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Accepted Paper:
Missing words and missed meaning: methodological considerations when conducting ethnographic fieldwork among persons with dementia
Ida Marie Glavind
(University of Copenhagen)
Hanne Mogensen
(University of Copenhagen)
In this paper about persons with Alzheimer's disease, we argue that a combination of recordings of their words and participant observation resulting in ethnographic descriptions giving room for the "silence of the social" help us get closer to the experience of living with Alzheimer's disease.
Paper long abstract:
Ethnography has a long tradition of valorizing both participation and observation, and of creating descriptions that attempt to put into words the silent dimensions of the social, the taken for granted, the pre-lingual - and to give voice to the voiceless. However, ethnographic research also relies heavily on the spoken word. This might partially be due to the literary turn of the 1980s which amplified a discursive practice that gives priority to the spoken word. Secondly, in the strive for "evidence" (in particular in inter-disciplinary settings) the spoken word has a particularly "seductive power", creating the illusion of "raw data". Recordings of interviews and the use of quotations have thus become well-established methods in ethnographic research.
Doing research on persons with Alzheimer's is a reminder that we need methods that do not rely on verbal interactions. There is a need to revisit what ethnographic methods and descriptions can contribute with, when we study people, whose language is deteriorating. However, we are dealing with people whose language is exactly deteriorating - not people without any verbal language (like infants and objects). We are trying to understand people who attempt to keep alive a verbal interaction with us, who often try themselves to create a coherent verbal narrative, but fail. How can we understand what is at stake for them, and how might we as researchers become better at giving voice to the voiceless?