While the debate on diagnostic disclosure is often based on the premise that knowing about one's condition (the diagnosis and its prognosis) is essential in securing the patient's autonomy, many people with dementia in Korea are not told directly about their diagnosis. This article concerns the laborious and ethically contentious post-diagnostic living undertaken by the families of people with dementia, which I call “living with/out dementia.” This is a paradoxical form of living that has emerged through the increasing biomedicalization of dementia, the socialization of elder care, and an enduring fear of dependency in old age. Attending to how living with/out dementia comes to be initiated and maintained through efforts of care, I argue that nondisclosure entails a kind of ethical process through which dementia is un/done in the caregivers’ struggle to truthfully engage with the person with dementia while actively hiding the diagnostic truth from him or her.
Bibliographical noteFunding Information:
The research was funded by European Research Council VITAL Grant (No. 639275), ?The Vitality of Disease?Quality of Life in the Making.? I would like to thank Ayo Wahlberg, Anna Mann, Arseli Dokumaci, Laura Louise Heinsen, Natasja Kingod, Ida Marie Lind, and other participants of VITAL Research Jam sessions in the University of Copenhagen for reading and commenting on my manuscripts as well as exchanging ideas. I also thank Seo Young Park, Hee Won Tae, Euisol Jeong, and members of the research collective OkeeSalon for being great interlocutors throughout the project. The research would not have been possible without the kind support of the staff members of district dementia counseling centers and the Seoul Metropolitan Dementia Center. Finally, I thank my informants in Korea who shared their experiences and thoughts with me.
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