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technical paper
Scientific Humanism : Dilemmas and Beauty in Geriatric Dementia Care in Brazil
keywords:
ambivalence
aging and life course
memory
Dementia care has been described in the literature as mostly burdensome, sometimes rewarding, but usually is framed as not involving parties beyond the individual, her family, and/or paid eldercare workers. The aim of this session is to widen the gaze on dementia care, while foregrounding uncertainty, complexity and variability -- around the “truth” of what dementia is, and around “responsibility” for care. On the one hand, we seek to situate dementia within broader local landscapes of care, including legal frameworks, social welfare and health systems, and more-than-human environments. Borrowing from Ciara Kierans the term “regimes of care,” this panel highlights how dementia care arrangements draw together publicly funded and/or private sector institutions, “kinship and friendship networks, charitable associations, and civil society organizations in ways that cannot be specified in advance.” (Panel 1) On the other hand, we seek to attend to the variability and complexity of dementia itself -- this historically uncertain category that historian of medicine Lara Keuck called a “working title,” because of its constantly shifting meaning and the doubt that surrounds dementia over time (and, we would add, across contexts). We approach dementia, in other words, as a site of onto-epistemological diversity • which manifests also in diverse needs for and practices of care. (Panel 2) How are such “regimes of dementia care” lived and performed? How do people work to cobble together care out of contingent, locally specific, often incoherent and fragile assemblages? This panel explores the multiplicity of dementia care regimes addressing a multiplicity of dementias, across a range of distinct settings. Keuck, Lara. 2021. “A Window to Act? Revisiting the Conceptual Foundations of Alzheimer’s Disease in Dementia Prevention,” In: Preventing Dementia? Critical perspectives on a new paradigm of preparing for old age. A. Leibing and S. Schicktanz (eds.). New York/Oxford: Berghahn. Kierans, Ciara. 2019. Chronic Failures: Kidneys, Regimes of Care, and the Mexican State. New Brunswick: Rutgers University Press.