We need to talk about dementia

There is little consolation to be gleaned from the bare facts of dementia. But Nicci Gerrard has found much to cheer us by delving beneath and beyond the grim statistics to find meaning in misery

Daniel Johnson

It is uncannily apposite that this most insidious of disorders should have come to overshadow so many lives at precisely the moment when Western civilisation is suffering from a kind of collective dementia. As a society, we are metaphorically losing our minds (we are, that  is, “de-mented”) as a result of our wilful neglect of our past. Cultural amnesia has hardened into a self-destructive embrace of identity politics that actually betokens a loss of identity. We seem to have lost the art of resolving our differences rationally and accepting defeat with a good grace. We prattle about mindfulness but are often mindless.

Dementia, though, is much more than a metaphor: it is a disease, the disease of our time. In Britain, it is easily the most common cause of death for women; for men, too, it will soon overtake heart disease. If it were infectious, dementia would long since have been declared an pandemic. According to figures cited in Nicci Gerrard’s new book, nearly a million people are now known to be living with some form of dementia in the UK — three times as many as in the 1970s. There are likely to be as many again who are undiagnosed. In the US, the figure is 5.5 million; in the world, according to the WHO, about 47 million. These numbers will multiply many times as the global population ages; a third of all Japanese are now over 60.

The cost of caring for people with dementia is astronomical: in the UK, some £26 billion (more than the combined cost of treating cancer, heart disease and stroke); worldwide, about a trillion US dollars. But these are only the quantifiable costs. They do not take account of the toll on the army of carers, often the spouses, partners and children of the afflicted. A third of them will have been performing that role for at least five years; a fifth of them for more than ten years. Most carers toil away unpaid, unseen and unrecognised.

There is little consolation to be gleaned from the bare facts. But Nicci Gerrard has found much to cheer us by delving beneath and beyond the grim statistics to find meaning in misery. Above all, she tells stories: of human courage in the face of insupportable loss; of human kindness in the face of despair and desolation; of humanity shining through the indignities of a dehumanising disease. What Dementia Teaches Us about Love is a beautifully written treatise that more than lives up to its promise — but it might also have been titled What Love Teaches Us about Dementia. For this book is, at its heart, a daughter’s memorial to her father: a man who by the end might have lost his memory but whom she is determined shall not be forgotten.

At this point, I should declare an interest. I have been a friend of the author and of her husband and co-writer of the “Nicci French” thrillers, Sean French, for many years. I respect Nicci’s integrity as a journalist for the Observer, but I learned many things about her from her book. For example, she has trained to be a celebrant at the funerals of the unchurched. It is a noble calling which has given her many insights into death: how we do or do not prepare for it, endure it and mourn it, especially in the case of those whose lives may seem to have been extinguished long before they have departed.

Her father John, by her account a gentle man and a true gentleman, died some five years ago. After a decade of living with dementia, he had been treated in hospital for ulcers, but due to rigidly enforced visiting rules was left alone for much of his five-week stay. Deprived of family, he returned a ghost and died soon after. Since then, Nicci has mounted a campaign to persuade hospitals to allow carers the right to stay with patients suffering from Alzheimer’s and other forms of dementia. These patients’ mental vulnerability renders the dislocation of finding themselves isolated from loved ones acutely distressing, damaging and not infrequently fatal. John’s Campaign has helped to change the attitude of hospital staff towards dementia carers into a humane presence to be embraced and a human resource to be welcomed.

For the men and women in white coats, Nicci is evidently a force to be reckoned with. She tells the story of how, after her father died, she was in France when her widowed mother suddenly collapsed. In hospital, she was denied access to the unconscious, possibly dying patient, protested, saw her briefly and was told to return next day. She stood her ground; more senior staff were called to eject her, but she kept saying, “Non.” Having acquiesced in medical authority in her father’s case, with lethal results, she wouldn’t leave her mother this time, no matter what the doctor ordered:

There was a French shrug, a long frown of disapproval. I could see myself through his eyes, a dishevelled, hyperbolic, out-of-place woman with a chipped tooth and bags under her eyes. I stayed the night . . .

The ability to see herself through others’ eyes is one of Nicci’s most striking qualities as a writer.

Immersion in her father’s condition — and caring for dementia is an immersive experience — leads Nicci to wonder whether she too is suffering its early onset: “When does forgetfulness that is natural and part of getting older become something more sinister?” For an answer, she goes to the Kensington and Westminster memory clinic run by Dr Claudia Wald, a consultant psychiatrist. There Nicci has her memory tested, thoroughly and scientifically. She gets quite a few answers wrong; even as she remembers the name of the Prime Minister, “I am talking in an oddly jocose, self-conscious manner that I don’t like at all.” At the end, the doctor delivers her verdict: “You’re fine.”

“She feels a kind place to be,” Nicci says of Dr Wald, whose wise remarks glitter throughout her book. I can endorse that judgment: she is also my parents’ psychiatrist. Nearly three years ago, my father, Paul Johnson, was diagnosed with Alzheimer’s and vascular dementia by that same Dr Wald. As a family, we had lived with his gradual decline into this terminal and incurable illness for longer than that, but it is only when the sentence is delivered that its finality sinks in.

He was — still is — a historian, among other things. There is a particular poignancy in a man who has lived all his life in, by and from his memory being deprived of it in old age. Nicci quotes St Augustine’s Confessions, at the dawning of introspection in Western civilisation: “All this goes on inside me, in the vast cloisters of my memory. In it are the sky, the earth and the sea, ready at my summons . . . In it I meet myself as well.” My father’s cloisters of memory were once among the most capacious of his generation. Now his world has contracted to his home, his carers, his family.

And his self? Is it still him? Yes, of course it is, but what is the irreducible essence of personal identity? What is left when one facet after another of a personality is stripped away? Much of Nicci’s book is devoted to exploring the answers to such questions. She tells dozens of dementia stories; she visits residential homes, hospitals and clinics; she talks to patients and professionals, carers and companions, artists and musicians who bring the seemingly lifeless back to life. Though its subject matter may seem the most depressing one possible, this is by no means a depressing book.

Those with a genetic disposition to dementia — and for most of us, there will be at least one member of the extended family — will shudder at the thought of it. With advancing years, it becomes the shadow that is just beyond the field of vision, a spectral presence at our feast of worldly pleasures.

Not long ago, I was on a London bus with a suitcase packed for a trip to Manchester. I told myself that I would not forget it, that to leave it on the bus would be disastrous. Having had this conversation with myself, I saw my bus stop at a Tube station approach. And then, as I rose, a text appeared on my phone that completely distracted my attention. It was not until I had traversed the capital by Underground, that I realised: I had indeed left my case on the bus. It was a nightmare, but fortunately for me I eventually located the suitcase many miles away, at the Metroline bus garage in Uxbridge. There a kindly young member of staff, Mathilda, was waiting for me to collect it.

As I rode through Betjeman’s Metroland, past RAF Nissen huts into the landscape of my childhood, I could not banish the thought: was this egregious lapse of memory the first warning sign of impending dementia? Had I, who as a teenager had once given a simultaneous display of 15 blindfold games of chess, now found my memory so unfit for purpose that I was incapable even of travelling from A to B without losing a suitcase?

Like Nicci Gerrard, I was probably succumbing to “worried-wellness”, a characteristic of the children or grandchildren of the afflicted. As a society, we should be worried about dementia, but in a constructive way that accepts its ubiquity, if not its normality. We cannot cure Alzheimer’s or the other forms of dementia — yet. But we can treat them and ameliorate their symptoms; with the best care, people can slow down their own deterioration for years.

When I first met Iris Murdoch in the mid-1980s, she was already eccentric but still writing some of her best novels and philosophical works. By the time I saw her last, a decade later, she was clearly in the grip of Alzheimer’s, though she was not diagnosed until 1997, two years before she died. Her husband John Bayley’s memoir, later made into the film Iris, did much to remove the taboo surrounding dementia. They were followed by the late Terry Pratchett, Prunella Scales and hundreds more.

To conclude, two images of dementia. The first is recounted by Nicci Gerrard: an old man standing at a busy junction in North London, waving a fork at the passing traffic. Assuming he was demented, people ignored him, but he had in fact been a psychoanalyst and later a musicologist. She does not name him, but he was evidently the late Alan Tyson, a leading expert on Mozart and Beethoven. Almost certainly, in his own world, he was hearing and perhaps conducting their music.

The second image is my own: a frail Margaret Thatcher being helped to a seat in Westminster Hall by Tony Blair and Gordon Brown. It was 2010 and she had come to hear a lecture by Pope Benedict. Her mind was failing but her spirit was undaunted.

So, yes, I’m afraid we do need to talk about dementia — much more honestly than we have done so far. About the financial cost (there already is a dementia tax, disguised as spending on the NHS and social care) and about the human cost. What does dementia teach us about love? Above all, this: most of us will need our wives, husbands, children and grandchildren to look after us one day. So we had better love them now as we hope they will love us — unconditionally.

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