Every Third Thought Page 5

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  In May 2016, the BBC reported the findings of an Alzheimer’s Society survey: nearly two-thirds of people questioned were afraid that a diagnosis of ‘dementia’ would mean their life was over, while more than half of those seeking such a diagnosis had ‘delayed going to their GP by at least a year.’ Out of 2,000 adults, one in five feared losing their partner or friends if they were diagnosed with ‘dementia’, and almost half worried that people would think they were ‘mad’ if faced with such a diagnosis. The charity said these myths about dementia were stopping people from getting the best possible treatment and also preventing them from planning for the future. Such patients’ anxiety is understandable. No one, in their right mind or otherwise, wants to be considered ‘mad’.

  How does medicine define ‘mad’? There are few precise metrics, and there is a continuum of ‘dementia’ that ranges, in the vernacular, from ‘dotty’ to ‘bonkers’. The report noted that common symptoms of dementia included: ‘memory loss, especially problems remembering recent events such as messages; periods of mental confusion; difficulty finding the right words; difficulty with numbers or handling money in shops’ and ‘depression and changes in mood or personality’. You might conclude that, logging this checklist on a bad day, almost anyone could be convinced of incipient dementia. That, indeed, is part of the diagnostic problem.

  The statistics for ‘dementia’ are that it afflicts approximately 850,000 people in the UK. Furthermore, according to the BBC, some additional 225,000 people will develop dementia in the coming year, which equals ‘one every three minutes’. Consolingly, much of this new awareness of cerebral failure might be encompassed by the kind of absent-mindedness conveyed by ‘dotty’. And yet, whether dotty or demented, our ageing population faces a whole new battery of challenges.

  6

  SILLY OF ME

  ‘The Question therefore was not whether a Man would chuse to be always in the Prime of Youth, attended with Prosperity and Health; but how he would pass a perpetual Life under all the usual Disadvantages which Old Age brings along with it.’

  Jonathan Swift, Gulliver’s Travels

  Sometimes the intimations of neurological breakdown are like the most insignificant of mundane clues to a vicious crime. Yesterday, at the beginning of the weekend, over dinner, Brian (an old friend, now in his mid-sixties) spoke eloquently and at length about Photograph 51, a new play by Anna Ziegler, starring Nicole Kidman, a biographical drama based on the troubled and controversial career of the X-ray crystallographer Rosalind Franklin.

  The conversation at the table was lively and specific, eventually morphing into a discussion of what else was playing in the West End, mixed with some grumpy-old-man complaints about the decline of British theatre. Today, at lunch, Brian turned to me and said. ‘Have you seen Photograph 51?’ And then began to talk about it, in animated detail. With a rather queasy playfulness, not knowing quite how to respond, I reminded him that we had talked about both the play and Nicole Kidman’s performance just the night before. ‘Of course,’ said Brian. ‘Silly of me. So we did.’ The conversation moved on, but there was a shadow of anxiety in my mind. Brian is precisely at the age when symptoms of early onset dementia first present themselves. He, predictably, seemed blissfully unaware of his condition.

  The assault of old age on the brain can radically change the terms of the endgame: it will transform the physical encounter with ageing, death, and dying into a crisis of consciousness, and an attack on the Self. This is an unintended consequence of our post-war focus on Identity. When the novelist Stephen King was asked by the New York Times what he was most afraid of, his reply encapsulated some of our most vivid contemporary fears. He replied, in almost jocular terms: ‘Everything? Death, but not even death so much as Alzheimer’s, or premature senility. My idea of a horror movie is Still Alice. The things that scare me or interest me over the years are less drive-in-movie horror stuff, and more what you find in real life that scares the devil out of you.’

  The self is a fragile vessel at the best of times, and (whatever else it might be) old age is no longer seen as ‘the best of times’, if it ever was. Ageing besets the self with many storms that – in youth and early middle age – amount to no more than the annoyance of bad weather, offering no serious threat. The onset of these disturbing new apprehensions is beginning to attract the attention of serious writers. In a classic of this genre, Nothing To Be Frightened Of, Julian Barnes writes:

  When, at the age of fifty-eight, I published a collection of short stories dealing with the less serene aspects of old age, I found myself being asked if I wasn’t being premature in addressing such matters. When I showed the first fifty pages of this book to my close friend H., she asked, concernedly, ‘Does it help?’

  Once you turn sixty, ‘the less serene aspects of old age’ become steadily darkening clouds of anxiety. In particular, the fear of ceasing to be yourself flourishes in the cracks that open up in the texture of everyday life: unexpected hospital visits for minor ailments; funerals and memorial services; peculiar irruptions of pain and odd, inexplicable bodily crises. Mostly, these add up to episodes of memento mori, sharp but fleeting physical reminders. Occasionally a moment of mild forgetfulness, like Brian’s, can sponsor darker anxieties about losing one’s mind. An unanticipated memory loss can provoke that darkest fear of all, the terror of King Lear: the fear of losing reason, with the associated loss of identity.

  O let me not be mad, not mad, sweet heaven!

  Keep me in temper; I would not be mad!

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  The speed of Lear’s disintegration is horrifying, but all too plausible. Families caring for Alzheimer’s sufferers will know the ferocity with which the affliction can strike, often after a long, slow gestation. Shakespeare conveys his understanding in a single speech in Act II, which begins, almost philosophically, in the king’s consideration of routine welfare:

  Our basest beggars

  Are in the poorest thing superfluous.

  Allow not nature more than nature needs –

  Man’s life is cheap as beast’s.

  Then, as dementia strikes, the king become almost inarticulate with rage, denouncing his daughters:

  No, you unnatural hags,

  I will have such revenges on you both

  That all the world shall – I will do such things –

  What they are, yet I know not, but they shall be

  The terrors of the earth . . .

  Finally, the king recovers himself, before dissolving into terrified self-pity:

  You think I’ll weep.

  No, I’ll not weep. I have full cause of weeping

  But this heart shall break into a hundred thousand flaws

  Or ere I’ll weep. O Fool, I shall go mad!

  After this, as the action of the play unfolds, Lear is represented, on stage, as virtually gibbering, until in Act IV, he becomes purged of his anger and appears in a kind of second childhood, festooned with wild flowers, and challenging imaginary wildlife. Nevertheless, he’s still conscious of his old self and admits:

  Let me have surgeons;

  I am cut to the brains.

  The failure of the synapses in the ageing brain have their correlative in society. Disconnections isolate us. A new generation (our kids, their kids, and their kids’ kids) replace us. Friends and acquaintances die or lose their wits. We only meet at funerals. Connections fail. Retirement breaks links with reality, and with life. Retirees die premeturely. Companies go bust. Christmas parties no longer happen. Weekends get overshadowed by ill-health. Children grow up and move out. Things change, fail and decay. Social consciousness becomes more marginal. The ties that connect us to the mainland of humanity become looser and looser. Solitude begins to encroach more and more. In the end, perforce, a lot of elderly people will live in a state of enfeebled isolation. As King Lear says, towards the end:

  You must bear with me. Pray you now, forget and forgive. I am old and foolish.

  Consider th
e curious and distressing case of the best-selling novelist Terry Pratchett. The author of the ‘Discworld’ books was an acclaimed popular entertainer with a devoted following of millions worldwide. As he approached the end of his fifties, he was blithely looking forward to his third act. As he put it himself, ‘I’m sixty. That’s supposed to be the new forty. The Baby Boomers are getting older, and will stay older for longer.’ But then he began to notice that ‘something was going wrong’. At this stage, Pratchett could not be more precise; besides, he was fearful. Things came to a head in the summer of 2007. His typing had been getting progressively worse and his spelling increasingly erratic.

  At first, as Pratchett writes in A Slip of the Keyboard, published posthumously, his doctor tried to reassure him that he was simply ageing. Pratchett was not convinced, however, and asked for more tests. His deep, private instincts about his condition were confirmed. After he had been diagnosed with PCA (posterior cortical atrophy), a rare version of Alzheimer’s that affects the back of the brain, Pratchett describes himself as enraged. ‘I felt totally alone, with the world receding from me in every direction; you could have used my anger to weld steel.’

  Pratchett, recovering his self-possession rather better than King Lear, now followed his diagnosis with some intensive research into his condition, to get the best possible treatment. By August 2008, he was joking to the News of the World that he didn’t ‘know anyone who has got better’ from PCA, before sounding a darker key: his affliction was stripping away his humanity a little bit at a time ‘so you hardly notice, and until you end up a vegetable.’

  In these early stages, he retained quite a good quality of life. ‘I can still work at home and control my environment,’ he writes, ‘and the rare variant of the disease is not yet a real burden. The novels turn up as they always have – only the typing is hard. There will now be a moment when the letter A, say, vanishes. It’s as if the keyboard closes up and the letter A is not there any more. Then I’ll blink a few times and concentrate and it comes back.’

  PCA, writes Pratchett with ironic stoicism, slowly robs the patient of memory, visual acuity, and ‘other things you didn’t know you had until you miss them’, finally leaving you – he claims, with defiance – ‘more or less as fluent and coherent as you always have been.’ As Pratchett expresses it, his active consciousness of brain failure was the most poignant aspect of his affliction. ‘It was like I had two diseases,’ he writes, ‘one was Alzheimer’s and the other was knowing I had Alzheimer’s.’

  The key issue here is that our ageing society has not yet come to terms with the shame and distress associated with madness. Pratchett was facing ‘an unstoppable process of dying by degrees’, from a condition with no cure, and so it was with remarkable courage that he used his celebrity to publicize the Alzheimer’s Research Trust:

  It is a strange life when you ‘come out’. People get embarrassed, lower their voices, get lost for words. Fifty per cent of Britons think there is a stigma surrounding dementia. Only twenty-five per cent think there is still a stigma associated with cancer . . . When you have cancer you are a brave battler against the disease, but dementia makes you feel quite alone.

  Pratchett, who died in March 2015, was a brave witness. Madness, in King Lear’s sense, remains a subject we are still squeamish about. Varieties of ‘madness’, though rarely identified as anything other than ‘dottiness’, can be found all over the English suburbs, and especially by the sea, in places with names like The Pines, Sunrise Care Home (for Senior Living), Tideway, etc.

  In these ‘homes’, the residents are rather like the ‘immortal’ Struldbrugs on the island of Luggnagg in Gulliver’s Travels, who can ‘never amuse themselves with reading, because their Memory will not serve to carry them from the Beginning of a Sentence to the End.’ By this defect, writes Swift, ‘they are deprived of the only Entertainment whereof they might otherwise be capable.’ Grimmer still, among this grey army of retirees, a growing minority will face the worst threat of all: the kind of dementia named after the German doctor who first identified it. Today, for the first time, Alzheimer’s families are beginning to publicize the affliction as it affects them.

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  Prunella Scales is a much-loved British actress, renowned for her role as Sibyl in Fawlty Towers, in which she played the long-suffering wife to a domestic lunatic. It’s the tragic irony of her old age that, in her seventies, ‘Pru’ has succumbed to her own dementia.

  Her husband Timothy West has spoken of his sadness over the ‘gradual disappearance of the person [he] knew and loved.’ According to The Times, West’s coping strategy is all about living in the moment: ‘If you live from day to day it’s manageable. It’s when you start thinking of the past and thinking, “Oh, what a shame she can’t do that any more, she doesn’t appreciate that any more and we can’t talk about this any more,” then it’s sad.’

  For West, the first clues were apparently trivial. West first noticed there was something not quite right with his wife about fifteen years ago when he watched her on stage. Although she did not struggle to remember her lines, he noticed that she was not entirely inside the character’s head. He could ‘see her thinking’ about her acting. For some years, Pru was not given a diagnosis, but once she was, the couple felt it was important to go public.

  ‘Not to do it would be dishonest,’ West told The Times. ‘Particularly if we’re going to appear on television together,’ he says. ‘Enough people know about the condition to say, “Oh, why aren’t they mentioning this?” I just thought it was unfair, stupid and dishonest not to keep people abreast of it.’

  Terry Pratchett had come to the same conclusion. ‘It seems to me’, he wrote, towards the end, that ‘there’s hardly one family in this country that is not touched by the disease somehow.’ Here, Pratchett addresses a vital theme of the ageing process: there are innumerable ways in which the brain can fail.

  So I went to see the British neurologist Andrew Lees, who has devoted his professional life to extremes of cerebral breakdown, especially Alzheimer’s and Parkinson’s. Where brain surgeons wield the knife, Lees considers himself as a neurological Sherlock Holmes, a detective at a crime scene.

  7

  LOSING THE PLOT

  ‘I feel loved, ignored, needed, and like a dying albatross – chained around each of the people who cares about me.’

  Richard Taylor, Alzheimer’s from Inside Out

  I first met Lees as a stroke patient in Queen Square, during July 1995. We have since become friends. As I’ve got to know him, I’ve discovered a great doctor with an enthralling personal story – an associate and colleague of Oliver Sacks, a highly original writer, and a tireless investigator into the weirder recesses of the mind. In the quest for a cure to Parkinson’s, for example, Andrew was the first to follow the author of The Naked Lunch William Burroughs’ experiments with apomorphine, a non-narcotic derivative of morphine.

  Lees, as a Burroughs aficionado, is always willing to take an unconventional diagnostic route in search of a cure. He says he learned ‘to treat the person not the disease’, and was never afraid to use literature to help with his enquiries. He is also excited by the potential of plasticity and stem cells. Lees reports that he is often asked about appropriate recipients for donations to neurology. ‘I would always encourage stem-cell research,’ he says. ‘That’s our best bet, especially for Parkinson’s. We’ve done foetal implants and shown that they can work. Now we just need safe and reliable stem cells.’

  Not content with referencing the work of Burroughs, Lees will tell you, en passant, that the Marcel Proust of À la Recherche du Temps Perdu is also a brilliant neurologist. Addressing the frailty of the human brain, Lees likes to quote ‘Forgetfulness’, a poem by the former American poet laureate Billy Collins, a description of the process that begins in middle age:

  The name of the author is the first to go,

  Followed obediently by the title, the plot,

  The heartbreaking conclusion, t
he entire novel . . .

  Andrew Lees could hardly be plainer about Alzheimer’s, though the smiling tranquillity of his demeanour takes the threat from his words. ‘It’s a plague,’ he says equably, as I switch on my recorder, and settle into his narrow, brightly lit office. Still, his candour comes as a surprise. I have known him for twenty years in the context of post-stroke convalescence, but have only recently come to understand his pioneering role in raising public consciousness of Alzheimer’s.

  The statistics of this disease, for an ageing generation, are indeed horrifying. There are now, for example, more people in the United Kingdom with Alzheimer’s than live in the city of Liverpool. Lees describes how the prevalence of this plague increases exponentially over the age of sixty, and is now poised to become the second leading cause of death after heart disease. Worse yet, six million inhabitants of the European Union and four million in the USA have Alzheimer’s, figures that are projected to double by 2030. Even more dramatic, in Western Europe, 1.4 per cent of the population has dementia. ‘Alzheimer’s is everywhere,’ he concludes.

  With flowing white hair, and the unmarked features of a much younger man, sixty-something Professor Lees could safely audition for the role of a junior wizard. ‘Like the police,’ he jokes, ‘we neurologists prefer our own company.’ His habitual dress of dark suit, white shirt, and black tie also gives him the air of a graduate student awaiting a big interview. Lees occupies a cluttered but functional room in a nondescript building a few hundred yards up the street from the National Hospital in Queen Square, where his career as a neurologist began. The drabness of his surroundings conceals one remarkable aspect of his research into the mystery of the cortex: somewhere in the laboratories adjoining his office there’s a collection of three thousand human brains pickled in formalin. These brains are his stock-in-trade. Lees tells me, quite matter-of-fact, while discussing Alzheimer’s, that a definitive diagnosis of the disease can only be made by a post-mortem study of the cruel tangle of amyloid plaques in the brain. ‘The only way to be sure,’ he says, ‘is after death. We’ve still got a long way to go in our research.’ This is an understatement. Much of the most promising research, especially into the possibility of a ‘synthetic hippocampus’, has only been explored with rat brains. Almost everything about Alzheimer’s seems to resist investigation, not least because we have not yet found an acceptable way to experiment on the human brain.