Short Essays at the Limits of Life

Becoming-With Dementia: Olding, Personhood and the Politics of Care

Introduction

In this episode I explore how dementia is being co-fabricated by biomedicine, culture, and the politics of care, and how these forces shape the ways people, families, and practitioners imagine and experience dementia. My aim is not to condemn the biomedical project, but to hold together two seemingly contradictory impulses: to embrace and be affected by the being and materiality of persons with dementia, and at the same time to continue the pursuit of prevention, management, and cure - without cancelling the personhood of people with dementia in the process.

My argument arises from decades of living and working with ageing and dementia, from my early encounters in nursing to research collaborations in dementia science (Latimer 2025). Across these experiences I have seen how dementia, far from being a singular biomedical condition, is a social and political formation that touches what is most valued about being human: our capacity for mind, relation, and meaning.

Experiencing Ageing

My awareness of ageing as a matter of material doing began as a child in the early 1960s. Dressed in my toy nurse’s uniform, I “helped” in a small nursing home near my house in Wimbledon. I can still recall the dim rooms, the smell, the almost translucent skin of the women sitting by their beds in a perpetual twilight. They seemed to exist outside time, “stabled” as if waiting for life to end. One tactile encounter - cleaning a frail body, feeling the paper-thin skin - impressed upon me the profound reciprocity of touching and being touched (Merleau-Ponty, 1962).

Years later, working as a cleaner and then an auxiliary nurse in an NHS geriatric hospital, I saw a brighter institution but the same quiet erasure of old age. The residents were alive and fed, but not included as participants in the world that surrounded them. Their liveliness stopped at the limits of care’s organisation. As Deleuze and Guattari (1991) wrote of “the weary old ones,” they seemed to speak only within their “hollow heads.”

These encounters taught me that how ageing is lived and known is historically and politically situated. How people become “deeply old” (Turner, 2009) is a process: not merely a natural outcome of biological decline, but an affect of institutional, cultural entangelments that figure deeply old people as less than fully human.

Dementia as Cultural Parade

In late modern culture, dementia is paraded as the ultimate disordering of personhood (Latimer 2018). Margaret Lock (2013) notes that dementia stands as the most feared emblem of ageing, threatening the sovereign, autonomous subject so cherished in Euro-American thought. For example, philosophers such as Dworkin (1986) argue that dementia nullifies autonomy - that once the mind is lost, the person is gone. Politically, dementia has become shorthand for social breakdown: an epidemic burdening families, economies, and health systems. This narrative of crisis legitimates new markets in prediction, detection, and prevention. It situates dementia as an enemy to be fought, an intrusion into the proper order of modern life.

Yet this parade of disorder does more than stigmatize; it reaffirms a particular version of personhood - rational, productive, self-contained. The figure of the “abject dementia subject” is produced precisely through these discourses: an emptied vessel against which the heroic, biomedical, and youthful self can be defined.

The Biomedical Re-Staging of Dementia

Over recent decades, the convergence of demographic forecasting, neuroimaging, and post-genomic science has made dementia a powerful biomedical object. Laboratories and clinics are busy “sorting out” (Bowker & Star, 1999) the disorder - classifying subtypes, searching for biomarkers, expanding categories such as mild cognitive impairment. This proliferation, what Beard and Neary (2013) call “nosological creep,” reveals dementia’s diagnostic fragility even as it fuels an industry of measurement and hope.

Ethnographic work in laboratories and memory clinics (Hillman & Latimer, 2019; Milne & Latimer, 2019) shows how dementia is stabilized only through the continuous shift between genes, brains, and persons. In the lab, human experience is reduced to the behaviour of mice and worms; in the clinic, dementia is enacted through interactions between scans, test results, and family narratives. What often disappears in both spaces is the minded, situated subject - the person in relations.

At the same time, new neuro-vitalisms proclaim that the brain is plastic and that ageing, even dementia, might be malleable. Public health campaigns promise that through activity, diet, and education we can “retrain our brains.” The dream of neuroplasticity merges with neoliberal imperatives to stay youthful, productive, and self-managing. In this imaginary, decline becomes failure. Dementia becomes not simply a disease, but evidence of moral and bodily lapse.

Becoming-With Dementia: Olding

Contemporary cultures celebrate youth, speed, and innovation, while deep old age is rendered monstrous - a space of unbecoming. Yet ageing, as Ursula Le Guin (2017) reminds us, is an existential condition, not a failure of will. To deny old age is to erase life itself.

To name this doubleness - the material unbecoming of the body and the ongoing becoming of being - I use the term Olding. Unlike “ageing,” which implies decline, Olding foregrounds relational and situated processes of living-with time. It acknowledges that persons are continually made and unmade through their relations - biological, social, and political.

To become-with Olding, following Donna Haraway (2016), is to accept interdependence and vulnerability as conditions of being. It asks us to stay with what seems slow, incoherent, or unbecoming, and to see in it other modes of humanity. Wallace Stevens’s late poem “Lebensweisheit Spielerei” captures this poignantly: as the “sunlight falls weaker and weaker,” what remains are the “finally human,” the unaccomplished, those who touch us “with what they are and as they are.”

Olding invites us to read such impoverishment not as loss, but as revelation - a stripping back of the adornments of productivity and self-control that modernity equates with value.

Rethinking Personhood

If dementia threatens personhood, perhaps it does so only to expose its limits. To live well with dementia, we need relations of care that place “under erasure” (Derrida, 1988) the assumption that personhood resides solely in autonomy and cognition. Dementia breaches the taken-for-granted forms of world-making that organize identity and belonging. It calls us to imagine persons not as isolated minds, but as relational, distributed, and contingent beings.

The philosopher’s or scientist’s reflex is to interpret dementia as a deficit - an absence of reason. But what if we understood it instead as other ways of being in the world? This is not to romanticize suffering, but to notice that what appears as disorder may also be an effect of emplacement - the fit, or lack of fit, between a person and the world that surrounds them.

Scenes of Presence

Film and television occasionally glimpse this alternative imaginary. In Iris (2001), when Iris Murdoch, deep in Alzheimer’s, sits on a beach arranging pages beneath pebbles, she seems to create a new kind of order - a different writing. When her husband and friends interrupt, asking her to sign her “real” book, she refuses. Her gesture releases the pages to the wind, as if to insist on another kind of meaning, another kind of authorship.

A similar moment occurs in the BBC’s Our Dementia Choir when Mark, a man with early-onset dementia, overhears his wife and the presenter speak about his decline. He turns and sings “Build Me Up Buttercup” - “why do you build me up just to let me down?” In that act he reasserts himself as participant, as a feeling and expressive subject. Yet those around him fail to see his message. His world-making passes unnoticed.

To attend to such moments is to practice what I call keeping presence - recognising the ongoing capacity of people with dementia to participate in the social, if we are prepared to meet them where they are.

Gladys Wilson and the Ethics of Connection

The short film of Gladys Wilson and therapist Naomi Feil (2009) shows what such meeting might entail. Gladys sits alone, withdrawn, almost absent. Naomi approaches her not with fear but with curiosity and bodily attunement. Discovering that Gladys once sang gospel, she begins to hum the old hymns. Slowly Gladys responds - tapping rhythm, then singing, then meeting Naomi forehead to forehead.

This encounter embodies what Letiche (2009) calls radical relatedness: the reversibility of touching and being touched. For a moment, the boundaries between therapist and patient dissolve; they become a duet. It is not cure, nor recovery, but co-presence - a fleeting renewal of world-making.

Such moments, however brief, trouble our certainties. They reveal that dementia is not simply a loss of self, but a shifting relation among bodies, memories, and affects. To care, then, is not to restore the old order but to dwell with uncertainty, to allow the encounter to change us too.

Living With, Not Against

We cannot and should not abandon the search for biomedical interventions that may ease the suffering associated with dementia. A disease-limiting drug, or advances in regenerative medicine, would be welcome. Yet we must also learn to live with dementia - to dwell with ageing as a mode of being together differently.

Around the world, experiments in such dwelling already exist: Dementia-Friendly Communities in Japan, Dementia Villages in the Netherlands, Alzheimer’s Choirs, the Alive Inside movement linking music and memory. These initiatives hint at an ethics of coexistence rather than conquest.

Against the seductive “new dynamics of ageing,” which celebrates perpetual youth and productivity, I propose solidarity with the unbecoming. This means recognising that vitality and worth are not confined to speed, creativity, or economic contribution. It means embracing slowness, confusion, and dependency as forms of life that reveal our shared vulnerability.

To be alongside dementia is to resist the neoliberal demand for constant self-optimization - the “automotility” (Latimer & Munro, 2015) that makes us endlessly ready to adapt and perform. Dementia, in this light, may even be read as a refusal: a quiet revolt against the tyranny of coherence and productivity.

Conclusion: Touching and Being Touched

Thinking and becoming-with Olding helps us rethink what it means to be human. It calls us to touch and be touched by ageing and dementia as conditions of existence rather than exceptions to it. This is both an ethical and a political challenge. It asks that we design worlds - clinical, social, and cultural - that make room for those whose modes of being unsettle our ideals of personhood.

In the end, dementia exposes the fragility not only of memory but of the social imagination that equates humanity with mastery. To dwell alongside the so-called unbecoming is to glimpse another kind of presence - tender, partial, sometimes wordless, yet deeply human.

As Wallace Stevens wrote, in the fading light “each person completely touches us with what they are and as they are.” To let ourselves be touched in this way may be the beginning of a different politics of care - one that no longer seeks to conquer dementia, but to live with it, attentively, responsively, and with grace.

Dear Hanif

I am about halfway through Shattered and wanted to write to you about what you say about the loss of your hands. 

I am also a writer, of a different kind to you. I was born in the same year you were, and lived in South West London, but am white and female. I too grew up in a time of experimentation, adventure, countercultures and enormous risk-taking. My family read everything –Nausea, Last Exit to Brooklyn, The Catcher in the Rye, On the Road, My Secret Life – us teenagers stayed up all night smoking weed, dropping acid and blueys, listening to Led Zeppelin, Pink Floyd and Frank Zappa - watching great movies full of sex and violence and ideas of revolution. We thought we were so cool.

I also, for a time, lost my hands. In 2012, I was Professor in Sociology at Cardiff University. I was writing a book about genetics, the clinic, children and families. The university had cancelled my sabbatical and given me lots more teaching to do, so that those colleagues who hadn’t published enough to be submitted to the REF (the evaluation of a University’s research through which it is rated and allocated funding) could write what they hadn’t yet managed to write. I felt aggrieved but I was a ‘team player’. But I was at that point of writing the book where all I could do was keep going – writing the book was not a choice, it was compelling. 

It was an extremely stressful time and I, to put it simply, overworked. After I’d sent the first draft to the publisher I had to have a small operation on one of my hands, for carpal tunnel syndrome. Within days my body reacted, and inflammation flared through me. They called it acute inflammatory polyarthritis. My brain went to fudge, my jaw couldn’t open or chew, I was very ill, doped on tramadol and misery. Every joint, every tendon, was full of fire and fluid. The pain was excruciating. I lost the use of my hands. I remember thinking I wanted to die, I wanted to kill myself. I felt I’d lost everything, everything that made me who I am -- I couldn’t bear it, I couldn’t bear the thought of losing myself and losing my world – of becoming a cripple. I had researched and taught about stigma and disability - I knew what the odds were in terms of keeping my dignity, the sense of my being a full person. 

Nobody quite knew what had happened. I had been diagnosed with an autoimmune disease called systemic sclerosis a few years before, an illness that manifests in the hands as well as other organs of the body. But the tests and the specialists at the time considered I had the more benign type, not at all dangerous, nothing a few lifestyle changes wouldn’t sort out. Haha! how wrong they were.

What I wanted to talk to you about is about your and my experience of losing our hands and handedness. How in writing this experience you can maintain, or is it regain, your dignity, your sense of being a full person.

Being human, Heidegger would say, is being handed – language is handed - hands open and close doors with hand-les, we hand-le pain, marriage, children, horses, difficulties, disappointments, lovers – cups and mugs, pots and pans, hammers, all have handles. The fatty pouches above our hips we call love handles. On and on.

It is unimaginable – the experience of losing your hands - quite, quite devasting. As you so vividly describe hands do everything - hands break bread, fine tune masturbation of self and others, stroke, scratch, shake, sweat, lift, move, express, touch, pick, wipe – they peel prawns, dip them into succulent, shiny mayonnaise and lift them into your mouth – they wrap fingers around a cold glass of beer and raise it to lips. Hands smooth, cut, shake, grip, pluck, chop, throw, punch, swim, stroke, slam, wave, smack, caress, tickle, turn, feel our way in the world. But always, like writing, collaboratively: hands articulate with arms, eyes, elbows, mouths, legs, spines, brains - they gesture with language and emotion and culture, and talk with each other, in thought, anguish and prayer. Our futures, fortune tellers tell us, are written in our hands.

We create technologies that extend our powers for and with our hands - hands write with pens and typewriters, paint with brushes and pencils, cook with knives and saucepans, brush with brushes, wash with soap and flannels, make music with flutes and violins. On and on and on. Hands connect and disconnect us. We become-with these fine instruments, our hands. Our brains rely on and live in our hands. We have and make worlds with our hands. Losing our hands is, as you so vividly help illuminate, is like losing life itself. 

When very ill I met a wonderful consultant, Dr Joshi, who said to me “I know what this is, I’ll have you right and back together again - it’ll take a couple of years.” He pushed a horse-sized hypodermic full of cortisone into my bum and gave me new drugs and sent me off to dieticians, physios and OTs. Susie Botha, a specialist hand occupational therapist, caressed my hands and my spirits, and built me splints for working, splints for resting, splints for sleeping in, and gave me gloves for warming white fingers and containing their puffiness – like yours Hanif, they were like sausages. All this to help the joints in my hands mend, help prevent too much long lasting distortion and deformity. 

Susie explained about the Cortical Homunculus - how hands, lips, tongues take up enormous areas of our brains relative to their size - so it is no wonder we feel that when we lose our hands, we lose our world. Later in my working life I met a doctor and bioengineer making bionic arms and hands – he thought that 

most people in the world would rather lose their legs than their hands. I don’t know if that is right, but I knew what he meant.

As you so beautifully describe, it takes a village to help get through such devastation – yours so much worse than my own. I was so moved by how you and the other patients, Miss S and Maestro in particular, as well as nurses and physios, and theirs and your technologies (the voice control writing, the Lokomat), built a new world together. How family, colleagues and friends gathered and held onto you and found new ways for you and them to be. How you show all living and dying to be always collaborative, always more than human. And then there is the wonder of people loving you and caring even though you feel so unlovable, so unbecoming.

I didn’t have to stay in hospital but was cared for at home - my family, friends, and colleagues were also immense. My book was published and won a prize - congratulations me. So, all this is by way of saying thank you for writing your wonderful book and inspiring me to write this. I will write to you again, and meanwhile please can your hands accept my love.

Joanna