Time and Personhood across Early and Late-Stage Dementia

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.

KEYWORDS:

• Denmark
• care
• dementia
• memory clinic
• person
• temporality

Acknowledgments

Our first thanks go to the people with dementia and their relatives, and the clinicians and caregivers in our study. In interviews, relatives generously shared with us their tough experiences of dementia in a loved family member, and clinicians and caregivers kindly allowed Iben to take part in their daily work with patients and residents. We are grateful to our LifeWorth colleagues, Mie S. Dam, Laura E. Navne, and Lene Koch for their ongoing inspiring and critical engagements, and the brilliant ideas they bring into our discussions. Also great thanks go to Lillian Prueher for her invaluable reading of an earlier version of the article and for her engagement and stimulating contributions to the LifeWorth group during Fall 2016. Iben Gjødsbøl thanks participants in the 2017 Cascadia Seminar in Medical Anthropology at Western Washington University for inspiring discussions on temporality, personhood, and the welfare state. Finally, we owe great thanks to the two anonymous reviewers from Medical Anthropology who generously engaged with our article, helping us sharpen and improve our argument. Our study was approved by the Danish Data Protection Authorities. According to Danish law, observation studies do not require ethical approval.

Notes

1. The agentive force of “safety” in such situations points to the delicacies of agency and autonomy in the face of dementia: The rationale for moving the father into institutionalized care pertains to his dependencies of care and thus his incapacities for autonomous living. Yet on the other hand, his articulated wish to not move into nursing home care indeed confirms his autonomous, agentive forces. Such dilemmas and ambiguities related to agency are ubiquitous in dementia care, pinpointing that the question is not whether the diseased person is capable of acting and articulating autonomy; rather it is a question of what is by other considered proper autonomous agency.

Additional information

Funding

This work is part of the larger research project A Life Worth Living: Negotiating Worthiness in Human and Animal (LifeWorth), PI professor Mette N. Svendsen. The LifeWorth project was supported by a grant from the Danish Council for Independent Research, grant number 1319-00056B.

Notes on contributors

Iben M. Gjødsbøl

Iben M. Gjødsbøl is assistant professor at the Centre for Medical Science and Technology Studies, Department of Public Health, University of Copenhagen.

Mette N. Svendsen

Mette N. Svendsen is professor in Medical Anthropology at the Centre for Medical Science and Technology Studies, Department of Public Health, University of Copenhagen.