Supporting Inclusion and Participation for People Living With Dementia: Ethnographic and Participatory Research Methods

Abstract

Dementia researchers have persuasively argued for using flexible and creative methods with people with dementia, to ensure their historically marginalised voices are now heard. This article builds on that work, using examples from a study of medicines practices of people with dementia and their informal carers. We have two aims: firstly, we show the ways in which two methods – linguistic ethnography and diary-interview method – can support the inclusion and participation of people with dementia. Secondly, we examine the methodological insights and the dilemmas created by using these methods. Our focus on supporting all means of communication (verbal, non-verbal, drawing, photography and writing) underpinned our choice of methods, which in turn facilitated inclusion and participation. Using a linguistic ethnographic approach supported participants to use material objects to tell their stories; video-recording interactions encompassed non-verbal communication; creative diary-methods made non-linguistic means of knowledge production possible. Moving around the home and neighbourhood and using familiar objects enabled people with dementia to explain their medicines in the context of their lives. Paying attention to sensory data created new insights into the skills and knowledge that family members develop and employ when they provide informal care. The methods were not without challenges. Participants experienced a tension in balancing opportunities for self-expression with the time and effort involved in participatory activities. For the researcher, prioritising the affective quality of respectful research relationships whilst not straying into ‘faked friendship’ created situated ethical dilemmas.