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1.
Cult Med Psychiatry ; 47(3): 766-789, 2023 Sep.
Article in English | MEDLINE | ID: mdl-35773502

ABSTRACT

'Nostalgic environments' are increasingly being created in museums and institutional care settings for people with dementia, to support residents' capacities for memory and recognition. Drawing upon ethnography carried out in a public nursing home specialized in dementia care in Copenhagen, Denmark, this paper engages conceptually the employment of material heritage within dementia care environments, proposing dementia care as a 'curatorial' practice: caregivers act as 'curators' who re-establish and reorganize the 'meaning' of the residents by preserving their individual biographies and societal belonging. The analytical alignment of dementia care with the curating of cultural valuables reveals that the human is not only the subject within-and the creator of-cultural heritage, but also the object: the person with dementia is simultaneously an acting subject in care and an object for performances of the category of the human. As the curatorial care performed in nursing homes preserves not only individual, but also collective memories of what it takes to be human and belong in society, these institutions should be recognized as significant sites within society concerned with the production of meaning, value and cultural heritage.


Subject(s)
Dementia , Humans , Dementia/therapy , Nursing Homes , Anthropology, Cultural , Caregivers , Personhood
2.
Cult Med Psychiatry ; 41(2): 202-223, 2017 Jun.
Article in English | MEDLINE | ID: mdl-28101699

ABSTRACT

At the heart of anthropology and the social sciences lies a notion of human existence according to which humans and animals share the basic need for food, but only humans have the capacity for morality. Based on fieldwork in a pig laboratory, a neonatal intensive care unit (NICU), and a dementia nursing home, we follow practices of feeding precarious lives lacking most markers of human personhood, including the exercise of moral judgment. Despite the absence of such markers, laboratory researchers and caregivers in these three sites do not abstain from engaging in questions about the moral status of the piglets, infants, and people with dementia in their care. They continually negotiate how their charges belong to the human collectivity and thereby challenge the notion of 'the human' that is foundational to anthropology. Combining analytical approaches that do not operate with a fixed boundary between human and animal value and agency with approaches that focus on human experience and virtue ethics, we argue that 'the human' at stake in the moral laboratory of feeding precarious lives puts 'the human' in anthropology at disposal for moral experimentation.


Subject(s)
Personhood , Value of Life , Animal Experimentation/ethics , Animals , Dementia/therapy , Humans , Infant, Newborn , Infant, Premature , Intensive Care Units, Neonatal/ethics
3.
Med Anthropol Q ; 2017 Mar 06.
Article in English | MEDLINE | ID: mdl-28261857

ABSTRACT

This article investigates how a person with dementia is made up through intersubjective acts of recognition. Based on ethnographic fieldwork in a Danish memory clinic, we show that identification of disease requires patients to be substituted by their relatives in constructing believable medical narratives; yet during memory testing, patients are not allowed any substitution to clearly expose cognitive shortcomings. In combining works of theorists Ian Hacking and Paul Ricoeur, we argue that the clinical identification of dementia unmakes the knowing subject, a deconstruction that threatens to misrecognize and humiliate the person under examination. The article ends by proposing that dementia be the condition that forces us to rethink our ways of recognizing persons more generally. Thus, dementia diagnostics provide insights into different enactments of the person that invite us to explore practices of substitution and modes of interaction emerging when our fundamental dependency becomes unquestionable.

4.
Soc Stud Sci ; : 3063127241255971, 2024 May 31.
Article in English | MEDLINE | ID: mdl-38819129

ABSTRACT

How do precision medicine initiatives (re)organize relations between individuals and populations? In this article, we investigate how the curation of national genomic populations enacts communities and, in so doing, constructs mutual obligation between individuals and the state. Drawing on ethnographic fieldwork in the Danish National Genome Center (DNGC), we show how members of advisory bodies negotiated the inclusion criteria for two different genomic populations: a patient genome population and an envisioned 'Danish' reference genome population. The patient genome population was curated through a politics of inclusion, of as many genomes as possible, whereas the reference genome was to be curated through a politics of exclusion, to include only the genomes of 'ethnic' Danes. These two data populations configure differently the community of 'Danish patients' who might benefit from precision medicine, and thereby prescribe different moral continuities between person, state, and territory. We argue that the DNGC's patient genome population reinforces reciprocal relations of obligations and responsibility between the Danish welfare state and all individuals, while the proposed Danish reference genome population privileges the state's commitment to individuals with biographical-territorial belonging to the nation-state. Drawing on scholarship on social and health citizenship, as well as data solidarity in the Nordics, the discussion shows how population curation in national precision medicine initiatives might both construct and stratify political obligation. Whereas STS scholarship has previously deconstructed the concept of 'population', in the context of the troubling and violent effects of the management of human populations, we point to the importance of population curation as a vehicle for making the individual legible as part of a community to which the state is responsible and for which it is committed to care.

5.
Med Anthropol ; 38(1): 44-58, 2019 01.
Article in English | MEDLINE | ID: mdl-29764193

ABSTRACT

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.


Subject(s)
Adult Children , Dementia , Personhood , Adult , Adult Children/ethnology , Adult Children/psychology , Aged , Anthropology, Medical , Dementia/ethnology , Dementia/psychology , Denmark/ethnology , Humans , Memory , Nursing Homes
6.
Soc Sci Med ; 184: 116-123, 2017 07.
Article in English | MEDLINE | ID: mdl-28521264

ABSTRACT

This paper approaches institutionalized dementia care as a site of societal disposal, valuation, and care for human life. Drawing upon six weeks of ethnographic fieldwork and ten qualitative interviews carried out in a Danish dementia nursing home in 2014, we analyze how nursing home staff, through everyday care, uphold the value of life for residents in severe mental and physical decline. We argue that life's worth is established when residents gain qualities of personhood and agency through substitution processes carried out by staff. Yet the persistent absence of conventional personhood and autonomous agency in residents (i.e. capacities for memory, consciousness, language, and mobility) evokes experiences of ambiguity in staff and relatives of residents. We close the article with a discussion of this ambiguity and the significance of the nursing home as care institution in the welfare state. Dementia care, we propose, is not only about preserving the lives of people with dementia. At stake in the daily care practices around severely disabled residents in the nursing home is the very continuance of the main principles of the welfare society.


Subject(s)
Dementia/psychology , Nursing Homes/organization & administration , Value of Life , Anthropology, Cultural/methods , Dementia/nursing , Denmark , Female , Humans , Male , Qualitative Research , Quality of Life/psychology
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