Care-Giving In Dementia

Volume 2

Gemma Jones, Bere Miesen

• Publisher: Routledge
• Year: 2021
• ISBN:
  9781317854326
• Edition: 1
• Topic: Psicología
• Subtopic: Historia y teoría en psicología

Care-giving in dementia is a new speciality with its own rapidly growing body of knowledge. This second volume of contributions from leading practitioners and researchers around the world is a handbook for all those involved in 'hands on' caring, or in planning care, for persons with dementia. Volume 2 of Care-Giving in Dementia provides a rich source of information on most recent thinking about individualized long-term care of both dementia sufferers and their families.
Key themes in Volume 2 are:
* the subjective experience of dementia
* the provision of care for family carers
* differing cultural perspectives of dementia
* the crucial importance of life-history information for understanding a person's reaction to their illness.
Chapters on the search for an ethical framework and the best environment within which to provide care are particularly timely.

Part I Models and theories

DOI: 10.4324/9781315830926-1

1 The concept of personhood and its relevance for a new culture of dementia care

DOI: 10.4324/9781315830926-2

Tom Kitwood

Before the term ‘care’ was annexed to the twin vocabularies of nursing and social work it belonged, essentially, to the field of ethics. In this context, to care for others means to value who they are; to honour what they do; to respect their unique qualities and needs; to help protect them from harm and danger; and – above all – to take thoughtful and committed action that will help to nourish their personal being. In such ideas there is a strong recognition of the interdependence of human life, the fact that no one can flourish in isolation; the well-being of each one is linked to the well-being of all. Moreover, the noun ‘carer’ did not exist. That was a later accretion, a kind of debasement.

There are no techniques for caring, in the original sense, for the highest that any person can give to another is on the ground of wholeness and spontaneity. Diagnosis, assessment, care planning, therapies, care interventions, and so on are, at best, mere aids or supports; at worst, they are ‘fixes’, mainly serving the function of evasion and buck-passing.

Behind the masks of confidence and competence, behind the proud ideology of individualism and self-determination, perhaps every human being yearns to be truly cared for and to care. The wisest parenting, the richest friendships, marriages, partnerships, seem to come close to this high ideal. Perhaps, as a highly social species, we are actually endowed with instinct-like tendencies to develop strong and affectionate social bonds. The work of Bowlby (1979) and others, drawing on insights from ethology and psychoanalysis, certainly suggests that this is the case. Even self-reliance, so highly valued in western societies, is based on relationships that are experienced as secure. If these assertions are true, it must also be said that whatever nature has given us is always completed, filled out with meaning, in a culture. Thus caring is facilitated in some cultural settings, and is marred and distorted in others. Paradoxically, then, we are faced with the task of creating environments in which caring feels natural, and so, eventually, bringing about a new culture of care.

Those who have dementia, we can say without a shadow of doubt, need to be cared for in the true and original sense. In fact, however, this need is very rarely met, either when they are being looked after by members of their family or in formal settings. The traditions that we have inherited from the past contain many false beliefs and inept practices: there is much to lay aside, and much learning to be done, in creating a new culture of care. Also we should take into account the possibility that we do not have instinct-like drives to help us when it comes to looking after those who are old and frail, whereas we do for looking after children. If motive is to be found, it may have to come primarily from a culture that embodies a very strong ethical ideal.

The concept of caring can be linked to another, that of personhood. Here too the fundamental matrix is ethical: it implies a standing or status that is accorded by others. Thus one can be a human being, and yet not be acknowledged as a person. We have all had experiences of this, to a greater or lesser degree: we have known occasions where we felt discounted, devalued, violated, used, abused. Fortunately, most of us have also had experiences of the opposite kind, where we felt that our personhood was acknowledged. Even if these have not been as frequent as we would have liked, we have a record of them in our emotional memory; we can draw on them in our attempt to recognize the personhood of others, and in our hope of developing into people who really know how to care.

TWO WAYS OF BEING AND RELATING

Perhaps the most profound account of personhood in this century is that given by Martin Buber (1923), in the small book originally translated into English as I and Thou (Buber, 1937). Here he makes a contrast between two ways of being in the world, two ways of forming a relationship. The first he terms I–It, and the second I–Thou. Relating to another in the I–It mode implies coolness, information-getting, objectivity, instrumentality. Here we engage without there being any commitment; we can maintain a distance, make ourselves safe. Relating in the I–Thou mode, however, requires involvement: a risking of ourselves, a moving out and a moving towards. ‘The primary word I–Thou can only be spoken with the whole being. The primary word I–It can never be spoken with the whole being’ (1937: 3).

It should be noted here that Buber is not telling us of the existence of two classes of object in the world: ‘Thous’ and Its’. He is describing two contrasting ways of relating. Thus, as we have already noted, it is possible for one human being to relate to another in the I–It mode, and, alas, this is all too common. Buber also suggests that it is possible to relate to a non-human being in an I–Thou mode: an old woman whose dog is her sole companion, perhaps, or a Japanese man who faithfully attends to his bonzai tree day by day.

Many languages make a clear distinction between ‘Thou’ and ‘You’.

‘Thou’, when sincerely used, is a form of intimate address, as if whatever is said or disclosed is for one person only. ‘You’ is more general, and far less personal. In the English language ‘Thou’ has virtually disappeared, its last vestiges being still found in a few dialects and in the language of certain religious groupings. The Quakers were very reluctant to relinquish their use of ‘Thou’, and for good reason. It is a curious irony that the best-known translation of Buber’s work into English bears the title I and You (Buber, 1970). Without ‘Thou’ the essence of his meaning is much harder to apprehend.

The connection between Buber’s ideas and the concept of personhood is self-evident. We misunderstand him if we think he is telling us that every individual needs a ‘Thou’ in order for his or her life to have meaning. He is saying, rather, that to be a person is to be addressed as Thou. In other words, the I–Thou mode of relating actually constitutes personhood. We can approach this idea from another angle by considering Buber’s famous dictum ‘All real living is meeting’ (1937: 11). What is the nature of this meeting? It is not that of one intellectual exchanging opinions with another; it is not that of a rescuer, doing something for a needy victim; it is not even that of two practitioners, co-operating on some task. The meeting of which Buber speaks is that of making contact with the pure being of another, with no distant purpose, explicit or ulterior. The words we might associate with such meeting are awareness, openness, presence (presentness) and grace. Grace is a gift not sought or bought, a benediction that simply happens because one is in the right place at the right time.

This brings us to the way Buber speaks of freedom. ‘So long as the heaven of Thou is spread out over me, the winds of causality cower at my heels, and the whirlpool of fate stays its course’ (1937: 9). Here he points poetically to one of the most rich and mysterious of all human experiences. When we are addressed as Thou – when all instrumentality and manipulation are removed – we experience a profound expansiveness and liberation. Here – perhaps here alone – we can grow beyond attitudes, habits, scripts, poisonous expectations – all that others have imposed upon us in their zeal for utility. In contrast to this, to live exclusively in the I–It mode, whether as giver or receiver, is to be perpetually at the point of death.

It should be noted that Buber is not offering a psychology, in the ordinary sense. There is no way of demonstrating empirically, through experiment or observation, the truth or falsehood of his basic assertions; attempts to do so would involve a trivialisation so gross that it would be a travesty. Buber’s work might be taken, rather, as a prelude to a psychology, or perhaps as an underpinning; it should be viewed as metaphysical. The point is this: before any empirical science or any form of systematic inquiry can get under way, some assumptions have to be made. If they are made openly and with awareness, they may or may not turn out to be valuable, but at least they are open to criticism. If the task of examining assumptions is avoided (as has so often happened in psychology), there is the risk of building an edifice on weak or inept foundations. Sartre (1939), in his account of the emotions, suggested that much of psychology is doomed to failure because it seeks to achieve a definitive understanding of human nature as ‘the crowning concept of a completed science’. The truth is that the given world will not order the facts for us. We cannot avoid making choices about how to view human nature, how to bring structure into the domain. If we avoid these issues, we may simply end up by making bad choices. Psychology must begin, then, with a clear commitment to a view about what it is to be human.

So, Buber is offering us some basic assumptions about our humanity. We cannot prove or disprove them; we can only give our assent or dissent, according to whether they seem coherent and whether they accord with our experience. Here, at any rate, is a clear conceptualization of personhood, a possible basis for a psychology of caring. And there is a very sobering fact to take into account, in relation to those who have dementia. It is that the most thorough assessment can be carried out, the most efficient ‘care planning’ undertaken, the most comprehensive service provided – totally in the I–It mode, without any of the meeting of which Buber speaks ever having taken place.

THE I–IT MODE

If Buber’s ideas, formulated some seventy years ago, still strike us as revelatory, it is surely because the I–It mode of relating is so common that it is often taken as ‘normal’, and the I–Thou mode has been exiled to the margins. Psychiatry as it has developed during the twentieth century, principally under the influence of medical science, scarcely knows the meaning of Thou. The person who is suffering from mental distress comes under the objectifying gaze of a powerful professional, there to become an instance of a disease category. It is not uncommon for someone placed in this situation to feel the last remains of hope and self-esteem ebbing away to nothing. A person may indeed go through a full course of psychiatric intervention without ever feeling heard, acknowledged, understood, comforted; he or she is simply given a diagnostic label and passed on for a ‘treatment’ that is of a predominantly technical kind. There are, of course, many individual examples that go against the norm. It is encouraging to know that there is an informal affiliation of doctors who are committed to the ‘medicine of the person’, as originally set out by the Swiss psychiatrist Paul Tournier (1957).

Psychology, too, as it has self-consciously developed into a ‘science’, has virtually no place for the I–Thou mode of relating. For some psychologists in training, who had hoped to develop a profound understanding of persons, this can be a cause of great disappointment. In the main frameworks of observational and experimental work the human being is a ‘subject’ (read – ‘subjected to a set of rules in whose making he or she had no part’). It is relatively rare that we find mainstream psychology really making an attempt to understand persons on their own ground, and it is virtually unknown for it to have any serious concern with meeting, in Buber’s sense. The great exception, of course, is psychotherapy, at least in some of its more homely forms (for example Hobson, 1985; Lomas, 1992). In therapeutic work, despite many failures and abuses, there is a serious commitment to meeting. It is disturbing to note, however, that orthodox psychology tends to exclude and dismiss psychotherapy as hopelessly unscientific and ‘subjective’ (for example Eysenck, 1985). In other words, orthodox psychology does not have a sufficient commitment to the I–It mode.

The patterns of so-called caregiving that we have inherited from the past are contaminated in a very similar way. It is a strange and tragic paradox that so much ‘care’ has been practised without real meeting; and even today, in a relatively enlightened age, it features only to a minute extent on any offic...

Table of contents

• Cover Page
• Half-Title Page
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• List of figures
• List of tables
• List of contributors
• Editors’ note
• Introduction
• Part I Models and theories
• Part II Interventions in care facilities
• Part III Interventions in the community
• Part IV Interventions for the family
• Part V Environment, education and ethics
• Subject Index
• Name Index