How to narrate the loss of the chronicle: the autobiographies of people in the dementing process

• Grant number: 17/14740-7
• Support type: Scholarships in Brazil - Post-Doctorate
• Effective date (Start): October 01, 2017
• Effective date (End): November 30, 2020
• Field of knowledge: Humanities - Anthropology - Theory of Anthropology
• Principal researcher: Sylvia Caiuby Novaes
• Grantee: Daniela Moreno Feriani
• Home Institution: Faculdade de Filosofia, Letras e Ciências Humanas (FFLCH). Universidade de São Paulo (USP). São Paulo , SP, Brazil

Abstract

The project aims to discuss the autobiographies of people who live in a dementing process, as is Alzheimer's disease, thinking about the relationship between (auto)biography and ethnography, word and image, and how the diagnosis of dementia stresses notions such as narrative, disease, memory, and person. The autobiographies will be analyzed jointly by mapping a field of relations in an attempt to understand what linguistic resources are used, topics discussed, strategies developed within the experience of the disease, composing a myriad of experiences. Most studies on Alzheimer's disease have been focused on the caregiver - and not the point of view of the patient -, thus the autobiographies of people with the disease is a new phenomenon compared to the broader field of this narrative form, being an important counterpoint to the biomedical discourse of "dissolution of the self". In this sense, the research is an important contribution to filling this gap, besides thinking new ways of understanding the disease as a complex, plural and multifaceted phenomenon. As a comparative value, I intend to establish proximities and distances of these autobiographies with those of other patients ("crazy", schizophrenic, autistic) and with the testimonies of the trauma, thinking about the displacement of the notions of person, disease, memory, narrative and reality over these areas and subjects. In addition to articles, discussion group and conducting the event, the project proposes to develop an ethnographic video and a photographic essay with the stories of the lives of people with Alzheimer's disease, in an attempt to propose other results for anthropological reflection in this field and to overcome challenges such as investigating the limits and the scope of the language and incorporate people in the dementing process as interlocutors of a research.