NEUROPSYCHOLOGICAL REHABILITATION, 2002, 12 (2), 97–110 Towards a comprehensive model of cognitive rehabilitation Barbara A. Wilson MRC Cognition and Brain Sciences Unit, Cambridge & Oliver Zangwill Centre, Ely, UK Cognitive rehabilitation is a field that needs a broad theoretical base incorporating frameworks, theories, and models from a number of different areas. No one model or group of models is sufficient to address the complex problems facing people with cognitive problems consequent upon brain injury. This paper considers some of the models that have influenced cognitive rehabilitation including models of cognition, assessment, recovery, behaviour, emotion, compensation, and learning. An attempt is made to synthesise these different models into a comprehensive model of cognitive rehabilitation. Introduction A model is a representation to help us explain, understand and predict related phenomena. Models range from simple analogies such as comparing memory storage to storing books in a library (Baddeley, 1992) through to highly complex systems such as connectionist modelling to explain how a damaged system might learn new skills (Robertson & Murre, 1999). In rehabilitation, models are useful in enabling us to conceptualise processes, think about treatment and explain impairments to relatives and patients. The working memory model (Baddeley & Hitch, 1974), the dual route model of reading (Coltheart, 1985), the model of lexical processing (Patterson & Shewell, 1987) and the face recognition model of Bruce and Young (1986) have all been influential in helping to explain phenomena, predict strengths and weaknesses and plan treatment for people with cognitive impairments. All these models mentioned above originate from cognitive neuropsychology. Some believe that this field is the one where we should seek Correspondenc e should be sent to Professor B.A. Wilson, OBE, MRC Cognition and Brain Sciences Unit, Box 58, Addenbrooke ’s Hospital, Cambridge CB2 2QQ, UK. Tel: +44 (0)1223 355294, Fax: +44 (0)1223 516630, Email: [email protected] k Ó 2002 Psychology Press Ltd http://www.tandf.co.uk/journals/pp/09602011.html DOI:10.1080/09602010244000020 98 WILSON models for cognitive rehabilitation. Coltheart (1984), for example, said that rehabilitation programmes should be based on a theoretical analysis of the nature of the disorder to be treated. In 1991, Coltheart, went further. He said that in order to treat a deficit it is necessary to fully understand its nature and to do this one should have in mind how the function is normally achieved. Without such a model, it is impossible to determine what kinds of treatment are appropriate. In similar vein, Caramazza and Hillis (1993) say they are not concerned with the question of whether cognitive models are helpful in rehabilitation for “surely they are, it is hard to imagine that efforts at therapeutic intervention would not be facilitated by having the clearest possible idea of what needs to be rehabilitated” (p. 218). Instead they are concerned with the potential role of these models in articulating theoretically informed constraints on cognitive disorders. The purpose of this paper is to try to demonstrate that one model (or one group of models such as those from cognitive neuropsychology ) are insufficient to (1) determine what needs to be rehabilitated and (2) plan appropriate treatment for cognitive impairments. Models of cognitive functioning are certainly not the only models to influence cognitive rehabilitation. Rehabilitation is one of many fields that needs a broad theoretical base incorporating frameworks, theories and models from a number of different areas. What needs to be rehabilitated in cognitive rehabilitation? At the most fundamental level, people undergoing cognitive rehabilitation require help to remediate, reduce or alleviate their cognitive deficits. Sohlberg and Mateer (1989) say that “Cognitive rehabilitation . . . refers to the therapeutic process of increasing or improving an individual’s capacity to process and use incoming information so as to allow increased functioning in everyday life” (p. 3). In a recent book these two authors go on to suggest that the term “cognitive rehabilitation” is too narrow and it is better to talk about “rehabilitation of individuals with cognitive impairments” (Sohlberg & Mateer, 2001, p. 3). This seems a sensible suggestion as it implies that people with cognitive impairment may have additional problems that should also be addressed in rehabilitation programmes. Ben-Yishay and Prigatano (1990) offer the following definition of cognitive rehabilitation, “the amelioration of deficits in problem-solving abilities in order to improve functional competence in everyday situations” (p. 395). The important point about this definition is that, like Sohlberg and Mateer’s view, it focuses on functional competence in every day life. We have moved on from the early days of cognitive rehabilitation with its emphasis on drills and exercises to try to reduce basic impairments, to a more individualised approach addressing the everyday manifestations of these impairments, i.e., disabilities and handicaps (Wilson, 1997). TOWARDS A MODEL OF COGNITIVE REHABILITATION 99 McLellan (1991) argued that rehabilitation is not something we do to people or “give” to people, it is not like surgery or drugs but a two-way interactive process involving the person with disability, therapeutic staff, relatives and possibly members of the wider community. So cognitive rehabilitation is a process whereby people with brain injury work together with health service professionals and others to remediate or alleviate cognitive deficits arising from a neurological insult (Wilson, 1996). However, people with cognitive deficits arising from injury to the brain are likely to have a number of associated problems such as anxiety, depression, and difficulties with communication and social interaction. All such additional problems need to be addressed in the rehabilitation we offer to people with brain injury. In short, cognitive rehabilitation should focus on real-life, functional problems, it should address associated problems such as mood or behavioural problems in addition to the cognitive difficulties and it should involve the person with brain injury, relatives and others in the planning and implementation of cognitive rehabilitation. From this summary it can be seen that no one existing model is sufficient to address all aspects of cognitive rehabilitation programmes. Some views on theories relevant to cognitive rehabilitation In 1987 I argued that three areas from within psychology were important for cognitive rehabilitation—neuropsychology for helping us to understand the organisation of the brain, cognitive psychology for providing theoretical models, and behavioural psychology for providing a number of treatment strategies that could be modified or adapted to reduce the everyday problems of people with cognitive deficits (Wilson, 1987). Gianutsos (1989) in the foreword to Sohlberg and Mateer’s (1989) book on cognitive rehabilitation said that cognitive rehabilitation came of mixed parentage including neuropsychology, occupational therapy, speech and language therapy, and special education. McMillan and Greenwood (1993) believed that rehabilitation should draw on clinical neuropsychology , behavioural analysis, and cognitive retraining together with group and individual psychotherapy. These authors, together with Diller (1987), understood that cognitive rehabilitation should not be confined by one theoretical framework or model. In Diller’s words, “While current accounts of remediation have been criticised as lacking a theoretical base, it might be more accurate to state that remediation must take into account several theoretical bases” (Diller, 1987, p. 9). This contrasts with the view of Coltheart (1991) described above who appears to believe that the models from cognitive neuropsychology are sufficient to plan cognitive rehabilitation. 100 WILSON People undergoing rehabilitation rarely have isolated cognitive deficits. Not only do they have, as a rule, several different cognitive problems, they may also have emotional, social and behavioural problems. Furthermore, models of cognitive functioning typically identify impairments (e.g., difficulty understanding prepositions) rather than disabilities or handicaps, i.e., everyday problems. It has already been argued that cognitive rehabilitation should focus on the real-life functional consequences of brain injury. One final point to be made here is that these models tell us what to treat not how to treat (Wilson, 1997). In Caramazza’s words, “There is nothing specifically about our theory of the structure of the spelling system (or the reading system, the naming system, the sentence comprehension system, and so forth) which serves to constrain our choice of therapeutic strategy. Merely ‘knowing’ … the probable locus of a deficit … does not, on its own, allow us to specify a therapeutic strategy. To do so requires not just a theory of the structure of the system, but also, and more important, a theory of therapeutic intervention—a theory of the ways in which a damaged system may be modified as a consequence of particular forms of intervention” (Caramazza, 1989, p. 392). This is not to say, of course, that models of cognitive functioning are unimportant. These models have been hugely important in identifying problems, in explaining phenomena and in making predictions about behaviour. Take the models of reading, for example. In the 1970s the neuropsychologica l assessment of reading typically involved asking the person with brain injury to read a list of words or some short passages. Since the work on models of reading appeared in the 1980s (Coltheart, 1985) assessment has changed almost beyond recognition. We now typically assess the ability to read regular versus irregular words, parts of speech, words acquired at different ages, concrete versus abstract words, highly imageable words versus difficult to image words and real words versus nonsense words. These models tell us both where the problem(s) lie(s) and what the cognitive constraints are on any programme we wish to implement. Other models and theoretical approaches relevant to cognitive rehabilitation Models and theories of assessment. Assessments derived from models of cognitive functioning have been mentioned above. A number of other models of assessment are also used by neuropsychologist s including those engaged in cognitive rehabilitation. These include (1) the psychometric approach based on statistical analysis, (2) the localisation approach whereby the examiner attempts to assess which parts of the brain are damaged and which are intact, and (3) the ecologically valid approach in which attempts are made to predict real-life problems. Although these approaches enable us to build up a picture of TOWARDS A MODEL OF COGNITIVE REHABILITATION 101 a person’s cognitive strengths and weaknesses they are unable to pinpoint in sufficient detail the nature of the everyday problems and what problems need to be addressed, or to tell us how the family is coping or to determine whether the problems are exacerbated by depression, anxiety, or fatigue. Behavioural and functional assessments are required to complement the information obtained from the standardised tests. Wilson (in press a) discusses these approaches in greater detail. Behavioural models and theories. Models from learning theory and behavioural psychology have been used in rehabilitation, including cognitive rehabilitation, for a number of years. One of the first to advocate these models for adults with brain injury was Goodkin (1966, 1969). He worked with people with motor and language problems. The 1980s saw published reports of these approaches applied to cognitive problems (Diller, 1980; Ince, 1980; Wilson, 1981). Today the approaches are widely used in rehabilitation including cognitive rehabilitation (see, for example, Alderman, 1996; Wilson, 1999). Behavioural approaches provide a structure, a way of analysing cognitive problems, a means of assessing the everyday manifestations of cognitive problems and a means of evaluating the efficacy of treatment programmes. In addition, these approaches supply us with many existing treatment strategies such as shaping, modelling, desensitisation, chaining, flooding, extinction, positive reinforcement, response cost and so on, all of which can be modified or adapted to suit particular purposes, problems and people. Theories and models of recovery. If further recovery is expected in the person with brain injury we need to know this before implementing rehabilitation so that we can try to determine whether the treatment or recovery is responsible for any change in behaviour (Wilson et al., 2000). Although natural recovery can sometimes be ruled out by ensuring there is a stable baseline prior to treatment, theories of recovery are helpful in understanding what may be happening to the people we are working with. Recovery in the first few minutes after an insult to the brain probably reflects the resolution of temporary dysfunction with accompanying structural damage. Recovery after several days is likely to be due to the resolution of temporary structural abnormalities such as vascular disruptia or oedema, or to the depression of metabolic enzyme activity. Recovery after several years might be achieved through regeneration, diaschisis and plasticity. For a more detailed discussion of recovery see Robertson and Murre (1999), Whyte (1990), and Wilson (1998). Theories and models of emotion. These are becoming increasingly important in cognitive rehabilitation. Prigatano (1995, 1999) believes that dealing with the emotional effects of brain injury is essential to rehabilitation success. Social isolation, anxiety and depression are common in survivors of brain injury (Wilson in press, b). Gainotti (1993) distinguishes three main factors 102 WILSON causing emotional and psychosocial problems after brain injury—those due to neurological factors, those due to psychological or psychodynamic factors, and those due to psychosocial factors. An example of the first cause might be someone with frontal lobe damage leading to loss of control and anger outbursts. An example of the second cause would be someone with reduced cognitive abilities and consequent loss of self-esteem together with depression because of an inability to engage in his or her previous profession. An example of the third cause might be someone who loses all his or her friends and colleagues following a brain injury and is thus very socially isolated. Other models and theories that need to be taken into account are those of premorbid personality, neurological, physical and biochemical models, and other models of emotional behaviour such as those from cognitive behaviour therapy. Ever since Beck’s highly influential book, Cognitive therapy and emotional disorders, which appeared in 1976, cognitive behaviour therapy (CBT) has become one of the most important and best validated psychotherapeutic procedures (Salkovskis, 1996). An update of Beck’s model appeared in 1996 (ibid). Williams, Evans, and Wilson (submitted) discuss CBT with survivors of traumatic brain injury. Analytic psychotherapy is also used in rehabilitation practice. Prigatano (1999) is one of the best known advocates of this approach with survivors of brain injury. The World Health Organisation (WHO). The conceptual frameworks put forward by the WHO (1980, 1986) have significantly influenced clinical rehabilitation in the past 20 years or so. The 1980 framework classified the sequelae of brain injury into impairments, disabilities and handicaps. Impairments can be regarded as damage to physical or mental structures (e.g., occipital damage or damage to object recognition systems); disabilities refer to the particular problems caused by the handicaps (e.g., inability to distinguish between individual people or between particular objects in the home); handicaps can be seen as problems imposed by society because of the disability (e.g., in an environment adapted for blind people, the person with object recognition difficulties may cope well). Although many neuropsychologist s are primarily concerned with impairments identified by neuropsychologica l tests, most people involved in rehabilitation (clients, families, therapists) are more concerned with disabilities and handicaps. Given that some cognitive rehabilitation programmes appear to be more concerned with improving test scores than with reducing everyday problems (Carney et al., 1999), one can only assume that this is done in the belief or hope that reducing impairments will reduce everyday problems. To date, however, there is little evidence that this actually happens. The earlier WHO models are now being replaced by another, rather similar, framework. This classifies problems resulting from injury or illness into those TOWARDS A MODEL OF COGNITIVE REHABILITATION 103 affecting (1) the body, (2) activities, and (3) participation. In practice similar principles apply to the new model as to the earlier ones, i.e., rehabilitation efforts are directed at reducing limitations and increasing activities and participation. A model/theoretical framework for understanding compensatory behaviour. Compensation is one of the major tools for enabling people with brain injury to cope in everyday life. Wilson and Watson (1996) described a framework for understanding compensatory behaviour in people with organic memory impairment. The framework was developed by Bäckman and Dixon (1992) and further modified by Dixon and Bäckman (1999), it distinguishes four stages in the evolution of compensatory behaviour, namely origins, mechanisms, forms, and consequences. Wilson (2000) went on to use this framework to consider compensation for a variety of cognitive deficits. Evans, Wilson, Needham, and Brentnall (submitted) investigated factors that predict good use of compensations. The main predictors appear to be age (younger people compensate better), severity of impairment (very severely impaired people compensate less well), specificity of deficit (those with widespread cognitive deficits appear to compensate less well than those with more specific deficits), and premorbid use of strategies (those using some compensatory aids pre-morbidly appear to compensate better). This is an area where further work is required. If we can predict who is likely to compensate without too much difficulty, we can target our rehabilitation to help those who are less likely to compensate spontaneously. Errorless learning. Errorless learning has, in recent years, become an important aspect of memory rehabilitation although we do not yet know whether this is the best method of learning for those with cognitive problems other than memory. As the name implies, errorless learning involves learning without errors or mistakes. Instead of learning by trial and error, information is presented in such a way to avoid or significantly reduce mistakes. First described by Terrace (1963, 1966) in work with pigeons it was soon adapted for people with developmental learning disabilities (Cullen, 1976; Sidman & Stoddard, 1967; Walsh & Lamberts, 1979). A second impetus to errorless learning came from research into implicit learning from cognitive neuropsycholog y (Baddeley & Wilson, 1994). In the 1990s research showed that people with severe memory deficits learned better if prevented from making mistakes during the learning process (Baddeley & Wilson, 1994; Clare, Wilson, Breen, & Hodges, 1999; Evans et al., 2000; Glisky, 1995; Squires, Hunkin & Parkin, 1996; Wilson, Baddeley, Evans, & Shiel, 1994; Wilson & Evans, 1996). Baddeley and Wilson (1994) believed that errorless learning was effective because it capitalised on the intact implicit memory skills of amnesic patients; Squires, Hunkin, and Parkin (1997) argued that it capitalised on the residual 104 WILSON explicit memory of amnesic patients. Recent work, however, suggests that it may work through both these mechanisms (Page et al., 2001) Thus, very severely memory impaired people, with virtually no explicit memory, have to rely on implicit memory whereas those with some, albeit limited, explicit/ episodic memory, may find that errorless learning benefits both systems. Errorless learning appears to be superior to trial-and-error learning for people with severe memory deficits. It is not yet clear whether errorless learning is superior to trial-and-error learning for cognitive problems other than memory. Nor is it clear whether it is the method of choice for motor or other non-cognitive problems. Potentially, this is a powerful treatment method but further work remains to be carried out. The SORKC model (Kanfer & Saslow, 1969). This well-established model from behavioural psychology is still of value in cognitive rehabilitation because it allows us to incorporate the physical and neurological status of the individual patient along with motivation, emotion and behaviour. SORKC stands for Stimulus, Organism, Response, Contingency, and Consequence. Wilson (1999) describes the use of this model for the treatment of a headinjured man with cognitive and behaviour problems. It is potentially helpful for planning and implementing treatment for many survivors of brain injury. The holistic model. Holistic approaches address cognitive, social, emotional, and functional aspects of brain injury together because how we feel affects how we behave and how we think. These programmes are concerned with (1) increasing the individual’s awareness of what has happened to him or her, (2) increasing acceptance and understanding of what has happened, (3) the provision of strategies or exercises to reduce cognitive problems, (4) the development of compensatory skills, and (5) the provision of vocational counselling. All programmes include both group and individual therapy. It can be argued that the holistic approach is less of a model and more of a series of beliefs, or as Prigatano (1999) puts it, a series of “principles”. Nevertheless, clinically the holistic model makes sense and despite its apparent expense, in the long term it is probably cost-effective (Cope, Cole, Hall & Barkan, 1991; Mehlbye & Larsen, 1994; Wilson, 1997; Wilson & Evans, in press). Towards an all-encompassing theory of cognitive rehabilitation Figure 1 is an attempt to put together many (although not all) of the aspects to take into consideration when undertaking cognitive rehabilitation. Starting with the person with the cognitive impairments and his or her family, pre-morbid personality and lifestyle of the brain-injured person (and other family members) is likely to impact on the needs and desires of these people and thus on the rehabilitation offered. Consequently, it is desirable to carry 105 Figure 1. A provisional model of cognitive rehabilitation. 106 WILSON out an assessment of pre-morbid personality either through interview or through the administration of one of the measures comparing pre- and postmorbid characteristics. The BICRO (Brain Injury Community Rehabilitation Outcomes, Powell, Beckers, & Greenwood, 1998) and the EBIQ (European Brain Injury Questionnaire, Teasdale et al., 1997) both attempt to identify preand post-morbid characteristics. The nature, extent, and severity of the brain damage needs to be determined. This information may be obtained from hospital notes and/or the referral forms, neurological investigations and imaging studies. Neuropsychological investigations may also add to the picture. It is helpful if people are monitored over time, particularly if a deteriorating condition is suspected. It should be recognised that repeated neuropsychological assessments may not provide reliable information as improvement in scores may simply reflect a practice effect whereas no change in scores may mask a deterioration, again because of a practice effect (Wilson et al., 2000). Further recovery may need to be considered especially if the person with brain injury is seen in the early days, weeks, or months after an insult. Theories of recovery are relevant here. The cause of the brain damage is also relevant. People with traumatic brain injury, for example, may show recovery for a longer time than, say, someone with encephalitis (Wilson, 1998). One of the most important tasks in rehabilitation is the identification of current problems. There are several theoretical frameworks one can draw on when assessing these problems. Information from standardised tests that help us build up a profile of strengths and weaknesses need to be complemented by the information from functional or behavioural assessments to build up a picture of how the problems affect everyday life. Cognitive, emotional, psychosocial, and behavioural problems should be evaluated more thoroughly through reference to a more detailed model. Models of language, reading, memory, executive functioning, attention, and perception can provide details about cognitive strengths and deficits. Models from cognitive behaviour therapy, such as the one by Beck (1996) mentioned earlier, contribute to understanding of emotional and psychosocial problems, while a behavioural model such as the SORKC model of Kanfer and Saslow (1969) allows better conceptualisation of disruptive or inappropriate behaviours. While this is not an exhaustive list of the type of problems faced by survivors of brain injury, other problems such as motor or sensory deficits are more likely to be treated by physiotherapists or other staff. Neuropsychologists, of course, can work together successfully with others and may need to incorporate models of motor and sensory functioning and recovery in their work. Once the problems are identified, one can decide on the rehabilitation strategies. This is likely to involve the negotiation of suitable goals. Given that one of the main goals of rehabilitation is to enable people to return to their own most TOWARDS A MODEL OF COGNITIVE REHABILITATION 107 appropriate environment, the person with brain injury, family members, and rehabilitation staff should all be involved in the negotiating process. The main goals may attempt to improve impairments, disabilities or handicaps. Although there may be times or stages in the recovery process where it is appropriate to focus on impairments, the majority of goals for those engaged in cognitive rehabilitation will address disabilities and handicaps. There is obviously more than one way to try to achieve any goal. Sometimes we try to restore lost functioning, or we may wish to encourage anatomical reorganisation, help people use their residual skills more efficiently, find an alternative means to the final goal (functional adaptation), use environmental modifications to bypass problems or use a combination of these methods. Whichever method is selected, one should be aware of theories of learning. In Baddeley’s words, “A theory of rehabilitation without a model of learning is a vehicle without an engine” (Baddeley, 1993, p. 235). Evidence for the success of these approaches also needs to be taken into account. The final question is how best to evaluate success or otherwise. Consider Whyte’s (1997) view that outcome should be congruent with the level of intervention. If intervening at the disability level then outcome measures should be measures of disability and so forth. As most rehabilitation is concerned with the reduction of disabilities and handicaps, outcome measures should reflect changes in disability and handicap. For example, how well does someone who forgets to do things, now remember to do things? There are studies that directly assess such changes. 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