Letting go of coherence: Qualitative interviews and the challenges of representing dementia
Alexandra Hillman1, Ian Jones1, Catherine Quinn2, Sharon Nelis2, Ruth Lamont2, Linda Clare2
1Wiserd, Cardiff University, Cardiff, United Kingdom. 2REACH, University of Exeter, Exeter, United Kingdom

Abstract

Drawing on the IDEAL study, this paper explores a sociological response to the ‘turn to personhood’ in qualitative research with people with dementia.  Recognising the voice of the person with dementia has led to important methodological developments to mitigate the practical difficulties of doing research with people for whom recalling events and reflecting on their meaning poses a challenge.  This paper suggests that methods, including the qualitative interview, are imbued with a politics of selfhood in which individuals give coherence to experience and emotion.  Such a politics jars with representations of dementia as a gradual decline in capacity, including a capacity to speak.  The problem of representation in dementia research requires us to re-think method and methodology: firstly, to re-asses expectations of the research encounter; and secondly, to develop alternative interpretations of meaning which support difference in social and temporal frames, rather than seeking to eliminate them.