The dementia therapist: a good enough mother?


Part 1 and 2

assist-460x288-picsayI love this article. I love the way it makes me feel. The foundation of ‘Good Enough Mother’ is the basics of life.

We’ve known for years, given certain circumstances, many people will digress with age. Our life ends as it began.

Instead of trying to change and force a person to behave according to… WHAT?!!!, let them feel safe and loved.

The wide spread application of this concept is possible and just brilliant.

When idealism and realism spend some quality time together, anything is possible.

Jane

Wellbeing in Dementia, 2nd Edition — An Occupational Approach for Therapists and Carers – Chapter 10, pgs. 153 – 160

Authors: Tessa Perrin PhD, MSc & Hazel May MA & Elizabeth Anderson MA, MSc — The authors, specialists in the UK, draw on developmental theory to propose a model of practice specifically for dementia care. The number of people who suffer from dementia is increasing and in consequence the problems it presents are affecting a growing number of therapists and carers. Many of these problems are peculiar to dementia and the models of care used with other client groups have proved inadequate when dealing with the provision of quality of care to people who have dementia. The book looks at the relationship between occupation, wellbeing and dementia and examines the critical role of the carer in developing therapeutic interventions.

 


Part 1 – Good Enough Mother?

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It is perhaps something of an anomaly in today’s world of remedial health care professions, that we do not hear the term dementia therapist. We have physiotherapists and occupational therapists and speech therapists and hearing therapists and psychotherapists and movement therapists. It sometimes seems as though there is a therapist for every impairment known to man. But we don’t have dementia therapists. Why should this be?

We have wondered if the reason for this is actually a hangover from ‘old culture’ attitudes, and old-world emphases on the word and the concept of ‘care’. Nowhere is the term ‘care’ more overworked than in the field of older people and people with dementia. The terms dementia care and dementia carer are common currency, as are elderly care, home care, respite care, day care, carers’ support, etc., etc. And there is of course nothing inherently wrong in the use of these terms. It is not until we understand the term in contrast to the term ‘therapy’ that a question mark appears. For we don’t have elderly therapy or home therapy or day therapy; neither do we have occupational care or speech care or psychocare. Why not? Well, it all seems to hinge on a concept of potential for change. Generally speaking carers care, with no anticipation of response or change on the part of the one cared for. Care is, effectively, one-sided – a ‘doing-to’. Therapists care, on the other hand, with every expectation of change in the one cared for. Therapy is reciprocal – a ‘working-with’. Care ministers, and expects nothing of the cared-for. Therapy demands, and expects much of the cared-for. Therapy does not accept the status quo. Therapists work with a person towards change, improvement, growth, adaptation – and herein lies the difference.

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Traditionally, the common view of infirmity in old age, and of dementia particularly, has been nihilistic and hopeless. It’s the end of the road, the inexorable descent, the inevitable deterioration and demise. This was the old culture of understanding around late life and disorders of late life. Change, growth and adaptation were not expected; all that was required as infirmity took over was a ‘doing-to’, until the end. This of course is no longer a universally held view; the new culture of understanding has served to issue a major challenge to such a stagnant negativism, and it would probably be true to say that the prevailing view today is hopeful rather than hopeless, positive rather than negative, constructive rather than static.

Building then on this comparatively recent cultural shift, we would want to add a further challenge: that we actively embrace the terms ‘dementia therapy’ and ‘dementia therapist’, and if not the terms, at least the concepts. For there is a movement, a reciprocity, a dynamic about therapy that is lacking in care, and as the culture continues to evolve, it is movement and change which are going to take us forward.

What would be the role of a dementia therapist, and who would take such a title? Well, it is conceivable that anyone who has a sustained and direct involvement with a person with dementia could take such a title. We ourselves could probably legitimately take the title, for all of our work revolves around people with dementia. But then we would perhaps lose something of our specialism (or there would be a perceived loss from outside the field), for we are first and foremost occupational therapists; occu- pation is our contribution and complements that of other disciplines. The RMN or the social worker who manages a residential establishment would probably also want to retain their own distinctive title and specialism.

We have wondered if maybe this is a role and a title for those whom we currently most commonly call care assistants. Now we know of course that of the many thousands of people who hold that title across the country, a good proportion do just that – assist with care. But we know, too, that there is also a good proportion who do considerably more than just assist with care. We all know those who genuinely love and give of themselves in the service of those for whom they have responsibility – people who make mistakes to be sure (don’t we all?), but people who thirst for knowledge, who avail themselves of every possible opportunity for training, and who turn a job into a vocation. And most of us in the professions feel distinctly embarrassed that this army of skilled and devoted people should not attract a title, status and salary commensurate with their abilities and the quality of their service. We believe that this undervalued and under- paid group are worthy of recognition, and have wondered if a new role of dementia therapist might redress the balance.

What shape would such a role take, and what skills would it require? In order to explore this a little further, we return to the work of Donald Winnicott – this time to his concept of the ‘good-enough mother’ (1968). This is a model for childhood wellbeing certainly, but one that has a distinct application to dementia care also.

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We have discussed in Chapter 4 the notion of mothering as an important concept for dementia, particularly late stage dementia, and we want to expand upon that a little. We need first perhaps to reiterate that we use the terms ‘mothering’ and ‘good-enough mother’ to imply a style of approach rather than gender. As far as we are concerned, gender is not at issue here, though one might argue as to why we are therefore using a gender-laden term. The simple answer is because we find it helpful and challenging, and the one that best illuminates the potential of the dementia therapist role. There are those (Schaffer 1977) who believe that mother may be a person of either sex, that attachment, bonding and satisfactory child-rearing may be accomplished by any unrelated adult taking over a parental role, and is a matter of personality, not of biology. To some degree we go along with that; certainly empirical evidence seems to bear this out (Anderson et al 1981, Phillips et al 1987). Nevertheless we also incline to the Winnicottian view of mixed male and female elements in either sex, and different qualities to the male and female elements: pure female elements relating to ‘being’ and pure male elements relating to ‘doing’ – a view later supported by Lamb (1981). Our position (before we go on to define mothering a little more carefully) is that both men and women are capable of mothering, but that because of a weighting of female elements in women, those who are most likely to mother, and to mother well, will be women. The far greater proportion of female staff to male in most care settings would appear to support this idea.

So what do we mean by good-enough mothering? Phillips’ commentary on Winnicott (1988) puts it into a nutshell for us. The task of the good-enough mother is to present the world to the infant in manageable doses. And the task of those who are in a position of helping mothers and infants is to protect this process. Let us look at those two statements separately, and in the light of dementia.

A good-enough mother presents the world to the infant in manageable doses. Winnicott’s perception of the neonatal infant is that he is unable to perceive himself in any way distinct from his mother; he is merged with, one and the same. He is in a state of absolute dependence, with no means of control, and no way of knowing the quality of care he is receiving except insofar as he gains profit or suffers disturbance from it. He is, in this phase, in a condition of unintegration, or unconnected feeling states. Mother’s task here is a holding task: that is, a repetitive handling, keeping warm, bathing, rocking, nursing, naming, which has the effect over time of gathering together all those disparate feelings and impressions into a unified whole.

Only in holding is there safety and security.

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‘It is especially at the start that mothers are vitally important, and indeed it is a mother’s job to protect her infant from complications that cannot yet be understood by the infant, and to go on steadily providing the simplified bit of the world which the infant, through her, comes to know… Only on a basis of monotony can a mother profitably add richness.’ (Winnicott 1945)

If the holding has been adequate and consistent, in due course the child begins to separate the ‘not-me’ from the ‘me’, and gradually to relinquish mother enroute towards independence. But he still needs mother to have charge over the presentation of the small doses:

‘sharing a specialized bit of the world … keeping that bit small enough so that the child is not muddled, yet enlarging it so that the growing capacity of the child to enjoy the world is catered for’.

A good-enough mother is not a perfect mother – just an ordinary person doing ordinary things. Provided that she herself has had good mothering, and is not an emotionally damaged person, what she has and how she behaves towards her child, is deeply instinctual, and not to be learned from books. That’s it really – in simplified terms.

‘…the whole procedure of infant care has as its main characteristic a steady presentation of the world to the infant. This is something that cannot be done by thought, nor can it be managed mechanically. It can only be done by continuous management by a human being who is consistently herself. There is no question of perfection here. Perfection belongs to machines: what the infant needs is just what he usually gets, the care and attention of someone who is going on being herself. This of course applies to fathers too.’ (Winnicott 1963)

We believe that this, too, should be the whole procedure of dementia care: a steady presentation of the world to the person who has dementia; small manageable doses – small enough not to muddle, large enough to satisfy and be enjoyed; protection from complication; holding, handling, sharing. This is the fundamental role of the good-enough mother, or perhaps we should say the good-enough dementia therapist, who is not perfect, not special, just an ordinary person, doing what, on the whole, comes naturally and intuitively.


Part 2 – Good Enough Mother?

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And what about our second proposition regarding good-enough mothering-that the task of those who help mothers and their children is to protect the process of presenting the world in manageable doses?

‘If it be true, or even possible that the mental health of every individual is founded by the mother in her living experience with her infant, doctors and nurses can make it their first duty not to interfere. Instead of trying to teach mothers how to do what in fact cannot be taught, pediatricians must come sooner or later to recognize a good mother when they see one and then make sure that she gets full opportunity to grow into her job.’ (Winnicott 1948)

What about those of us who oversee the appointment and the work of those we could call dementia therapists? Maybe this is our task too: to recognise those in whom the ability to hold and to handle in appropriate ways comes naturally, and when they are recognised, to ensure that they get full opportunity to grow into their job. Love and empathy cannot be taught. If they are not there, there is no book nor teaching method that will instil them; these are the basic prerequisites for any would-be dementia therapist. But if they are there, we can provide the growing medium which will shape and mould to the flowering of full potential.

That ‘growing medium’ will of course embrace guidance and tuition in some measure, but we are not asking our good-enough dementia therapist to go away and train for three years, nor to pass exams in health and social care, nor even necessarily to become vastly knowledgeable about dementia. We are asking that he or she will be a person committed to growing; in other words, we are asking that in addition to an inherent love and empathy, there will be an openness and ability to think and to reflect upon actions and experiences, and a willingness and ability to adapt accordingly. Strictly speaking, it is not possible to ‘teach’ any given individual how to present the world in manageable doses to any other; this is a knowledge and a skill which is in part instinctive and intuitive, and in part environmentally shaped. It is not possible to set standard guidelines for mothering; for every infant and every mother is unique, and there-fore every relationship and interaction between the two will be unique.

Elderly handicapped woman sitting in a wheelchair

Nevertheless for those of us who are trainers and/or supervisors, an integral part of our commitment to those for whom we have responsibility, is to provide a model of good practice, to give permission to use the model, and to ensure that the model is understood.

So for example, most mothers know intuitively that a four-month-old should not be expected to use a knife and fork. Similarly, most people who work with late dementia also know intuitively that the person who has returned to an early developmental level should not be expected to use a knife and fork. But their instinctive response (to encourage that person to eat with their fingers) is often overridden by deeply inculcated ‘old cul- ture’ messages about age-appropriateness, and the dignity of cleanliness and orderliness (see ‘Helen’ in Chapter 9). And so despite all that their ‘gut response’ tells them, they impart these ingrained attitudes and insist on the use of knife and fork, regardless of the impact upon the person with dementia. Our responsibility as trainers is to set our staff free from such constraints, and in order for this to take place some kind of formal training is without doubt necessary. It may be in the classroom, it may be in the workplace, it may be delivered as a lecture, it may be an informal giving of permission (‘It’s quite alright for Joan to use her fingers. Look, she is far less stressed when we let her do her own thing’). How this knowledge is imparted is immaterial; that it is imparted is crucial. For these are the parameters within which staff can work in comfort and in confidence, and which permit full expression of intuition and individuality. The setting of those parameters is our responsibility.

We would like to see the creation of a new role or new post of dementia therapist in residential and day care settings. This would not be for the person for whom this work is just a money-earner, nor for those who are simply content to ‘do to’ according to standardised policies and procedures. People such as these may justifiably retain the title of care assistant. But for those individuals who understand therapy as opposed to care, who have a commitment to ‘working with’, to ‘making better’, to a dynamic style of interaction and intervention which seeks change and growth, we believe that such a role would represent a re-evaluation and a revaluation of skills and expertise. We would see the creation of such a role as instigating a significant and much needed cultural shift in the dementia world. We recognise of course that this does rather go against the grain. Health care society has come to expect that anyone calling themselves a therapist will have done several years training and have at least a diploma, if not a degree. But we all know that degrees are no assurance of interpersonal skills. We have all come across the occasional therapist of one discipline or another who has a higher degree and not the first idea of how to engage with people. And yet this person commands a status and a salary that a care assistant at Dunroamin Nursing Home can only dream about. There is something very wrong here. We believe that a new role of dementia therapist for appropriately qualified people (qualified by personal calibre not by degree), attracting responsibility and enhanced financial reward, will make a significant difference to the quality of dementia services currently offered.

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The situation that we have currently in our care homes and day centres across the country, is a barely perceptible but nevertheless inexorable leaching out of high calibre people into other jobs, professional training or management positions – not because they do not care for the work, but because they cannot command a living wage, achieve due status or acquire responsibility in any other way. The sad reality is that very many of those currently holding the position of care assistant have come to the work from school, from ‘non-people’ jobs, or from raising a family, patiently serve a long apprenticeship in which they develop an extensive range of skills and exper- tise, become dissatisfied and devalued by a wage and a status that bears no resemblance to their qualities and their commitment, and leave – usually at the peak of their influence and efficiency. And the dementia world continues to muddle along in a state of perpetual impoverishment. Only as we learn to value and reward the expertise of our personnel in tangible and substantial ways, as some other sectors of society do, are we going to see improvement in our dementia services of any real substance and significance.

So it may be that what we have proposed resonates with others in the field and a new role comes into being. But whether it does or it doesn’t, there is a sense in which all of us who work with people with dementia are dementia therapists (or should be). For the task for us all, no matter of what discipline, is that indicated above – presenting the world to our client in manageable doses. That’s what it’s all about really, when it’s boiled down to its lowest common denominator. It sounds so simple, but of course it isn’t. It is highly skilled, very specialised work in which therapeutic success or failure hinge entirely upon the qualities and abilities of the therapist. So as we start to draw this text to a close, it is probably worth recapping and reaffirming those therapeutic attributes which are needed to carry out such a task.
A good-enough dementia therapist needs:

■ to retain an openness about the nature and causes of dementia itself, and to recognise a distinct psychosocial element to its cause, course and manifestation
■ to understand the occupational nature of people, and occupation itself
as a prime target of therapeutic intervention
■ to appreciate the importance of wellbeing over function as the focus
for intervention
■ to recognise the decline of dementia as broadly analogous to childhood developmental processes in reverse, and thereby to understand that the person in later dementia inhabits a world which is very different to that which we inhabit
■ to understand the critical importance of the therapeutic relationship to
therapeutic efficacy, and to the wellbeing of the person with dementia   ■ to appreciate the significance of playfulness in the therapeutic
relationship, and to develop a playful approach
■ to bring an individualised, multifaceted, non-prescriptive approach to assessment and intervention
■ to recognise the changes in thinking and doing that take place within a person’s experience over the course of their dementia, and to be able to adapt occupational interventions accordingly
■ to make a commitment to learning the language of dementia
■ to develop such a knowledge of each individual’s world, and the changing picture of that world over time, that the apportioning of ‘manageable bits’ of the world as we know it, is executed judiciously and proficiently.

This is good enough. More than good enough in fact. The person who is able to fulfil these criteria, or at least to grow towards these criteria, is the person who will take forward the quality of service provision for people with dementia into a new era. Those of us in the field in positions of management, staff supervision and education have two prime tasks. First, we need to seek and employ people having those fundamental ‘building block’ qualities of love, compassion and empathy, and, where possible, to let go those who haven’t. The second task is then to provide that growing medium which will enable them to realise their full potential. Conventional training methods are but one constituent of that growing medium. The greater and most effective part is actually a ‘showing by doing’ – an apprenticeship model. Mothers mother, by and large, in the way that they themselves were mothered; they learned by example, good or bad. It is not so very different for carers and therapists. If our staff are not yet good enough therapists, if they are not yet fulfilling the criteria set out above, then maybe it is a salutary exercise to look at our own practice.

Are we good enough? Are we proficient in therapeutic endeavour? Those we teach, whether by didactic method or by hands-on demonstration, will reflect what we are.

This is perhaps a salutary consideration, for those we now teach may well be mothering us in the not too distant future; we may be finding ourselves at the sharp end of their care or therapeutic intervention. We are of an age where we cannot deny the imminence or the reality of our own ageing, or the potential of a dementing process within our own personal experience. It might not happen; but it might, and it would be folly not to give the possibility some consideration.

Who will care for us, and what will be the quality of what they have to offer? The future is ours – it is an awesome responsibility.

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References

Anderson C, Nagle R, Robert W, Smith J, o9 1981 66 Attachment to substitute caregivers as a function of center quality and caregiver involvement. Child Development 52:53–612

Lamb M, 1981 The development of father–infant relationships. In: Lamb M(ed), The role of the father in child development. Wiley, New York

Phillips A, 1988 Winnicott. Fontana, London

Phillips D, McCartney K, Scarr S, 1987 Child care quality and children’s social development. Developmental Psychology 23:537–543

Schaffer R, 1977 Mothering. Fontana, Glasgow

Winnicott D, 1945 Primitive emotional development. In: Winnicott D, 1958 Collected papers: through pediatrics to psychoanalysis. Tavistock, London

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