwise generalisation will be poor (Wilson, 2002; Schutz & Trainor, 2007). 1.3.3. Strategy training Strategy training is an important component of CRT. If cognitive skills cannot be improved through process training then strategies need to be taught to help the person to attempt to compensate for the problems. There are two broad categories of strategies that the individual can use (Parente & Hermann (1996): i. External strategies are those where the person relies on others or physical objects or devices. Examples of external strategies are: diary, notebook, lists, calendar, alarms, watches etc. ii. Internal strategies are those where the person relies on him or herself; these strategies cannot be physically touched they are inside the person’s head. Examples of internal strategies are: rhymes, mnemonics, mental retracing, visualisation etc. External strategies are more concrete and easier to demonstrate than internal strategies. They are also easier to observe for consistency of use. Perhaps even more importantly, they require less cognitive capacity than internal strategies. For this reason it is generally accepted that it is better to teach external strategies after brain injury unless the person used internal strategies well before their injury. The purpose of strategies is to help the person bypass or compensate for a particular problem or constellation of problems. The problem is still there but the functional impact is reduced or overcome. If the person with brain injury does not, or cannot, recognise the problems due to an insight or awareness problem they will not see the need to use a strategy. They may do it for you as
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a therapist in your sessions, because they like you, but they will not use it outside of sessions. If you follow these brain injury survivors up at six months post discharge you will probably find that they are not using the strategies you taught them. Why would they if they don’t believe they have a problem to compensate for? So it is essential to take awareness issues into account when training brain injury survivors to use strategies; if the brain injury survivor has good awareness then strategy training is a highly appropriate form of treatment, but if the brain injury survivor has very poor awareness then it is highly unlikely that the strategies will form any useful functional purpose upon discharge from the rehabilitation setting (Cicerone & Tupper, 1991). 1.3.4. Functional activities training There is no point in teaching brain injury survivors about their problems, or in practising specific underlying cognitive skills, or in spending time in teaching strategies, if what is learned is not applied in everyday life. Thus, it is important to ensure that all cognitive work aims to improve functional activities (Wilson, 2002). There are two approaches to functional activities training, both of which should be used: 1) training the individual to perform a functional task, 2) using a functional activity to work on the deficient cognitive skills that have been identified by assessment and analysis – thus the functional task is being used as a treatment medium (MacDonald & MacGaul, 1976). The way in which this medium is structured to achieve the goals is the important thing. For example, a brain injury survivor may have problems with memory, along with organisation difficulties. Rather than just teaching him/her to use the bus to get to and from town, the bus can be used as a real life activity within which to work on maximising the skills of memory and organisation skills. This then leads to clear goals being set and a structure being established for the task in order to work on specific skills. It is not about teaching the brain injury survivor to use the bus, but about teaching him/her the skills needed to use the bus – and lots of other everyday tasks. 1.4. Structure It seems to me that the single most important thing to remember in CRT is to provide structure for the person with brain injury. Try to understand how confusing and frightening the world must be for someone whose brain is not making easy sense of it. By providing such indi-
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K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
viduals with appropriate structure we can reduce this confusion and fear. The following aspects can be structured: • The process of assessment – including analysis of the pattern of results • The feedback approach to the person with brain injury following the assessment • The drawing up of the treatment plan • The explanation to the brain injury survivor of the treatment plan • The brain injury survivors day • The environment • The tasks themselves The logic or ‘rationality’ of structured approaches appears to be one of the central keys to successful rehabilitation – probably because it provides the individual with a sense of control over what has suddenly become a scary, often confusing situation. Structure also begins a healthy natural cascade effect: • The individuals’ end goal can be broken down into steps to achieve or into barriers to overcome • In addition the brain injury survivor can work towards their ultimate goal, in small manageable chunks It is the task of the therapist to provide this structure for the person with brain injury.
presented following acquired brain injury is generated. This simplified cognitive list works as a guide to assessment, analysis and treatment for over 95% of all the brain injury survivors I have treated over the years: i. Attention a. b. c. d. e.
Focused attention Sustained attention Selective attention Alternating attention Divided attention
ii. Visual Processing a. b. c. d. e. f.
Oculomotor skills Visual fields Visual acuity Visual scanning Pattern recognition Visual cognition
iii. Information Processing a. Information processing speed b. Information processing capacity c. Automatic vs Deliberate iv. Memory a. Storage b. Consolidation v. Executive Functions
1.5. Clarity and simplicity When I started working in this field over 30 years ago I became overloaded and confused by the sheer volume of published material about cognition. I felt the need to synthesise this into a more easily digestible format. The driving force to do this was the absolute requirement for me to be able to explain cognitive deficits to the people with brain injury. This was an absolute requirement because the single most important key to successful rehabilitation is the full engagement of the brain injury survivor in the process – rehabilitation could not be done to them; I merely provided the tools and feedback, the brain injury survivor had to do the work. I broke the area of cognition down into five major headings and identified an appropriate functional model for each one to guide the assessment, treatment and educational programmes for the people with brain injury. These models overlap of course, but in taking each concept from the various models a total of 23 different cognitive concepts that cover virtually all the problems
a. b. c. d. e. f. g.
Metacognition/Self awareness Goal setting Self initiation Self monitoring and self evaluation Planning an organising Self inhibition Flexible problem solving
1.6. CRT as part of a multidisciplinary approach Cognitive rehabilitation therapy should ideally form part of a team approach to rehabilitation – what has been called the ‘Therapeutic Milieu Approach’ (Ben-Yishay & Gold, 1990). 1.7. Metacognition It is crucial to work on metacognitive skills whilst working on CRT. If people do not have awareness or self-regulation they will not gain the maximum benefit from CRT (Bewick et al., 1995; Sohlberg & Kennedy, 2009).
K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
Metacognition refers to the ability to know about one’s own cognitive capabilities (self-awareness) and the ability to monitor and change one’s own performance (self-regulation) (Bewick et al., 1995). Metacognitive skills include the processes of: • • • • •
Awareness Evaluation Prediction Anticipation Self Control
1.8. Awareness I consider that developing good awareness is the key to successful rehabilitation. A great deal of cognitive rehabilitation should aim at developing the brain injury survivors’ appropriate awareness of cognitive skills and how these skills are important in the direction their life will take in the future (Crosson et al.,1989; Ben-Yishay & Daniels-Zide, 2000). A very easy way to help develop self-awareness through any of the process training exercises is to: • Require the brain injury survivor to predict well they will perform on an activity before start it • Require them to rate how well they think have performed on the activity as soon as complete it • Mark up and rate the task yourself
how they they they
The model that I have found most useful is that proposed by Crosson et al. (1989). I have extended this model to incorporate acceptance as well as awareness and to illustrate how the development of awareness is closely linked to the development of cognitive skills and psychosocial skills (Malia, 1997b).
2. Who the brain injury survivor is 2.1. Self concept We are the sum total of our life experiences; these combine to form a narrative or map of our lives. This is commonly called our concept of self, or our ego (Harris, 2003). Following a brain injury, that map of who we are is still there. The goal of most individuals is to get back to that map – i.e. ‘Back to what I used to be’. This is a natural desire, which we would all go through, and it is a
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very fine expectation indeed – so long as it is possible! Unfortunately, because brain injury destroys some of the brain connections and disrupts the chemicals, the individual is usually irreversibly altered as a result of brain injury. How far they are altered is directly related to the amount of damage i.e. the severity of injury. Because of these changes in skills and abilities the internal map that has successfully served the person all of their life cannot now been relied on. It is now inaccurate! Unlike the gradual growth and modifications that is the normal way that the map adjusts to life events – what Jean Piaget referred to as ‘assimilation’ and ‘accommodation’ (Piaget, 1976), this new situation requires such a massive shift and redrafting of the map in one fell swoop that it is very difficult, probably impossible, to do – the task is too enormous. However, the internal map must be redrawn otherwise it will not match external reality. This is the crux of awareness training. Time and appropriate intervention need to be allowed to help the individual in this task. Without good awareness, people with brain injury will not make optimal progress in CRT (Crosson et al., 1989; Schutz & Trainor, 2007). If an individual does not see the problems then they will not invest themselves fully in trying to overcome them, and will be unlikely to spontaneously compensate for these difficulties through using strategies. Developing appropriate awareness – i.e. making the internal map match external reality – is the single most important aspect of rehabilitation following brain injury! The ability to redraft this internal map is intimately connected to the level of cognitive skills. 2.2. Cognition, emotions and behaviour I discovered early on in my work that CRT should incorporate work on the brain injury survivors’ psychosocial skills (coping, anxiety, mood, self esteem, self concept, motivation, locus of control etc.) (Prigatano & Wong, 1999; Wilson, 2002). It is essential to bear in mind that psychosocial problems can result in cognitive deficits. So when you interpret any assessments ask yourself about the cause of any cognitive problems. For instance, if an individual is depressed they will probably have slowed information processing, deficient attention skills, and memory problems, both on testing and functionally. If you do not also measure levels of depression in this case you may embark upon an unnecessary programme of CRT. Simply by treating the depression the cognitive problems may disappear.
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K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
Similarly, problems with cognition can impact upon psychosocial skills. For instance, an individual who has problems with attention will not always take in all the relevant information about social situations. This may lead to them making incorrect social judgements, which may lead to feelings of frustration or social withdrawal if left untreated. An appropriate treatment programme would include CRT. 2.3. Goal setting I also discovered that it is essential to set goals to direct the rehabilitation (McMillan & Sparks, 1999). Having a goal, which is clearly set, allows the person with brain-injury and those around them to know what they are trying to achieve. This is particularly important since one of the major difficulties that is caused by the brain injury is a poorer ability to structure life for oneself. This is dependent upon intact frontal lobe function, and it is these parts of the brain that are the most commonly damaged following rapid acceleration/deceleration injuries, and following many strokes (Goldberg, 2001). Another issue is that the goals that many people with brain-injury previously had are no longer relevant to their new sense of self because of the changes that have taken place in their abilities. Thus even if they can set new goals, unless they have adjusted appropriately, they may struggle to set realistic goals. I have found SMART goals to be the most useful as they make it very clear exactly what the individual needs to put their efforts into and when they have achieved the goal. SMART goals are Specific, Measureable, Achievable, Resourced and Time bonded. Goals also need to be set for different time periods; in inpatient rehabilitation centres long-term goals are defined as those things that the brain injury survivor will achieve by the time they finish the programme, and short-term goals are defined as the steps to achieve the long-term goals. These could even be broken down further into target goals – the level of breakdown needs to be matched to the abilities of the brain injury survivor; if they can cope with larger conceptualisations then the breakdown need not be so finely tuned. 2.4. Assessment I have also found that it is essential to base treatment on a good assessment. There are different types of assessment, including standardised tests, rating scales, questionnaires, behavioural observations and structured interviews.
All of these approaches to assessment should be used to help construct an accurate picture of the strengths and weaknesses of cognitive function. None are better or worse; they should all be used (Prigatano et al., 1986). One of the major difficulties facing rehabilitation is the need to have frequently repeatable tests to demonstrate objective progress for brain injury survivors. Most tests have not been designed with this in mind – rather they have been designed purely as diagnostic tools. If these tests are repeated too frequently they may merely demonstrate improvement on the test. You need to be aware of this confounding factor. However, in my experience, if a large battery of tests has been used by multi disciplinary team members brain injury survivors often do not even recognise a test on repeating it just a few weeks later – let alone remember any items. This is a complex area but we need to remember that there is a difference in completing tests for diagnostic or medico-legal purposes, versus for rehabilitation purposes. When used in the latter context they need to be used with good understanding but with greater freedom from constraints induced by reliability and validity issues – otherwise we are left struggling to obtain objective data to demonstrate improvement. Also remember that psychometric tests should only form part of the assessment battery, so any gains should reflect in functional activities too (Prigatano et al., 1986). It is essential to gain as much information as possible about the individuals’ abilities, interests and social situation as they were prior to the injury. This is not so much to harness these, as they may have altered irreversibly, but mainly to help the therapist see this brain injury survivor as a human being who has undergone massive change. It will help us develop some sense of the huge loss that confronts them, and to enable us to approach them with genuine kindness and care. 2.5. Brain injury survivor involvement I have frequently heard the following type of statement from therapists: “If it’s not functional (i.e. relevant and meaningful) for the brain injury survivor, then we cannot get them to do it!” I believe 100% in the involvement of the brain injury survivor and I believe 100% in ensuring that everything that is done leads to functional improvements or improved quality of life. However, this does not mean that only functional tasks should be used. It is our professional responsibility to ensure that the
K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
brain injury survivor understands how activities, which target impairments will progress towards functional gains. Activities should ideally be purposeful and meaningful to the individual. Purposeful activities are more motivating to an individual and will encourage him/her to participate actively in the therapy. However, at certain stages of rehabilitation, usually in the acute and post acute phase, activities may have to be used that do not relate closely to everyday life but do improve underlying function. I have found that provided the purpose and goals of such activities are fully explained to the person with brain injury, such activities become purposeful for that individual. In other words the activities themselves may not be intrinsically purposeful or functional but may acquire purpose and meaning if the person can see what they are leading towards. Another commonly heard statement is: “The therapy must be led and directed by the brain injury survivor”. Let’s just think about this statement: it arises from the view that brain injury survivors in the health service should have rights and should have a voice that is listened to – moving away from the concept of doing things to a brain injury survivor to a more enlightened concept of doing things with a brain injury survivor. I am 100% committed to this concept and principle in all brain injury survivor groups except for neurological impairment, and possibly mental health. It is vital that assessment and therapy is client centred and not necessarily client led. Do not misunderstand me – some people with brain injury will be able to make informed decisions about their treatment – but they are the minority. The principle of brain injury survivor led therapy therefore needs to be applied sensibly to this client group. You are not empowering the person with brain injury by allowing them to lead and direct their own therapy if your assessments demonstrate that they have significant problems with cognitive skills. It is these very skills that allow us as humans to make valid judgements by attending to, juggling and manipulating relevant information. If the person has problems with this how can they be put in the position of making valid decisions and judgements? So, I am against the concept of simply asking a brain injury survivor what the problems are and being totally led by this. They need guidance from you as the expert. I am certainly against the idea of a brain injury survivor directing his or her own therapy. Once the brain injury
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survivor has been educated about his/her problems and once his/her awareness is good enough and once the cognitive skills can be used flexibly and fluidly enough in an integrated fashion, then I agree with it! It is however important for brain injury survivors to state what they would like to achieve from therapy as an end point e.g. ‘To live on my own’. It is our responsibility as therapists to develop a brain injury survivor to the stage where they can make decisions and judgements about their own future – once they are at this stage it is totally appropriate for them to lead their own therapy. It is rare for this to occur in the post acute setting, so this approach applies much more readily to the community-based rehabilitation that tends to take place at later stages post injury.
3. Who you are This is the least discussed factor in the published literature, but in my opinion by far the most important. My experiences over the last 30 years have led me to conclude that a good rapport between the brain injury survivor and therapist will lead to much more engagement in the therapy on both sides, and therefore better results. I sometimes half jokingly state that a therapist who can achieve a fast rapport but who has a small toolbox of activities will achieve far more than a therapist who has the full toolbox of activities but is poor at developing rapport. The therapist who is skilled at developing rapport is presumably high in emotional intelligence (Goleman, 1996). It is my experience that the brain injury survivor will rapidly develop a positive perception and expectation of them. The best combination from a therapist’s point of view is to have good rapport building skills along with the tools to help the brain injury survivor move forwards in their therapy. It is difficult to prescribe exactly how to build this rapport, since we are all different, and the ways we use our skills will also vary depending on the kind of brain injury survivor we are faced with. However, it can probably be boiled down into the following areas, as presented by the Veterans Agency/Department of Defense (2009): • Caring and Empathy ◦ Perceived sincerity ◦ Perceived ability to listen ◦ Perceived ability to see issues from the perspective of others
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K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
Fig. 3. Aspects of successful Cognitive Rehabilitation Therapy.
• Competence and Expertise ◦ Perceived intelligence, training, experience, educational level, professional attainment, knowledge and command of information • Dedication and Commitment ◦ Perceived altruism, diligence, self-identification, involvement and hard work ◦ Perceived health care workers’ hard work in the pursuit of health goals • Honesty and Openness ◦ Perceived truthfulness, candidness, fairness, objectivity and sincerity ◦ Non verbal cues and language that conveys sincerity and concern
learn how to overcome and/or adjust to these problems. I hope that this article stimulates the reader to feel positive and passionate about this area. We must always remember that despite the controversies in the field of cognitive rehabilitation we owe it to our brain injury survivors to provide them with interventions. I have written this article as a practitioner rather than a researcher or academic; it presents what I have found works for people following traumatic brain injury. This experience is sometimes at odds with the published research, but that is because the majority of the research is by its very nature decontextualised. Applied research is very difficult to complete because it tries to take in the nature of real life, warts and all, and this makes it hard to control and to analyse statistically. However, what matters is whether brain injury survivors can be seen to improve and/or report improvements. The approaches in this article appear to ‘work’ by this definition.
4. Conclusion This article has presented some aspects of 3 factors that I have found to be at the centre of successful cognitive rehabilitation approaches: What you do; Who the brain injury survivor is; Who you are. The following figure summarises these aspects: Given that the majority of brain injury survivors following brain injury will experience cognitive problems it is essential to provide them with therapy to help them
References Ben-Yishay, Y., & Gold, J. (1990). Therapeutic milieu approach to neuropsychological rehabilitation. Ch 11 in Neurobehavioural sequelae of traumatic brain injury, (Ed) Wood, RL, Taylor & Francis, London. Ben-Yishay, Y., & Daniels-Zide, E. (2000). Examined lives: Outcomes after holistic rehabilitation. Rehabilitation Psychology, 45(2), 112-129.
K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper Bergquist, T., & Malec, J. (1997). Psychology: Current practice and training issues in treatment of cognitive dysfunction. Neurorehabilitation, 8, 49-56. Bewick, K., Raymond, M., Malia, K., & Bennett, T. (1995). Metacognition as the ultimate executive: Techniques and tasks to facilitate executive functions. Neurorehabilitation, 5, 367-375. Cappa, S.F., et al., (2003). EFNS guidelines on cognitive rehabilitation: Report of an EFNS task force. European Journal of Neurology, 10, 11-23. Cappa. (2009). A summary of evidence: The European guidelines for cognitive rehabilitation. Brain Injury Professional (The official publication of the North American Brain Injury Society), 6(2), 8-9. Cicerone, K., & Tupper, D. (1991). Neuropsychological rehabilitation treatment of errors in everyday functioning. Ch 11 in (Eds) Tupper, DE and Cicerone, KD. The neuropsychology of everyday life: Issues in development and rehabilitation. Academic Publ, Kluwer, Boston. Cicerone, K., et al., (2000). Evidence based cognitive rehabilitation: Recommendations for clinical practice. Arch Phys Med Rehabil, 81, 1596-1615. Crosson, B., Barco, P.P., & Veloza, C.A., et al., (1989). Awareness and compensation in post acute head injury rehabilitation. Journal of Head Trauma Rehabilitatio, 4, 46-54. Gianutsos, R. (1980). What is cognitive rehabilitation? Journal of Rehabilitation, July/Aug/Sept, pp. 36-40. Goldberg, E. (2001). The executive brain, OUP. Goleman, D. (1996). Emotional Intelligence. Bloomsbury Publishing PLC, London Harris, B. (2003). The Values Clarifier: The Map of Reality Expander. Centerpointe Research Institute. MacDonald, E.M., & MacGaul, G. (Eds) (1976). Occupational Therapy in Rehabilitation. Bailliere Tindall, London. Malia, K., Bewick, K., Raymond, M., & Bennett, T. (1997a). Brainwave-R: Cognitive strategies and techniques for rehabilitation following brain injury. ProEd, Texas. Malia, K.B. (1997b). Insight After Brain Injury: What does it mean? The Journal of Cognitive Rehabilitation. May-June 1997. Malia, K, Brannagan, A. (2005). How to do Cognitive Rehabilitation. Brain Tree Training www.braintreetraining.co.uk
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Malia, K. (2007). Brainwave-R audit completed in 2007 with 56 patients. http://www.braintreetraining.co.uk/bwr audit.htm Malia, K. (2013). Aspects of successful cognitive rehabilitation therapy (unpublished). McMillan, T., & Sparks, C. (1999). Goal planning and neurorehabilitation. Neuropsychological Rehabilitation, 9, 345-361. National Institutes of Health Consensus Development Conference Statement on Rehabilitation of Persons with TBI. (1999). JAMA, 282(10), 974-983. Parente, R., & Hermann, D. (1996). Retraining cognition. Aspen, Maryland. Piaget, J. (1976). Piagets Theory: A reader in developmental psychology. Springer Berling Heidelberg. Prigatano, G., Pepping, M., & Klonoff, P. (1986). Cognitive, personality and psychosocial factors in the neuropsychological assessment of brain injured patients. Ch 7. In Clinical Neuropsychology of Intervention. (Eds.) B.P. Uzzell & Y. Gross. Martinus Nijhoff Publishing, Boston. Prigatano, G., & Wong, J. (1999). Cognitive and affective improvement in brain dysfunctional patients who achieve inpatient rehabilitation goals. Arch Physi Med Rehabil, 80, 77-84. Robertson, I. (1999). Setting goals for cognitive rehabilitation. Curr Opinion Neurology, 12(6), 703-708. Schutz, L., & Trainor, K. (2007). Evaluation of cognitive rehabilitation as a treatment paradigm. Brain Injury, 21(6), 545-557. Shiffrin, & Schneider. (1977). Controlled and automatic human information processing. Psychological Review, 84, 127-190. Sohlberg, M., & Kennedy, M. (2009). Evidence base practice: Reminders and updates for clinicians who treat cognitive communication disorders after brain injury. Brain Injury Professional (the official publication of the North American Brain Injury Society), 62, 10-14. Veterans Agency/Department of Defense. (2009). Clinical practice guidelines for the management of concussion. J Rehabil Res Dev 46(6), CP1-68. Wilson, B. (2002). Towards a comprehensive model of cognitive rehabilitation. Neuropsychological rehabilitation, 12(2), 97-110.
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NeuroRehabilitation 34 (2014) 3–13 DOI:10.3233/NRE-131018 IOS Press
What ‘works’ in cognitive rehabilitation: Opinion paper Kit Malia∗ The Society for Cognitive Rehabilitation (SCR), Surrey, UK
Abstract. This opinion paper provides a summary of some aspects of rehabilitation which seem to empower change and progress in people following brain injury according to the authors experience. It frames this within 3 factors: 1) What you do, 2) Who the brain injury survivor is, and 3) Who you are. Keywords: Cognitive rehabilition, brain injury, insight, self concept
My experience in the past 15 years of providing Cognitive Rehabilitation Therapy (CRT) for people with acquired brain injury (ABI) in schools, homes, inpatient rehabilitation centres, community settings, and support groups has resulted in the development of practical training courses in Cognitive Rehabilitation Therapy (CRT) for therapists, relatives, care workers and support groups, and the production of materials that can easily be used by these groups of people. This article is a summary of what I have found that works. Figure 1 is a schematic that represents the important factors. The centre of this schematic illustrates the interaction between the following 3 factors:
Who you are
Who the brain injury survivor is
Rehabilitation environment Social/Family environment
1. What you do 2. Who the brain injury survivor is 3. Who you are These 3 factors are embedded into the environment, culturally, socially and within the rehabilitation context. This article presents my views on the 3 factors that sit at the centre of this figure, and represent the essence of what ‘works’ in CRT.
What you do
Cultural environment
Fig. 1. Important factors in Cognitive Rehabilitation Therapy.
1. What you do 1.1. What is cognition?
∗ Address
for correspondence: Kit Malia, Brain Tree Training, PO Box 79, Leatherhead, Surrey KT23 4YT, UK. Tel.: +44 1276 472 369; E-mail: [email protected].
Cognition refers to our ability to make sense of our environment; it is easy to only think of this as the outside
1053-8135/14/$27.50 © 2014 – IOS Press and the authors. All rights reserved
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K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
world around us, but this also includes our inner environment – our thoughts and feelings and to a degree, even our impulses. Whenever we think and whenever we learn, we are using cognition (Parente & Hermann, 1996). 1.2. What is cognitive rehabilitation therapy (CRT)? CRT is the process of relearning cognitive skills that have been lost or altered as a result of damage to brain cells or altered brain chemistry. If skills cannot be relearned, then new ones have to be taught to enable the person to compensate for their lost cognitive functions (Bergquist & Malec, 1997; Schutz & Trainor, 2007). The aim of CRT is to improve the ability to carry out everyday tasks. This cannot be emphasised enough – there is no point in developing cognitive skills unless they have an impact upon real life functioning and thereby improve the quality of life for the individual (Wilson, 2002). 1.3. Approaches to CRT There are at least 2 general approaches to cognitive rehabilitation that are based on different assumptions about learning and the ability of the brain to compensate for damage (Bergquist & Malec, 1997; Gianutsos, 1980; Wilson, 2002; Robertson, 1999). The first is termed a cognitive-didactic approach. This approach assumes that treatment of specific neurological, communicative, cognitive and behavioural deficits is necessary for the individual to achieve maximum recovery – the ‘broken down’ approach. The second approach is functional and experiential; this approach assumes that by focusing on overall functional goals, any underlying relevant skills will improve or be compensated automatically. Most CRT programmes use a combination of these two approaches – this could be termed the “Integrated Holistic Approach” – training underlying skills in a hierarchical manner, whilst simultaneously ensuring that any learning is generalised into the persons’ everyday life. Bottom up impairment based work married with top down functional application. (Schutz & Trainor, 2007). Along with my colleague I have described four components to CRT (Malia & Brannagan, 2005): i. Education about cognitive weaknesses and strengths (aiming to improve awareness)
ii. The development of skills through direct retraining or practising the underlying cognitive skills often called process training (aiming to improve the neuronal and chemical pathways) iii. The use of external and internal compensatory strategies iv. Application of these in everyday life, and using functional tasks to improve cognitive skills functional activities training 1.3.1. Education This component provides information about how the brain works, how it gets injured and how it deals with recovery and repair. It should be provided to staff, relatives, and wherever possible, the people with brain injury. Education is an indispensable step in developing brain injury survivor insight – which remains the largest hindrance to successful rehabilitation (Cicerone & Tupper, 1991). Ideally, a person with TBI should become the world’s expert on his or her own particular brain injury. This does not mean that they are an expert on brain injury, but rather that they fully understand the nature and effects of their own particular injury. However, for the majority of people with brain injury and their relatives, this will be the first time they have come into contact with neurological injury. Up to this point they will not have spent much time, if any, thinking about how the brain works. Indeed, it is likely that this has always seemed a bit scientific or dry and academic. In addition, during our school years, most of us are not commonly taught about our own brain, and how we can maximise and enhance our cognitive skills. So, bearing this in mind, it is very important for the therapist to provide accurate information/education at an appropriate level for the person with brain injury and his/her relatives. The purpose of this is to enable the person to understand the terminology and to comprehend why they are experiencing the functional problems they have, and even more importantly what they can do to help optimise their recovery. To facilitate the education process, I suggest the following brief syllabus of topics (Table 1). The best way that I found to impart this information is through a structured educational group since the participants can learn from each other. A three-week group running for one hour a day with a minimum of four and a maximum of seven brain injury survivors, run by two staff, works well. Sometimes a more severely injured brain injury survivor will need to sit through two or three cycles of this course. Written materials to reinforce the information should also be given. The informa-
K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
Fig. 2. The Process Training Cycle. The theory of process training can be summarised as follows.
Table 1 A brief syllabus of brain injury topics • The areas of the brain • How the brain works and what it is designed to do (make sense of the world). Electricity and chemicals. Networks or pathways in the brain. The neurone, what damage can do to it and how this damage occurs • The mechanics of brain injury. How the brain can be damaged through impact injuries, strokes, tumours etc • The areas of the brain that are most likely to be injured as a result of different types of injury • The role of awareness (insight) into the problems and how insight is often affected after brain injury. The brain injury survivor needs to be encouraged to accept that this is an issue that needs to be improved, and, where possible, taught how he/she can develop this area of function • The normal pattern of recovery of problems • The four approaches to rehabilitation: Education, Process Training, Strategies and Functional Activities. How these all need to be done and how they are done in the rehabilitation programme. What the overall aim of the rehabilitation programme is i.e., to maximise recovery leading to best quality of life – as it is defined by the individual brain injury survivor • How specific cognitive problems impact upon all other areas of function and therefore how important they are • Models to understand the problems in each cognitive area • The Emotional consequences of having a brain injury • Coping Skills – the best way to cope with these changes in function
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tion should be reinforced through individual therapy sessions as needed. This form of ‘drip-feed’ system provides maximum rehearsal of the topics, i.e., telling the brain injury survivor the same information, using the same terminology time after time so that gradually over time they begin to remember it. 1.3.2. Process Training Repetition facilitates automaticity. Practising a skill is essential for moving a skill from conscious to automatic processing (Goldberg, 2001; Shiffrin & Schneider, 1977). Therefore a restorative approach to CRT, derives from the theory that repeatedly practising a skill will eventually help to re-route information around non-damaged pathways in the brain. In doing this it is important to use structured activities, which have been designed to improve cognitive skills, and to be consistent in their application. The therapy therefore provides ‘scaffolding’ for the damaged skills to be rebuilt. It is important to understand that process training is not simply a stimulation approach. The stimulation approach assumes that the mind is a muscle and that through exercising it will eventually improve cognition, which will in turn generalise to real life functions. This approach has some utility to it since the individual will usually improve on the tasks given, but there does not seem to be a corresponding improvement in everyday life skills (NIH, 1999; Cicerone et al., 2000; Cappa et al., 2003, 2009). Figure 2 below shows the process. This is therefore not simply a generalized stimulation approach, because it rests on assessment, analysis, goal setting, on going monitoring of progress, feedback and reassessment.
• 100% stated the modules increased their motivation • 100% stated the modules increased their confidence • 80% stated the structured nature of the tasks and homework gave them a sense of control over their treatment • 100% stated they found the consistent feedback useful • 80% stated they thought the work they did directly related to the brain injury Process training does not operate in isolation; the following processes and skills are inextricably linked with success in process training approaches (Malia & Brannagan, 2005): Measurable results Concrete feedback Executive Functions Feelings of success Self Responsibility Amount of practice Locus of control Discipline of routine
Seeing that strategies work Awareness Self Esteem Confidence Concrete goals Consistency Motivation Structure
This complex linking is problematic for research because it increases the number of ‘variables’ or possible contributing factors when searching for a cause-effect relationship i.e. ‘If we implement this particular exercise does it improve this particular function or skill?’
Does process training work? I conducted a survey with brain injury survivors who were treated within a multidisciplinary team setting (Malia et al., 2007). Part of their cognitive rehabilitation involved the use of Brainwave-R (Malia et al., 1997a). Upon completion of the CRT programme the 56 brain injury survivors were asked for their comments on the Brainwave-R modules:
How does process training work? As stated previously, process training aims to reroute information – a restorative approach. But my experience of using process training extensively in my treatment programmes has shown me that this is not the only way in which it appears to work. The 10 points made here are in no particular order of importance as all of these factors interact to varying amounts in different individuals:
• 80% enjoyed the modules • 100% thought the modules helped them to understand their injury • 80% thought they could explain their injury as a result of the modules • 100% stated the modules made them feel better about themselves
i. It provides a structure to the brain injury survivors’ day ii. It produces measureable ‘concrete’ results iii. It allows simple ‘concrete’ goals to be set iv. It provides lots of success v. It helps an individual feel in control vi. It can be given for homework
K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
vii. It allows the benefits of strategies to be seen quickly viii. It is non-threatening to brain injury survivors ix. It helps to develop executive skills x. It increases awareness The therapist needs to be actively involved throughout process training – including the phases of assessment, analysis and goal setting, along with providing feedback, monitoring and discussion on progress with the brain injury survivor. Thus simply giving computer based or pen and paper based activities is not sufficient – the therapist is crucial. In addition, it is essential to implement process training only as part of the cognitive rehabilitation process – along with education, strategies and functional applications – otherwise generalisation will be poor (Wilson, 2002; Schutz & Trainor, 2007). 1.3.3. Strategy training Strategy training is an important component of CRT. If cognitive skills cannot be improved through process training then strategies need to be taught to help the person to attempt to compensate for the problems. There are two broad categories of strategies that the individual can use (Parente & Hermann (1996): i. External strategies are those where the person relies on others or physical objects or devices. Examples of external strategies are: diary, notebook, lists, calendar, alarms, watches etc. ii. Internal strategies are those where the person relies on him or herself; these strategies cannot be physically touched they are inside the person’s head. Examples of internal strategies are: rhymes, mnemonics, mental retracing, visualisation etc. External strategies are more concrete and easier to demonstrate than internal strategies. They are also easier to observe for consistency of use. Perhaps even more importantly, they require less cognitive capacity than internal strategies. For this reason it is generally accepted that it is better to teach external strategies after brain injury unless the person used internal strategies well before their injury. The purpose of strategies is to help the person bypass or compensate for a particular problem or constellation of problems. The problem is still there but the functional impact is reduced or overcome. If the person with brain injury does not, or cannot, recognise the problems due to an insight or awareness problem they will not see the need to use a strategy. They may do it for you as
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a therapist in your sessions, because they like you, but they will not use it outside of sessions. If you follow these brain injury survivors up at six months post discharge you will probably find that they are not using the strategies you taught them. Why would they if they don’t believe they have a problem to compensate for? So it is essential to take awareness issues into account when training brain injury survivors to use strategies; if the brain injury survivor has good awareness then strategy training is a highly appropriate form of treatment, but if the brain injury survivor has very poor awareness then it is highly unlikely that the strategies will form any useful functional purpose upon discharge from the rehabilitation setting (Cicerone & Tupper, 1991). 1.3.4. Functional activities training There is no point in teaching brain injury survivors about their problems, or in practising specific underlying cognitive skills, or in spending time in teaching strategies, if what is learned is not applied in everyday life. Thus, it is important to ensure that all cognitive work aims to improve functional activities (Wilson, 2002). There are two approaches to functional activities training, both of which should be used: 1) training the individual to perform a functional task, 2) using a functional activity to work on the deficient cognitive skills that have been identified by assessment and analysis – thus the functional task is being used as a treatment medium (MacDonald & MacGaul, 1976). The way in which this medium is structured to achieve the goals is the important thing. For example, a brain injury survivor may have problems with memory, along with organisation difficulties. Rather than just teaching him/her to use the bus to get to and from town, the bus can be used as a real life activity within which to work on maximising the skills of memory and organisation skills. This then leads to clear goals being set and a structure being established for the task in order to work on specific skills. It is not about teaching the brain injury survivor to use the bus, but about teaching him/her the skills needed to use the bus – and lots of other everyday tasks. 1.4. Structure It seems to me that the single most important thing to remember in CRT is to provide structure for the person with brain injury. Try to understand how confusing and frightening the world must be for someone whose brain is not making easy sense of it. By providing such indi-
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K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
viduals with appropriate structure we can reduce this confusion and fear. The following aspects can be structured: • The process of assessment – including analysis of the pattern of results • The feedback approach to the person with brain injury following the assessment • The drawing up of the treatment plan • The explanation to the brain injury survivor of the treatment plan • The brain injury survivors day • The environment • The tasks themselves The logic or ‘rationality’ of structured approaches appears to be one of the central keys to successful rehabilitation – probably because it provides the individual with a sense of control over what has suddenly become a scary, often confusing situation. Structure also begins a healthy natural cascade effect: • The individuals’ end goal can be broken down into steps to achieve or into barriers to overcome • In addition the brain injury survivor can work towards their ultimate goal, in small manageable chunks It is the task of the therapist to provide this structure for the person with brain injury.
presented following acquired brain injury is generated. This simplified cognitive list works as a guide to assessment, analysis and treatment for over 95% of all the brain injury survivors I have treated over the years: i. Attention a. b. c. d. e.
Focused attention Sustained attention Selective attention Alternating attention Divided attention
ii. Visual Processing a. b. c. d. e. f.
Oculomotor skills Visual fields Visual acuity Visual scanning Pattern recognition Visual cognition
iii. Information Processing a. Information processing speed b. Information processing capacity c. Automatic vs Deliberate iv. Memory a. Storage b. Consolidation v. Executive Functions
1.5. Clarity and simplicity When I started working in this field over 30 years ago I became overloaded and confused by the sheer volume of published material about cognition. I felt the need to synthesise this into a more easily digestible format. The driving force to do this was the absolute requirement for me to be able to explain cognitive deficits to the people with brain injury. This was an absolute requirement because the single most important key to successful rehabilitation is the full engagement of the brain injury survivor in the process – rehabilitation could not be done to them; I merely provided the tools and feedback, the brain injury survivor had to do the work. I broke the area of cognition down into five major headings and identified an appropriate functional model for each one to guide the assessment, treatment and educational programmes for the people with brain injury. These models overlap of course, but in taking each concept from the various models a total of 23 different cognitive concepts that cover virtually all the problems
a. b. c. d. e. f. g.
Metacognition/Self awareness Goal setting Self initiation Self monitoring and self evaluation Planning an organising Self inhibition Flexible problem solving
1.6. CRT as part of a multidisciplinary approach Cognitive rehabilitation therapy should ideally form part of a team approach to rehabilitation – what has been called the ‘Therapeutic Milieu Approach’ (Ben-Yishay & Gold, 1990). 1.7. Metacognition It is crucial to work on metacognitive skills whilst working on CRT. If people do not have awareness or self-regulation they will not gain the maximum benefit from CRT (Bewick et al., 1995; Sohlberg & Kennedy, 2009).
K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
Metacognition refers to the ability to know about one’s own cognitive capabilities (self-awareness) and the ability to monitor and change one’s own performance (self-regulation) (Bewick et al., 1995). Metacognitive skills include the processes of: • • • • •
Awareness Evaluation Prediction Anticipation Self Control
1.8. Awareness I consider that developing good awareness is the key to successful rehabilitation. A great deal of cognitive rehabilitation should aim at developing the brain injury survivors’ appropriate awareness of cognitive skills and how these skills are important in the direction their life will take in the future (Crosson et al.,1989; Ben-Yishay & Daniels-Zide, 2000). A very easy way to help develop self-awareness through any of the process training exercises is to: • Require the brain injury survivor to predict well they will perform on an activity before start it • Require them to rate how well they think have performed on the activity as soon as complete it • Mark up and rate the task yourself
how they they they
The model that I have found most useful is that proposed by Crosson et al. (1989). I have extended this model to incorporate acceptance as well as awareness and to illustrate how the development of awareness is closely linked to the development of cognitive skills and psychosocial skills (Malia, 1997b).
2. Who the brain injury survivor is 2.1. Self concept We are the sum total of our life experiences; these combine to form a narrative or map of our lives. This is commonly called our concept of self, or our ego (Harris, 2003). Following a brain injury, that map of who we are is still there. The goal of most individuals is to get back to that map – i.e. ‘Back to what I used to be’. This is a natural desire, which we would all go through, and it is a
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very fine expectation indeed – so long as it is possible! Unfortunately, because brain injury destroys some of the brain connections and disrupts the chemicals, the individual is usually irreversibly altered as a result of brain injury. How far they are altered is directly related to the amount of damage i.e. the severity of injury. Because of these changes in skills and abilities the internal map that has successfully served the person all of their life cannot now been relied on. It is now inaccurate! Unlike the gradual growth and modifications that is the normal way that the map adjusts to life events – what Jean Piaget referred to as ‘assimilation’ and ‘accommodation’ (Piaget, 1976), this new situation requires such a massive shift and redrafting of the map in one fell swoop that it is very difficult, probably impossible, to do – the task is too enormous. However, the internal map must be redrawn otherwise it will not match external reality. This is the crux of awareness training. Time and appropriate intervention need to be allowed to help the individual in this task. Without good awareness, people with brain injury will not make optimal progress in CRT (Crosson et al., 1989; Schutz & Trainor, 2007). If an individual does not see the problems then they will not invest themselves fully in trying to overcome them, and will be unlikely to spontaneously compensate for these difficulties through using strategies. Developing appropriate awareness – i.e. making the internal map match external reality – is the single most important aspect of rehabilitation following brain injury! The ability to redraft this internal map is intimately connected to the level of cognitive skills. 2.2. Cognition, emotions and behaviour I discovered early on in my work that CRT should incorporate work on the brain injury survivors’ psychosocial skills (coping, anxiety, mood, self esteem, self concept, motivation, locus of control etc.) (Prigatano & Wong, 1999; Wilson, 2002). It is essential to bear in mind that psychosocial problems can result in cognitive deficits. So when you interpret any assessments ask yourself about the cause of any cognitive problems. For instance, if an individual is depressed they will probably have slowed information processing, deficient attention skills, and memory problems, both on testing and functionally. If you do not also measure levels of depression in this case you may embark upon an unnecessary programme of CRT. Simply by treating the depression the cognitive problems may disappear.
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K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
Similarly, problems with cognition can impact upon psychosocial skills. For instance, an individual who has problems with attention will not always take in all the relevant information about social situations. This may lead to them making incorrect social judgements, which may lead to feelings of frustration or social withdrawal if left untreated. An appropriate treatment programme would include CRT. 2.3. Goal setting I also discovered that it is essential to set goals to direct the rehabilitation (McMillan & Sparks, 1999). Having a goal, which is clearly set, allows the person with brain-injury and those around them to know what they are trying to achieve. This is particularly important since one of the major difficulties that is caused by the brain injury is a poorer ability to structure life for oneself. This is dependent upon intact frontal lobe function, and it is these parts of the brain that are the most commonly damaged following rapid acceleration/deceleration injuries, and following many strokes (Goldberg, 2001). Another issue is that the goals that many people with brain-injury previously had are no longer relevant to their new sense of self because of the changes that have taken place in their abilities. Thus even if they can set new goals, unless they have adjusted appropriately, they may struggle to set realistic goals. I have found SMART goals to be the most useful as they make it very clear exactly what the individual needs to put their efforts into and when they have achieved the goal. SMART goals are Specific, Measureable, Achievable, Resourced and Time bonded. Goals also need to be set for different time periods; in inpatient rehabilitation centres long-term goals are defined as those things that the brain injury survivor will achieve by the time they finish the programme, and short-term goals are defined as the steps to achieve the long-term goals. These could even be broken down further into target goals – the level of breakdown needs to be matched to the abilities of the brain injury survivor; if they can cope with larger conceptualisations then the breakdown need not be so finely tuned. 2.4. Assessment I have also found that it is essential to base treatment on a good assessment. There are different types of assessment, including standardised tests, rating scales, questionnaires, behavioural observations and structured interviews.
All of these approaches to assessment should be used to help construct an accurate picture of the strengths and weaknesses of cognitive function. None are better or worse; they should all be used (Prigatano et al., 1986). One of the major difficulties facing rehabilitation is the need to have frequently repeatable tests to demonstrate objective progress for brain injury survivors. Most tests have not been designed with this in mind – rather they have been designed purely as diagnostic tools. If these tests are repeated too frequently they may merely demonstrate improvement on the test. You need to be aware of this confounding factor. However, in my experience, if a large battery of tests has been used by multi disciplinary team members brain injury survivors often do not even recognise a test on repeating it just a few weeks later – let alone remember any items. This is a complex area but we need to remember that there is a difference in completing tests for diagnostic or medico-legal purposes, versus for rehabilitation purposes. When used in the latter context they need to be used with good understanding but with greater freedom from constraints induced by reliability and validity issues – otherwise we are left struggling to obtain objective data to demonstrate improvement. Also remember that psychometric tests should only form part of the assessment battery, so any gains should reflect in functional activities too (Prigatano et al., 1986). It is essential to gain as much information as possible about the individuals’ abilities, interests and social situation as they were prior to the injury. This is not so much to harness these, as they may have altered irreversibly, but mainly to help the therapist see this brain injury survivor as a human being who has undergone massive change. It will help us develop some sense of the huge loss that confronts them, and to enable us to approach them with genuine kindness and care. 2.5. Brain injury survivor involvement I have frequently heard the following type of statement from therapists: “If it’s not functional (i.e. relevant and meaningful) for the brain injury survivor, then we cannot get them to do it!” I believe 100% in the involvement of the brain injury survivor and I believe 100% in ensuring that everything that is done leads to functional improvements or improved quality of life. However, this does not mean that only functional tasks should be used. It is our professional responsibility to ensure that the
K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
brain injury survivor understands how activities, which target impairments will progress towards functional gains. Activities should ideally be purposeful and meaningful to the individual. Purposeful activities are more motivating to an individual and will encourage him/her to participate actively in the therapy. However, at certain stages of rehabilitation, usually in the acute and post acute phase, activities may have to be used that do not relate closely to everyday life but do improve underlying function. I have found that provided the purpose and goals of such activities are fully explained to the person with brain injury, such activities become purposeful for that individual. In other words the activities themselves may not be intrinsically purposeful or functional but may acquire purpose and meaning if the person can see what they are leading towards. Another commonly heard statement is: “The therapy must be led and directed by the brain injury survivor”. Let’s just think about this statement: it arises from the view that brain injury survivors in the health service should have rights and should have a voice that is listened to – moving away from the concept of doing things to a brain injury survivor to a more enlightened concept of doing things with a brain injury survivor. I am 100% committed to this concept and principle in all brain injury survivor groups except for neurological impairment, and possibly mental health. It is vital that assessment and therapy is client centred and not necessarily client led. Do not misunderstand me – some people with brain injury will be able to make informed decisions about their treatment – but they are the minority. The principle of brain injury survivor led therapy therefore needs to be applied sensibly to this client group. You are not empowering the person with brain injury by allowing them to lead and direct their own therapy if your assessments demonstrate that they have significant problems with cognitive skills. It is these very skills that allow us as humans to make valid judgements by attending to, juggling and manipulating relevant information. If the person has problems with this how can they be put in the position of making valid decisions and judgements? So, I am against the concept of simply asking a brain injury survivor what the problems are and being totally led by this. They need guidance from you as the expert. I am certainly against the idea of a brain injury survivor directing his or her own therapy. Once the brain injury
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survivor has been educated about his/her problems and once his/her awareness is good enough and once the cognitive skills can be used flexibly and fluidly enough in an integrated fashion, then I agree with it! It is however important for brain injury survivors to state what they would like to achieve from therapy as an end point e.g. ‘To live on my own’. It is our responsibility as therapists to develop a brain injury survivor to the stage where they can make decisions and judgements about their own future – once they are at this stage it is totally appropriate for them to lead their own therapy. It is rare for this to occur in the post acute setting, so this approach applies much more readily to the community-based rehabilitation that tends to take place at later stages post injury.
3. Who you are This is the least discussed factor in the published literature, but in my opinion by far the most important. My experiences over the last 30 years have led me to conclude that a good rapport between the brain injury survivor and therapist will lead to much more engagement in the therapy on both sides, and therefore better results. I sometimes half jokingly state that a therapist who can achieve a fast rapport but who has a small toolbox of activities will achieve far more than a therapist who has the full toolbox of activities but is poor at developing rapport. The therapist who is skilled at developing rapport is presumably high in emotional intelligence (Goleman, 1996). It is my experience that the brain injury survivor will rapidly develop a positive perception and expectation of them. The best combination from a therapist’s point of view is to have good rapport building skills along with the tools to help the brain injury survivor move forwards in their therapy. It is difficult to prescribe exactly how to build this rapport, since we are all different, and the ways we use our skills will also vary depending on the kind of brain injury survivor we are faced with. However, it can probably be boiled down into the following areas, as presented by the Veterans Agency/Department of Defense (2009): • Caring and Empathy ◦ Perceived sincerity ◦ Perceived ability to listen ◦ Perceived ability to see issues from the perspective of others
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K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper
Fig. 3. Aspects of successful Cognitive Rehabilitation Therapy.
• Competence and Expertise ◦ Perceived intelligence, training, experience, educational level, professional attainment, knowledge and command of information • Dedication and Commitment ◦ Perceived altruism, diligence, self-identification, involvement and hard work ◦ Perceived health care workers’ hard work in the pursuit of health goals • Honesty and Openness ◦ Perceived truthfulness, candidness, fairness, objectivity and sincerity ◦ Non verbal cues and language that conveys sincerity and concern
learn how to overcome and/or adjust to these problems. I hope that this article stimulates the reader to feel positive and passionate about this area. We must always remember that despite the controversies in the field of cognitive rehabilitation we owe it to our brain injury survivors to provide them with interventions. I have written this article as a practitioner rather than a researcher or academic; it presents what I have found works for people following traumatic brain injury. This experience is sometimes at odds with the published research, but that is because the majority of the research is by its very nature decontextualised. Applied research is very difficult to complete because it tries to take in the nature of real life, warts and all, and this makes it hard to control and to analyse statistically. However, what matters is whether brain injury survivors can be seen to improve and/or report improvements. The approaches in this article appear to ‘work’ by this definition.
4. Conclusion This article has presented some aspects of 3 factors that I have found to be at the centre of successful cognitive rehabilitation approaches: What you do; Who the brain injury survivor is; Who you are. The following figure summarises these aspects: Given that the majority of brain injury survivors following brain injury will experience cognitive problems it is essential to provide them with therapy to help them
References Ben-Yishay, Y., & Gold, J. (1990). Therapeutic milieu approach to neuropsychological rehabilitation. Ch 11 in Neurobehavioural sequelae of traumatic brain injury, (Ed) Wood, RL, Taylor & Francis, London. Ben-Yishay, Y., & Daniels-Zide, E. (2000). Examined lives: Outcomes after holistic rehabilitation. Rehabilitation Psychology, 45(2), 112-129.
K. Malia / What ‘works’ in cognitive rehabilitation: Opinion paper Bergquist, T., & Malec, J. (1997). Psychology: Current practice and training issues in treatment of cognitive dysfunction. Neurorehabilitation, 8, 49-56. Bewick, K., Raymond, M., Malia, K., & Bennett, T. (1995). Metacognition as the ultimate executive: Techniques and tasks to facilitate executive functions. Neurorehabilitation, 5, 367-375. Cappa, S.F., et al., (2003). EFNS guidelines on cognitive rehabilitation: Report of an EFNS task force. European Journal of Neurology, 10, 11-23. Cappa. (2009). A summary of evidence: The European guidelines for cognitive rehabilitation. Brain Injury Professional (The official publication of the North American Brain Injury Society), 6(2), 8-9. Cicerone, K., & Tupper, D. (1991). Neuropsychological rehabilitation treatment of errors in everyday functioning. Ch 11 in (Eds) Tupper, DE and Cicerone, KD. The neuropsychology of everyday life: Issues in development and rehabilitation. Academic Publ, Kluwer, Boston. Cicerone, K., et al., (2000). Evidence based cognitive rehabilitation: Recommendations for clinical practice. Arch Phys Med Rehabil, 81, 1596-1615. Crosson, B., Barco, P.P., & Veloza, C.A., et al., (1989). Awareness and compensation in post acute head injury rehabilitation. Journal of Head Trauma Rehabilitatio, 4, 46-54. Gianutsos, R. (1980). What is cognitive rehabilitation? Journal of Rehabilitation, July/Aug/Sept, pp. 36-40. Goldberg, E. (2001). The executive brain, OUP. Goleman, D. (1996). Emotional Intelligence. Bloomsbury Publishing PLC, London Harris, B. (2003). The Values Clarifier: The Map of Reality Expander. Centerpointe Research Institute. MacDonald, E.M., & MacGaul, G. (Eds) (1976). Occupational Therapy in Rehabilitation. Bailliere Tindall, London. Malia, K., Bewick, K., Raymond, M., & Bennett, T. (1997a). Brainwave-R: Cognitive strategies and techniques for rehabilitation following brain injury. ProEd, Texas. Malia, K.B. (1997b). Insight After Brain Injury: What does it mean? The Journal of Cognitive Rehabilitation. May-June 1997. Malia, K, Brannagan, A. (2005). How to do Cognitive Rehabilitation. Brain Tree Training www.braintreetraining.co.uk
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Malia, K. (2007). Brainwave-R audit completed in 2007 with 56 patients. http://www.braintreetraining.co.uk/bwr audit.htm Malia, K. (2013). Aspects of successful cognitive rehabilitation therapy (unpublished). McMillan, T., & Sparks, C. (1999). Goal planning and neurorehabilitation. Neuropsychological Rehabilitation, 9, 345-361. National Institutes of Health Consensus Development Conference Statement on Rehabilitation of Persons with TBI. (1999). JAMA, 282(10), 974-983. Parente, R., & Hermann, D. (1996). Retraining cognition. Aspen, Maryland. Piaget, J. (1976). Piagets Theory: A reader in developmental psychology. Springer Berling Heidelberg. Prigatano, G., Pepping, M., & Klonoff, P. (1986). Cognitive, personality and psychosocial factors in the neuropsychological assessment of brain injured patients. Ch 7. In Clinical Neuropsychology of Intervention. (Eds.) B.P. Uzzell & Y. Gross. Martinus Nijhoff Publishing, Boston. Prigatano, G., & Wong, J. (1999). Cognitive and affective improvement in brain dysfunctional patients who achieve inpatient rehabilitation goals. Arch Physi Med Rehabil, 80, 77-84. Robertson, I. (1999). Setting goals for cognitive rehabilitation. Curr Opinion Neurology, 12(6), 703-708. Schutz, L., & Trainor, K. (2007). Evaluation of cognitive rehabilitation as a treatment paradigm. Brain Injury, 21(6), 545-557. Shiffrin, & Schneider. (1977). Controlled and automatic human information processing. Psychological Review, 84, 127-190. Sohlberg, M., & Kennedy, M. (2009). Evidence base practice: Reminders and updates for clinicians who treat cognitive communication disorders after brain injury. Brain Injury Professional (the official publication of the North American Brain Injury Society), 62, 10-14. Veterans Agency/Department of Defense. (2009). Clinical practice guidelines for the management of concussion. J Rehabil Res Dev 46(6), CP1-68. Wilson, B. (2002). Towards a comprehensive model of cognitive rehabilitation. Neuropsychological rehabilitation, 12(2), 97-110.
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