Home and family in cognitive rehabilitation after brain injury: Implementation of social reserves

1 Introduction

Acquired brain injury (ABI) – be it in the form of traumatic brain injury (TBI), infection, tumour or vascular incidents (stroke) – is almost always associated with functional impairments within motor, sensory and/or cognitive domains. Practically all such impairments affect the short- and long-term future of the patient (as well as her/his family and network). However, the most crucial factor determining the future quality of life, ability to return to independent living and potentially work appears to be how severely the injury affects cognitive domains such as attention, learning, memory, language and problem solving (e.g. Moore & Stambrook, 1995). Thus, it is essential to identify and clinically implement the optimal circumstances for the posttraumatic recovery of such cognitive functions.

Within clinical practise as well as within research, the primary focus is mostly on the rehabilitative efforts in a hospital or similar institutional setting. While it is being recognized that the patient should (as far as possible) eventually return to her/his home environment and ideally workplace, relatively little focus has been on rehabilitative training and other therapeutic interventions taking place in the home environment. In the present communication we primarily address home-based therapeutic procedures. We see the home and family of the ABI patient as a “social reserve” – which when appropriately utilized may offer significant benefits.

Two of the important factors promoting an optimal outcome of cognitive rehabilitation are early training adjusted to the individual even in the acute phase (Andelic et al., 2012) and the intensity of training. The importance of training intensity has been demonstrated in animal models (e.g. Malá et al., 2012) as well as clinical studies (e.g. Archer, Svensson, & Alricsson, 2012; Cicerone, Mott, Azulay, & Friel, 2004; Cifu, Kreutzer, Kolakowsky-Hayner, Marwitz, & Englander, 2003; Meinzer, Elbert, Djundja, Taub, & Rockstroh, 2007; Pulvermüller et al., 2001). A high intensity of posttraumatic training may, however, not always be advantageous (e.g. Bland, Pillai, Aronowski, Grotta, & Schallert, 2001; DeBow, McKenna, Kolb, & Colbourne, 2004; Humm, Kozlowski, James, Gotts, & Schallert, 1998; Kozlowski, James, & Schallert, 1996) and beneficial effects of intensive training may only be achieved within certain posttraumatic time-frames (e.g. Malá et al., 2012). But if taking factors such as the timing of initiation into consideration, a cognitive training procedure of high intensity may in many instances be beneficial. For instance, when applying the prism adaptation therapy (PAT) in patients suffering hemispatial neglect after right hemisphere injury, positive and lasting effects appear to depend on a rather long-lasting and intensive training period (Newport & Schenk, 2012). Unfortunately, many institutions suffer significant limitation regarding staff and other resources and the chain of rehabilitation is often broken between its different phases (Andelic et al., 2012) – preventing the optimal intensity and duration of cognitive rehabilitative training. A promising development offering at least a partial solution to these problems is the development of computer-based training methods. If adequately developed and tested (e.g. Wilms & Mogensen, 2011), such methods can become important vehicles of intensive posttraumatic training – for instance in the form of a computerized version of the PAT for hemispatial neglect (e.g. Wilms & Malá, 2010). Such computerized methods have the simultaneous benefit of imposing a significantly reduced burden on institutional staff and allowing the rehabilitative training process to continue in the home environment of the patient.

Another important development is an increasing focus on the advantages of community-based rehabilitation services both for the patient with ABI and the caregiver (Smith et al., 2006). One systematic review of 30 studies (few, however, with a methodologically strong design) focused on how to enhance participation in outpatient rehabilitation (Carlson et al., 2006). In that review the focus was on reducing impairments or improving activity-specific skills through training – in the expectation that enhanced participation will result. There are results supporting this view e.g. in case of spatial neglect (e.g. Wilms & Mogensen, 2011). However, the review concluded that there is even more research supporting the need for a focus on the value of life roles in the rehabilitation process. Such a focus may be an effective way of improving performance and may for instance be less influenced by the need for transfer of skills and strategies to new environments. As will be described in detail below such a lack of transfer often is a problem in rehabilitation where it can be a challenge for the ABI patient to generalize skills and strategies to the home environment (Carlsson et al., 2006). Doig, Fleming, Cornwell, and Kuipers (2011) found, that even though there were no significant differences in outcome measures on home- or hospital-based treatment, the level of satisfaction was much greater in the home-based environment since the participants felt more motivated by training in real-life situations. Additionally, home-based rehabilitation allowed the roles of patient and therapist, respectively, to become less rigid.

A shift of the post-acute rehabilitative training to the home environment may be beneficial beyond the possibility of a more intensive training schedule. An emerging understanding of the neurocognitive mechanisms of cognitive functional recovery after brain injury (see below) points to a number of beneficial effects of shifting as much as possible of the rehabilitative training from the institutional environment to a more naturalistic and ideally home-based context.

2 Mechanisms of cognitive recovery

On the basis of extensive animal model based research as well as human imaging studies and clinical observations the Reorganization of Elementary Functions (REF) model has been developed to account for the neurocognitive mechanisms mediating posttraumatic cognitive recovery (e.g. Mogensen, 2011a, 2011b, 2012a, 2012b, 2014, 2015; Mogensen & Malá, 2009). According to the REF model, every surface phenomenon in the form of a behavioural act/task solution or a mental process/conscious manifestation is mediated by a unique cognitive “program” called an Algorithmic Strategy (AS). Every such AS is a unique combination of the basic information processing “modules” called Elementary Functions (EFs). While an EF is strictly localized to a subregion within a neural structure – and performs fixed information processing of a very basic nature – every AS combines EFs localized within a multitude of brain regions. Thus, an AS is mediated by a high number of strictly localized EFs and the neural connectivity combining these into the relevant “program”. While the information processing performed by an individual EF remains fixed, the interaction between EFs – the information flow within the AS – is shaped by experience. Whenever a task solution is attempted, the result of that behaviour causes a feedback in the form of “backpropagation” mechanisms (e.g. Bryson & Ho, 1969; Parker, 1986; Rumelhart & McClelland, 1986; Werbos, 1974, 1994) – which reorganizes the currently active AS as well as related ASs.

These reorganizational processes are not unique to the injured brain. They have developed as a general mechanism allowing the individual to face and solve novel situations and are a basic, adaptive mechanism. What is unique in case of brain injury, is the fact that the “novel” situation faced by the brain injured individual used to have a readily available solution – an AS able to lead to an appropriate task solution. When injury to the brain destroys the neural substrate of EFs participating in a given AS, that AS is lost and, consequently, the associated surface phenomenon is lost or impaired.

The basic mechanism of the rehabilitative training process is, according to the REF model, a creation of a novel AS which can accomplish what appears to be the “re-creation” of the by injury impaired surface phenomenon. If the recovered surface phenomenon – by inspection of the daily living of the patient and/or by the standard cognitive tests employed in the evaluation of brain injured patients – is considered to be at the level of proficiency seen pretraumatically, the patient will be evaluated as “fully recovered”. Such a level of “full recovery” is, however, achieved via neural as well as cognitive mechanisms dissimilar to those seen pretraumatically – a reflection of the fact that task solutions of similar proficiency can be achieved via a multitude of mediating cognitive processes and neural substrates (e.g. Mogensen, 2012b, 2014, 2015).

A crucial factor in the rehabilitative training is the backpropagation mechanisms reorganizing the interplay between the remaining EFs of the injured brain. And what is driving these reorganizational processes is the feedback achieved during the training process.

The fact that the AS developed during rehabilitative training depends so crucially on the specific feedback received during the training process carries the obvious risk that while the developed AS is appropriate within the specific training setting, it may not generalize to the real-life situations subsequently faced by the patient. The rehabilitative training may consist of rather abstract training situations administered in an institutional setting with little or no resemblance to the daily-life situations of the patient. If so, the risk of little or no generalization of training is significant. Although evaluation of the progress of the patient (within the training situation) may show a high degree of progress (and may even approach a “full recovery”), the patient may subsequently draw only limited advantages of such progress – for instance at home or in the workplace.

3 The importance of the home environment

As an alternative, training may be brought into the daily environment of the patient. And such training may even contain aspects specifically engaging and interacting with that daily environment. Under such circumstances, chances are much better that ASs relevant to the daily-life activities of the patient are established. Thus, training in the home environment of the patient carries with it a higher likelihood that “ecologically valid” results are achieved and that the patient will be able to benefit in daily-life situations. Another advantage of home- and community-based rehabilitation is that the familial interaction pattern seems to have less of a tendency to change in maladaptive ways. This is partly achieved via open expressions of adverse thoughts and feelings combined with better ability to meet the needs of the family (Smith et al., 2006).

Frequently, distinctions are being made between the training-induced rehabilitative processes (such as those referred to above) and what is termed “spontaneous recovery” (e.g. León-Carrión & Machuca-Murga, 2001). The recovery process is defined as being “spontaneous” if the patient has not been subjected to specific rehabilitative training procedures within the cognitive domain in question. Explicitly or implicitly, the “spontaneous” recovery processes are mainly seen as being experience-independent. A range of such experience-independent neural processes do take place along various time-scales during the posttraumatic period. One example is the disappearance of an injury-associated “penumbra” (e.g. Choi et al., 2007). It must, however, be remembered that significant experience-associated neural reorganizations occur throughout the posttraumatic period without being parts of the (formalized) rehabilitative training regime. As described above, neurocognitive reorganizations occur whenever an individual attempts to solve a problem (for more details see e.g. Mogensen, 2014). And for the brain injured patient attempts to solve problems (more or less specifically associated with the injury in question) are not restricted to formalized training sessions. Such problem solving situations may include attempts to communicate with staff or family members, attempts to navigate within the immediate environment, or attempts to operate more or less complex machinery such as household appliances – to mention but a few of the informal “training” situations potentially faced by a patient. If such an informal “training” is primarily taking place in the home environment of the patient, the outcome is likely to offer the optimal long-term effects.

It is important to keep in mind that the processes associated with problem solving – and, consequently, with the posttraumatic rehabilitative training – are always of a reorganizational nature. Regardless of the degree to which the individual has prior experience with the problem in question, the establishment of an appropriate AS is never a completely de novo combination of EFs. Rather, the point of departure is whatever interconnected networks of EFs are available (e.g. Mogensen, 2014). What is available may contain important elements which can remain unmodified when incorporated into the eventual (successful) AS (for instance the “subroutines” referred to as Algorithmic Modules (AMs) by Mogensen (2012b), (2014). Or there may be little resemblance between the networks of EFs available by the start of the training process and the eventually resulting AS. The ease and speed with which a successful AS is constructed does, however, depend significantly on the “quality” and relevance of the available and recruited networks of EFs. The conclusion that the pretraumatic experience of the patient can be a factor in the posttraumatic rehabilitative process has been reached and formulated in different contexts elsewhere. At the neural level this has been addressed in terms of what is called “brain reserve” (e.g. Luk, Bialystok, Craik, & Grady, 2011; Satz, 1993; Scheibel et al., 2009; Schmand, Smit, Geerlings, & Lindeboom, 1997; Valenzuela & Sachdev, 2006). Considered at the cognitive level (and often discussed in terms of potential delay of onset of dementia) similar processes have been referred to as “cognitive reserve” (e.g. Alexander et al., 1997; Craik, Bialystok, & Freedman, 2010; Fuentes, McKay, & Hay, 2010; Kesler, Adams, Blasey, & Bigler, 2003; Ropacki & Elias, 2003; Schweizer, Ware, Fischer, Craik, & Bialystok, 2012; Stern, 2002, 2003, 2006).

As elaborated elsewhere (e.g. Mogensen, 2012b, 2014), the rehabilitative training will reach a faster and more successful outcome if arranged in ways promoting the activation of such “reserves” – for instance promoting the integration of available AMs into the emerging AS. While such processes are important in the formalized rehabilitative training, they may be of equal importance in the informal “training” occurring as part of the patient’s daily activities. To the extent that such activities call into action premorbidly important ASs and AMs, the process of reorganizing networks of EFs into the ideal posttraumatic situation may be achieved more efficiently. Due to the very individual nature of the networks in question, it is impossible to give generalized instructions as to how the goal of activating appropriate ASs and AMs can best be achieved. However, there is a high likelihood that training within the home environment may be preferable. Practically everybody has an extensive experience with the physical layout as well as social structures of the home environment. Consequently, the attempted daily life within an institutional framework and the home environment, respectively, are likely to call into action vastly different degrees of “reserves”. If the patient is present in the well-known context of home and family, more resources at the neurocognitive levels are likely to be recruited and thereby made available to the reorganizational processes of the rehabilitative training (formalized as well as informal).

As should be clear from the above, a multitude of advantages can be achieved by shifting the rehabilitative training process – as far as possible – from the environment of hospital and other institutions to the home of the patient: (A) If the appropriate training methods are available, a higher intensity of training can be achieved. (B) The results of formalized and informal training are more likely to generalize to the daily life of the patient. And (C) daily living within the home environment may be an important factor in the recruitment of relevant neurocognitive mechanisms which constitute the “raw material” of the reorganizational processes leading to the desired rehabilitative outcome.

Thus, from a theoretical point of view it is important to utilize the home environment in the cognitive rehabilitative training whenever possible. Full scale controlled clinical studies are needed in order to fully document the assumed advantages of the home-based training. But some clinical documentation has already been obtained (e.g. Boman, Lindstedt, Hemmingsson, & Bartfai, 2004; Wilms, 2014).

4 Implementation of social reserves

As discussed above it has become common place to consider the importance of both a “brain reserve” and a “cognitive reserve” in the context of neurological conditions including ABI. Presently we argue that the home environment of the patient suffering ABI should also be considered a significant source of “reserves”. Utilizing such a “social reserve” (not the least in the context of improved technology-based training methods) may increase the speed and efficacy of cognitive training – and provide a better generalization of the outcome of cognitive training.

Conflict of interest

The authors have no conflicts of interest that might have affected the conduct or report of the presented work. Additionally, sources of funding had no influence on neither the design nor interpretation of the present study.