The clock-drawing test: reading temporalities of dementia from clinical chart notes

Medical Anthropology, 2018

How do time and personhood become related when dementia sets in? This article brings together ethnographies from a memory clinic and a dementia nursing home in Copenhagen, Denmark, pursuing how personhood and time become intertwined across early and late-stage dementia. In the memory clinic, the dementia diagnosis is enacted and experienced simultaneously as an indispensable prophecy of discontinuity of personhood and life for the patients, and as a prognosis that renders the future indeterminate and open to intervention. In the nursing home, institutionalized care marks the fulfillment of the prophecy of decline, yet nursing home staff insist on practicing prognoses for the residents. Across our empirical sites, we enquire what the tension between prophecy and prognosis mean for personhood and the possibilities of the present, arguing that people with dementia are made and unmade through different understandings and enactments of future-oriented temporalities.

Journal of Aging Studies, 1995

Israel. Z+e ethnography describes three time-structuring processes.. (1) Revising the Past-constituting boundaries between past andpresent through "autobiographies of illness': (2) Denying the Future-constructing boundaries

In: Critical Dementia Studies: Affinities, Resistances and Alliances. Linn Sandberg and Richard Ward (eds.). , 2023

A critical overview of dementia approaches on personhood (an alternative model will be discussed in a forthcoming publication)

2014

El articulo presenta el uso de titeres dentro del trabajo con personas con demencia. A partir de la nocion de Foucault de que el conocimiento se construye dentro de estructuras de relaciones de poder, cuestiona la idea de la productividad como proposito, y destaca el potencial de la imaginacion, la creatividad y el momento vivido para posibilitar el bienestar. El articulo analiza dos casos extraidos de cafes de la memoria y centros de dia de Devon, en el Reino Unido, en los que los participantes en los proyectos fueron invitados a contribuir en el desarrollo de actuaciones teatrales por medio de la interaccion con titeres y otras actividades relacionadas. El articulo analiza tambien las cualidades particulares de los titeres para posibilitar estos intercambios, y su potencial como objetos flexibles y sensibles, capaces de operar simultaneamente en multiples niveles para promover la actividad creativa. Se incluyen otros ejemplos de trabajos realizados en los EE. UU., Argentina, Alema...

2020

Background. Alzheimer’s Disease (AD) is a neurodegenerative illness, which occurs with increasing frequency as people age, and is currently a disease beyond curative therapeutic possibilities. While progressive memory impairment is the upfront element associated with the disease, other neurocognitive problems are also associated with it, such as language impairment that tend to degenerate into aphasia. The paper presents singular representations of time in such patients’ lived experience, which with the course of the disease gradually move away from the real present around them. In consequence, they live in a bygone era. The dimension of the perceived world implies an anchoring in temporality in the present by using the resources of the past. This becomes impossible with the progression of the cognitive disorders. Multiple psychological tensions result from patient’s maladjustment to temporality. Objective. The article attempts to define the singular experience of the time of the de...

Critical Dementia Studies: An Introduction (eds. Richard Ward & Linn J. Sandberg), 2023

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 6 'Lost in time like tears in rain'

Sociology of Health and Illness, 2022

Dementia is a global health challenge and currently the focus of a coordinated international response articulated through the notion of 'dementia-friendly communities and initiatives' (DFCIs). Yet, while increasing research attention has been paid to the social and spatial dimensions to life with dementia in a neighbourhood setting, the temporalities of dementia have been largely overlooked. This article sets out different aspects of the lived experience of time for people with dementia and unpaid carers, before exploring the temporal politics of formal dementia care and support. The authors show that time is a site for material struggle and a marker of unequal relations of power. People with dementia and unpaid carers are disempowered through access to formal care, and this is illustrated in their loss of (temporal) autonomy and limited options for changing the conditions of the care received. The authors advocate for a time-space configured understanding of the relationship with neighbourhood and foreground a tempo-material understanding of dementia. Set against the backdrop of austerity policy in the UK, the findings reveal that ongoing budgetary restrictions have diminished the capacity

Journal for Cultural Research, 2001

I would like to write about the lessons I learnt from encountering dementia-knowing that the contiguity of these concepts needs explanation: dementia and encounter, dementia and learning. Caring is an intimate experience, its language-for me-is in the first person singular. By speaking in the plural, I want to mark the contours of an invisible community to which I belong: a vast but unacknowledged group of people whose loved ones live with dementia. It is a community whose needs have fallen out of sight of the Hungarian welfare system along with the needs of those living with the disease.

The article gives an account of various disturbed experiences of time from a phenomenological perspective. The author distinguishes three levels for addressing variations of temporal experience—the temporal structure of consciousness itself, the actual experience of time, and the sociopolitical temporality. He excludes the psychological type of argument, exemplified by Philip Zimbardo’s Time Perspective Inventory and concentrates on disorders in which the temporal structure of consciousness is itself altered. The clinical examples of disturbed temporalities being investigated come from studies of two influential, 20th-century German phenomenological psychiatrists: Ludwig Binswanger (1881–1966) and Viktor Emil von Gebsattel (1883–1974) and include mania, phobia, schizophrenia, depression, and addiction. Philosophical examples come from Hannah Arendt’s “The Life of the Mind.” It is argued that not all disturbed experiences of time related to mental disorders are pathological, but that we can distinguish such experiences from their less severe varieties by appealing to the value-free norm of primordial temporality. A psychotic experience of internal time of the self coming to a standstill exemplifies such a pathological situation, in which temporal experience is not only altered, but ruined.