Recent Talks & Papers in Progress

(Re)situating Dementia: Philosophy, Biomedicine, Politics, Society[1]

Emerita Professor Joanna Latimer

Department of Sociology, University of York, UK

Chair, London Arts and Health

March 2025

Introduction

In this paper I examine how dementia is being co-fabricated by biomedicine, culture, and the politics of health and care. I reflect on what is good here as well as what is problematic in terms of how people and their families as well as communities and health and social care practitioners experience and approach dementia. I then move on to thinking about how alternative imaginaries can/are refabricating dementia and consider their implications for the future of dementia biomedicine and care.

            I am proposing a sensibility that can hold and keep two seemingly contradictory notions alongside each other.  On the one hand I am proposing ways to embrace and be affected by the being and materiality of persons with dementia.  On the other I am suggesting that ways to prevent, manage, cure, contain, mediate and modify the effects of dementia need to be pursued  without cancelling people with dementia as persons. Most of my thinking here is based on my work on ageing and the supposed proliferation of people experiencing dementia in all its many different guises, although dementia proposed as a thing in itself is, as I will discuss, problematic.

Experiencing ageing and dementia 

As discussed in my autoethnographic paper (Latimer 2025) my encountering growing older as a matter of material doings started as a young girl in the early 1960s – when I was about 6 or 7 years old.  I used to put on my play nurses’ uniform and go and help in a nursing home two houses along from where I grew up in Wimbledon, now, as then, a much sort after suburb of London. I have a vivid memory of the older women in their rooms, either in or sitting by their beds, as if they were in a perpetual evening or night-time. There were several residents in each room, they never seemed to go anywhere else – like a garden or sitting or dining room. Many of them were extremely old, pale, almost translucent, wrinkly and frail – becoming not just invisible but as I have described elsewhere, becoming invisible and inchoate, already descended into ‘the dark at the bottom of the stair’ (Latimer 1999 drawing on Fernandez 1986). I have a vivid memory of cleaning a very wrinkled, paper-thin skinny bottom of small gobbets of shit.  The shit was pale, like putty. I remember the smell and the old woman’s wispy grey hair and pink scalp. For me there was something profound and, in hindsight, perhaps life-defining in the experience of touching and ‘being touched’ (Letiche 2009) by such very old people. Here I allude to Letiche’s emphasis on Merleau-Ponty's (1962) lifeworld paradigm and the concept of the reversibility of touching and being touched, wherein ‘subject’ (who touches) and ‘object’ (who is touched) are radically interrelated and co-constituted. 

Specifically, I wonder what were the conditions of possibility in which a child, dressed up and playing nurse, was allowed to do such a thing?  To what extent was it possible because these seemingly very old people were somehow in-validated? This moment in my own history takes place in about 1961. The old people in the nursing home were Brian Turner’s ‘deeply old’ (Turner 2009).  These very old people were buried, sequestrated, ‘stabled’ waiting out the rest of their days in an endless twilight. Seemingly almost reduced to what we would normally think of as the bare life of becoming merely bodied, merely animal: becoming Other to being human. 

After leaving University where I studied English Literature, I went to work in a small geriatric hospital in Kent as a cleaner, picking up where I left off in 1961 perhaps. This hospital was in a former workhouse. I worked there for about seven months from 1976-1977, moving after 3 months from being a cleaner to being a nursing auxiliary (or care assistant).  Unlike the nursing home in Wimbledon, this was a state run, National Health Service (NHS) hospital for long term geriatric care.  A geriatrician visited once a week (coming from the County hospital).  While he was on the ward doing his rounds we had to stand in the sluice.  My memories of this hospital were very different from the private, family run nursing home in 1960s Wimbledon. It was light and airy, and the food was good, patients were overall livelier, and those who were deemed able enough were dressed and taken to a sitting room during the day or, on warmer days, to a glassed-in veranda.  While it was not what Goffman calls a closed institution, it still delivered care as ‘action in a block’ (Goffman 1961).  But the older people’s liveliness as figured by the institution stopped at this – they were not included as participants in how the world they inhabited was organized, they were not members included in ‘world-making’, they had no voice, and as lively body-persons they did not really exist. 

We can think of these people as Deleuze and Guttari’s (1991) “weary old ones” who can only “pursue slow-moving opinions and engage in stagnant discussion by speaking alone, within their hollow head” (p.214). These experiences prompted me to train as a nurse and go on to become a ward sister, first in a new revolutionary nurse-led community hospital in London and then of an acute medical unit in Edinburgh.  It is through my immersion in these locales that I experienced how older people and very old age were being thought and practised in a British context: as extremely ambivalent and problematic to not just medicine, but to society.  The downgrading of the work and the value of the people who needed it was accomplished by how they were being instituted. 

These experiences propelled my PhD, which examined assessment, diagnosis and care of older people in acute medicine.  They also propelled my going on to do research with the Centre for Social Gerontology at Keele University and with many researchers across Europe and North America, and later with scientists and geriatricians at Cardiff on genetics and on ageing and dementia science. Critically, there was an historical politics being enacted around being old, around being alive because of a body that seems to be living on beyond a person’s capacity for personhood and questions over who or what is responsible for their care. These are the people now thought of as in their fourth age, the people needing not medicine, but what has become categorised as social, personal or end-of-life care.  There is a whole dispositif (Foucault 1980), an assemblage of discourses, practices, political machines, cultural values, iniquitous distribution of wealth, and the disinterest of medicine, through which the old, old are emplaced.  

But how and at what point is someone assigned to this category – that is the critical question – the category of the weary old ones, those at the end of life? How can we think of the idea that someone has reached the limits of life as both an existential matter and as an event  – complex and relational, social and biological, and not simply as the inevitable effects of ageing or disease?

Research collaborations

All this is to give some context to my own experience of touching and being touched by ageing and older people – and particularly of older people with dementia, whom I have been encountering and working with and on for the last 48 years, as a nurse and as a sociologist. It is also to stress that how people age is situated, and that how we, and they, experience and think being and growing old is also situated by complex socio-cultural and political entanglements. 

This talk builds on my early work on medicine, health care and older people[i], and more recent research on ageing biomedicine and dementia science[ii], including collaborations with Richard Milne, Alex Hillman, Sophie Gould and Carrie Friese and with biologists, neuroscientists, and clinicians in the UK and the US.  This research has entailed immersion in cultural representations of ageing, as well as scientific and medical practices across multiple locations, including participant observation in laboratories and clinics. To situate my knowledge-making as partial, located and critical (Clarke, Friese & Washburn 2017) the piece that follows illuminates how this work entailed becoming  “intimately entangled” (Latimer and Lopez 2019) with and by ageing persons and bodies. Specifically, my encounters with  older people helped me understand that how we experience and think being and growing old are situated, by complex socio-cultural, material and political entanglements, especially dominant humanist notions of what it is to be a full person. 

Drawing on this body of work I explore 

1. 1. How ageing and dementia are systematically represented and constituted as disordering:

      1. Personhood and what it is to be human 

      2. Societies - dementia as a global epidemic, a drag on society and economies

      3. Biomedicine’s program of making dementia visible: specifically stabilizing dementia diagnosis deeply problematic 

      4. Possibilities for performance of ageing well 

   2. I then think about how a new dynamics of ageing is resituating dementia as potentially plastic and malleable 

   3. I go on to explore how we can think of both ageing and dementia differently: as Olding, stressing that how people age is biosocial, ‘situated’ and ‘relational’.

   4. I end by exploring alternative imaginaries for thinking with ageing and dementia, specifically, in terms of becoming-with and ‘being alongside'’ (Latimer 2013b) that do not necessarily preclude biomedical and societal attempts to prevent, cure, modify, intervene in ageing and dementia but which emphasises the need to rethink personhood in ways that includes and gives presence to people with dementia.

The Dementia Parade

Ageing and dementia are systematically paraded in medicine, in health policy internationally and in the media as disordering. As the anthropologist Margaret Lock (2013) argues dementia is representative and symbolic of all that is most feared about ageing. Specifically, dementia is being made to represent a collection of diseases that threaten what is most sacred to Euro-American notions of personhood: the imaginary of the sovereign autonomous subject. For example, in debates over advanced wills and their validity we hear from legal philosophers such as Dworkin (1986) that in dementia the autonomous self is so disordered that persons become incapable of making autonomous decisions and that their advanced directives must hold because they represent choices made when someone was still in their right mind. 

Dementia is also figured politically as disordering society because it is what most threatens the social body, specifically in predictions of ageing populations the proliferation of people with progressive dementia is described as an epidemic, with demented persons becoming an increasing burden, supposedly draining society of energy and resources, such as time and money. Here the burden of dementia misaligns with a politics of health and social care in which care of older people has been steadily shrinking and shifted onto families and into the private sector. 

Dementia appears at moments then to be being co-created in ways that project it as threatening not just the integrity of the individual subject, but the integrity of a particular form of modernism.  This modernism is rooted in the notion that it is the mind and its capacity for enhancement and extension by science and technology on the one hand, and business and political structures on the other, that can master nature, including the body, specifically the brain, and its troubles. On the other hand, the ways in which Alzheimer’s, the most common cause of dementia, is being researched and framed entangles dementia in uncertainty, and discourses of predictivity and risk. So that while representing the effects grouped together as dementia creates uncertainty, it also creates a ‘market’ and legitimates the need for more research directed at detection and the development of interventions, especially in relation to preclinical diagnosis.

The Creation of Abject Subjects 

Like autonomy, choice and decision in humanist philosophy, dementia is imagined by biomedicine as localized and inherent in the individual.  As such dementia is figured as a disorder of mind equivalent to a disorder of personhood and as representing all that deviates from dominant notions of the human – of persons as discrete, autonomous, conscious individuals capable of ethical and rational thought. The effects of how dementia is situated creates the imaginary of the abject dementia subject – increasingly in deficit and incapable of reason and autonomous decisions. Where mild cognitive impairment and dementia are constituted and measured in relation to memory, the person with dementia is refigured in ways that diminish their capacity for ‘success’, and thereby their value (Skeggs 2011). And of course, this complex situation presents opportunities for heroics – for battling dementia, and for defeating dementia. 

Specifically, the tragic vision of the abject, demented older person creates opportunities for the enactment of the creation and capitalization of troubles and the triumph of human endeavour, including the proliferation of biomedical science, industry and innovation through which to overcome and manage dementia.While at the level of the individual dementia is represented as what hollows out personhood to create opportunities for individuals succeeding despite dementia - Terry Pratchett, the writer of Discworld, is just such an example paraded in films and on TV. 

In effect how dementia is situated by philosophy, politics and medicine have conjoined to reinforce the stigma and even the exclusion of people subjected by dementia from collaboration and participation in world-making. What is absent from these representations is doubt, and the concurrent possibility that the figure of the abject dementia subject might be an effect of emplacement, situatedness, perspective.

Biomedicine: Resituating Dementia?

The alignment of demographic predictions of ageing populations plagued by dementia together with revolutions in brain scanning technology and post-genomic science that allow for the investigation of living brains on the one hand and the genetic profiling of neurodegenerative diseases on the other, has meant that dementia has become an increasingly potent site for both clinical and for technoscientific research, as well as a widening of dementia as a compendium ‘descriptor’ for many different effects.  

Critically, we are witnessing how dementia is being reconstituted as a site which needs, to borrow Bowker and Star’s (1999) phrase, ‘sorting out’ – with categorical and classificatory work going on across the biomedical sciences as well as mainstream psychology through which to gather or exclude the phenotypes (signs, symptoms) and distinctive attributes (genes, biomarkers, familial histories) to grow differential dementia diagnoses. This biomedicalizing of effects as different forms of dementia is ongoing with what Beard and Neary (2013) describe as “nosological creep”, including mild cognitive impairment (MCI), and expanding typologies of Alzheimer’s Disease.  It should be noted here that this growing classificatory system includes establishing forms of dementia that affect the young, such as temporal lobe dementia resulting from accumulated injury to the brain from repeated small head injuries experienced by, for example, boxers and rugby players.

My own work on ageing and dementia science shows that the ‘big story across biology and biomedicine and out to its publics is that ageing and therefore hopefully dementia is not just biologically determined but is plastic, malleable and even reversible (Moreira and Palladino 2009). My and my colleagues as well as others’ ethnographic studies of laboratory research on dementia, and of the clinical diagnosis of dementia (Milne and Latimer 2019, Hillman and Latimer 2019,  Swallow 2016) show ‘dementia’ is an umbrella term, loaded with clinical uncertainty on the one hand and with cultural baggage on the other. Given its diagnostic fragility, it is hard to understand how statistics for the prevalence let alone predictions of dementia are being calculated.  

Shifting between the clinic and the laboratory

In our paper Biomarkers and Brains (2019) Alex Hillman and I address how dementia is being stabilized as  a medical category across the clinic and the laboratory and how and when the category ‘dementia’ can be ‘made to hold’ (Latour 1987) as an association between genetic biomarkers and a discrete, identifiable disease. The point is that this stability is required in order that the biomarkers can be used in the diagnosis of dementia prior to its clinical expression and in the search for disease limiting drugs. Our concern is over how this stability can only be achieved by somaticizing dementia and excluding important contextual issues. We show how dementia science relies on shifting between the material human brain, genes and their expression and modelling ageing and dementia in the laboratory.  In the laboratory experiments investigating the relations between gene expression and cognitive and motor function, scientists rely on animal models such as nematodes and mice.  As such, human biology and nature get reduced to organisms who in turn get reduced to genes and their effects on neurons and how an organism functions neurologically – for example how slowly or quickly or how often a nematode worm thrashes its tail. What gets made absent is a minded, situated, embodied subject.

In contrast, the diagnostic process that we observed in memory clinics entails interactional work that associates, or not, diverse scans, clinical signs and test results with patients’ and families’ accounts, in ways that bring us closer to an idea of a minded dementia subject.  While this diagnostic process does not use genetic biomarkers it still locates dementia in an individual brain not as a body-world relation, rather the brain is enacted as belonging to a specific individual subject. 

Here then I want to press how dementia science is resituating dementia as a facet of biology’s massive shift through which ageing is no longer imagined as intractable, the  ‘natural and inevitable occurrence of growing old’ (Butler 2001–2002, p. 64), but as, like our genes, plastic, malleable and available to enhancement (Binstock 2003, Binstock et al 2006). Thus, alongside this as a new dynamic of ageing the neurosciences are reimag(i)ning the brain in ways that also emphasise its plasticity and malleability:

…scientists worldwide, working in many different specialities, have found that the human brain is highly plastic, possessing the ability not only to create new neurons, but to modify networks of neurons to better cope with new circumstances.” (Dementia Today 2013)

Within this imaginary dementia is being enacted as the effect of reduced brain plasticity due to disease processes, including biological ageing. As Katz and Peters assert:

“…the brain appears as an exciting social laboratory of discovery in which human attributes are embodied as opportunities for research, experimentation, and intervention” (Katz & Peters 2008)

What I want to point to in all this is how on the one hand dementia is often being represented by clinical and neuroscientific research as a pathology, as lesions (for example, plaques and tangles) that can be made visible and locatable in an individual brain or populations of brains.  This means individuals and populations of individuals can be examined, tracked and observed for the phenotype (signs and symptoms) that map onto lesions in the brain on the one hand and specific genes and genotypes. But on the other hand, dementia is also being represented as malleable.        

This resituating of ageing and dementia reimagines dementia and ageing as something that is possibly preventable, or at least postponable and open to manipulation, with claims for the relationship between forms of activity and the maintenance of brain plasticity, for example: 

“that under the right circumstances, the power of brain plasticity can help adult minds grow. Although certain brain machinery tends to decline with age, there are steps people can take to tap into plasticity and reinvigorate that machinery. We just have to keep our brains fit with a series of targeted brain plasticity exercises. Similarly, people suffering from a variety of cognitive conditions—from schizophrenia to "chemobrain"—may be able to retrain their brains to healthier function. The key—and the challenge—lies in identifying what brain mechanisms to target, and how to exercise them effectively.” (http://www.brainhq.com/brain-resources/brain-plasticity/what-is-brain-plasticity)”

Physical and cognitive activity as well as control of diseases and bodily conditions such as hypertension, stroke, obesity and heart disease, along with ‘education’ are all claimed to be affecting the prevalence of dementia, including that dementia is on the decline in countries like the US, the UK and Germany (see for example Langa 2015) because of improvements in lifestyle, including increased activity, management of diseases associated with dementia and education (e.g. Erickson et al 2013).  Specifically, then, I want to emphasise how actor-networks of public health around active ageing and new thinking in neuroscience align with post-genomic science and investigation of molecular biology.  These actor-networks are not however just forming what Williams et al describe as a neuro-culture (Williams, Higgs and Katz 2012), that individuates dementia as preventable provided, as Peel (2014) points out, individuals live the right way, including inheriting a genome with less risk. Rather, I am emphasising that the partial alignment of biomedicine, neuroscience and public health, celebrates prolonged youthfulness so that these actor-networks can be understood as enacting a new form of vitalism.  Moreover, I am suggesting that this new form of vitalism is entangled with and productive of the denial of ageing and of the demented person, possibly inherent in all of us, constituted as the monstrous biosubject, the potential zombie and vampire rolled into one, draining self and society of life force.  

In some ways then the biomedical resituating of dementia does not resituate how persons are thought, if anything it reinforces dominant notions of full persons as autonomous individuals, critiqued earlier, that marginalizes and others the dementing subject. Specifically, the growing critique around dementia science suggests that what is made absent from research that seeks to stabilize dementia is precisely the minded, embedded and embodied human subject. As such, mindedness is understood to be irreducible to neural substance or activity (the brain) (Gabriel 2017). Moreover, social studies of dementia science increasingly press for biological research aimed at identifying and stabilizing dementia biomarkers to give greater recognition of the subject whose mindedness is relational, distributed, social, located and contingent. Here, Lock (2014) has spoken of the need for a ‘local biology’ that recognizes the contingent nature of how a body becomes visible as losing its mind as much, much more than a matter of how genes mutate or not. In a more recent paper, Niewöhner and Lock (2018), drawing on the notion of situated knowledges (Clarke et al 2017), press for research that can produce ‘situated biologies’, especially how “different forms of ‘local’ arise in environment/human entanglements. Des Fitzgerald’s and Nik Rose’s (Fitzgerald et al 2016) study of the neurocity is an interesting exploration by social scientists of such complex relational forms, and “how material agency becomes situated and contingent through various knowledge practices” (Niewöhner and Lock, 2018 p.681).

Becoming-with dementia: Olding

 It is so easy to care about and enjoy the promise, hope and voluptuousness of the new and the young while the processes of becoming old are deeply troubling and disordering, particularly in the context of the dementias.  While the emphasis in the late 20th century has been on ideas of perpetual becoming (Bankston 2019), this beautiful idea runs alongside the facts of perpetual unbecoming: of how over time living things seen as individual organisms of a particular kind seem also to be perpetually becoming Other. 

As the science fiction author, Ursula le Guin (2017) stresses, ‘ageing’ is an existential event, material and affective, embodied and figurative.  She writes about ‘geezerhood’ and the ‘diminished thing’ that the older person is made to represent, asserting that “Old age isn’t a state of mind. It’s an existential situation” (p. 13).  Debunking the myth that you are only as old as you feel she says: “To tell me my old age doesn’t exist is to tell me I don’t exist.  Erase my age, you erase my life – me.”(p.14) This ontology I want to refer to as ‘Olding’ rather than ageing.  Where flesh, and time, and materialities, language and culture and the socio-political, entangle in the ongoing production of ageing, the older person, of dementia itself. Van Gelder’s (2015) photographic portrait of the artist Louise Bourgeois at the end of her life seems to me to enact, embrace and celebrate this ontology of Olding.  

It is not just that as I have argued elsewhere (Latimer 2018) the person with dementia appears as repelling the social world as well as the people around them in ways that seem to constitute a re-fusing, or ‘disposal’ (Latimer 1997, 2013; Munro 1995) of specific forms of world-making (Latimer 2018). While I do not want to in anyway underestimate just how problematic dementia is for all concerned, I want to stress the performativity of how dementia is being co-constructed by politics, biomedicine and philosophies that stress personhood as autonomous individual selves.  What is being enacted by these narratives of dementia is both very specific conditions for what it is to be fully human. Through a shift in perspective, we can show that the monster may not be what we have subsumed under the category ‘dementia’ or ‘ageing’, for that matter, but the networks of entanglement and the forms of personhood demanded at the turn of the 2nd millennium as the latest expression of modernity’s demands. 

Olding is often imagined as a process of degeneration, loss, and decline, most clearly exemplified in depictions of dementia, but not necessarily of a loss of what is valuable – how Olding is thought and experienced is full of ambivalence. For example, in his contemplative late poem Lebensweisheit spielerei(Playing with the Wisdom of Life) Wallace Stevens (1982 p.504) associates later life with an ‘indigence of the light, a stellar pallor that hangs on threads’:The poem’s bathos turns this impoverished light of the afternoon or evening of life into an almost false light. The fall, of the day, of the year, of the light, appears cosmic in its associations: the dwindling in which ‘the proud and the strong’ have departed is when we can be touched by each other as ‘finally human’, ‘unaccomplished’, revealed for ‘what he is and as he is’. Growing old is an ‘annihilation’, stale but nonetheless grand, the antithesis of the life-giving light of ‘accomplishment’, the adornment that makes us proud.  Stevens himself playing with what gives life wisdom seems to be suggesting that wisdom is earned through experience of the ordinary and the everyday, what elsewhere he describes as the ‘plain sense of things’ (Stevens 1982 p.502), and our relation to the figure of the old is exactly that: the moment when we are or not touched. 

Rethinking Personhood, Resituating Dementia

I propose that we need relations of ‘caring’ that place ‘under erasure’ (Derrida 1988; Munro 2022) those forms of world-making that position dementia—and the brain more broadly—as things in themselves (Larsen 2013). These forms not only define dementia as a characteristic of a person in deficit and a body in decline but also cast it as the nemesis of contemporary personhood and modern organizational structures. This may involve crossing between the new vitalism that insists on the prolonging of youth and vitality, and the celebration of other forms of sociality that involve different ways of being in the world.  This means giving room for persons with dementia. 

Dementia as co-constructed in the actor networks described above ‘breaches’ as Harold Garfinkel would say all the usual ways of going along and getting along through which people enact their identity and belonging in late modernity. Dementia and growing old both have the possibility to unravel people’s capacity to do the social, including conforming (more or less!), negotiating, or even resisting, but intelligently, accountably, with reason.   Growing old and becoming ‘demented’ can seem to put someone in another space, ‘elsewhere’ – beyond the pale, and what we think of as reality. But perhaps it is us who are elsewhere? By shifting our relations  to the characteristics, we are being made to see as dementia, we can refigure them as ways of being in the world differently, and as other ways of being.  Here I am suggesting we need to make room for those characteristics and ways of being that we are being made to see as the signs and symptoms of dementia.  This includes getting inside the world-making of someone with dementia in ways that accredit them and their conduct as communicating something, as having a reality and even a rationale. Only then can people with dementia find themselves reincluded as persons. 

I want to give some examples of what I am driving at borrowing from media depictions of people with dementia that I have analysed.  The film Iris (2001) offers us a glimpse of how being alongside dementia might challenge the modes of ordering that so emplace it and us. Towards the end of the film there is a profound moment when we see Iris Murdoch, now in the full throes of Alzheimer’s disease, for a moment re-exerting herself, her mind, and making a very different kind of sense, if only those around know how to read it.  Bayley her husband has been trying to get Iris to write, and has given her a notebook, to help her connect with her old self – the published novelist and philosopher.  There is a scene where he takes Iris to an old haunt – their friends holiday cottage on a pebbled beach by the sea.  After the greetings, in which Iris does not seem to make any sense of who anyone is, we see her running down the shingle to the sea, childlike, clutching her rather tatty notebook in her hand.  We then see Iris sitting on the shingle, tearing pages from her reporter’s pad, laying them out carefully in rows, and placing her beloved stones on them, beautifully, and in perfect symmetry.  She is creating a new kind of writing, a new kind of ordering, perhaps even a new kind of book.

But what happens next reveals the profound distance between her reality and that of the world she once helped create. At this critical moment on the beach, the old order intrudes with Bayley and their friend Janet, walking down to Iris at the seas edge, and asking her to sign her ‘real’ book, her last novel which has just been published, holding out the book to be signed together with a pen.  Iris throws down the book and the pen.  Maybe this is because she can’t or won’t sign her latest book.  Or maybe in not signing she is refusing, in the sense of disposing of, the world as it is for her husband and friends, and as it once was for her.  It is as if she is asserting that the world that the book, and the signing of it, represents is no longer relevant to her as she is now.  But the moment does not end there.  Rather, Iris gets them to pay attention to her new book - the sheets of paper held down by pebbles that she has been arranging on the beach -  making her current world-making present.  She does this by freeing each blank page from the weight of its rounded stone, so that it is caught by the wind and taken out towards the sea. 

Keeping people with dementia present as persons

I noted a similar moment of someone ascribed as having dementia being made absent and of them making themselves present as participant in world-making in the BBCs Our Dementia choir series. This moment that takes place when the camera team and Vicky McClure, the presenter, are in the kitchen of Mark, a man with presenile dementia, his wife Karen and Mark’s carer.  Vicky McClure says she has gone back to see how Mark is getting on because he has apparently deteriorated.  In the kitchen she is talking to his wife, Karen, and Mark is standing up near them, working at a small table on a jigsaw puzzle.  They are discussing his deterioration, and how his daughter, who Mark’s wife call “the love of his life”, can’t spend time at home anymore because she finds it to distressing to see him.  Karen tells Vicky how exhausted she and, looking over at Mark, how painful it is to watch her daughter leaving – she says it’s like another bereavement, and begins crying. Vicky makes sympathetic faces and noises to Karen.  They do not include Mark in the conversation, who goes on doing his jigsaw puzzle. At the end of the encounter, they change to an upbeat tone and ask Mark to sing.  Mark turns around, turning to look at his wife, and sings.  The song he chooses includes the line “why do you build me up buttercup just to let me down?”  - his singing is strong and moving.  

For me this is a moment through which Mark seems to be responding to the conversation he has most likely been overhearing between Vicky and Karen, a conversation about him and about her feelings, through which perhaps he is being subjected and excluded. For me like Iris choosing this song is an attempt to reassert himself, to make himself present as someone who has understanding.  It is so easy to cancel someone who is no longer being seen as fully human, as a full person, and not notice that they are still there, differently, but still present. The terrifying thing is that as in the film about Iris, Vicky and Karen don’t read the significance of Mark’s attempt to move and change the world and make himself present as a person through the song he chooses to sing to his wife.  As a result, they can’t render him as more than in deficit, and as engaged and able to participate, be moved and attempt to move.  

I want to suggest then that what is needed here is not just a shift in how persons with dementia are thought, but a shift in how persons and personhood are thought.  This shift is not just to stop how people with dementia get cancelled because they are no longer figured as an autonomous self, but to institute processes and practices based on the idea that persons have never been autonomous selves.  Here I am thinking in terms of being alongside the otherness that dementia seems to provoke and even find better ways to become-with those other ways of being in the world that seem to characterize dementia - slowness, immobility, degeneration, confusion, impotency, even chaos. 

We know from so many carers how dementia disorders the modes of ordering that underpin our living together in the world, and that can include our own as thinkers, scientists and intellectuals. This means finding ways to be alongside what we are being made to see as a clouding of the light of the enlightenment. Specifically, being alongside dementia I think requires a sensibility & ongoing willingness to be affected & transformed by heterogeneity, uncertainty, disorderings.

            Questions arise as to how, where and when thinking with dementia can propagate a sensibility that gets inside the reality and world of the person being designated as having dementia to afford ways of becoming more competent in that world.  By being alongside, I am talking about being with people with dementia in partial and intermittent connection (Latimer, 2013), cherishing their difference and following them in ways that allows their being in the world to affect world-making as well as what we know and understand, but not necessarily to change it. I want us in this way to challenge how dementia is being positioned as other to being human.  I want to suggest that this requires us not to deny slowness, immobility, degeneration, immobility, impotence, infertility, unproductivity, confusion, and embraces finding ways to understand when they might be a partial effect of relations and emplacement by those relations. 

Gladys Wilson: Dementia as situated

At the start of the short film (2009) of Gladys Wilson and the therapist, Naomi Feil, we see Gladys in a chair alone, all introverted an[2]d disconnected, tidy and clean, in an institutionalised setting.  Gladys supposedly has been diagnosed with AD in 2000, 9 years earlier, and now has little language.  An individual in retreat perhaps, or simply as Elena Bendien asserts, not less but shrunken, like a snail shrinks into its shell.   Gladys might just be exhausted, spent, emplaced and positioned for years on end as a woman, as an Afro-American, as poor.  Who knows. 

There may be nothing wrong with being in the world like this.  We have no idea where Gladys is.  She seems ‘away’, but it is us who are away.  And critically her being in the world like this may also be an effect, an effect of her current emplacement.  

Like EM Forster’s belief expressed in Howard’s End as “Only Connect”, Naomi stresses that as isolated and disconnected as Gladys seems, she, like everyone else, needs and wants connection.  I’m not sure about the discourse here, or how Naomi goes onto theorise the need for the mother, rather what I want to stress is how Naomi is not afraid of entering Gladys’s world, and of finding ways to become competent in that world. She is not afraid of Gladys decline but reaches Gladys through a material semiotics of bodily connection, in a bodily becoming. 

This is a kind of radical relatedness (Letiche 2009), including being moved or ‘affected’ by the Other as a part of understanding how to care. This is only possible because Naomi has found out about Gladys’ gospel singing and the importance of her participation in the gospel church.  I think that Naomi is Jewish, so this is not an advertisement for born again Christianity!  Rather, by taking care to open to and being alongside Gladys, Naomi brings Gladys into presence as participant in world-making. For a few moments Gladys-Naomi sings and beats time, they become face-to-face, foreheads touching.  Then they separate and Gladys seems to be awakened – concentrating on Naomi, answering her questions, being expressive. The work by Olver Saks (2007) presented in his book Musicophilia and by the US charity Alive Inside: Music and Memory seem to verify these kinds of effects that participating in a musical activity can have for someone with dementia, of how music can bring someone who seems a way back into presence as a person.

What I want to press though is how this opening for care constitutes what Rudge (2009) calls a rupture of certainty – there is no way of knowing for sure how Gladys feels about what is going on – or whether she wants to be refolded into the present.  Naomi gives it a purpose, for her this is validation therapy – it is productive of a therapeutic regime.  But what I want to press is how for a moment dementia, and Gladys and Naomi, become with each other and differently to what they previously were.  So, we can acknowledge, and even celebrate, how this kind of radical and intercorporeal relationality entails a commitment to the easily neglected and insignificant, to the possibility of being alongside decline, degeneration, shrinkage, immobility and slowness. 

In conclusion 

I hope that we can find some biomedical ways of preventing or alleviating some of the components that go to make up what we call dementia, a disease limiting drug would be a great start.  I also hope that we find out more about the biology of ageing and its relation to the conditions that help produce these components and that we can find ways to help damaged brain repair, using some of the amazing new technologies bundled under the rubric regenerative medicine.  But I also think we need to find ways to live with dementia better – to be alongside dementia, and to dwell with ageing, as ways of being together differently.  There are many experiments here – Dementia Friends in Japan, Alive inside: Music and Memory, Dementia Villages, Dementia Friendly Cities and Communities, Alzheimer’s Choirs and so on.  But I want to point to a possibility for thinking with care that can underpin interventions and experiments.  

The ‘new dynamics of ageing’ and its underlying valorization of anti-ageing vitalism, particularly the preservation of the properly brained autonomous decision-making individual, is very seductive – vitalism appears at first sight as something that we can all buy into.  But if we look carefully, it can be understood has having very specific contours and alignments – its emphasis is on health as the prolongation of those attributes we normally associate with youthfulness rather than growing old: productivity, mobility, massivity, mental and physical speed and activity.  And to achieve this vitality humans are being called to enact their exceptionality, their different from other animals by making, as Marx stresses it, their ‘life activity itself the object of (their) will and of (their) consciousness provided (they are) free to do so” (Marx, 2000, p31-32). Within these constructions of what it is to be a full human subject the perspective of connectivity and relationality are increasingly getting lost.  In these narratives there is a kind of ordering and enactment of specific kinds of values: that the peak of adulthood is the real person, as a person to refer to, who has continuity, who is productive and reproductive, potent, vital, socially mobile, and that dementia hollows out this person as they regress and become ‘unbecoming’.  By unbecoming I mean not just the loss of character, memory and the ability to recognize loved ones, language, orientation, rationality, purpose, productivity and so on and so forth,  (see for example), but a loss of vitality, and the capacity to maintain and regenerate cells, bodily functions and self.  

            In contrast I am suggesting that by rethinking persons, and by becoming with and being alongside dementia we may get beyond the malaise that is so emplacing us and that excludes dementia and ageing as unbecoming and monstrous. I am also suggesting a sensibility that attempts at least to illuminate differences between when it is a disease that is affecting someone, when it is the lack of fit between them and the world-making they are emplaced by, and when the effects are who they are becoming.  There is no way of simply knowing the difference here.  Julia Swallow and Alex Hillman (2019) show in their work on the clinical production of dementia a complex ‘ontological choreography’ (Thompson 2005) in how doctors, relatives, patients, health services, and neuroscience associate and interact for dementia to become present as a diagnosis, or not.  Neither of them shows dementia diagnosis as simple.  On the contrary it emerges as having to be made and unmade as gatherings and assemblages of different actants – material, semiotic, human.  But both show how careful everyone is not to commit someone to a diagnosis of Alzheimer’s disease hastily.

 Solidarity with dementia may require then a shift in perspective from seeing speed and competition, potency, (re)generativity, growth and (re)productivity, as the only ways to being a full person, and critically, to being included in world-making.  What is needed here is very nuanced: it relates back to the old philosophical problem of other minds. We know the social stigma attached to disorders of the mind precludes and limits how people deal with dementia. Here, I am not simply conferring with some notion that illness in later life is the effects of the accumulation of advantage/disadvantage across not just the lifecourse but generations, with illness an effect of biography and milieu (Niewöhner 2011). Sticking with this imaginary preserve’s dementia as descriptive, thereby denying the chance to be alongside otherness and difference in ways that not only reproduce ideas about what it is to be human in the contemporary moment: but rethinking how we are called to be human in very particular ways.

Being human is not just about being reproductive, fast, competitive, aggressive or even just conformist, including the elicitation to be creative and vital.  Rather as Munro and I (2015) have described, contemporary neoliberal personhood demands a kind of automotility: the need  to be ready and willing to fold and unfold into not just conventions and conformations, but whatever demand on us dominates from one moment to the next. Dementia can be understood  as a form of refusal to be folded into the demands of neoliberal personhood (Latimer 2018).   Attempts to eradicate dementia, dispose of dementia or at least bring dementia to heel are problematic when they deny ways to challenge the dominant modes of ordering that position and situate in the contemporary moment, and perhaps which position people as they grow old in ways that co-creates or at least intensifies what is being figured as dementia.

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