Feature Article

Don?t tuck me in

As people live longer, dementia is becoming common. Those afflicted seem not to be the persons they once were. Effective care depends on not accepting this

TO BE hit by your husband after 40 happy years of marriage is terrible. It is the sort of thing that leads a wife to say, ?He?s not the man I married?. Similarly, the woman who stares blankly while being hoisted on to the toilet might seem to bear little resemblance to the loving wife or competent mother of former years. This is the cruel reality of dementia: it robs us of those we have known and loved. The gradual loss of personal skills, both intellectual and practical, leads many to the conclusion that at some stage of dementia the person might be lost altogether. We are left, some might say, with a mere shell, something having little more dignity than a sick animal.

Philosophers and others have argued both that the person with dementia is a different person from his or her former self and that dementia leads to a total loss of personhood. Given the profound effects of dementia, it is understandable that carers might feel they have ? in a deep and irretrievable way ? lost the person they once loved, looked up to, or even feared. Furthermore, it is easy to agree that the person with severe dementia has no quality of life. But the suggestion that severe dementia robs the individual of personhood has important repercussions. For one thing, it lays down a plank in support of the argument in favour of euthanasia. However understandable our dismay in the face of the ravages of dementia, should we accept that loss of personhood is an inescapable consequence?

Dementia is a disease that affects the brain. There are various forms of dementia, the most common being Alzheimer?s disease. Another common form, vascular dementia, can follow large or small strokes, but there are numerous other causes. The exact features vary, depending on the type, but dementia typically involves loss of mental functions (such as memory, concentration, computation and language skills), along with changes of personality and behaviour, and the appearance (in some) of symptoms such as hallucinations and depression. These diseases tend to occur in old age, but might occur in younger people, and the rate of progression varies, although they are all progressive. Despite the grim pathology, however, there are reasons for denying that the person is utterly lost.

Steven Sabat is professor of psychology at the Jesuit-run University of Georgetown, Washington. On a recent lecture tour to some of the major centres of dementia studies in Britain, he spoke at a meeting organised by the justice and peace group at Minsteracres, the Passionist retreat centre tucked away just into Northumberland. No one who heard him, I believe, was other than impressed by Sabat?s performance, which was as amusing as it was moving.

One thing I have learned about attending talks given by Sabat is that it is wise to have your shirt tucked in, for otherwise he is liable to do it for you in front of the whole audience. Depending on your disposition, you might find this embarrassing, humiliating, alarming, amusing, annoying, bemusing, affronting ? or all of these things. But this is his point: if we have these reactions, why should we presume it would be any different for someone with dementia? Except it might be worse. For the person with dementia might already be disadvantaged by the social situation when the (probably benevolent) tucking-in occurs.

Having worked in this field for more than 20 years, with the publication in 2001 of his book The Experience of Alzheimer?s Disease: life through a tangled veil, Sabat is now established as a leading light in what has been termed the new culture of dementia care. One obvious modern source of this new culture is the work of the late Tom Kitwood with the Bradford Dementia Group (Bradford was the next stop on Sabat?s travels).

It was Kitwood who stressed the importance of providing person-centred care for people with dementia. He made a link between this sort of care and their quality of life. In essence he said that if we understand the extent to which being a person depends, not only on our biology, but also on our social interactions, then we should be moved to pay attention to the latter in caring for people with dementia. Thus one husband told me how much his wife, who had dementia, appreciated being addressed by her name. It meant that someone recognised her as a person, which was enough to improve, however transiently, her sense of wellbeing.

What this might mean in day-to-day terms was shown during the meeting at Minsteracres in a short presentation by Dementia Care Partnership. This unique charity, based in Newcastle, runs services for people with dementia, including supported living houses. These are ordinary houses in ordinary streets in which three or four people with dementia have decided to live with specially trained carers. The special training involves an understanding of the ?person-led? philosophy of the charity. The person with dementia decides, albeit with help, how the day will be spent, what will be bought, what will be cooked, whom to see. He or she answers the door to visitors. The symptoms and signs of dementia will gradually worsen, but the people in these homes will not have to suffer, in addition to the burden of their undoubted pathology, the preconception that they are incapable of making any decisions, incapable of the normal inclinations and feelings that the rest of us have.

One of Sabat?s powerful messages is that we must not position people with dementia in such a way as to show them in a negative light. For instance, as part of a routine assessment, a sufferer is asked to remember three words. With only mild to moderate Alzheimer?s disease, he or she is likely to fail such a test. Sabat refers to this sort of testing as ?defectology?. The very act of assessment treats the person as someone who cannot do certain things. In numerous ordinary ways, in common with many people with other disabilities, people with dementia can be defined ? even by those who love them ? as not being capable, so that their remaining capabilities are taken away from them and they are undermined as people. In short, they have to be tucked in.

Sabat?s book is a rich testimony to the ways in which people with dementia, despite their defects, retain all sorts of capabilities. Over many years he has recorded his conversations, which were themselves extended over many months, with people with moderate to severe dementia. Among other things, these people were able to recall important facts, recognise things, plan, negotiate complex social situations, express opinions on issues that ranged from recent events in their lives to politics and, in general, to convey meaning with a purpose.

One moving story concerns Dr B, whom Sabat came to know well. Dr B was at the severe end of the Alzheimer?s spectrum, at least in terms of formal tests. Nevertheless, on one of their walks Dr B took Sabat on a detour to see some flowers and then suggested Sabat should pick some for his daughter. This story demonstrates Dr B?s orientation, memory (both that Sabat had a daughter and that he was going to collect her), social skills and aesthetic sensibility. We know he would have been likely to fail formal tests of orientation and memory. Social skills and aesthetic sensibility are not, however, assessed by such tests. Of course, Dr B might have become frustrated by such testing and by his poor performance, and a non-sympathetic tester might then have interpreted the frustration and annoyance as symptomatic of dementia, rather than as an understandable reaction to the testing.

Sabat points to three ways of understanding personhood (or selfhood) and, in doing so, indicates that our judgements about whether or not the person?s self still exists need to be made with caution and subtlety. Self 1 is usually signified by the use of personal pronouns and adjectives (e.g. ?I?, ?me?, ?my? and ?mine?). But I can preserve self 1 even in severe dementia, when language has gone, by gestures.

Self 2 refers to the mental and physical attributes a person has, some of which will naturally change and some of which will endure. I might lose my appetite and grow weaker, but I might not lose my sense of pleasure when in the company of family and friends. It is simply a bias in our thinking that we only observe the attributes that have disappeared in dementia, rather than noticing those that endure.

Self 3 refers to the displays, the roles, I put on for the world. But, in the case of self 3, much depends on the ways in which I am allowed to act. It is difficult for me to act as the paterfamilias if my family has no respect for me whatsoever. In dementia, similarly, my self 3 will or will not be maintained ? to a large extent ? by others.

This theorising links to Sabat?s real experience of people with dementia, but the links are not only to his work. Another ambassador for the new culture of dementia care is John Killick. He is a writer, poet and researcher (based in part at Stirling, from where Sabat had travelled before arriving at Minsteracres) who is busy demonstrating the significant remaining creative capabilities that lie just beneath the surface, even in people with severe dementia. His book (co-authored with the photographer Carl Cordonnier), Openings: dementia poems and photographs, contains poems written by people with dementia, or transcribed from their writings by Killick. What he is able to reveal are the powerfully intact emotional capabilities of his poets (ordinary people) with dementia.

And yet, the question from the exhausted carer of someone with dementia might be, where does all this get us? It certainly does not detract from the terrible nature of dementia as an illness, and the difficulty for those around who must watch the person?s inexorable decline. Nevertheless, the change in culture signalled by the work of Kitwood and his successors, by Sabat and Killick, by charities such as Dementia Care Partnership, as well as the Alzheimer?s Society, all point us towards a future in which the wishes, feelings and inclinations of the person with dementia are centre stage and he or she is not just tucked in willy-nilly. If we cannot repair the pathological brain damage that underlies dementia, we can at least attend to what Kitwood called the ?malignant social psychology? that can surround a person with dementia. By so doing we can improve quality of care, which must, in turn, improve the person?s quality of life.

So, if an argument in favour of euthanasia is that the sufferer lacks dignity, or is less than human, or is not a person, the response is that much of this depends on the quality of care the person is receiving. We need better care generally for people with dementia, which should include better hospice care when it comes to the end. As Sabat says towards the close of his book, in the faces of people with dementia we should see our own fate and the fate of those we love. We should seek out the humanity of people with dementia in their remaining abilities. In so doing, we shall draw upon and reaffirm our own humanity and recognise our mutual dependence and the possibility of maintaining dignity through the care and concern we show for one another.

Dr Hughes is a consultant in old age psychiatry at Newcastle General Hospital.