Tthe year before my father died, he came with us to Sweden for the summer. He had lived with his dementia for more than 10 years at that point and – gently, gently, without thoughts – he was gradually disappearing, the memories that fell, the words that went, the recognition that faded away, in great decay. But he was very happy on that vacation. He was a man who had a deep love for the natural world and felt at ease in it; He knew the names of English birds and insects, wild flowers and trees. When I was a child, I remember that he used to take me to the choir in the woods near our house. Standing under the canopy of trees in the bright light of sound, he told me which song was the thrush and the blackbird. At least, I think I remember it, but maybe I'll invent it as a story to tell myself when I'm sad.
In Sweden, he collected wild mushrooms in the forest, went to a joyful shrimp party where he drank aquavit and wore a garland in his white hair, sitting with a palette of watercolors looking out at the lawn even though the brush had never arrived to paper. And one evening, we took him to a sauna: he loved the saunas because they reminded him of the time spent in Finland as a carefree young man.
Later, we helped him in the lake. It was a beautiful and soft sunset; in the fugitive light, the trees were piled up and the moon shone on the water. I remember the immobility, only the occasional womb of the water against the pier.
My father, old and frail, swam for a few yards and then began to sing. It was a song I had never heard before, I've never heard since. He was swimming in small circles and singing to himself. He seemed quite happy, happy, but at the same time it was the most solitary spectacle: as if there were no longer anyone in the world, only him in the shadows and in the silence filled with tears, with the lake and the trees and the moon and scattered stars.
The edges of the self are soft; the boundaries of the self are thin and porous. At that moment, I could believe that my father and the world were one; he was pouring into him, and he was emptying. His self-affirmation over the years, distinct from his dementia – was, in this moment of kindness, beyond language, consciousness and fear, lost and contained in the multiplicity of things and at home in the vast wonder of life.
Or this is what I now say to myself, three years later, trying to make sense of a disease that has the power to dismantle the self, which comes like a thief in the night to sneak into a house built for life, until the shipwreck and plunder it and undress it, giggling behind the broken doors. The following February my father went to the hospital with leg ulcers that were slow to heal. There were strict visiting hours and then, with an outbreak of norovirus, a virtual block of the ward, which meant that for days and days he was alone: no one to hold his hand, pronounce his name, tell him he was loved ; no one to keep him tied to the world. His leg ulcers were healed, but away from the home he loved, deprived of family routines and surrounded by strangers and machines, he quickly lost his bearings and his fragile grip on himself. C & # 39; is a gulf between care and "care", and my father fell into it.
When he finally returned home, he was a ghost of himself, skeletal, immobile, inarticulate and lost. No more saunas for him, no more forests and lakes and flowers in his hair; it was not at the twilight of the illness now but in its dark darkness. After several months of death radically slowed down, while the autumn turned into winter and with a strong cold wind blowing, he eventually left us. But against the memories of his terrible months gone by – the small room downstairs where he lay in a hospital bed waiting and waiting for nothing as the birds he loved came to the bird table outside his window; the routine of washing, feeding, lifting; nurses, doctors, carers and all the bureaucracy of illness and death; the sense of a dying mind and a body that crumbles and is not a thing to do about it – against this stifling and pulled out end, I put my father's memory in a Swedish lake, in peace, in the twilight and that mysterious fusion of the self with the world.
I used to say that we are made of our memories, but what happens when memories are lost? Who are we then? If we're out of mind, where did we go? If we've lost the plot, what happens to the story we're in? Even to the bitter end, I never thought that my father was not himself, even though at the same time I felt I was lost. He had disappeared but remained; he was absent and yet strongly present. C was something that survived beyond language and recollection, perhaps a trace, like furrows that life had brought him in the way a river sculpts in the rock. He still had his sweetness; his past lived in his smile, his frown, the way he raised his thick silver eyebrows. He lived within us. He may not have recognized us, but we could recognize him. I don't know what the word for this indelible essence is – once upon a time, it would have been "the soul".
Civilization, control and security form a crust on deep waters. In all of us, often pushed into a corner of our mind, there is the restless awareness of how fragile our hold on ourselves is, how precariously close we are to our minds and bodies.
Dementia – all the many and often heartbreaking forms of dementia – makes us wonder what it means to be ourselves, to be human. It is often called the plague of our time; is the "disease of the century".
People talk about dementia as if it were a time bomb. In truth, the bomb exploded a long time ago, but in silence, in private, out of sight: a hidden demolition job. Men and women living with dementia are often missing, forgotten and denied by a society that values independence, prosperity, youth and success and turns away from vulnerability. They are the memories we age, we decay; death comes to all of us in the end. Of all the diseases, it is the one we fear most now. It is "the history of suffering" – and like suffering, it lasts.
And this suffering spreads, from the individual, to those who take care of them and of them, to their community, to the country as a whole. Dementia is, as a doctor told me, "profoundly disrespectful to patients, caregivers, health systems, social assistance … it doesn't fit the structures we've created".
There can be no other disease so defined by its impact not only on those who live with it, but on those around them. Its meanings are physiological, psychological, social, economic, political and philosophical. Its costs are not quantifiable – I do not mean the financial costs, even if they are enormous (the Alzheimer 's Society estimates that, in the United Kingdom alone, the cost is 26 billion pounds and, in the world, of 818 billion dollars – and constantly increasing – the cost of cancer, stroke and combined heart disease), but the costs in human terms: shame, confusion, fear, pain, guilt, loneliness. It causes profound moral questions about the society in which we live, about the values we hold and the meaning of life itself.
At the same time, we are the first generation to really consider it. When I was a child, he was barely visible and rarely recognized. My grandfather on my mother's family side had dementia, like my grandmother from my father. Although I knew about it, it was only in a dull way: they became figures that had once been vivid in my life but were now gradually being erased. Maybe I was embarrassed by them, these people who were authority figures and now they were so helpless, and I was also a little sick about the bodily nature of the disease, but I didn't think about what it was for them or let me imagine the tragedy that it was taking place, sometimes in the form of a bad farce. It was a stigma, a source of shame, fear and denial, and it went on behind closed doors. The word D.
We are aware of this now in a way radically different from 20 or 30 years ago and this awareness brings social, political and moral responsibility. Now we can see what was hidden before. In the 70's, in the United Kingdom there were about 300,000 people with dementia spread throughout the country. Today, there are three times that number.
In 25 years, there will be something like 1.7 million. In the United States, the incidence of death from Alzheimer's disease alone has increased by 55% in the 15 years between 1999 and 2014.
Enter a hospital ward, even a general ward, and many or most beds are occupied by people with dementia. Enter a residential home for the elderly. Look at the obituaries. Read the news, the edifying ones and those that make you want to howl in pain. I barely know who doesn't have some kind of intimate connection to the disease. It's all around us, in our families and in our genes; perhaps in our own future (about one person out of six has more than 80 years old dementia, and the older the age, the higher the chance, it is as if there were a sniper in the garden). If it's not you or me, it's someone we love.
We can no longer speak of "them" – it is "we" now, and the way in which we face this challenge becomes a question of our collective humanity. Because in a time when the autonomy and the agency are so appreciated, there are questions that we must ask urgently: what do we owe to others and what do we owe to ourselves? Who cares? Why do some people seem to care less than others? Why are some people ignored, invisible, neglected, abandoned?
What is human being, and what does it mean to act in a human way? The word "we" is used with persistence and ease. It's about community, democracy, collaboration. It claims a collective voice, as if we were, as the politicians say, all in this together. In the same boat – well, yes, but some people are in the first class cabins with sea views and cocktails at dinner, others are in the hold and still others are not seen at all. The light does not fall on them; we do not even realize that we are on board with us. And some have fallen into cold water and are drowning out there in the darkness, while the band plays.
Those we don't see. To those who don't care Who we don't cry. Those we neglect to the death … If my father had been an important man, I think he could have been treated differently at his time of greatest need – and, of course, it was important, but only for those people who knew and loved he and whose lives were tied to his. A sense of the preciousness of every life should be designed in a system, in a society, so that we do not need to feel identifiable to save ourselves from something else. We all have an obligation to each other – even for the people to whom we are hostile – because the world is "given to us in common", to share and transmit.
It's not me without you, no me without us. We are at the mutual mercy, in the end, and we should have a passionate and unequivocal commitment for everyone, for everyone – honoring them not for love but for common humanity.
In recent years I have reflected a lot on the meaning of rules and boundaries: the walls of institutions on which the rules – you won't do it – are posted; the fences around the gardens, the doors (which can be closed quickly or opened), the boundaries (which are often more porous than I understood), the minds (which are also embodied); the bodies (which both contain us and yet expose us to the world), I and the we, we and them, ourselves and others. How connected are we to each other and how separated we are? To what extent are we private, discreet and to what extent are we part of a public, community life? How much can we – should we – rely on others and rely on us?
What are our responsibilities towards the world in which we live and what are our responsibilities towards ourselves?
Exploring the meaning of dementia and its excruciating losses is thinking about how much we are responsible for the suffering of others as societies and individuals: what we owe each other, what we care about, what matters in this world that we all share. Who cares
Steve Gentleman (the name is accurate), professor of neuropathology in the Department of Medicine of the Imperial College of London, is a brain detective. Look for diseases, shrinkage, cavities, hardening, white lesions in the limbic system, amyloid deposits. I ask him if he ever feels – I fight for a right word, I can't find him – strange about dissecting the brain: strange for what he tells us about identity, and why in the end all the urgent business of being human, everything despair, anxiety, appetite, terror, love and joy reside in this piece of meat.
He smiles and shakes his head. He has no faith – perhaps it would be difficult if, day after day, he cuts off his brains, cutting bites of executive functions, episodic memories – but he is full of wonder at how infinitely complex, subtle and plastic the brain is, and how mysterious it still is for us . Because, after all, we are not just our brain: our brain is in a body, it is part of it and in the community. There is no end to its possibilities.
Alzheimer's disease leads to nerve cell death and loss of brain tissue. The abnormalities include beta-amyloid plaques, tau protein tangles, loss of connection between cells and inflammation. The cortex shrinks and the ventricles become larger. Over time the brain shrinks dramatically until each area is affected. However, some dissected brains show no signs of dementia even when the person has been diagnosed with the disease, while others are severely damaged even if the person appears to have shown no signs of cognitive impairment. The link between observable deterioration in the brain and the way a person acts, feels and communicates in the world is not simple, and this is because the brain lives and works in a network of reciprocal connections. Looking at the brain cannot tell us everything we need to know about the brain: it is much more than itself – a brain in a body in a particular life. Part of Steve Gentleman's research is to compare the brain he observes with the lifestyle of the man or woman to which he belonged, to look for models that begin to explain why some people are quickly demolished by the disease when other people are able to withstand its attacks longer. Exercise, diet, geography, career, mood, relationship status: all these things can make a difference in how a person responds to what is happening in the intricate mazes of the brain.
The brain on its cutting board is inert, a lifeless beige thing, but the neuro-images of the living brain show its flamboyant connectivity, its wonder and its mystery. Functional magnetic resonance imaging (fMRI) measures brain activity by detecting changes associated with blood flow. Images – motionless and moving – are like the northern lights, like coral reefs or flowering trees, in a kaleidoscopic flow. It may seem, looking at these iridescent patterns, that here is a brain in love, in fear, in envy and in a crumb of hope. But brain scan images are not just photographs of the brain in action; they are representations of the areas that work at their maximum. It's a bit like looking at the city of New York from a helicopter and seeing how the crowd moves through the streets: you learn a lot about the movement of people over time and in response to events, but you don't really know how it is to be in New York. And the brain is not the mind.
However, the image of a brain damaged by dementia is dismayed: gray dead spots amid glorious color.
Dr. Claudia Wald is a consultant psychiatrist at Kensington & Chelsea and Westminster Memory Service, which provides assessment and diagnosis of dementia and ongoing support for people with memory impairments. Memory clinics like this are based on models from the United States and were established in the early 1980s in every region of the country. He sits in his pleasant room, the sunlight falling through the window. She is tall and with an open face, and her voice is reassuring; feels a nice place to be.
"People of your age", he says, "begin to fear their faded memories. With age comes tiring thought and memory": a lot of forgetfulness is linked to age and not problematic.
We all forget when we age, and this is normal, natural, part of the aging process. Dementia is not natural, it is a disease.
But still, c & # 39; is a gray area, a place of uncertainty and trepidation, when forgetfulness deepens – when, as many people with dementia say, something seems "not quite right".
In her diagnostic work, Claudia Wald is looking for changes in behavior. Almost always, the initial evaluation is done at the person's home, where the atmosphere is more relaxed, less artificial and where you can learn a lot from the context (the state of the house, the fridge). It takes a detailed clinical history and uses scans only where there is a diagnostic uncertainty: "I am trying to find out who the person was; I am looking for a change." You have to assess which part of the memory is affected: memory long-term? Language? (The language center is near the memory center.) "The word bank goes away," he says, then adds, "This happens to us anyway."
Remembering the names? Faces? In its diagnostic criteria, at least two domains must be influenced (language and memory, for example, memory and behavior, or memory and sense of orientation), before it gives a formal name to the symptoms it finds.
Among the inevitable aging process and the clear diagnosis of dementia is the marshy area of mild cognitive impairment (MCI), an intermediate stage that some consider a pathology of natural and other oblivion as a useful indication of problems future. Because there is no scientific boundary between disease and normality; the lines can be drawn, but their exact position is a matter of evaluative judgment. "It's a gray area," says Wald. "And at what point in the gray area is the treatment appropriate? What is" normal "when we age?"
He will often find that the circumstances have changed, so that the supports were ripped off: the death of a spouse who had compensated for the failure of cognitive function, going to the hospital, breaking a leg, moving the house. "These things can highlight difficulties that were hidden." Depression, he says, can be a precursor and a risk factor and can be very difficult to treat. "Old age brings with it profound losses: the loss of a spouse, of a family, of friends, of work, of health. C & # 39; is an enormous solitude and fear of death."
All this means that the diagnosis is often not simple, and often it is the relative or carer who notices the change – why how can I know that I am slipping?
"A diagnosis," says Wald, "is only the beginning of learning to live well with this condition. There may be a paradoxical comfort from knowing that there is a name and a reason for this changed sense of self, but some people don't want to know. "
I noticed a subtle change in his ways. He takes the pen: "Are you ready?"
My racing heart, my sweaty hands. It's like going back to school and taking an exam – except that I am the test that I don't want to fail.
"Remember these words," she orders. & # 39; "Apple & # 39 ;, & # 39; penny & # 39 ;, & # 39; table & # 39;. I will ask you for them later."
I nod. Apple, penny, table. Apple, penny, table.
"I'm going to give you an address I want you to remember. David Barnes, 73 Orchard Drive, Kingsbridge, Devon. Do you have that?"
"Yup." I'm holding the lines in my head, repeating them to myself. Apple, penny, table. David Barnes, 73 Orchard Drive, Kingsbridge, Devon.
He asks me for the date and I've been wrong for a day. My heart beats faster. He asks me who the prime minister is and I'm right, even though I'm talking in a strangely playful and self-conscious way that I don't like at all. My face seems tense.
He asks me to count at seventy percent.
I've never been fast in math. "Ninety-three", I say. "Eighty-four six.
"Seventy nine." Apple, penny, table. "Seventy two." David Barnes.
Then I have to give as many words as possible starting with "P". My mind falters, but I shoot, frantic; my voice goes out and I'm foolishly smiling. The words come as multisyllabic Latin swarms – parsimonious, peri-menopausal, penitential, patriarchal, pertinacious, programmatic, plausible – with the occasional home-run of simple: put, plant, vase, print, poppy, potato, poetry. When I reach the end of my minute, I realize I have forgotten all the ph.
I didn't tell her how I find it increasingly difficult to recognize faces. I didn't tell her that sometimes I can't see what's in front of my eyes.
I repeat the address, and the burden of keeping it in my mind rises from me. I say: "Apple, penny, table." My heart rate is slowing down. He asks me to draw a clock. I do it and then I see, horrified, that I put one at midnight and midnight nowhere.
"You're fine," says Claudia Wald. I know I really am, but I want to cry.
The illness crept into my father's life slowly and quietly, without broken windows or alarm bells, only occasional rustling in the night, a creak on the stairs, strange things that were missing from their usual place but not missed. I don't know when he suspected and I don't even know when we did it, or that it came before. His mother had had dementia at a young age; even his older sister. And my father had always been distracted – which is not an indicator of dementia, but it looked like one, as if his future were woven into his benevolent and abstract personality, in the way he could disappear into his secret world where no one could follow .
Thick fog. His vagueness became a kind of loss.
His cheerfulness (perhaps a form of stoicism) was pierced by an anxiety that sometimes ruined his final decade, even when it was – this is one of those phrases that take everything unless it diminishes – "live well "with the condition.
Time heals; time vanishes. In those flowing years there was no such thing, a particular event, although I obviously look back and recognize the signs. When he tried to remember the name of a flower that grew in the hedge.
When his hand, holding a cup of tea, he trembled. When he lost his hearing aid again, he lost track of what he was saying, he lost his way (but we all do). I scraped the car against a gate. Leave the key in the lock. When we asked him now and he told us the cricket score (but he was always distracted). When on his face I saw an expression that I didn't recognize (but it was always a little mysterious: it was just out of reach). At the beginning we didn't talk about it: when is the moment when you say, do you think something is wrong, that your memory is starting to betray you?
A time came when we all knew it. He went to see a doctor; he had his memory test; in the end he received the sentence, covered with reassurance, strategies and tact, but still it was like this: you have dementia. For me, it wasn't a blow to the solar plexus, more like a slight push that pushed him on that mobile line – from really knowing to really knowing. In fact, I can't even remember hearing the news.
• This is an extract modified from What dementia teaches us about love by Nicci Gerrard, published by Allen Lane on April 4th (£ 16.99). To order a copy, go to guardianbookshop.com or call 0330 333 6846
• Nicci Gerrard will speak at the Emmanuel Center in London on April 1st. Tickets are available on howtoacademy.com