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- Convenors:
-
Ida Marie Lind Glavind
(The Danish Center for Social Science Research)
Ida Vandsøe Madsen (University of Copenhagen)
Laura Vermeulen (University of Humanistic Studies)
Lone Grøn (VIVE The Danish Center for Social Science Research)
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- Discussants:
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Lawrence Cohen
(University of California Berkeley)
Janelle Taylor (University of Toronto)
- Formats:
- Panel
Short Abstract
This panel explores how dementia can help us as anthropologists to critically think about differences, the relation between anthropologies of suffering and of the good, and our methods.
Long Abstract
Under the heading “Senility as a Matter of Voice” Cohen (2006) raised the intriguing question of how it is that among three great figures of mental anguish prominent in European thought before the 19th century – melancholy, lunacý and senility – the two first became central to the reflexive accounting of modernity. Senility, however, became a figure disjunctive from the self-understanding of European modernity. Taking up Cohen’s call to not only think about but also with senility – or dementia – , we ask: If dementia had a voice, what would it say? What can we learn from dementia about living in polarised worlds?
Grasping the other has been quintessential to the influential ‘personhood turn’ scholars. Ever since Kitwood suggested the medical model of dementia could be turned on its head in the early 1990s, anthropologists have explored how our methods and key concepts may be transformed in order to understand and critically work with dementia’s difference. In this panel, we home in on how more recent anthropological work is thinking with dementia: What potentialities are emerging in various ways of thinking with difference? What might the multiplicity of diverging voices encountered in lives with dementia teach us about the relation between anthropologies of suffering and of the good? How to rethink our methods from the in-between formed in lives, societies and research with dementia? And what forms of critique do these questions point to? We especially welcome empirical contributions from other parts of the world than Europe or the US.
Accepted papers
Session 1Paper short abstract
Ethnographies of relations between people with dementia prompt the decentering of dementia-as-difference as a carefully critical practice. Instead, situational, performative notions of sharedness and divergence might bolster the right to opacity (Glissant 1997) – or not to be particularly different.
Paper long abstract
Dementia has been articulated in relation to normality in multiple ways, sometimes highlighting its emancipatory potential. Definitions of dementia-as-difference indeed impact upon caring and dwelling with the condition. But is such redefining a sufficient – and even necessary – critical practice if, as queer, decolonial, and feminist literatures show, “any attempt to integrate otherness by ‘addressing’ difference is fraught” (Meissner and Heil 2021, 742)?
Relations between persons with dementia amplify this question, reminding that socialities result from correspondence in situations where it is unclear and unstable who the other is. Drawing on ethnographic collaboration in a daycare center in Belgium, I suggest carefully critical practices (Puig de la Bellacasa 2017) that affirm these neglected relations and reflect the situational, performative notions of sharedness and divergence these manifest.
Here, I analyze lunch times – moments of synchronization – in light of a “differential social ontology” (Gron and Dyring 2021). This critical phenomenological analytic evinces that shared realities emerge in relations between relations (e.g., between bodies and their stomach, or othered bodies) that re-arrange the differences that matter. Thickening differentially shared worlding, I engage the concept of “convivial disintegration” (Meissner and Heil 2021) – a provocation of inclusion as a maxim that establishes the open-endedness of differential dwelling.
I suggest that decentering difference is urgent, and speculative: moving towards care in the community, it is likely that not more expertise, but agility in uncertainty and discomfort are critical and foster the right to opacity (Glissant 1997) – not to be particularly different.
Paper short abstract
In Yarumal, Colombia, where many families live with hereditary early-onset Alzheimer’s, promising is shaped by anticipated forgetting. This paper asks why people keep promising to those who will forget, and how promises persist through artifacts and embodied practices beyond speech and memory.
Paper long abstract
In Yarumal, Colombia, about 6,000 people descend from a common ancestor, and roughly 1,200 carry a genetic mutation that causes hereditary early-onset Alzheimer’s. They are the largest known family lineage in the world with this disease. Symptoms appear around age forty, sometimes earlier, when many are still raising children and caring for parents. Within a single household, several people may be in different stages of the disease, making the work of keeping promises a shared, intergenerational task. In this setting, even simple promises (e.g., “I’ll be back this afternoon”) become difficult: those who make them and those who receive them know that forgetting awaits. Yet people keep promising.
This paper asks (1) why people make and keep promises to those who will forget, and (2) how promises enter the intimate spaces of the family. Drawing on medical records, everyday family artifacts, and body readings, it traces how promise-keeping persists and is continually renegotiated beyond speech and individual cognition. More broadly, it offers ethnographic insight into a foundational moral-philosophical question: what binds us to one another across memory and forgetting? In a town where people keep promising despite forgetting, I ask what kinds of language, artifacts, and care make promises possible.
Paper short abstract
This paper is an ethnography of domestic dementia care in a rural Chinese household during the pandemic. It examines how illness experiences of dementia may challenge, even rupture, family relationships, and how that reveals the contingency of dementia and incongruity of kinship relatedness.
Paper long abstract
This paper focuses on an ordinary afternoon in a rural Chinese household that cares for an elderly couple, both living with dementia, during the Covid-19 pandemic. It unfolds in two acts. Act One centres on a paid domestic carer who wants to quit her job and complains about the challenges of care in explicit kinship terms. Reflecting on her departure, the father and son get into a physical fight rooted in contested understandings of opaque illness conditions and care arrangements, as Act Two elaborates. What brings these two acts together analytically is sustained engagement with a Chinese idiom that surfaced repeatedly during my 22 months of fieldwork (2021-2023) on dementia and care in southern China: ‘No child can stay filial for long by the side of a bedridden parent’. I explore the two acts and vernacular understandings of the idiom to examine how elusive illness experiences of dementia may challenge, even rupture, kinship relationships in the setting of domestic care, especially at a time of precarity. By bringing dementia studies into dialogue with anthropology of kinship, I argue that dementia reveals the incongruity between kinship ideals, such as filial piety, and lived actions of relatedness as embodied in practices, reflections, and attempts – including failed ones - to care. Situating dementia within an evolving sociality of Chinese kinship, and vice versa, I highlight the contingency and indeterminacy of dementia as a situated phenomenon both within and beyond the medical domain.
Paper short abstract
Drawing on ethnographic work in the Netherlands, I explore ‘generational openings’ invited by dementia. I argue that attending to such openings helps unravel the intertwining of two differences key to 'good' anthropology's envisioning of better lives against the backdrop of social critique.
Paper long abstract
The study of ‘difference’ has long been both one of anthropology’s most distinctive and most contested features. This is again highlighted in recent debates on an anthropology of the good (see Robbins 2023; Ortner 2016), which centre on the kind of ‘difference’ deemed best able to give anthropology its voice. I build on the critical phenomenological distinction between difference as pertaining to social positioning and difference as an interruptive singularity (Dyring 2024; Mattingly 2022; Guenther 2011). I do so to analyse how life with dementia’s rubbing together of social and temporal folds of generationality (O’Byrne 2023) allows paradigmatic insight into ways of combining social critique and showcasing better ways of living (Ortner 2016).
I draw on five years of fieldwork on everyday lives with dementia in the Netherlands, zooming in on a friendship between two community-dwelling men living with early-onset dementia. Exploring their shared time, I suggest that their different social positionings and opposing views of dementia as either a source of suffering or as inspiring the good life were generatively unsettled in moments of mutual imagination and play.
I elaborate on such moments as ‘generational openings’, exploring how the study of these ‘openings’ may both help to describe generative events that arise when generational time folds in unpredictable ways, and point a way forward in efforts to envision better ways of living against the backdrop of social critique.
Paper short abstract
Drawing on ethnography in an Italian town, this paper I argue that dementia is “looked into being” through perceptual labour. I probe ethnographic method as an anamorphic practice that holds together, in tension, multiple and clashing views of dementia without resolving them.
Paper long abstract
Starting from the premise that dementia emerges through the perceptual labour of those who attend to it, listen to it, and craft its stories, this paper draws on ethnographic fieldwork conducted in a small town in northeast Italy to examine how dementia is “looked into being” through multiple, coexisting perceptual regimes. Focusing on people living with dementia, family caregivers, care professionals, and members of the broader community, I trace how distinct modes of attention and sensory discernment enacted divergent images of senility, ranging from ideals of "bella figura"—dignified, coherent, and socially legible personhood—to more unsettling, uncanny, or fractured forms of presence. These images differed in their degrees of articulation, institutionalization, and local circulation, yet shared a limit: they could travel only so far and be sustained only to a certain degree, within particular relational and material settings.
To hold these partial and often incompatible perspectives together, I develop ethnography itself as an exercise in anamorphism. In an anamorphic rendering, distinct perceptual positions do not yield alternative interpretations of a single object, but actively bring different objects into view—on the same canvas. As a result, the images of dementia traced here do not accumulate into a unified account; rather, they emerge through shifting alignments of bodies, institutions, affects, and expectations. This methodological move enables the analytic co-presence of incompatible yet coexisting dementia realities, while sustaining attention to the conditions under which phenomena come into focus—and, just as importantly, slip out of it.
Paper short abstract
This paper explores interpersonal and interspecies atmospheres in ethnographic fieldworks from private homes, day centers and nursing homes in Denmark arguing that attention to atmospheres can help articulate neuro-diverse, species-diverse and world-open accounts of generative dementia socialities.
Paper long abstract
A deer stares out from the computer screen while Hans, Eva and the visiting anthropologist engage in highly emotionally charged and mournful conversation about living with dementia. Multiple game mounts cover the living room walls and deer invigorates the rather sparse conversation between four men at a dementia day care center. In a dementia nursing home, the arrival of the visitation dog, Johnny, transforms the tranquil atmosphere between the residents doing nothing much to one of elation.
In this paper, we draw on fieldworks in private homes, day centers and nursing homes in Denmark conducted from 2021 to 2023, which contain a multiplicity of diverging voices on what lived experiences – good, bad or good enough - with dementia amounts to. To articulate this multiplicity – including voices and signatures of other-than-human interlocutors - we will think with phenomenological work on atmospheres as quasi-things (Schmitz) and interpersonal atmospheres (Osler) to explore lived social experiences of dementia - paying special attention to generative intersections of interpersonal and interspecies atmospheres.
In an attempt to both build on and expand the personhood turn in dementia studies, we argue that attention to atmospheres can highlight the highly volatile, situational and singular in-between spaces of our dementia fieldworks in ways that allow for a neuro-diverse, species-diverse, world-open and social differential ontological account of generative dementia socialities.
Paper short abstract
Anthropology has long discussed how “the other” is represented. Drawing on ethnographic research in Denmark, our paper explores tensions in portraying dementia, balancing agency and struggle. It argues that dementia’s ambivalence holds a potential to bridge “good” and “dark” anthropology.
Paper long abstract
Anthropologists have long been conscious that the writing and representation of cultural differences also entails the power to define and construct “the other” (Clifford & Marcus 1986, Said 1978). Within anthropological studies of dementia, scholars have been profoundly influenced by the “personhood turn” (Kitwood 1997), which rightly challenges dehumanising portrayals but also installs a moral imperative to foreground agency and a positive outlook. While productive in a dominant backdrop of the haunting image of dementia as inevitable loss and despair, we ask what may be flattened when representation is guided too rigidly by this framework?
Drawing on extensive ethnographic research conducted among people with dementia and relatives in Denmark, we examine a central tension that has shaped our own research and writing: How to convey lived experiences of dementia in ways that acknowledge dementia’s generative potentials while remaining attentive to the very real struggles it involves?
Presenting ethnographic examples of life with dementia from both ends of the spectrum, we approach dementia as a form of cognitive variation that “speaks back” through its effects, socialities, and ambiguities. Our contribution is not a resolution but an attempt at balance: holding vulnerability and dignity, loss and meaning, together without collapsing one into the other. By insisting on the omnipresent ambivalences in life with dementia, we argue that dementia presents itself as a critical potential to bridge the continuous debate between the anthropology of good (Robbins 2013, 2023) and dark anthropology (Ortner 2016).