Supporting Inclusion and Participation for People Living With Dementia

Ethnographic and Participatory Research Methods

Bibliographic Data

ID2411525
AuthorsLucie Hogger (0000-0003-4669-1292), Nina Fudge (0000-0002-7161-4355), Deborah Swinglehurst (0000-0003-1261-9268)
Year2023
Volume22
Publication date2023-10-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueInternational Journal of Qualitative Methods (JOURNAL)
Journal identifiersISSN: 1609-4069 • E-ISSN: 1609-4069
PublisherSAGE Publications Inc (PUBLISHER)
DOI10.1177/16094069231184773
OpenAlexW4382464244
LanguageEN
Citations received8
References cited64

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

Citizen journalism · Context (archaeology · Dementia · Ethnography · Friendship · Inclusion (mineral · Participatory action research · Participatory design · Situated · Sociology · World Wide Web · Computer Science · Innovative Education and Learning Practices · Language, Discourse, Communication Strategies · Medicine · Mental Health and Patient Involvement · Psychology · Social Psychology

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