On 1st February 2010 the writer Terry Pratchett, author of what he self-mockingly referred to as ‘inexplicably popular fantasy novels’, gave the 34th Richard Dimbleby Lecture. Somewhat grimly yet playfully titled Shaking Hands with Death, Pratchett’s talk offered a touching and witty insight into living, as a writer, with Alzheimer’s (Pratchett had a rare strain of the disease known as Posterior Cortical Atrophy, which first manifested itself in difficulties accurately touch-typing), and set out a considered case for the right to choose, what he called, 'a good death'. I didn’t catch the original broadcast back in 2010, but read the script of the lecture much later, when it was first published in 2015. It made for wonderful reading.
But it was neither Pratchett’s account of his adjusting to life with PCA, nor his acute philosophical musings on assisted dying (memorable as these both were) that were, for me, the most interesting aspects of his talk. What caught my attention above all else, and has stayed with me since, was, very simply, the reason he gave for agreeing to deliver the lecture in the first place.
Prior to becoming a best-selling novelist, Pratchett was a newspaper reporter and, like many other reporters at that time, was an admirer of the pre-eminent journalist Richard Dimbleby. When Dimbleby died of cancer in 1965, Pratchett was struck by the candidness with which the journalist’s cause of death was announced in the British press. In those days ‘cancer’ was a forbidden word around which obituary writers fearfully tiptoed, preferring instead the vague and euphemistic expression ‘long illness’. The effect which this bold departure from linguistic convention had on public discourse, Pratchett recounted, was astonishing, and thereafter, spurred by this new verbal candour, the war on cancer began in earnest. ‘Before you can kill the monster,’ Pratchett opined, ‘you have to say its name.’
Respecting dementia, I fear that we are, linguistically at least, still stuck in a kind of benighted pre-Dimbleby era. Peruse any recent newspaper obituary, for example, and I suspect you’ll be hard pressed to find any explicit mention of dementia, regardless of the significance of its impact on the life of the deceased. Shortly after the death of Margaret Thatcher in 2013, I read as many obituaries as I could lay my hands on and, as far as I recall, not one of them discussed her having dementia. It was as though any mention of the disease would have been in some way incommensurate with a relevant and proper appraisal (positive or otherwise) of her life and legacy.
Another linguistic parallel between cancer and dementia is the way the two are described metaphorically. But here, as we shall see, dementia is by no means figuratively lagging behind in the 1960s. Metaphor (which literally means a carrying over, a transfer) relates to the process of describing one thing in terms of another: Juliet is the sun; he drowned in a sea of grief; all the world’s a stage; the rain came bulleting down, and so on.
In a marvellous and highly influential book, Metaphors We Live By, George Lakoff and Mark Johnson argue that metaphor is not simply some form of linguistic garnish – a poetic flourish designed to embellish an otherwise unremarkable stretch of discourse. Rather, they claim that metaphor is a means of seeing and making sense of the world, and hence something much more fundamental to human perception and experience than we have previously allowed for. We use metaphors all the time, often without realising that we are doing so. One of the most common kinds of trope depicts life as a journey, a metaphor which is realized in a variety of common expressions: We’ll cross that bridge when we come to it; there are a number of paths open to you; the baby has arrived! In fact, metaphor is so common in everyday language (not just literary discourse) that almost everything we say is in some underlying sense figurative.
Metaphor certainly pervades the language of disease and medicine, particularly figures of speech that relate to war and warfare, although, here again, we might not readily apprehend their metaphorical essence. For example, terms such as heart attack and casualty (as in casualty department), and talk of wiping out disease and treating it aggressively, are so common as to have become almost unnoticeably conventional. Yet construing disease in martial terms, however conventionally, has its benefits. It allies patients and health practitioners against a common ‘enemy’ and can confer a sense of agency in a time of doubt and helplessness (feelings which are understandably common in serious illness).
Military metaphors also feature prominently in the promotional rhetoric of health charities and public health campaigns. One can see why. Such tropes are characteristically vivid and attention-grabbing and hence able to help raise the profile of a particular disease. Any mention of fighting disease, moreover, encodes the prospect of victory. In the case of cancer, with treatments (‘arms’?) becoming increasingly effective, and more and more people surviving (or indeed ‘beating’) the disease, the martial metaphor is, for some people, appropriate and effective: it can inspire genuine hope of personal recovery, the discovery of a cure, and stimulate charitable action.
But any talk of waging war on disease also intimates, of course, the possibility of defeat – of being ‘beaten’ by disease. And this is why conceiving dementia in military terms is, I think, inherently problematic. There is presently no cure for dementia (whatever the variant of this complex, multiform disease) and thus to 'fight' it is a potentially inaccurate and misleading form of representation, and one that has certain (negative) consequences. For how exactly does one fight a disease for which, unlike other serious diseases such as cancer, there is no effective and readily available treatment? Should people with dementia be encouraged to fight? Are they always well-placed to do so? And what is it to speak of people who have, as it were, ‘lost’ to the disease – does this entail construing them as somehow or in some way having failed?
I think that talk around health and illness has suffered for too long from ‘combat metaphor fatigue’. So here’s a rallying cry (a sporting rather than military one, I hasten to add): it is time for new metaphors – time for less aggressive and absolute ways of describing dementia and the experience of living with it. We need tropes that, in the words of the great Tom Kitwood, promote ‘personhood’ and living well with, rather than struggling against, the disease. Changing the way we talk about dementia is not simply a token exercise in social etiquette, a means of being polite and respectful (important though this is). It is more fundamental than that. Updating our tropes affords us new, more enlightened, ways of thinking about and making sense of dementia – possibly shedding, in the process, some of the stigma which attends prevailing formulations of the disease.
Suggestions for further reading
George Lakoff and Mark Johnson (1980) Metaphors We Live By.
Paul Hodgkin (1985) Medicine is war: and other medical metaphors.
Peter Ashley died on 10th November 2015. This brings to an end a remarkable life and he is much missed by the people who knew him. He made a great contribution to how dementia is perceived, spoken about and responded to.
Peter had a background in engineering and maths and worked in the electronics and computing industry. He was a successful businessman and by the age of 64 had become a director of a computer graphics company. At this point, in 2000, his life was turned upside down by a diagnosis of dementia with Lewy bodies.
After a few months, he resolved to make the best of things and embarked on a second career as a dementia activist. He was elected as a trustee of the Alzheimer’s Society which may well have been the first time that a national dementia organisation had a person with dementia on its governing body. During this time, around 2004, he established within the Society a group called Living Well with Dementia. This is probably the first time that now well-known phrase was used.
His contributions included input into the NICE/SCIE Dementia guidelines, the drafting of the Mental Capacity Act, and the development of the National Dementia Strategy (published in 2009 under the title Living Well with Dementia). He was instrumental in the founding of the Lewy Body Society. He was also a frequent attender at conferences and events in the UK and further afield and had a huge circle of acquaintances. His wife, Ann, was instrumental in helping him to achieve these things and herself deserves great credit
I met Peter several times over the years. Our closest interaction was that he contributed a chapter on Living with Dementia for an edition of the Oxford Textbook of Old Age Psychiatry. In fact, no chapter had been forthcoming, so I was tasked with the delicate mission of investigating the matter. We had a phone conversation in which we explored various means of helping him to get started on the writing (from which, I presume he had some problems with executive functioning). The agreed solution was that I should send him a set of questions on issues we wanted him to cover and he would write around this as if he was doing an interview. It worked beautifully.
The phrase, Living Well with Dementia, is now in the groundwater. It may not tell the whole story, as of course some parts of the dementia journey may be harrowing, but it is an effective counterweight to all the ‘dementia sufferers’ bilge you read in the newspapers. Peter eventually died of cancer, so he and dementia were probably equal partners after 15 years post diagnosis together.
[see http://www.dementiaallianceinternational.org/peter-ashley-life/ for more information]
After þat heruest inned had hise sheues,
After Harvest had drawn in his sheaves
And that the broun sesoun of Mihelmesse
And the brown season of Michaelmas
Was come, and gan the trees robbe of her leues,
Was come, and began to rob the trees of their leaves
That grene had ben and in lusty freisshenesse,
That had been green and in lusty freshness,
And hem into colour of yelownesse
And had dyed them the colour of yellow
Had died and doun throwen vndirfoote,
And thrown them down underfoot,
That change sanke into myn herte roote.
Then that change sank in to my heart’s root.
Thomas Hoccleve (1367-1426) is among the earliest English writer to leave us an account of his own mental illness. A professional clerk at the Office of the Privy Seal, as well as a prolific poet writing for patrons as powerful as Henry IV and Henry V, Hoccleve had a great deal to lose not only through his illness, but through the immense difficulties of writing about such an experience.
Hoccleve’s My Compleinte (c. 1419) seeks to re-make his self as a writer through the explicit – and often moving – narration of his psychological suffering and recovery.
To begin with, he re-makes a very famous passage of verse (the opening of Chaucer’s Canterbury Tales) into a striking evocation of aging. Where Chaucer’s seasonal setting for the Canterbury Tales was Spring, Hoccleve’s is Autumn. Where Chaucer writes of youth, Hoccleve inverts the focus to that of age. In the Canterbury Tales, the rejuvenating action of April rain pierces down to the roots of the earth, bathing the veins and roots of plants in liquid which produces new life (and the impulse to go on pilgrimage).
Hoccleve uses the imagery of a natural world moving in the opposite seasonal direction. Harvest is over, the gloomy ‘broun’ season robs the trees of their leaves, which fall from their past green freshness to stained yellow, and then to the earth. The enervating fall of leaves and life leads to the introduction of Hoccleve’s remarkable autobiographical narration of his suffering and recovery.
More harmful, perhaps, even than the suffering itself – what Hoccleve terms his ‘wilde infirmite’ – is the tangible sense of isolation and loneliness that adheres to the experience. Those who previously made up his ‘companie’ begin to avoid and ignore him, ‘casting their heads away’ ‘Whanne I hem mette, as they not me sy’ [when I met them, as if they couldn’t see me]. It is, perhaps, this social reaction which Hoccleve’s text is designed to tackle, as the narrative develops into a virtuoso ‘series’ of textual parts designed both to demonstrate his recovery and reclaim the financial and cultural kudos he had previously enjoyed.
The sheer age of Hoccleve’s writing itself might serve to remind us of the ways in which the understanding of aging and mental illness has always been conditioned by various historical moments, its meaning shaped by cultural and social pressures and imperatives which change over time. It also, though, remains a remarkable account of the deeply troubling time when ‘the substaunce of my memorie / Went to pleie [play] as for a certain space’, and the ensuing wait for his ‘wit’ to ‘hoom [home] come agein’.
The Mary Chester club is a day centre in Perth run by the Alzheimer’s Society of Western Australia. They opened their doors today to hundreds of delegates to the Alzheimer Disease International conference. A majority of those attending are from Asia; I met practitioners and researchers from Japan, Singapore and Hong Kong - as well as several from far-flung parts of Australia. The Mary Chester club is run along Eden Alternative lines, an approach to care that seeks to ‘abolish boredom and loneliness’ by creating stimulating, warm and welcoming environments for people with dementia. This club also provides a library with masses of information about different aspects of dementia care and technological solutions for everyday problems. Its personnel set up peer support groups of people with a diagnosis, while specialist consultants are on hand to work with individuals who encounter specific problems at home or in residential care.
The provision for men was particularly interesting to me. Many men attending the club included a love of sports in their personal profiles, and had been active players of golf, tennis or other sports. Appropriately, therefore, regular outings to the leisure centre with a dedicated fitness trainer were part of the weekly routine, while those who were too frail to leave the premises enjoyed chair-based exercise and meditation, we were told. One room in the centre was called a ’mens’ shed’, equipped with a workbench and tools for woodworking, and I saw that at least two of the care staff at the club are male. Of course women enjoy exercise and woodworking too, but it was good to see the attention given to meeting mens’ needs.
Yet it was noticeable that the vast majority of the delegates to the conference are female. I wonder why there is such a gender imbalance in dementia care. Men with dementia are seldom offered the option of a male carer, simply because they are so rare. Perhaps we should find out what obstacles stand in the way of a better match between the proportion of men with dementia and the proportion of male carers.
My dad was 90 earlier this year. My sisters and I spent a good few weeks debating the benefits and pitfalls of a big party. However, despite the fact that dad can no longer remember his friends’ names or what day of the week it is, for six whole months last year he remembered that he had a ‘significant’ birthday coming up and that this meant he was entitled to a party.
The party was the subject of many a jokey conversation with my dad, and grew bigger and more elaborate by the week. He smiled at the thought of it and I began to develop plans. The guest list grew then shrunk then grew again as the family tried to work out if a large number of people would confuse and disorientate him or be a source of pleasure. The likelihood that he would not remember old friends and whether this would distress him was mulled over. But dad’s joy at the idea was infectious and so the invitations went out.
The day I gave dad a copy of the invitation I’d designed, complete with steam trains and some big ‘nine zeros’, his face was blank. My heart sank that perhaps I had got this wrong. It was as if we’d never discussed this before, and to him, with his Alzheimer’s, this must have been how it felt. But dad is a sociable animal, and it was easy to re-engage his enthusiasm for the idea.
Dad’s sociability has been a surprise. When my lovely mum was alive it was obvious she was a ‘people person’, and she was always at the heart and soul of the local community. When she died, suddenly and unexpectedly at the age of 80, her funeral packed the church and we ran out of Orders of Service, despite having printed up 100 copies. When my dad was left alone with his dog I think we all expected him to retreat a little from the social circuit. He is a man who likes peace, and detail, and steam trains, but who was never very engaged emotionally. Four years on, though, and dad always takes up a social opportunity if he has one. He goes regularly to church and to his clubs – Probus, 41 Club, the Model Engineering Society – and never, ever misses the chance of a meal out.
And so it was that the great day came. Dad was 90! We, his daughters, had congregated from our scattered corners of the world and he was surrounded by family and friends. People came from as far as Kent and the Lake District. A massive birthday cake in the shape of a nine zero lit up his universe with candles and sparklers. Dad beamed, the centre of attention amidst family reunions and old friends catching up.
Yes, we had to remind him who was who and how he knew people. But the faces were familiar, even if he couldn’t place them, and the knowledge of friendships and family connections clearly remained beyond the ability to recall the details of who, how, when and where.
Now, of course, dad is happily anticipating ten years on and his telegram from the Queen!
