Chapter 2. Occupational therapy revisited

CHAPTER CONTENTS

Introduction27

Occupation29

Occupation and wellness31

Occupation and meaning33

Occupation and creativity35

Occupation and wellbeing39

INTRODUCTION

Perhaps the most serious challenge that our profession and our educational systems have had to deal with in recent years has been the diversity of practice that comes under the occupational therapy umbrella. A fly on the wall who didn’t know any better would look at a therapist using drama with people who have learning difficulties, and at another engaged in dressing practice on a stroke unit, and know for sure that these two people were from different professions. For whilst of course there is a common base in occupation, there is little resemblance in the day-to-day professional practice of the two. Such is the richness of occupational life, and the diversity of occupational need.

Since the early days of the profession, both in general and mental health settings, an understanding of the role of occupation in health and wellbeing has increased and spread, as has a concurrent demand for occupational therapy and occupational therapists in all kinds of disability contexts. Practice, it seems though, has rushed ahead of theory, and whilst we are still engaging in debate about the profession’s core values and comparing this model with that, community pressure demands action – in terminal care, in family therapy, in forensic psychiatry, in environmental design, etc. These are all areas of health care (and there are many more examples) in which occupational therapy is a relative newcomer. Dementia care is another.

Occupational therapy began to make its presence felt in dementia care during the late 1970s and 1980s with the creation of the first posts for occupational therapists in the context of residential and nursing homes. We might say that it has been perhaps around 30 years in its development so far. In those early years there was little in the way of a theory base to underpin practice and the concept of models was still (in the UK at least) in its infancy. Those of us attracted to work in the dementia care field found ourselves struggling with an existing philosophy which didn’t ‘fit’ with the problems we were experiencing in clinical practice.

The predominant value base of the time prized above all things independence, mastery, autonomy; the individuals should learn or relearn to ‘do’ for himself. Models were developing around concepts of adaptation, rehabilitation and self-actualisation, and many of us became entangled in trying to meet the problems of dementia with a frame of reference centred around notions of functional independence. We found ourselves trying to fit the person to the theory, effectively to deal with the practical problems of degeneration by recourse to theories of regeneration. It didn’t work, and led us into very real ethical and practical difficulties.

The conflict we had was illustrated neatly and rather picturesquely at the time by a paper which asked us the question, ‘Does it matter whether it’s Tuesday or Friday?’ (Morton & Bleathman 1988). This article was actually written to promote a validation approach to therapy over reality orientation. It is a matter which would not generate a great deal of interest today, nevertheless the core of the argument (wellbeing or independence as the priority for intervention) continues 20 years on. It raised an issue of considerable significance for the occupational therapist, for in the tradition of occupational therapy, it is the task of the occupational therapist to find ways of ensuring that Mrs Bloggs does know the difference between Tuesday and Friday. Cognitive and daily living functions are at stake here, for if she doesn’t remember that Tuesday and Friday are her day centre days or daughter-visiting days or whatever, her functional independence in the real world is impaired. (It can also be extremely irritating for the day centre driver and the daughter.) But Morton & Bleathman were arguing that a practice-centred approach (reality orientation is the treatment for memory disorder), which fails to understand the over-riding needs of the person in question, not only misses the mark of therapy, but can actually be damaging and counter-productive.

What is important to Mrs Bloggs? She may of course have some insight into her memory deficit, and request and appreciate help in this matter. But are we sure about that? Why do we feel constrained to have her tackle this memory problem? Is it a request from relatives? Is it because day care staff get very tetchy about wasted journeys and empty places? Is it because we have an ingrained need to return aberrant behaviour to conformity? Or is it simply that we are driven by the whole ethos of our profession, which insists that therapy returns somebody from the sickness or disability they have suffered, to the person they were before (or as near as possible). We believe that such an approach has in many instances been detrimental, and sometimes even damaging to the person it was intended to help. Will it help Mrs Bloggs to have constant reminders of her memory deficit? Does she welcome environmental aids? Is she happy about attending a centre where there will be people who will portray what she might become? Does it really matter whether it’s Tuesday or Friday? That is the critical question every practitioner must ask as he or she approaches a new client – is striving to return or to improve function the first priority? If it is, existing models of intervention will suffice. If it isn’t, there has to be an alternative; there is little accommodation in a model of rehabilitation for the problems of a degenerative condition.

It is the purpose of this text to propose an alternative, and in the ensuing chapters we offer what is perhaps a basic framework or a matrix from which to develop effective and skilful interventions. It is our hope that if such a framework finds a resonance with other practitioners in dementia care, it will be subjected to consideration and debate, modification and development, in the tradition of most practice tools. It is not our intention that it should be perceived as a definitive model for dementia care; it simply represents our thinking on the matter to date.

We have in the preceding paragraphs posed a challenge to the adequacy of the existing basic paradigm of occupational therapy to accommodate a degenerative condition such as dementia. Such a challenge is not simply a call for a new model, but actually reverberates down through the very ethos of our professional existence. If we are going to propose something different, we need to return to roots. In the rest of this chapter we propose to look again at the nature of occupation and its relation to health, and we want particularly to address the issues of meaning and creativity in health. We conclude by suggesting an alternative focus for occupational therapy in dementia care.

OCCUPATION

Along with models and frames of reference, terminological definitions have generated much discussion over the years. For the purists, definitions of occupation and activity were recently agreed by the European Network of Occupational Therapy in Higher Education (2006; http://www.enothe.hva.nl/). Whilst we don’t have a problem with the accuracy of these definitions, we find them bland and not very helpful for our purposes. We have preferred to squeeze out some of the etymological richness of the words by looking at their roots.

We need first perhaps, to say something about the ubiquitous use of the word ‘activity’ as a term synonymous with occupation. The interchange of these terms may not occur amongst therapists, but it certainly does in dementia care settings generally, where people are unused to the concept of occupation. Mary Reilly (1962) was the first to point out that:

‘the major crisis in the proof of our hypothesis (that man, through the use of his hands as they are energised by mind and will, may influence the state of his own health) will … be … to know the difference between activity and occupation, and to act on the knowledge of this difference.’

A few minutes in the company of a good dictionary is sufficient to introduce us to that difference. The word activity very simply (and rather vaguely) means ‘a thing done’, and to act is ‘to do a thing’. The word occupation, however, is multifaceted, having a broad variation in shades of meaning. There are in fact some seven different core meanings, which can be summarised as follows:

▪ the seizing or taking possession of (by force) – as an army invading a land

▪ a holding – as a place or piece of land held by a tenant

▪ the taking or filling up (of time or space)

▪ that in which one is engaged (person, mind, attention)

▪ action in which one is engaged habitually

▪ the investment of money or capital in

▪ the dwelling or residing in.

We might suggest then, if we weave together these seven facets of meaning, that we have a composite which is of considerable utility for our purposes. Occupation is that which we seize for our own personal possession, and which, because it holds meaning and value for us, habitually and fully engages our time, attention and environment. This interpretation, stopping short as it does of any specification as to what ‘that’ might be, is of considerable import as a cornerstone of our discussion. The very non-specificity of the concept is, and has been, both the joy and the frustration, the freedom and the constraint, the goad and the halter of our professional progress. In one sense it is of course not the business of occupational therapy (or any other therapy) to dictate what ‘that’ is. ‘That’ is something inherently subjective; it is something that ultimately each person for himself must decide.

This subjectivity presents a two-fold challenge to the therapist. On the one hand it militates against prescriptive practice, demanding a fully person-centred and person-led approach to therapeutic intervention. On the other, it presents major difficulties to the profession’s framing of the service it has to offer. How can a profession set its parameters for practice, when the core problem (occupational dysfunction) is so infinitely diverse across humankind? This has been a major dilemma over at least four decades; a dilemma which led to an almost complete derailment of the profession during the 1970s, bringing not inconsiderable anguish to those of us engaged in the conflict. Times, and professional development have moved on since then, and we do now have a rich body of knowledge at the core of our theoretical structure. Nevertheless, judging by the continuing debate in the literature, we have still not yet achieved a full congruence and coherence of theory which satisfies the thoughtful practitioner. We are still, in Hagedorn’s (1995) terms ‘in search of the core’. It is not within the remit of this text (or the gift of the authors) to address this wider issue, but it may be that abler brains in the future will perceive our proposed view in the broader perspective of professional development. We hope so.

For the purposes of this text, we take as our main underpinning premise the definition of occupation suggested above, and we shall return to it from time to time in the course of the ensuing discussion.

OCCUPATION AND WELLNESS

In our context of dementia care, we need to look again at what we mean by health, and at its focus in our professional practice. Health is actually considerably more difficult to define than occupation. There can in fact be no universal declaration on the nature of health for the reason of its very subjectivity; that which is health to one person, is not to another. The World Health Organization, however, constrained by its constitution to attempt such, stated in 1947 that:

‘Health is a state of complete physical, mental and social wellbeing, and is not merely the absence of disease or infirmity.’

Occupational therapist Johnson (1986) has suggested something similar:

‘Integrity of body, mind, spirit and emotions that is available in the presence or absence of illness, disease or disability.’

Black’s Medical Dictionary describes health as:

‘… the highest state of mental and bodily vigour of which any given individual is capable.’

All these offerings refer to a state, a condition which by definition is absolute, a ‘position achieved’ as it were. However, the biologist Dubos (1980) is critical of such definitions, describing the concept of a state of perfect health as a mirage, ‘a utopian creation of the human mind’. He suggests that the concept cannot become a reality, because the often hostile and ever-changing nature of the human environment will always ensure that such a peak of adaptation is never achieved. Gordon (1958), a medical officer of health, is of a similar mind:

‘To maintain his equilibrium with his environment, man and his species are in perpetual struggle – with microbes, with incompatible mothers-in-law, with drunken car drivers, and with cosmic rays from Outer Space. How then in this context of movement and buffeting back and forth between organism and environment, can we find any place for the woolly-headed definitions of “positive health”, as a state that can and must be considered apart from disease?’

Wellness (a term coined only a few years ago), in contrast to health, seems to be something rather subtly different; a concept which has a rather more dynamic quality about it. Indeed Opatz (1985) has described wellness not as a state but as a process: ‘the process of adapting patterns of behaviour’. This notion is supported by Berry & Berry (1984), who suggest that wellness is a process of creating awareness, motivating, fostering attitudes and actions, towards the goal of functioning at optimum level. They employ a picturesque, if somewhat ungrammatical, metaphor in clarification:

‘Wellness could be described as a mountain riddled with deep gorges, giant boulders, and dense forests that must be climbed.’

This notion of an effortful striving in action, is a thread that is woven through the ideas of a number of commentators on health and disease, who reject the idea of homeostasis as synonymous with health. Indeed the message seems to be that tension (or the right amount of tension) is health.

‘The “positiveness” of health does not lie in the state, but in the struggle – the effort to reach a goal which in its perfection is unattainable.’ (Gordon 1958)

Webster’s dictionary defines tension as a (dynamic) balance between two opposing forces, a helpful concept for the purposes of this discussion. We might thereby see the person in wellness as being the person who is achieving a balance, that ‘balance’ actually being a striving in action: a process not a state.

‘… mental health is based on a certain degree of tension, the tension between what one has already achieved and what one still ought to accomplish, or the gap between what one is and what one ought to become … I consider it a dangerous misconception of mental hygiene to assume that what man needs is equilibrium or, as it is called in biology, “homeostasis” i.e. a tension-less state. What man actually needs is not a tensionless state but rather the striving and struggling for some goal worthy of him.’ (Frankl 1963)

Implicit in this idea of wellness as a striving in action are issues relating to personal responsibility for health and wellbeing: healing from within rather than from without. Illich (1975) has noted how the ‘epidemic of modern medicine’ has removed from the vast majority of humankind any real sense of personal responsibility for their own wellness, and has fostered a debilitating dependence and a misperception of drugs and surgery as the cure for all ills. Naisbitt (1982) has underscored this contention, affirming society’s increasing trend over the last decade or so, away from that dependence towards a position of at least a degree of personal responsibility. His discussion on ‘institutional help to self-help’ charts the self-help and group support mechanisms that have flourished increasingly in the western world in latter years. Capra (1982) too, maintains that health care of the future will mean people taking care of their own health individually and as a society.

Returning to Berry & Berry’s mountain image then, we might propose that wellness is not a passive ease, nor comfort, nor contentment, but rather a climb, an engaging with the obstacle, an exertion, a striving, an overcoming. There are places of rest, oases of calm, pinnacles from which the view is magnificent, but the journey is always onward and upward. There are guides and companions, but nobody to offer a piggy-back; the effort is the climber’s alone.

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