Critical Dementia Studies: An Introduction Eds. Richard Ward, Linn J. Sandberg, Routledge, 2023, pp. 57-71. 6 ‘Lost in time like tears in rain’ Critical perspectives on personhood and dementia Stephen Katz and Annette Leibing Near the end of the film Blade Runner (1982), Roy Batty, the dying humanmachine ‘replicant’ played by actor Rutger Hauer, reflects upon his short life in a touching well-known monologue, lamenting that ‘All those moments are lost in time, like tears in rain’. Batty’s words not only express the fleeting value of a life’s accumulated experience and knowledge in the face of death, but also evoke or at least perform his human-like emotions, despite the short duration of his mercenary existence. Thus, Batty’s status is confusingly liminal, as evident by the surprised reaction of character Rick Deckard (Harrison Ford), the detective sent to hunt him down. Here, liminality exists not between types of life transitions nor biographical trajectories, but between different types of selves encountering each other: Batty is both ‘us’ and ‘not us’, and while we are intrigued by the appearance of his humanity, we also distrust the dangerous unpredictability of his not-really-human brain, even as he clings to his losses in a very human way. This cinematic scene is evocative of the self-other liminal status familiar to us because it frames encounters with individuals diagnosed with dementia,1 where interior, personal life is assumed to be continually fragmenting, unreliable and uncontrollable. In large part, this assumption is due to the historical construction of Euro-Western concepts of personhood itself, characterised by certainty, rationality, agency, memory and individuality (Laceulle, 2018). These are also enduring culture-bound ideals with their own moral prescriptions (Leibing, 2019). In the dementia field, throughout the 20th century, these assemblages of personhood merged at first with a disease-based model of dementia and the medicalisation of those diagnosed with it. Thus, they have also become the target of critical scholars who seek more tolerant and less restrictive understandings of the person with dementia. It is this juxtaposition between dementia and concepts of self and personhood, terms used interchangeably here, that this chapter examines. We are taking a closer look at how such concepts became embedded within the development of dementia research itself and, as a consequence, practices of care, along with the critical ideas they inspired. Our position follows Barbara Prainsack’s assertion that ‘[t]he key to … medicine that fosters solidarity and is sensitive to people’s needs lies in being cautious about what DOI: 10.4324/9781003221982-9 58 Stephen Katz and Annette Leibing idea of personhood we use and promote’ (2014, p. 652). While the history of dementia is a complex story of science and culture, one interwoven with the biopolitics of ageing itself, this chapter outlines three overlapping stages of dementia research and the lineages of personhood concepts that inhabit them for our purposes. Conclusions ponder ideas for future research that looks more to community models of care and collective traditions of support and is less burdened with resolving problems of individual personhood and liminality. Stage 1: Disease, loss and the medicalisation of dementia Neuropathologist Alois Alzheimer’s documentation of his first and famous patient Auguste Deter, at the dawn of the official discovery of Alzheimer’s Disease (AD) in 1906,2 is an account of the gradual dissolution of the woman’s personal life from her early 50s until her death. ‘I have kind of lost myself’, he quotes Frau Deter as saying (Maurer and Maurer, 1998, p. 145). In fact, Dr Alzheimer not only diagnosed a brain pathology (post-mortem), but one that had apparently fragmented the memory, coherence and emotional stability of his patient – the very attributes of conventional personhood. Frau Deter and later other patients were seen as too young to be suffering from the dementia symptoms of old-age senility; hence, their puzzling presentation of ‘senile dementia’ became the starting point for what became the modern Alzheimer’s disease movement (Ballenger, 2006a; Fox, 1989). The movement, especially since the 1960s and with the acceleration of neurological research, promoted AD as a powerful articulation of concerns about ageing itself. Leading gerontological figures such as Robert N. Butler, the first director of the American Institute on Aging in 1974, urged the replacement of the ageist image of ‘senility’ with that of AD as deserving of public funding, since he advocated that AD was a disease separable from the normal ageing process itself.3 At the same time, the image of AD as an age-related problem in but not of old age continued to galvanise the AD movement as it has quickly become a global phenomenon, with World Health Organization (WHO) and other reports citing increasing numbers of older persons diagnosed with AD, along with dire predictions for the future sustainability of systems and resources of care (e.g., WHO, 2017). Following Butler, as medical experts and dementia policy advocates believed that the disease model relieved older people from being labelled as naturally ‘senile’ or even earlier as ‘being dangerously mad’ (Leibing, 2005), the medicalisation of dementia created other issues of exclusion, stigmatisation and neglect. As Ballenger claims, the gerontologic disassociation of senility with ageing created a division between positive ‘successful’ agers and those afflicted with disease, such as AD, that became a separate entity that ‘seems to create at least as much public fear and loathing about old age as did the expansive concept of senility out of which it was carved’ (2000, p. 98). Critical perspectives on personhood and dementia 59 The AD movement’s aim of supplanting the historical ageism of ‘senile dementia’ was also premature because the lines connecting memory loss as a disease of the mind, a pathology of the brain and a detriment to selfhood were actually further strengthened as the cases of AD diagnoses grew (Ballenger, 2006b). Meanwhile, historical notions of self and personhood were left largely unquestioned as the default definitions of civilised humanity (Ballenger, 2006a; George and Whitehouse, 2021; Lock, 2013). Adding to these dilemmas was the obvious problem that, as ageing populations became increasingly associated with the risks of dementia, the search for cures, development of drugs, expansion of diagnostic technologies and neurological explanations of cognitive impairment favoured by the scientific community were not necessarily advancing nor improving care for persons diagnosed with dementia. For this group, personhood remained characterised by loss, isolation and dissolution, accompanied by public images of Zombie-like terror and suffering (Behuniak, 2011; Zeilig, 2014). These developments form the crux of this first stage of contemporary dementia research. As the sciences of ageing optimistically rendered previous ideas about senile dementia as obsolete, they transformed AD into an isolated and singular disease whose mysteries became the property of medical research, clinical technologies, pharmaceutical funding and hopes for an eventual cure. In turn, they also re-stigmatised and alienated the very people such developments were designed to help by relegating their humanity to the pathologies of their tangled brains (Beard, 2016; Whitehouse, 2008). Stage 2: Person-centred care and its critics In Stage 2 of dementia research and culture, the focus shifted more sharply to issues of care, especially after it became evident that the once-hopeful pharmacological interventions had no major impact on the course of the dementia syndrome, although these medications continue to be widely prescribed (Leibing, 2014). The limitations of the medical modelling of AD and its harmful effects of institutional isolation for people diagnosed with it became especially problematical. Instead, non-medical approaches were sought that proposed more humane care practices identified with alternative concepts of personhood that rejected the bleak helplessness of subjective loss and emptiness. Stage 2 researchers and practitioners, whose great variety in backgrounds cannot be captured within the scope of this chapter, commonly proposed that the perceived liminality of being both human and non-human for persons with dementia could be ameliorated if ideas about human rights, compassionate healthcare ethics and, above all, personcentred care (PCC) were integrated into dementia therapeutic practices and care environments. PCC was inspired by the work of Tom Kitwood (1937–1998), a social psychologist and ‘personhood pioneer’ who in the latter part of his career laid out the ethical principles to moor the care of a person with dementia 60 Stephen Katz and Annette Leibing to practises of empathy, respect, dignity, communication and reciprocity (Kitwood, 1997). For Kitwood, ‘person-first’ practices took into account the immediate living conditions of a person with dementia and their interdependence with others, as well as training caregivers to utilise different and more appropriate sensory skills, such as focused listening, observing and touching. The PCC framework asserted that if the needs of the care recipient and respect for their moral status were properly met, apart from the demands of institutional schedules and efficiencies, then problems of agitation, depression, sleeplessness, poor appetite, inactivity and even accelerated cognitive decline might be remedied, while lessening the need for behaviour-modifying medications. PCC became a rallying cry for the dissident voices in the latter decades of the 20th century, who criticised the mistreatment of persons diagnosed with dementia and attacked mainstream assertions that subjective life in dementia is bound for irrecoverable collapse (although final stages of dementia remain a challenge). Such mistreatment included over-medication, isolation in closed wards, physical abuse and regular neglect (especially in countries with pro-profit health economies). On a grander scale, PCC appealed as a revolution in dementia care, bringing together non-science experts with philosophical, artistic, literary and spiritual backgrounds, with the aim to re-imagine dementia as a shared human condition rather than an isolated and isolating disease. Above all, for Kitwood and his associates, such as Steven Sabat (2002) and Stephen Post (2006), it is the facilitation of expression of selfhood, as the deep and continual human quality that underlies individuality even for persons with dementia, that is the most crucial care-giving task. Thus, in the PCC perspective, for people with dementia who are treated well, self and personhood are not simply lost because they continue to animate biographical connectivity. They are always, at least partially, ‘preserved’ (Palmer, 2013), as recuperative interventions through inventive exercises in music, dance, theatre, elder clowning and storying that target ‘the enduring self’ seek to demonstrate (Berenbaum et al., 2017). Since Kitwood’s time, the popularity of PCC has grown to influence professional strategies and practices, sometimes for budgetary and managerial reasons. Texts such as The Dementia Manifesto (Hughes and Williamson, 2019), government long-term policy reports such as Ontario’s ‘Patients First’ (2015), housing organisations such as the Eden Alternative (https:// www.edenalt.org/) and a robust literature on training guidelines, such as those provided by the Alzheimer’s Society of Canada (2011), attest to the adaptation of PCC into programmes of care. As the Alzheimer Society of Canada framework recommends: ‘Person-centred care should be incorporated into all aspects of care regardless of the resident’s condition or stage of the disease’ (2011, p. 19). Thus, PCC advanced from a critical movement recognising the value of the expression of selfhood in dementia to become a promising administrative programme in dementia care, even where original Critical perspectives on personhood and dementia 61 PCC mandates became distorted or simplified in the process. As Fazio and colleagues state, ‘Recognizing that selfhood persists, learning about the complete self, and finding ways to maintaining selfhood though interactions and conversations are fundamental components of person-centred care for people with dementia’ (2018, p. S11). And because people with dementia are dependent on others, their interpersonal relationships are crucial, such that ‘The other person, the caregiver, is needed to offset degeneration and fragmentation and sustain personhood. The further the dementia advances, the greater the need for “person-work”’ (p. S12). However, this hyphenated term ‘person-work’ opens onto one of the more contentious issues in PCC, which is the status of the caregiver and respect for their personhood. In Canada, for example (the authors’ home country), this issue is particularly salient because labour conditions in long-term care residences suffer from severe understaffing, poor salaries and demanding schedules. As well, research reports illustrate how care workers have little decision-making authority and inadequate training time for new initiatives and technologies. In one study, researchers found that care workers experience a ‘near impossibility of providing relational care, that is addressing residents’ emotional, social, existential and spiritual needs’ (Banerjee et al., 2015, p. 32). These workers sometimes used their own unpaid labour and free time to fill in the gaps. A recent special issue of the Journal of Clinical Nursing reviewed research on the barriers of PCC for people living with dementia from the perspective of nursing staff (Kong et al., 2021), finding conditions of insufficient resources and poor and unsupportive relationships within the residence itself. While Kitwood claimed that poor care was a form of ‘a malignant social psychology’ to be countered by his 12 interactions of ‘positive person care’ (Kitwood, 1997, pp. 119–120), neither he nor his followers adequately considered the training, labour and emotional implications of these tasks for caregivers (Davis, 2004), nor the basic structural changes required to allow care workers and family caregivers to enact the recognition of persons with dementia according to PCC principles (Leibing, 2019, 2021). A related problem in PCC raised by critics and central to this chapter is the question of the meaning of ‘person-centredness’ as an ethic of care practice (Dewing, 2008, p. 3). Care-giving for persons with dementia is already an asymmetrical relationship where the status of personhood, however vague, is conferred by others (without dementia). As Higgs and Gilleard remark, The problem with adopting a personhood-centred approach to helping people with dementia is that it fails to recognise the distinction between these two aspects of personhood, namely, the standing of persons and the capabilities of personhood. By failing to recognise the distinction, this approach risks placing the burden of responsibility on other persons, other selves, to sustain the personhood of individuals with 62 Stephen Katz and Annette Leibing dementia (in the sense of preserving people with dementia’s capacities for personhood), as well as sustaining the due moral concern for them. (2016, p. 25) Indeed, we may question whether better care or empathetic nursing necessarily requires a PCC managerial programme at all, including its extensive agendas and tasks for sustaining agency, well-being, self-expression and identity. And in cases of advanced dementia, if the only agent is the care provider, for the care recipient this can mean that ‘there may be an end to needing to express oneself, and an end, even, to wanting to be someone’ (Higgs and Gilleard, 2016, p. 134). Critics of these and other problems with PCC, while recognising its benefits and bold radicalisation of Stage 1 medical models, have looked to different ideas about self and personhood in order to further critical dementia studies. These mark a departure from Stage 2 and its development of PCC and give rise to Stage 3 of dementia research based on broad concepts of relationality, embodiment, discontinuity and materiality. Phase 3: De-centring humanism The universalising notions of person and selfhood implicit in PCC and its one-way models of care became targets of critical dementia researchers who share a general project of de-centring or revising traditional notions of self and personhood and their associations with dominant formations of power. These include contributions adapted from feminist and theoretical work in phenomenological embodiment, post-humanism, post-structuralism, decolonialism and materiality studies. For example, embodiment in dementia is one of the central discoveries of the work of Pia Kontos. While she maintains the importance of selfhood for persons with dementia, she explores how it is expressed in bodily, rather than strictly cognitive, ways (Kontos, 2015; Kontos et al., 2017). Kontos uses a ‘pre-reflexive’ phenomenological notion of embodied selfhood, whereby the capacities, senses, routines and repertoires accumulated in a person’s life via their bodies remain important meaning-making resources for being in the world, even if individual status has been fragmented. Thus, for Kontos and her colleagues, dementia-related behaviours often treated as disturbing such as wandering, incoherence or non-compliance should be seen more empathetically and closer to other typical activities that suggest life-long bodily dispositions, representing a person’s distinctly persistent self from a non-neurocentric perspective. In this approach, arts-based and story-telling programmes are encouraged because they ‘draw significantly on the body’s potentiality for innovation and creative action, and significantly support non-verbal communication and affect’ (Kontos, 2015, p. 176). Nicholas Jenkins (2014, see also Chapter 7), in his interpretation of bodily relationality, adds that care interventions should not aim to ‘repair’ the Critical perspectives on personhood and dementia 63 broken self nor recover the former self as much as enliven the relationality of the ‘inter-embodied self’. Contrary to person-centred approaches, the inter-embodied self does not require a unified or coherent narrative in order to thrive. On the contrary, our inter-embodied selves may be more fruitfully conceptualised as montages; polyphonic repertoires of voices and experiences that co-exist in dialogical relationship to one another; constantly updating, constantly changing. (Jenkins, 2014, p. 133) For this kind of relational and bodily framework to influence care, the idea of individual linear narrative time itself is also questionable, since inter-bodied knowledge is an exchange among individuals within conjoint world-making activities unbounded from the individual her-/himself. Here world-making is also a collaboration of the material agents, both human and non-human, and their ever-changing contexts. These might include things, smells, sounds, atmospheres, machines, colours and textures. As Nicky Hatton explains, dementia care and living environments are a ‘moving materiality’ that is felt, not just inhabited, and may involve components that cannot be seen or touched (Hatton, 2021, p. 74). Even sleep in these environments, assumed to be an individual’s disengagement from the material world, may be a form of negotiation about personal time and boundaries or a defence against being overwhelmed, and as such enable residents to move into a strategic and deliberate ‘slow time’ in order to create distance from structured managerial temporality (Hatton, 2021, p. 165). Lee and Bartlett (2020) also develop a ‘material lens’ to detail the overlooked but vital relational world of objects, possessions and living spaces for people with dementia living in a care residence, advocating for a ‘material citizenship’ to counter the loss of material control. Some of these propositions accord with a wider post-humanist movement in ageing studies that attempts to de-centre the continuities of self, biographical coherence and autonomous agency that define the status of the human subject in conventional humanism. Post-humanism is both a recognition of those who have been violently marginalised as less-than-human and polarised into being ‘other’ (Braidotti, 2020), and a critique of universalising notions of individuality that gave rise to a ‘regime of the human’ (Tsing, 2015, p. 19). In the case of dementia, post-humanist critiques recognise that care is more than a relationship between two people, but involves a ‘constant flux of tools and technologies, behaviours, embodiments, economies and ecologies’ (DeFalco, 2020, p. 51). Further research linking post-humanist thinking to dementia draws upon studies of decolonising and Indigenous knowledges and their expansive collaborative visions and ‘twoeyed approaches’ (Webkamigad et al., 2020) of collective identities, healing landscapes and community resources (see Asker and Andrews, 2020; 64 Stephen Katz and Annette Leibing Povinelli, 2016). For example, the value of ‘place-ing’ dementia care among the Southern Inuit of Labrador (Pace, 2020) or the Chocktaw interpretation of memory loss as the mind being spiritually ‘elsewhere’ (Grande, 2018; Henderson and Henderson, 2002), along with other Indigenous ways of understanding dementia (Hulko et al., 2019), contest the colonial legacy embedded within settler gerontologies about individual loss and alienation (see also Chapter 16). Another dimension of Stage 3 dementia research is poststructuralist studies that challenge the re-traditionalisation of sexual identities within the personhood movement (Sandberg, 2021; Sandberg and Marshall, 2017; Silverman and Baril, 2021). For these writers, the pressure to express a selfhood linked to a continuity with a hegemonically gendered past contributes to the crisis of loss of self for persons with dementia. However, according to these critics, dementia is more an experience of a changing self rather than one in need of recovery framed by PCC concepts of personhood (see also Chapter 15 and 17 in this volume). Indeed, one of the key themes of Stage 3 dementia research is its deconstruction of normative forms of selfhood and identity associated with taken-for-granted expectations of continuity in time in dementia care. For example, Anne Basting’s work has demonstrated how creative imagination and its benefits for persons with dementia are best recognised in the co-created co-presence apart from assumed continuities of the past (Basting, 2009, 2020). As Basting says, Creative care is an agreement between people to imagine themselves, each other, and their worlds a little differently. It is an invitation to shape the world together. For people denied the tools for world-shaping, this invitation can be a profound and life-changing act of healing. (2020, p. 57) In his work on dementia and memory, Katz also questions how memory itself is a historical conceptualisation (2012, 2013), and is exploring how living with dementia may be a window onto the experience of noncontinuous temporalities (Katz, 2021), akin to Henri Bergson’s idea about the fluid co-existence of past and present memories (Bergson, 1939; Deleuze, 1988). For Bergson, memories include dreams, fantasies, possibilities and mirages that exceed location in linear time, such that memory is not a possession – although it may be recollected and uttered in the possessive and thus attributed to an individual as a content of consciousness or the brain. Pure memory is in excess of recollection, actuality or consciousness. It is we who belong to memory, to different planes of the past. (Al-Saji, 2004, p. 228) Critical perspectives on personhood and dementia 65 This idea of an intermingling, rather than a continuity, of points in time undermines the essentialist sense of individual identity and resonates with a different kind of duration as the term is defined by Elizabeth Grosz: Duration is that which undoes as well as what makes: to the extent that duration entails an open future, it involves the fracturing and opening up of the past and the present to what is virtual in them; to what in them differs from the actual, to what in them can bring forth the new. This unbecoming is the very motor of becoming, making the past and present not given but fundamentally ever-altering, virtual. (Grosz, 2005, pp. 4–5) This exciting idea of duration of temporalities – to undo and to make, to un-become and to become, to create and to alter memory, to live in a multitude of temporal flows – is a way of de-centring the limits of purely humanist personhood and rethinking how memory loss can be part of the duration of temporality. Returning then to our introduction, Batty’s self-reflection of being ‘like tears in rain’ when applied to dementia could mean the ‘soul-searching’ in persons often described as having lost their selves. But it can also be read as a wish to enlarge the scope of personhood itself, as belonging to a wider community of diverse citizens of the kind that relational, materialist and post-humanist writers promote. Such an approach moves the focus away from the individual self, which ultimately remains the ‘other’ (Leibing, 2018) even within personhood approaches, and instead prioritises the environmental contexts, conditions of existence and landscapes of ageing around the needs of the individual living with dementia. It is this approach that frames our questions for further research in the Conclusions. Conclusions: Both rain and tears The three stages of dementia research summarised above represent important reflections about our humanity, encapsulated by debates about self and personhood, memory and time, authenticity and vulnerability, agency and dependency, and individualism and relationality. They further show that Prainsack’s warning – that the kind of personhood we propagate is not without consequences – needs to be considered in our discussions around dementia care and more generally about all kinds of care, including selfcare. Following the medically dominated Alzheimer’s Movement in Stage 1, Stage 2 was framed by the need to recognise the previously unacknowledged individual and her (‘lost’) self – the separation of the single tear from the rain, to return to our cinematic metaphor. Dementia research in Stage 3 proposes an altered direction: zooming away from the single tear as a specific agent (at risk of disappearing in the rain) to perspectives that 66 Stephen Katz and Annette Leibing reconnect the tear to the rain by transcending anthropocentric ideas and conceiving the person with dementia as entangled in embodied, relational or more-than-human relations and environments. And while both Dementia stages 2 and 3 are important advances over Dementia stage 1 and overlap in their compassion for the lives of persons living with dementia,4 both suggest areas for further research that encompass context, policy, cultural and structural factors that shape all dementia care.5 At the same time, we cannot ignore the reality that people living with dementia are still individuals who suffer and need support and who must be recognised as such. However powerful are the critiques that transcend gendered, disabled and colonised elements of personhood, these may not be sufficient to ensure a vision of best practices of care (see Leibing, 2019). For example, Leibing’s ongoing anthropological work in Brazil illustrates how personhood (a term not used in Brazil) is situated in contexts of family and professional care that provide an interactive series of relationships that both include and relieve the individual with dementia of the pressures of self-care. Brazil is a culture based on reciprocity and strong communal interdependency in, at the same time, a deeply divided and hierarchical society (DaMatta, 2020). The absence of a dependable social net manifests in the necessity of creating one’s own connections, both within and outside family relationships, along with negotiating the ways in which gendered family care labour is organised. The person with dementia, often infantilised as being in a completely dependent state that excludes the search for personhood, is still part of a greater constellation made up of predominantly family relations. This set of circumstances explains why, for example, it is unacceptable for older people to arrive unaccompanied at geriatric clinics. As anthropologist Cintia Engel (2020) shows, for the less privileged in Brazil, the complicated and extremely stressful ways of embedding a family member with dementia in the multiple networks of care resources require a mobilisation of family members, community and related institutions in a constant patchwork of care-related activities. This patchwork also intersects with the communal overtones of the pharmaceutical market in Brazil.6 Brazil is but one example of the cultural inseparability between a person with dementia, caregivers, family, community and the relations, resources, medications and pathways of access that mobilise around them, even in the poorest of circumstances. In their recent book, American Dementia: Brain Health in an Unhealthy Society (2021), George and Whitehouse argue that real change in dementia care and brain health depends on reversing the deepening social inequalities, accelerating environmental destruction, and growing precarity and instability of living communities (for both human and non-human inhabitants). The evidence of dropping incidence rates of dementia in several countries due to better access to educational and health resources signals to these authors that ‘winning the struggle for a fairer political-economic order where prosperity is more inclusively shared and the public’s health and well-being is once again aggressively protected will Critical perspectives on personhood and dementia 67 provide the conditions for everyone to build greater resilience to brain aging’ (p. x). Carol Brayne, one of the first researchers to alight on falling dementia rates in the UK, when asked in an interview about what would lower dementia risks further in the future, responds: I’d think about maternal health, about the environment in which children grow up and their education. I’d think about health interests and the way we educate children to understand their own risks and the good that they can do themselves. I would want to look at the whole system; not only the health aspects across the life course, but how we can encourage localities and governments to implement strategies, whether it be laws, transport systems, or ways to address local communities that are sensitive to the risks. (New Medical Life Sciences, December 7, 2015) In these scenarios in Brazil, America, the UK and across the world, where politics, society, history and collective action are the resources now and into the future that shape and change dementia care, personhood is much bigger than the individual. Personhood is polymorphic and entwined with ‘socio-material modes of togetherness’ (Duclos and Criado, 2019, p. 161), as they are made and un-made in multiple sites, diverse temporalities and heterogeneous distributions. Together, as our chapter has outlined, the relationship between personhood and dementia as a relative modern problem of ageing has tapped into a deep and reflecting well of historical meaning about the dilemmas of human sociality. Roy Batty may have been right that liminal life is lost like tears in the rain, but both are made of the water that constitutes all existence and connects all things. Notes 1 Dementia is an umbrella term for a number of conditions with changing nosologies and aetiologies over time, of which Alzheimer’s disease is the most wellknown form. 2 In reality the condition had been described before, but Emil Kraepelin’s influential textbook on psychiatry (1910) attributed the ‘discovery’ to his friend and colleague Alois Alzheimer (Berrios, 1996). 3 After Serrano-Pozo et al. (2017), funding of dementia research started in 1975 and budgets steadily increased, reaching an amount of around $8 billion (US) worldwide in 2010, and started then to decline slowly. 4 An exceptional example is the project Carpe Diem in Québec, where there is not only person-centred care as a central philosophy but also the provision of a home-like house and care where providing autonomy and, as much as possible, an experience of ‘normal’ life for residents is central, even if considerable risks are taken, such as letting residents walk alone in the streets of Trois-Rivière where Carpe Diem is located. Less is known about how such models deal with the needs of persons with an advanced dementia. https://alzheimercarpediem. com/lapproche-carpe-diem/lapproche-carpe-diem/. 68 Stephen Katz and Annette Leibing 5 Some of these issues have been approached by critiques of personhood in dementia as a problem of citizenship and disability (Baldwin and Greason, 2016; Bartlett and O’Connor, 2007). 6 The empirical data have been previously published in Leibing et al. (2019). Also see Leibing (2021) on the vascularization of Alzheimer’s disease and its impact on geriatric care. References Al-Saji, A. (2004) ‘The Memory of Another Past: Bergson, Deleuze and a New Theory of Time’, Continental Philosophy Review, 37, pp. 203–239. Alzheimer Society of Canada. (2011) Guidelines for Care: Person-Centred Care of People with Dementia Living in Care Homes. Toronto: Alzheimer Society of Canada. Asker, C., and Andrews, G. 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