Dementia is often designated the “plague” of the twenty-first century. What does a cultural history of dementia reveal about commonly circulating ideas relating to the brain, personhood, embodiment, and normal/abnormal? What difference do “labels” make – “melancholy”, “lunacy”, “dotage”, and “senility”, for example?
The lecture uses the historical development of the science of geriatrics to reflect on the experience of ageing and claims about the modern self.
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A lecture by Joanna Bourke recorded on 11 May 2023 at Barnard's Inn Hall, London.
The transcript and downloadable versions of the lecture are available from the Gresham College website: https://www.gresham.ac.uk/watch-now/dementia-history
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For those of you who have been coming to my series on cultural history of the body, we have already looked at polio, we've looked at tb, we have looked at breast cancer, and we will be looking at hiv aids and sickle cell disease. So, um, again, if you're really interested, um, just take a look. But today, of course, we are going to look at dementia, and I'm gonna start with trauma on a personal level. Few weeks ago, I was launching a book that I'd recently published and a PhD student of mine who, someone I also consider a friend, um, handed me a copy of my book to sign, and I could not remember her name. It was a mo, a moment of what can only be described as acute embarrassment, um, followed quickly by, um, a feeling of absolute terror. Is this what early onset Alzheimer's feels like now? The moment past to be pleased to know that my brain has been working just fine ever since then. Um, I'm pleased to know that. But it was a reminder to me about how the word itself, Alzheimer's has become a central metaphor for the fear of aging and decline. Today, the specter of Alzheimer's or dementia is like a cough in a Victorian novel, a hubinger of death. Now, for a disease that is so present in our collective nightmare, there is a surprising lack of understanding about its nature Now in literature, um, the most popular depiction of dementia, of course, is found in Shakespeare's as you Like. It, um, trotted out every single time dementia is is mentioned where old age is depicted as a second childishness, amere, oblivions, salt teeth saw, eyes saw everything, not the case. But my own personal interest in dementia was sparked by this film called Black Daisies for the Bride, written by the poet Tony Harrison, and directed by Peter Sys. It was broadcast British tv, 30th of June, 1993. You can watch the whole thing on YouTube. Um, I recommend it. It's also been acclaimed. It's won lots and lots surprises, and the film focuses on the lives of some Yorkshire women residing in an Alzheimer's ward in of the royal, uh, high Royals Hospital, an old Victorian asylum just outside of leads. Uniquely, I think how, at least for the time, 1993, Harrison attempts to provide viewers with a highly mediated, of course, but he attempts at least to provide us with a access to the inner as well as the alter worlds of women with late states Alzheimer's. In the film, the women retain their humanity as inflict inflicted through the lens of their unique pasts, including former jobs as a opera singer and therapist, their desires and preferences. One of them has an obsession for cleaning interactions with others, their marriages and environments. And the environments include the hospitals dark and prison-like wards. The film's soundtrack really is disturbing. Um, it's disorienting. The rattle of trolley's, doors being locked and unlocked. Footsteps moans and screams. Muriel Allen, one of the, the women in the film repeating, I love you. I love you. I love you. I love you. I love you. I love you. I love you. Maria Tobin, an opera singer in her early life. Trilling, a high, A note imprisonment in this film is metaphorical as much as visceral deaths got the only door code viewers are told one point in the film, the women come to life when they're entertained by this jovial man singing, oh, oh oh, you beautiful doll, A painful parody of the women's current lives. One of the women's female therapist muses on the facts that mural. Alan was also a therapist in her early life. Today, though, she observes that Alan is now beyond all forms of therapy. And if Alzheimer's doesn't spare a lifetime professional carer and denies a mind of muriel's kind, no one's free. So in other words, what we get in this film, it's kind of a reflection on selfhood loss, humanities shared vulnerability. It draws attention to the difficulties experienced by people living with severe cognitive impairments. Um, are they heard? Do they fully exist in the minds of others? But I think the film also elicits anxiety in viewers for other reasons. These five women are being presented as entertainment on television by witnessing the fragmented minds and bodies of these women. Are we guilty of being vos to their confusion of their confusion and pain? Now, we might, of course, defensively insist on the importance of making highly impaired people visible heard, but at what cost to their dignity? Is it even ethical to listen to their disjointed ramblings and vocalizations? After all, they are real women. Their high level dementia rules out informed consent. Are people with dementia even part of our collective humanity? If they are, what does this mean in terms of our interactions with them? And as I hinted at the start of this talk, what happens when they them becomes a future? I, me. Now these I think, are really important, interesting questions. As with all my talks in the series on the cultural history of disease, I do believe that history can provide really useful ways to think about worlds of pain. And dise, historical frames of meaning help us to think anew about how we might create better futures. As historian Jesse Ballinger has argued, without a sense of history, without the ability to construct a coherent narrative, linking the present to the past and to the future, public discourses on Alzheimer's will itself be confused disorientated. In other words, dementia is a subject good to think. Now, thinking with dementia is difficult. Thinking with people who are living with such impairments is also demanding because our hyper cognitive, um, culture silences cognitive authorities. There was, of course, everyone in this room knows there's no mystery about why dementia is so frightening. It fuses, if you like, cognitive degeneration, chronicity, and in curability and most anxiety ridden triad. Today, memory has become the shibun of modernity. It is in fact central to our self sense of selfhood. Once the, the plaques, the protein deposits, and the tangles twisted fibers in the brain have choked off memories. Where is the self located? The body may be present, but is it stripped of social identity? Personhood is often assumed to be, uh, to depend on the ability to recognize oneself in history and to place oneself, others, and the environment into a kind of coherent narrative. The ancient Delphic injunction has never been more central, no thyself. But of course, we can't turn away from dementia or people living with dementia. It is as emblematic of late 20th and 21st centuries as a hysteria was in the 19th century worldwide, this is about 50 million people, um, diagnosed with Alzheimer's. Since the incident of Alzheimer's disease doubles for every five year period after the age of 65. An aging population obviously means rising numbers of people living with dementia. This has resulted in almost apocalyptic, um, predictions about a tsunami of dementia, the fearful rise of this demonn in our midst. 2021, the World Health Organization declared that dementia is the seventh leading cause of death amongst all diseases. It's one of the major causes of disability dependency amongst older people worldwide. Now, admittedly, these statistics are very deceptive. After all, dementia is a name for a series of symptoms. The term comes from the Latin dare out of men's minds. Yeah, state of. So, in a state of out of mind dementia, which Alzheimer's is the most prevalent, is a cluster of symptoms that include memory loss impairments to everyday activities, emotional volatility, impaired ability to understand or produce speech difficulties. In recognition, it presents itself in very different ways. One might even say that actually it is unique to each individual sufferer. Furthermore, the diagnosis itself has always been challenged. In other words, the diagnosis is actually dependent upon tipping points when normal forgetfulness, forgetting a single name or, um, a, an address becomes memory loss, forgetting a great deal or placing the address book in the fridge. Even today, there are scientific uncertainties around what constitutes Alzheimer's disease. After all, some people with symptoms of Alzheimer's have brains that lack the typical plagues and tangles, while pathological signs can be found in some healthy brains. In other words, although, um, amyloid buildup results in neurodegenerative, there are people with significant, um, buildup, but no negative symptoms. Many people with plex tangles cell loss never develop Alzheimer's. The one thing that most people with dementia, not all, most people with dementia share, is old age. Nevertheless, the disease model has persisted in part because it reassuringly contends that dementia is something that can ultimately be controlled or even eradicated. Now, for those of you who have attended, um, all or some of my lectures, it won't surprise you to hear that there are vast disparities in who is more likely to develop dementia. For example, in the US the, um, prevalence of Alzheimer's is twice as high amongst African-American communities and Hispanics than in non-Hispanic whites. Despite such differences in risk, most research into dementia is carried out on white people. Now, in part, this is due to the fact that minoritized peoples are more anxious about becoming involved in medical trials. Um, a legitimate concern given the historical role of physicians in justifying racial in inferiority and experimenting on black bodies. But minoritized people also actually experience the disease differently, um, partly because they're diagnosed or they tend to be diagnosed at later stages of their disease. So, in other words, their symptoms tend to be more severe, meaning that they are also less able to make decisions about what form of management best suits their needs. Now, although dementia is undoubtedly raced, sociologist Maria Zumba warns that the quote, implicit white, conceptual, ideological, and political underpinnings of most dementia research reinforce and legitimize the racial status quo at the expense of the racialized others. She is, in other words, displayed dismayed with the way ethnicity is conceptualized, observing that framing the minority ethnic equality of access issue, largely in terms of minority ethnic culture and cultural difference too often results in a de racialized language. This silences and makes invisible the critical role of race and racialized social locations and positionings in creating inequalities for minority ethnic persons. A similar argument is made, um, by crip of color. Critics such as Feminist Disability scholar, Gina Kim, who really wonderful. Um, you can find the references by the way, in the printed version, who urges us to kind of hold racism, illness, and disability together to see them as antagonists in a shared struggle and to generate a poetic of survival from that nexus. Intersectional analysis tie together, disability, gender, class, racialization age, and so on and so on. Um, to make the point that overlapping minoritized identities dramatically increase a person's risk of neglect and abuse, as well as them being subjected to physical and pharmaceutical restraints. Now, before I continue, um, in, in this sort of exploration of dementia, um, it's really social and more cultural aspects. I'm gonna do it a little detour here because I think we do need to know something about its medical and scientific history. The clinical signs of dementia, of course, were known to the ancient Greeks. Um, however, even Hippocrates did not list it as a mental disorder. In other words, he regarded it simply as normal aging. By the first century, Roman physicians, Celsius scale cataloged it under terms such as mosis. Well into the 18th century. It was spoken about as madness or melancholia. It was as much a legal category as a medical one. So in other words, it was dominated by judgments about the validity of wills and debates about competency. Is this person competent to inherit or to marry? For example, it's only with the growth of the materialistic sciences that dementia was identified as a pathology of the brain. In 19 17, 97. In 1797, the term demen was first used by the French physician, Philipp, um, uh, Pinal. Um, and in 1838 by one of his, um, pupils sql, and this was the first time that a distinction is made between age related dementia and so-called the term of the time ility. So they described dementia as a disability that affects discernment as well as intellectual ability. They observed that it results in brain diseases causing the person to lose joyfulness. Scientists such as a Rasmus, Darwin and France Gold went further. So they were interested in cerebral local localization, making a link between mind and brain. The invention, um, by goggin of nerve staining in the 1870s was an another important milestone since it enabled scientists themselves to develop a morphology, if you like, of the brain. Now, in public discourse though, the, um, dementia is often colloquial and wrongly, um, known as Alzheimer's. After of course, this, um, German neo path ne neuropathologists on the 3rd of November, 1906, he gave a lecture entitled on a peculiar serious illness process of the cerebral cortex, which focused on Augusta Deta, 51 year old female patient. Um, she was seriously unwell. She could not remember things. She suffered delusions. She was sometimes aggressive. She was irrationally jealous. She hallucinated, she was agitated, she was psychologically distressed. In his case notes, 1901, um, Alzheimer contended that Augusta Deta quote sits on a bed with a helpless expression. What's your name? Augusta. Last name? Augusta. What's your husband's name? Augusta. I think your, your husband. Ah, my husband. She looks as though she didn't understand the question. Are you married to Augusta? Mrs. D? Yes, yes. Augusta D At lunch, she eats cauliflower and pork asks what she's eating. She says, spinach. The patient is not able to progress in writing and repeats. I have lost myself. I have lost myself. By the 8th of April, 1906, at the age of 55 years, Armetta had lost all cognitive abilities and she died of, um, sepsis and pneumonia. Postmortem of her brain revealed those plaques and tangles, um, for Alzheimer's, Alzheimer himself. This was not a different disease to dementia, but rather simply an atypical case of senile dementia found in a relatively young person. Um, it was Klan the founder of modern scientific psychiatry who named the disease after Alzheimer. When in 1910, he published a revised version of his, um, famous textbook, and it was he who actually distinguished Alzheimer's disease from normal pathological processes associated with aging. So for the important thing was that age was what was important, distinguished dementia from Alzheimer's. Interestingly, though the coinage of the term Alzheimer's disease actually attracted almost very little, almost no commentary at the time. Even, um, the numerous obituaries after Alzheimer died in 1915, it was never mentioned, but it was still an important moment in the history of the science of the disease because this is the moment where we witnessed the shift, um, of attention away from the individual patient towards macroscopic and microscopic analyses of brain tissue. So this is the moment. Move away from the person to brain tissue. Now, brain pathology dominated research until the period between the 1930s and the 1950s, where you get this rise of some, um, physicians who are saying, actually this is psychosocial. Um, 1945, for example, the anthropologist Leo Simmons, published a very famous book called The Role of The Aged and Primitive Societies, which illustrated the very different ways that aged, um, members of society were treated. He argued that the elderly were more integrated within pre-industrial societies and in ways that facilitated, facilitated their flourishing. In other words, senility was universal, but responses to it were culturally contingent in modern civilization. Simmons continued that the time tested adaptations of the aged has been, had been disrupted and perhaps even regressed in its solution to the problem of successful aging. American psychiatrist David Rothchild took such arguments, I think a lot further. He reframed ideas about dementia away from brain pathology and towards its social origins, compulsory retirement, increased leisure, the disintegration of the family, which meant that many older people were socially isolated, he thought were to blame for its debilitating symptoms. Now, gendered classed, um, expectations were also explored in this period, thirties, 1930s to 1950s, leading in some instances to an erroneous assumption that the most prominent sufferers of dementia would be white middle class males. Um, because of course, white middle class males were assumed to be most affected by compulsory retirement, um, and the lack of familial ties. In fact, of course, two thirds of people with dementia are women. And as we've seen, older people of color are twice as likely to have dementia as, as older white people. Others augmented such views pointing out that lonesomeness lack of responsibility and a feeling of not being wanted all increased the restricted view of life, which in turn leads to restricted blood flow to the brain. From the 1970s, dementia increasingly became a topic of great concern due to heightened focus on public health, greater confidence in biomedical interventions, including pharmaceutical ones, and a widespread acknowledgement about the impact of lifestyle on human health. Most importantly, though, there was a growing awareness of the dramatic shifts in human longevity. Between 1900 and 2000, life expectancy at birth for Americans jumped from 50 to 75 years, a 50% increase. A new generation of physicians sought to capitalize on precisely these changes. In other words, senility was rapidly becoming medicalized. Now, this wasn't in fact, um, inevitable. Um, initially geriatrics, um, struggled, really struggled to be recognized. The problem was not only the perceived, um, lower status of elderly patients, but the fact that in the 19th and 20th centuries, medical specialisms tended to be organized around body systems. So orthopedics, cardiology, gynecology, for example. In contrast, geriatrics was about the maintenance of healthiness by life stage. To counter this criticism, um, proponents made comparisons between geriatrics and pediatrics. This was the point being made in a 1909 article in the New York Medical Journal, written by very prominent New York physician, um, Igna, uh, Nash. And this is the person who actually coins the term geriatrics. Um, in this article, um, from Gerios, meaning old age and ia, meaning relating to the physician, Nashua maintained that old age was a physiological entity as much so as the period of childhood. While he said childhood has received special attention by physicians, and a special branch of medicine has been assigned to it, the same should be the case with old age. It too has an individuality of its own as clearly defined as childhood with anatomical features, physiological functions and disease since old age requires treatment differing from maturity, meaning middle-aged, a old age, and son should be assigned to a special branch of medicine. Now, while gerontologists urged people to supplement rhetoric about the century of the child with the century of the aged or, or elderly commercial, four firms also sought to capitalize on this relationship between, um, uh, childhood and being elderly. And just the favorite example that I have is, um, ger, um, Gerbers started to market their baby food products to old people, to elderly people. It was during this period that electronic microscopic studies of Senal plex and tangles shifted attention back to a brain patho pathology. And I've got a lot more about this history in the written version, if you want to have a look at it. Now, by the 1980s, the term Alzheimer's was widespread in popular culture, as well as in medicine. Um, um, anxieties, as I've already said, anxieties about aging population, the popularization of these medical debates, um, investments by pharmaceutical companies were really important in this. But also there was the rise of the caregiver's movement, which focused attention, um, or moved attention slightly to carers, um, uh, rather than patients along. And this was equally important to those other things I mentioned, along with the growing awareness of the public health costs of dementia. As early as the 1980s, Alzheimer's was ranked as the 10th most common form of death in the US. Public attention, um, or interest was also encouraged by the exponential growth of professional services with an investment in distinguishing between the frail and the confused older person, the energetic advocacy by numerous national Alzheimer's associations and societies compounded awareness in the us. The most important one was the National Institute on Aging, founded in 19 75, 74, as part of the US Department of Health Education. Well, welfare money for research just exploded. Within a decade, the institute had funded 10 new research centers dedicated to the disease. Between 1976 and 1989, US funds for, um, research into Alzheimer's increased from 4 million to 123 million, 3000% rise. Just within that very short time period, they sought to raise the profile of degenerative aging processes by making links with dementia and the war on the infectious disease of polio. And for those of you who I can see some in the room who came to my lecture on polio, you can have a look at at the critique of the war, um, image, um, metaphor. The n i a contended that Alzheimer's disease like polio was not a normal part of aging, but a disease that required pathological investigation and a cure. The activity or activities of the N I A drew attention to a fundamental tension between clinical research needs based on the disease model and social needs based on the public health model. Now, amongst the wider public d debates about dementia were fundamentally tied into ages, percep, uh, prejudices. Now, of course, ageism is not new in an essay concerning human understanding, 1689 philosopher John Locke argue that without language people were mere idiots, similar to brutes or even monsters. People were with dementia were not only presumed to have no voice, but when they clearly did have a voice were regarded as profoundly annoying, irritating, and dismissible. As George Beard, um, a New York, um, neurologist put it in legal responsibilities. There we go, legal responsibilities. In old age 1874, men die as trees die slowly and frequently from the top down. And he argued that peop uh, this happened, uh, in different ways, depending on the person, be it maintained that one person with dementia becomes pish, another avaris, another misanthropic, another mean and tyrannical, another exacting, another sensual, another cold and cruelly conservative, another vain and ambitious. And, and others simply lose their moral enthusiasm or their moral courage, or their capacity for resisting temptation. In other words, he's projecting this really depressing, damaging image of people living with dementia as tyrannical, decadent perverted. Now, such, um, prejudices were explicitly tackled In 1969, when Robert Butler, psychiatrist, gerontologist first director of the National Institute of Aging, coined, he was the one who first coined the term ageism. In an article in the Tologist butler lamented that ageism was not only a common form of discrimination, but was also the most acceptable form. He wanted the term humility to be abolished altogether, arguing that it's simply a waste bucket term that serves to stigmatize older people. In his book entitled, why Survive Being Old in America? 1975, Butler described Old Age in America as a tragedy. He reflected that. Few of us like to consider it old age because it reminds us of our own mortality. It demands our energy and resources. It frightens us with illness deformity. It is an affront to a culture with a passion for use and productive capacity. Uh, we are so preoccupied with defending ourselves from the reality of death that we ignore the fact that human beings are alive until they are actually dead At best, the living old are treated as if they were already half dead. Now, he was writing, of course, 1970s. Um, stigma is not receded today. There's an extraordinarily high levels of shame associated with dementia, with sufferers accused of being a burden on their families. In communities, people with dementia routinely infantalized, people living with dementia, seen as old and mad well before people notice any other unique characteristics, um, or feelings. Only rarely does this cause outrage. Um, an example here is when the biopic, um, the Iron Lady was released showing a confused and reclusive mar uh, Margaret Thatcher suffering from dementia. The Daily Telegraph deemed the film exploitative and insulting. However, if you look at, you know, the outrage that came from that film, it was in fact Thatcher's conservative legacy that was being defended as much as the dignity of the woman herself. More commonly, Butler is correct when he observes that ageism is the most accepted form of discrimination. It's often very explicit. The back cover of this book, um, here, um, a Living Death Alzheimer's in America, 1990, informed readers that people with dementia steal. They shoplift, they're violent, they expose themselves in public. They are verbally abusive. They lie, and they don't know any better. Meet some of the 4 million Americans who have Alzheimer's disease. The stigma is such that people even debate whether or not people with dementia should be given life prolonging drugs. Um, antibiotics, feeding tubes surgery is the person who has lost a sense of sulfur truly alive, are their lives meaningful? These are major questions made even more fraught by the introduction of genetic testing, meaning that a person may have dementia long before the appearance of any symptoms. What are their lives worth? Should the care of wealthy white people in the West with dementia be devolved as by the way it often is to places like Ban Lang Chai in Thailand As gender scholar catrina, um, Alvo explains such, centers exemplify the global effects of the neoliberal ideology of privatization of the social and the public that have resulted in cuts to public health provisions and welfare, but which draw upon colonial tropes and legacies of white supremacy. Are the lives of people living with dementia worth anything? This was the whispered question. During the Covid 19, um, pandemic, people living with dementia facing profound isolation in the economy of abandonment, they suffered disproportionately high death rates. S grievability turned out to be linked more to questions of rationality and the meaning making self. The stigma is such as that people in early stages of the disease engage in elaborate plots to hide their de disorient deteriorating memory, hiding diagnosis, using Post-it notes, um, electronic reminders in the words of Alene la plate, um, laplant, sorry, in the novel turn of mind, which if you read any novel about the disease, that that's the one i I love. Um, people she writes, living with Alzheimer's learn to laugh when others laugh, look serious when they do, when people ask, do you remember they nod some more or frown at first, then let their face light up in recognition. Such widespread dismissals are not only due to the fear, fear, but also due to contempt shown to people who violate ideals. Ideals of self-reliance, self-control, self mastery, and an arguably this has become even more so since the 1990s with a new emphasis on the third age that is, um, the cognitively, um, strong fit and healthy, um, person. Um, being a successful elderly person becomes a highly policed form of self labor. Due to the dialectic interplay between neurological and psychosocial factors. Stigma is extremely damaging. Social psychologists and activists, Tom Kit Wood argues that the labeling of people as demented is a form of malignant social psychology. It helps to produce what it purports to describe, helps to produce what it purports to describe. And Kit Wood, um, provides a suing account of everyday insults that people with dementia face. Um, he explores routine instances of treachery dishonesty used to enforce compliance disempowerment resulting in de-skilling infantilization and Tim intimidation labeling, which becomes a self-fulfilling prophecy, stigmatization, outpacing people with dementia burden context, um, where other people fail to establish an appropriate speaking pace in invalidation being ignored. Banishment objectification being treated as dead matter added to these abuses is institutionalization, is a classic case of what historian Louise Hyde, who is actually here in the audience today. I'm pleased, embarrassed to see <laugh>, um, has called cultures of harm in institutions of care. Now, as I've argued in relation to other diseases in this series of lectures, stigmatization is often augmented by the use of pernicious metaphors, languages, important metaphors not only describe ways of seeing people, but affect the way people see themselves and are both seen and treated by others, is the person with dementia nothing more than a computational device running gradually. And a m the most common metaphor for people living with, um, dementia is that their life is a funeral without end. They're experiencing a second childhood or a death before death. They're an empty shell, the living dead drifting towards un being, um, and so on and so on. As David George Aaron White House and Peter White Whitehouse have argued in a wonderful article entitled, asking More of our metaphors. As with hiv, they write, the idioms of warfare so prevalent in the Alzheimer's field have emphasized fear and anxiety, while channeling resources away from prevention and care and other approaches. We should seek greater humanity in our metaphors instead of prosecuting a war that many. If most experts regard as unwinnable, we might shift expectation from an absolute cure or prevention to a more realistic postponement of the more debilitating effects of brain aging that can be achieved by modifying known biological psychosocial and environmental risk factors. Now, of course, this will evolve, involve dramatic, even revolutionary shifts and social environments, as well as the redistribution of resources, the unequal distribution of which are detrimental to health, including brain health. Now of course, there have been major attempts to improve the lives of people with dementia. The health politics of anguish is a health politics of anguish is a powerful one, but even such images can be extremely problematic. In other words, people with dementia are required to be abject subjects. Um, so they're real excellent examples where you see that in terms of fundraising, if you show successful people with the disease and successful, um, homes, um, they, they're considered, um, of no use in terms of fundraising. Um, famous faces, of course, um, commercialization, um, and celebrity, um, uh, society of Celebrity, business of Alzheimer's is also very big. Notably, however, the rise of critical gerontology has been important in helping or moving the shift of attitudes towards sufferers by maintaining that people living with Alzheimer's or dementia suffer more from losing their standing in the world than losing their minds. They have spurred those field has spurred, um, ideas about just how good it is to think with dementia. They draw attention to the joy that many people with dementia feel when dancing, listening to music, creating art, interacting with children or animals, or life li like robots. The personhood movement pioneered by men such as Kit Wood emphasizes tactics for living full lives with the symptoms of dementia. It urges people to pay attention to the capacities of the feeling person and not only on his or her losses. More recently, attention has shifted to the so-called embodied self. So public health specialist Pierre Contos draws attention to the body bodily knowledge, arguing that the self is not exclusively constituted by cognition, but involves bodily knowledges. Drawing on ideas about nonverbal communication and pre reflexive reflective terminological selfhood cost us, wants us to sort of disregard or discard the old mind body dichotomy in favor of a model of personhood that places emphasis on embodiment and acknowledges that capacities, senses, and experiences a body's essential to the exercise of human agency. Um, and she draws on, uh, painters, for example, who, who use this. Um, this is also what literary critic John Bailey jests towards in his controversial memoir. But Irish Murdoch, um, uh, 1998 film version 2001, he noted that although Irish Murdoch could no longer form coherent sentences or remember where she is or has been, nevertheless, her body knows what to do when she is looking after her husband or citing her own books. A related point is made by Nicholas Jenners Jenkins in dementia and the inter, inter embodied, um, self for such. Um, scholars memory itself is interactive and they present vision of being human that emphasizes non-cognitive, affective and interrelational aspects of thriving. Now, such approaches to people living with dementia have been augmented by the writings of people with dementia. In 1988, um, Jay Burle pseudonym of Hendrick Mosman published out of Mind the first, at least to my knowledge, um, book of fiction from a Dement, a person of with dementia's point of view. The first book length autobiography was Robert Davis's, my journey into, uh, Alzheimer's Disease, such a Accounts, a reminder that Not all is lost in the Dementia Journal journey. For example, in losing my mind, Thomas Diagio laments his shrinking vocabulary and reflects on the fact that he has only a few years before I become a hat stand. But he also contends that his childhood wounds healed. My dreams were less haunted. Imaginations soon replaced anxiety, and I learned its lo lonely lovely powers. Importantly, the subtitle of his memoir is An Intimate Look of Life with Alzheimer's. In other words, it remains a celebration of his life, Albe it, a life that has taken an unexpected turn, or in the words of Richard Taylor in his Alzheimer's from the inside out 2007. The fact that I have a disease affecting my memory and cognitive processes does not make me any less an adult or any more like a child. I am not a child, even if sometimes I act like one, check me out. I am not a child. Now, of course, be first to admit that people who write memoirs are not your average patient. And there's always the risk of being polyannaish about a devastating illness. However, these writers are acutely aware that they will shortly no longer be fully cognitive beings, like the narratives that we looked at when I was talking about breast cancer survivors. And in the next talk, those living with hiv aids, they speak from the kingdom of the ill with an emotional urgency that must not only be heard and respected, but also responded to. My point is simple. People are much more than their memories. This point is nicely expressed by queer literary theorist Jennifer, uh, row in 2022, when she argues that although well intentional approaches, um, about eradicating the disease and so on can unknowingly perpetuate and reinforce hierarchies of ableism, the belief that ablely bodied minds are superior to disabled ones listening to those who are living with dementia reminds us, I think, of the need to develop models of sulfur that are liberated from cognitive abilities. In her 1923 memoir entitled, living in the Labyrinth, Diana Feel Mien asks, if I'm no longer a woman, why do I feel like one if no longer worth holding? Why do I crave it if no longer central? Why do I still enjoy the soft texture of satin and silk against my skin if no longer sensitive? Why do moving song lyrics strike a responsive chord in me? My every molecule seems to scream out that I do indeed exist and that existence must be valued by someone. While society defines freedom, the solely in terms of LA lack or loss, she insists on her continued sensuality feelings as well as her insight that the self is an ongoing process. It is malleable and relational. As Tom Kit Wood and Kathleen Brendan Butt, there is an advantage in seeing personhood in social rather than individual terms. It can provide an exemplary model of interpersonal life, an epitome of being human, embracing cognitive, um, alternatives is in fact good for everyone. Thanks very much. And Jessica say, just to invite you, um, 30th of May on hiv aids, 1st of June, sickle cell six o'clock. Um, I do, um, uh, perhaps, uh, just a question to start the conversation. Um, there is something that you, you mentioned at the, at the beginning of, of your lecture about the de generalization of people living with, uh, dementia, uh, or you cannot perhaps on expanding on that. Yeah, I mean, the generalization of people living with dementia is really interesting because although actually in, in reality a higher proportion of women end up experiencing it, women also live longer. So there's lots of reasons for that. Um, so much of the research and so much of the narrative is based on men and male experiences, um, are who are seen to experience it much worse than, than women do, um, and are seen, it's seen as more of a tragedy, um, than it is it is for women. Um, what's really interesting, I think about that is precisely this idea that which has some truth in it, that community that these, um, having family, um, that, you know, the roles of helping other people are really important in keeping the brain alert. Um, so in other words, women therefore continue to be able to look after other people, continue to be able to do these things. They continue to engage much more that somehow that men who haven't done this in the past, and actually they really don't do it because they are men, um, that that requires much more attention. Um, so this is, I think it's a really interesting thing, particularly in the period prior to the 1990s, 1930s to fifties. It's so prevalent. It's male Alzheimer's sufferers that they really, very, very worried about. Um, and, and also worried about institutionalizing them much more than the female. Interesting. Fascinating. Another, um, question is, um, something you, um, also talked about briefly in, in your lecture is this outsourcing of care. Uh, particularly you mentioned the, uh, the case of Thailand and the, um, the economy of perhaps, uh, what you call of abandonment or in that case perhaps, perhaps even banishment, sending people away or, uh, putting people in care home. Um, can you, can you perhaps expand on that? Yeah, um, it's a real trend in the last, um, decade and a half of, as you say, outsourcing, um, care for people, suffering from cognitive difficulties, um, getting them out of the house, getting them into, not even out of the house, out of into another country. Um, for care. Obviously we're talking about wealthy people here cuz it's quite, it's not cheap to do this. It's much cheaper though than keeping them at institutions within America or Britain or Germany, for example. So you send them to, um, places like Thailand. Thailand's very famous for this or some of the places they're very famous for this, um, which alleviates your anxiety about them. But also it ties in not only to questions of neoliberal, you know, inequities, um, in society and you know, the lack of funding of health services NHS and so on. But also this idea that, um, Thai people, this racist idea that Thai people and Thai women we're talking about really, um, are so much better and so kinder and so much are more able to, uh, to look after your loved ones that you have basically abandoned. Um, um, so it ties into those ideas about racialization, um, racial, racial I characteristics, um, and femininity of course, you know, Thai women, good women. Interesting. Look after. Um, any questions from from the audience? Yes. Think, uh, Terry Pratchett had in the discourse in the conversation, cause obviously he had a pretty negative, uh, perception of his future, A pretty, what He had obviously a very negative perception of his future and he was really advocating for, um, uh, youth measure to become Yeah. Something part of the conversation. Yeah, I mean, really important figures like that have been fantastic in terms of spreading information about it. Um, in terms of attracting funds, I mean, he's been used by Alzheimer's societies for precisely that and, uh, he's very keen to, to do that. Um, and his, but fundamentally a very negative sense of, um, a very pressing sense of, you know, his loss. Um, and I think one of the things that I think we need to think about is by moving attention away from loss and lack and cognitive, um, aspects, how can we actually make the lives of people who are living with these diseases? And we're talking about, you know, huge numbers, how can we actually make them better? How can we make them more fulfilling? Um, and, and I'm gonna say it, and more accepting of what is inevitable. I mean, one of the things that I think is damaging about that medical model, which of course, you know, I'm not knocking medicine here, it's so crucial. We need research and all that. Um, but what's damaging about focusing exclusively on that is that it gives an impression that, you know, um, there is gonna be a cure, um, as opposed to, which is fine, we're gonna work for that, we're gonna fight for that, but actually people now are living in the here and now, and we also need to address their needs and concerns and thinking about how we can use their capacities in ways that, that they can also continue to feel, um, like functional human beings and, and appreciated and respected human beings within our society. What did you ask you was as a individual, how does that person know that he's, he or she has dementia? Are there any signs or is it because other people say that you are, uh, you know, the person has got it? How does one identify that? You know, it's not, it's not, uh, like measles or disease, something like that. It's much more difficult. Yeah. Um, and as I I said earlier, it is, it is, um, diagnosed in terms medically diagnosed in terms of tipping points. Um, so the difference between one, forgetting a name, hmm, me forgetting my, my PhD student's name and my friend's name, um, from me, um, uh, um, putting, um, a book in the freezer. Um, so these tipping points, because you know, when you get, when you're talking about Alzheimer's, there are certain, um, brain pathologies after death <laugh> that you can, that can be identified as, oh, this person had, um, had Alzheimer's, but that can't of course be diagnosed, um, uh, seen, uh, prior to, to, to death. Um, so it is about tipping points, and that is exactly why, you know, having that shift, making that shift from this emphasis on cognition as the, the fundamental thing that is personhood, that is identity to something that is, is different. That, you know, there can be other things that that person is doing, that person gets pleasure from. That's why it's so important because there is no way to, um, categorically see this until it's at an advanced stage. You Spoke about the important role that language plays in perception of dimension. You spoke about the, uh, negative metaphors that we find coming in. And then I think you alluded, if I understood correctly, to someone who had a more maybe positive attempt at finding that humanity within language. And I wonder, have you come across examples of more positive spins through maybe metaphor that, that that work here? Yeah, um, certainly, um, metaphors that draw on feelings and on bodily responses are definitely more positive metaphors. So metaphors about, you know, the, the pleasures of dreams, the pleasures of imagination, that it's not simply a death or a foretaste of death, but that it is a new way of being is. I mean, those metaphors are really the very, very, IM important ones. And, and also it doesn't have to be through language. Um, you know, a bit that I, I skipped in the paper and it's in the long it's in, in the long version anyway, um, is about the use of music and art, um, that people find, um, other parts of themselves that had perhaps been, um, marginalized in the past, um, that they can draw upon, that they do draw upon and get great pleasure from that they didn't in the, in, in, in their past. Because, you know, the relentless their job, you know, their position and those sorts of things. So that is the way forward, I think, in all of these debates. Um, and they're great examples of, of particularly artists and by artists I mean not only, um, paints and et cetera, but also novelists, um, who actually do precisely that and actually generate new forms of art from their, their dementia, um, that actually are, are particularly interesting, um, even superior to what they they did prior to it. Well, thank you very much. Thanks a lot. Thank you very much, uh, professor book for such a fascinating, uh, lecture. And please join us, uh, for Professor Book's next lecture.So on the Tuesday 30th of, uh, may 6:
00 PM AIDS Cultural History. Thank you.