Chapter 6. Principles of good practice in dementia care

CHAPTER CONTENTS

Process or product?85

Cognitive or sensory?88

Relaxation or arousal?90

Order and disorder?92

Familiarity or novelty?93

As we start to make the all-important move from theory to practice, there are some additional principles that need addressing – principles of good practice which we need to consider as we commence our treatment plan.

PROCESS OR PRODUCT?

The process of engaging in an occupation is more important than its product

Centuries ago, the philosopher Aristotle (Ostwald 1962) had some wise words to say about activity in the human species. He probably didn’t have twentieth century occupational therapists in mind as he wrote them, but they are nevertheless pertinent, and worthy of consideration. Aristotle’s view of human activity is that it is essentially of two kinds, which he calls kinesis and energeia. He reckoned that kinesis refers to activities which are goal directed, and gave examples of walking, home-building, weaving, learning. He described kinetic activities as incomplete or imperfect in themselves, insofar as they are only ‘completed’ when the goal is attained – whether that be a destination, a new house or a length of cloth. Energeia, on the other hand, refers to activities which do not have an end distinct from themselves; the end is inherent in the activity itself. In other words, the activity is done for its own sake. He suggested that energeic activities might include seeing, knowing, living well, and in their ‘completeness’ are considered ‘perfect’, superior to kinesis.

Subsumed within this concept of kinesis and energeia is a further differentiation between making and doing. Making is a goal-directed activity in which an agent works upon a malleable entity in order to bring some product into being; it is always a kinetic process. Doing is always energeic (for its own sake), though energeia is in itself a much richer concept, tending towards a sense of actualising latent potential.

We, of course, may not wish to get into an argument about which type of activity is more ‘perfect’ than the other, but nevertheless the two-fold concept is helpful, and there is an important principle here. For goal-directed activity, the purpose is the end-in-view; the doing of the activity is purposeful only insofar as it works towards achieving its end. It is thus, in a sense, an occupation of the future: ‘At such and such a time, I shall achieve such and such a goal’. And being an occupation of future time, it is therefore dependent upon a certain cognitive capacity for satisfactory completion; for example, one must be able to remember what has gone before, apply the appropriate sequence of tasks, hold the goal in view, plan whether to take this route or that, recognise the required conclusion. A fragmented cognition brings about a fragmented ‘doing’, and can render the goal unachievable; if an integral task or step in that sequence of ‘doing’ cannot be hooked via memory on to the previous step, or via reason and planning on to the next, it becomes divorced from purpose and has only a life of its own, which may or may not have meaning for that person. An example might illuminate.

Kneading dough is an essential stage in the bread-making process. It is linked to a preparatory stage of mixing yeast with flour, and a succeeding phase of setting the dough in a warm place to rise. Now it may be that a person in early dementia still has an active recall, and a faculty for forward planning. But the more impaired person may well struggle to link any one of those steps with another. After all, a bowl of flour with some putty-coloured liquid in it just looks like a porridgy sludgy mess. There is nothing about it which says ‘I am the forerunner of a beautiful, scented, wholemeal loaf – knead me’. Neither is there anything about a solid lump of cold puddingy dough that offers any indication of the risen, round-topped crusty-baked thing it will become. So why should we expect the person to invest any particular meaning or goal in kneading this dough? Such a person is increasingly living ‘of the moment’, unhooked from what has gone before and unrelated to what will come after. Therefore, surely it is only the experience of that kneading process right now that is important. Only if this activity has a clear impact upon the wellbeing of the person, is it of value as occupational therapy.

We suggested, in Chapter 3, a view that dementia is a journey from a world of doing to a world of being, and recognised the validity of Ignatieff’s proposition that for the person in late dementia there is only now, this instant, the way the ice cream tastes when it is on your tongue.

This, we feel, is the key to the superiority of process over product in dementia care. Process is now, of the present moment; product is some time, of the future. Therefore, process is what is of particular importance to the person with dementia; product might ultimately hold some meaning for a person, but the therapeutic stance should not demand it. If Arthur is pummelling dough with every sign of pleasure and satisfaction, the outcome is immaterial. It is unlikely that he will associate the arrival of a fresh baked loaf two hours later as anything to do with himself anyway.

None of this is intended in any way to diminish the place of goal-directed activity in the therapeutic programmme. Rather, it is to set it in its appropriate context. We will see in Chapter 8 that such activity is the common currency of the unimpaired person, and it may therefore be used entirely appropriately in the earlier stages of dementia. But we need to bear in mind that the capacity of most of our clients for ‘doing’ is diminishing, and we need to assist them to accommodate this change in a gradual relinquishing of end-products and goals, and an embracing of the ‘here and now’ experience.

The product of the Tea Group described in Box 6.1, was unimportant; in fact it turned into a rather sticky and messy affair, but that did not matter to Dermott, and it did not matter to me either. It was the process of connecting, or engaging in the context of a shared activity that was important for both of us. We ate together, laughed together, had fun together, but most important of all, Dermott held the power. We believe that Dermott’s sustained and committed engagement with this activity was a clear indication that right now, for him, this was a rewarding, meaningful, and hence therapeutic experience.

Box 6.1

Dermott is a fit, agile man, still very young compared with most of the people who come into the ward for day care sessions. Dermott is actually very damaged, far more so than he looks; this is in part because of his youthfulness and physical fitness, and also because he is very funny, well able to crack jokes and cover things up quickly and easily. But in fact, Dermott cannot unwrap a sweet and put it into his mouth. He gets confused about which is the wrapper and which is the sweet; he has a real problem differentiating between objects generally. He is unable to recognise objects for their purpose, and he cannot therefore do even very simple daily living tasks. I invited him to the Tea Group today, knowing that someone would have to support him and compensate for his difficulty, so that he could remain an integral part of the group. I sat next to him, and offered him the bread which he wanted. He was not able to butter his bread, to lift the knife and put the knife in the butter to spread on his bread, or to put jam on the bread. But once I had spooned some jam on to the bread he was able to spread some of it, although the next thing he did was to dip his knife into the tea and try to spread that on! But we got through. We found our way into a sort of routine, so that at each stage of the sequence I would ask whether he wanted to do it, or whether he wanted me to do it, and we got into a banter and a joke about it so that, although he clearly wanted me to do it, he nevertheless remained very much in control, and led the way through the activity. This was precisely what we had wanted to achieve by this group session. Dermott does not normally sit down for longer than 30 seconds; even in the exercise group he often prefers to stand or to wander around. Certainly that is what he does in the absence of anything concrete to focus upon. But today he sat and stayed for the whole group session, which lasted on this occasion for approximately 40 minutes.

COGNITIVE OR SENSORY?

Cognitive approaches should be used with caution in dementia care

Many of the activities that we use in dementia care have a strong cognitive component: for example, reality orientation, the quiz, the discussion, following a recipe, a game of cards, etc. To be able satisfactorily to engage with such an activity requires a certain cognitive capacity. One must remember what has gone before, plan what is to come, understand the ultimate goal, appreciate the relevance of the rules, communicate with other parties, and so on. An impairment in any of these faculties can disrupt successful engagement with the activity, and can render a person unable to some degree to carry out the activity as they once would.

Diminished performance in our client may or may not trouble us unduly (we are all well used to impairment and disability), but how sure are we that it is not troubling that person? We believe that people with dementia retain at least some measure of insight into their degenerating condition, if not throughout, at least until the latter stages of decline, and if diminished wellbeing results then this cannot be called therapy. We also believe that many of the challenging behaviours that we meet in dementia care are but the product of that insight – the rage, frustration and anguish of knowing that you can’t be and do as you once could. Therefore, to inflict upon somebody an activity which he can no longer carry out with the same finesse that he once could is tantamount to setting him up for failure, and has the potential for being damaging in the extreme. It might not, but it might – and that is always our dilemma.

Have you ever played Trivial Pursuit? Great fun if you have a wide-ranging general knowledge and can shine; not so much fun if you haven’t. If you haven’t, you can often get away with playing in groups and hiding in the context of a team. But if you are playing for yourself, everything that you know (and don’t know) is exposed for all to see. Knowledge of one’s own deficit can be stressful, and induce shame and withdrawal; and that goes as much for the unimpaired person as for the person with dementia. If we can feel bad in a trivial game of Trivial Pursuit, how much more might our dementing client?

However, one might argue from the ‘use it or lose it’ point of view. We had a letter a while ago from a gentleman who found himself as the main carer of a friend with dementia. Out of concern to maintain her at as high a level of functioning as possible, he was writing to ask if his approach to her ‘therapy’ was a profitable one. This gentleman was a retired academic, and was bringing something of this background to the therapeutic programme that he had set up for her. The programme was a series of mental exercises that comprised numbering sequences backwards and forwards, simple sums, word sequences and word games. He felt that to take her regularly and frequently through these exercises might help to maintain cognitive function. He was in fact operating from a point of view that perceives the brain as a muscle requiring exercise. There is indeed some evidence that disuse or understimulation of cognitive faculties leads to further impairment (Diamond, 1976 and Diamond, 1978), but the ‘muscle and exercise’ analogy is rather a suspect one and should be treated with caution. For every piece of research that promotes cognitive challenge as a means to improving function and wellbeing (Greene et al., 1983, Greene et al., 1979 and Hanley et al., 1981), there is another advocating reduced stimulus (Cleary et al., 1988 and Hall, 1994); this latter proposition is supported in fact by the reaction of Elsa in Box 6.2.

Box 6.2

Elsa, the lady referred to in Box 4.1, had very little language left, just a few odd stereotyped phrases. Mostly she just sat quietly in her chair, unresponsive to events in the environment around her; but she did have an habitual ‘My daddy oooh’, said and sung in long periods of repetitive vacuum. She would often though, engage readily in conversation (much of which was of the non-verbal kind) when staff had time for her. On one occasion, when she was looking rather down and depressed, a very chatty member of staff went to sit with her and attempted to engage her in conversation. She talked of this and that, inconsequential things, and wasn’t bothered by Elsa’s lack of response. But Elsa was starting to look panicky; it looked as though she was desperately trying to stay in touch with this stream of chatter, while actually being radically outpaced. Suddenly she lifted her head and uttered a loud, sustained trilling noise, which stopped all members of staff on the unit dead in their tracks. Everyone was very used to ‘My daddy oooh’, and largely ignored it, but nobody had ever heard this before. We are unlikely ever to know what was at the root of it, but it is hard to understand it as anything other than a response to extreme overstimulation.

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