Most of us will know, or have known, a loved one with dementia. As memory slips away, it can take with it language, knowledge and even selfhood. But something beautiful can still remain, writes Noga Arikha.

The experience of dementia is sadly common. According to the WHO, around 55 million people worldwide are living with it now – and those are the known cases. In the UK, there are over 600,000 registered patients. The numbers increase as the population ages: even though dementia isn’t necessarily associated with old age, the statistical likelihood of developing it increases hugely as one gets older. Dementia is an illness, or rather, a family of illnesses, all of which have in common the destruction of neurons by way of the dysfunction of proteins that make them up. This physiological causality is certain, even though its complexity is such that it is not yet understood enough for any of the many treatments that have been researched and tried to stop the damage as the proteins go rogue.

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And beyond the physiology, there are the symptoms, the disruption in lives and relationships, the massive, visible effects of the cellular blight that goes on beneath the skull. The disruption is gradual: dementia is not a state. It is, like most things, indeed like all of life, a process, one that progressively results in the disruption of life. The sense of time and place, appetite, memory, and more, gradually become dysfunctional, out of synch with each other and with the rest of the world. Reading and writing are unlearned. Motor control becomes tenuous. The self is unwound, its layers dismantled, and as the past becomes illegible, so the present ceases to make sense, and the future becomes an impossibility.

If you are reading these lines, it is likely that you are well, and cognitively functional. But you may know someone who has dementia, or be close to someone who has a family member affected by it. Many of us, in short, know what it is like to contend with those whose cognitive functions are being dismantled – in other words, the phenomenology of dementia is a sadly familiar trope. Yet it is a complex phenomenon and an intractably strange experience, and it bears further, considered exploration. I wrote about this experience in a recent book that explores how the self studies itself, and how it loses itself: initially centered on patients at a unit of neuropsychiatry, on their stories, the doctors examining them, and the science that could help understand their cases, it became also about my mother, whose dementia began to develop as I was writing.

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Memory is not at all akin to a storage system: it is made of patterns that change with each reactivation. It is close to imagination – in fact, the loss of memory goes along with the loss of the capacity to imagine.

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What is it like, then, to be close to someone whose bearings gradually disappear, and whose memories gradually disintegrate? What is disruptive is not only the disappearance: it is the gradualness of the unwinding. For it reminds us of how constructed are the grounds of ordinary experience, of how potentially fragile are our ordinary bearings, and of how shifting memory is. In dementia, the first cerebral areas to be affected tend to be those that concern memory. In our healthy everyday lives, we may lose sight of the fact that memory is a constructed capacity, because, however imperfect, and however much we forget, it is operative at each instant. It ensures the congruity of the present with what has passed, enabling us to plan as well as to project a sense of continuity on our lives, our projects, and our very sense of self.

Memory is not a simple entity. It is a highly complex, dynamic set of processes. Various cerebral networks are involved in these processes. Events or information that are the objects of attention – names, dates, the shopping list for dinner tonight - are encoded as short-term, or working memory that then can become enriched, elaborated by association with other memories. The more richly connected the object of attention, the more likely it is to “stick”, and eventually to become consolidated as a long-term, or episodic memory – that which ends up constituting our autobiographical self, and the basis for the meaning-creation we engage in thoughout our life, by fishing out old memories. Memory is not at all akin to a storage system: it is made of patterns that change with each reactivation. It is close to imagination – in fact, the loss of memory goes along with the loss of the capacity to imagine. Memory informs our very ability to predict, and to make sense of percepts and feelings. We are constantly filling in perceptual gaps to maintain a whole picture of ourselves within the world. And so we can imagine we have lived events that we had only seen in a photograph, for instance: writing about one’s life is in effect to re-create it, as Nabokov enacted in his Speak, Memory.

Memory is at once robust and plastic, efficient and unreliable, constant and changing. It is also multilayered. Remembering a fact – what - differs from remembering place and time – what and when. Remembering faces differs from remembering places. And of course, feelings inform memory formation and encoding: we tend to remember better that which we care about most, just as we tend to care most about that which remains present to memory, however unconscious it may be - otherwise we would have little to care about. The past lives on as a spatially distant present, thanks to which we can envision a future. Meaning-making is emotionally loaded, and it is tied into all our senses, an outcome of the enmeshment of brain and body, of central nervous system and peripheral nervous system. We remember what we have sensed, and what we sense in the present can trigger past sensations, pleasures and pains. The body is what remembers.

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But all this – the stuff of what makes a life, the richness of time felt, spent and imagined, what makes a life feel actively, consciously lived, whatever its meanders and mistakes – all this falls away when memory processes are disrupted by the various dementias that can afflict the brain. It is hard to fathom that meaning should be biologically encoded – indeed when the first symptoms start appearing, it is rare for families to perceive a pathology at work. At first, my mother was just confused – a little more than usual, but her confusion was irritating rather than worrying. It was easy to wave away the signs – to not see them for what they were. Yes, we are biological creatures, as all creatures are, but we tend not to associate personality traits and variations in behaviour with physiological processes and microscopic cells. We may know that we are made of such processes and cells, that felt experience is biological, but this knowledge doesn’t extend to our felt experience. If it is easy to miss out on the first signs of dementia, it is because we respond to each other’s personalities, habits, states, looks and tastes, not to the neurological and physiological substrates of being.

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Memory dissolves like the clocks in Dalì paintings. Senses change. Time changes. Places are no longer readable. Written words cease to mean.

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As I write this, I can’t help catching myself in the double mirror that is the mind at work upon itself. For I know enough about memory to write here that knowledge is an output of encoded information that has, in this case, become semantic memory about the nature of memory - and to know that semantic memory constitutes knowledge of facts, ideas, plots. In turn, my knowledge that this fact about memory is a semantic memory is itself a semantic memory at play – one I share with others, have learned about through others, and am sharing here, using words that belong to a culture I was born into, typing on a keyboard made by others, to which I respond like others, activating my fingers appropriately thanks to my procedural memory. Semantic memory is collective. Episodic, or autobiographical memory differs from semantic memory - it is akin to a bunch of shiny treasures hidden in the recesses of the individual brain. But it can be shared too. And shared memory constitutes shared meaning. It is the ground for shared purpose – within a family, a community, a country, or indeed the whole of humanity. Without collective memory, there would be no language, and no ideas of the sort that I am writing here. No knowledge of neurology, and no doctors to tell us: she has a dementia.

When the pathology comes into view, an asymetry sets in between the person who is ill, and usually anosognosic – unaware of being ill – and those who know, and know that she doesn’t know. The shared temporality that is the basis for intimacy and community falls away. The center cannot hold. Memory dissolves like the clocks in Dalì paintings. Senses change. The when and where are sundered from the what. Time changes. Places are no longer readable. Written words cease to mean. Taste and smell shift, and the circadian clock is derailed. The physiological processes underlying dementias all involve a distortion in the interoceptive, visceral signals that constitute the sense of the body from within - they cease to be accurate representations of the organism. The brain is out of synch with the body it normally serves. The sense of agency is jeopardized. Volition becomes volatile. Accretions of knowledge, facts about one’s own and others’ lives, remembered thoughts and books, faces and films, meanings, past joys and struggles disappear. As if the lived self had never been. 

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The person afflicted with dementia can teach those around her how to live in a simplified present - memories be damned.

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At least, so it happened in the case of my mother, who had been a poet and continued to speak in perfectly rich and often hilarious sentences, just as they became devoid of linear sense, akin to bits of surrealist poetry I know now from readers of the book whose title – The Ceiling Outside – she, the poet, inadvertently gave me, that her unravelling and my experience echoed those of many others. Of course each person is different, each body and each collection of brain cells unique. But there are patterns. My mother was luckily serene throughout, more than she had ever been because there were no more anxiogenic thoughts and memories. And her emotions were mostly unaffected. She conserved her love of music. Intimacy was not lost, even as meaning and facts disappeared. This too is quite frequent: it is the seemingly eternal present of the biological being we are born as, before the advent of knowledge, language and conversation - a basic, infantile-like presence that seems to translate a core, basic selfhood. Emotions remained, especially joy, gratitude and surprise. Guilt and anger disappeared.

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The person afflicted with dementia can teach those around her how to live in a simplified present - memories be damned. It is an exercise in unlearning, giving up, relating in a wholly new manner. It is not easy. But there is no choice. One learns, one adapts, one suffers - and then one accepts.