Kitwood, Tom,

1997,

Reviewed by Professor Alistair Burns,
Department of Old Age Psychiatry,
Wythenshawe Hospital, Manchester

Introduction & discussion

The field of dementia owes much to the late Tom Kitwood for drawing our attention to an alternative way of viewing dementia and its consequences. This is a unique contribution and, perhaps while not fitting in neatly to the evidence based zeitgeist represents a major contribution to the field of dementia. Any consideration of psycho-social aspects of dementia would be incomplete without reference to Tom Kitwood’s work of which this booklet is a very good example and encompasses much of his other work.

The general theme which Tom Kitwood develops is that there is a general view that dementia, because it is regarded as an organic (ie, physical) disease that an appreciation of its expression should stop there. Thus, everything should be seen as a consequence of the neurological brain damage that results from the insult to the brain which is the cause of the dementia. However, Tom Kitwood expresses the view that the neurological damage in itself is insufficient to give rise to the wide range of signs and symptoms, and most importantly, the subjective experiences, of someone suffering from a dementia and an alternative explanation, or at least an approach is needed.  He draws from his own experience on working with people who suffer from dementia and, intriguingly says that perhaps some of his views are based on the self interest of a fear of becoming old and senile, something which we all share. He describes the way in which people with dementia are treated and has referred to this as a “malignant social psychology”. Using the example of Rogerian psychotherapy, the term “person centred care” was developed to encompass the beliefs and philosophy of this new consideration of people suffering from dementia. One of the main innovations which comes from this work is a new method of evaluating the quality of care in formal settings – called Dementia Care Mapping. This is a training programme which has become very popular and is still run from the Bradford Dementia Group in England and which emphasises the need for an alternative view and understanding of caring for a person with dementia.

The general hypothesis which underpins much of what Tom Kitwood has written about dementia is quoted in the introduction “Contact with dementia or other forms of severe cognitive disability can – and indeed should – take us out of our customary patterns of over-busyness, hypercognitivism and extreme talkativity into a way of being in which emotion and feeling are given a much larger place. People who have dementia for whom the life of the emotions is often intense and without the ordinary forms of inhibition, may have something important to teach the rest of humankind. They are asking us, so to speak, to heal the rift in experience that western culture has engendered and inviting us to return to aspects of our being that are much older in evolutionary terms: more in tune with the body and its functions closer to the life of instinct. Most of us live too much – almost literally – from “the top of our heads” (the outer layers of the neo-cortex). There is psychological and hence neurological work for us to do with and for ourselves as we work towards a deeper integration and integrity.

This book itself, explores in nine chapters, a number of Tom Kitwood’s ideas. There is a brief summary of what is known about the nature of dementia and associated conditions, how dementia undermines a person, how that may be maintained and also the experience of dementia, how care can be improved and how organisations can be made to be more responsive to the needs of people with dementia, the requirements of a caregiver and finally the gargantuan task of cultural transformation. Tom Kitwood had already referred to this in his descriptions of how he felt when first espousing his views – he felt apprehensive (almost guilty) and felt that what he was saying was tantamount to heresy.

Critical appraisal

What Tom Kitwood has said and written about is absolutely correct and as a person who perhaps represents an approach which he found unpalatable, I do not say that lightly. The concept of personhood now be enshrined in the National Service Framework and his ideology and approach has a great deal to offer, and probably more importantly, the approach and understanding to people suffering from dementia has changed because of him. He talks about the misuse of drugs, the abuse of power and distortions of truth and many may feel that that is going a bit far. However, as with many other things, one has to stretch things to make a point and Tom Kitwood does that superbly. As a psychiatrist who has always been interested in those symptoms of dementia (described in the introduction as psychiatric symptoms and behavioural disturbances) I felt that I trod somewhat of a middle way between a person-centred approach and a strictly neurological approach that brain damage causes memory loss and other cognitive impairments and the psychiatric symptoms and behavioural disturbances are secondary to that.

One of the most poignant examples concerns a feature which occurs not uncommonly in people with dementia called agnosia which means that people do not recognise others around them, eg a wife may, over a few short months, fail to recognise her husband (one of the more distressing symptoms for caregivers). There is a firm neurological basis for agnosia based on what we know about how the brain works and in many ways this forms a bridge between what one might call a physical neurological sign of dementia and a psychiatric or psychological sign. What intrigues me is that some people who fail to recognise a spouse are quite content and are very happy to put up with the person whom they do not recognise while other react angrily against that person fearing their own safety and thinking they may be an imposter.

Another example is when a person with agnosia looks in a mirror and does not recognise themselves – some people stand chatting to themselves for hours on end quite happily while others will react angrily. This sign is usually apparent when one goes into a house and all the mirrors are turned against the wall for fear of a violent reaction from the person suffering from dementia. What makes people react at one extreme or the other? There has to be something more than the neurological damage and perhaps it is based in the person’s personality experience and the way they view the world, ie, there is a basic neurological area of damage but a whole system of experience, emotion and reactions which determine how that is expressed.

Social work practice/policy implications

I think that every social worker involved with the care of people with dementia would do well by reading the late Tom Kitwood’s work and this volume is as good as any. The implications are that dementia should not be seen purely from a medical model and that there are aspects of dementia which can be explained and certainly can be managed in a humanistic way. Whether one embraces the whole of the philosophy or simply cherry-picks those areas which will do best for one’s patients or clients (which may not be the same as cherry-picking the area with which one agrees anyway!), it probably does not matter.  It is an awareness of the whole approach which is important. From the point of view of policy, as mentioned above, person-centred care has made its way into the National Service Framework and therefore can be said to have influenced policy.