Misfitting the Research Process: Shaping Qualitative Research “in the Field” to Fit People Living With Dementia

Abstract

It is increasingly recognized that people living with dementia should be included in qualitative research that foregrounds their voices, but traditional research approaches can leave less room for flexibility than is necessary. This article builds on others who have examined the challenges and rewards of the qualitative research process with people living with dementia. With reference to a specific project on communication and dementia, the research design adaptations needed at each step to turn a “misfit” into a “fit” are examined. Misfitting, as a concept related to social practice theories, is used to argue the need for a coproduced and flexible approach to research design and data collection. Recommendations include being willing to adapt research methods, data collection locations, and aims of the project to fit participants’ competencies, preferences, and realities; spending sufficient time getting to get to know staff and potential participants to build relationships; working round care practices and routines to minimize disruption; and using observational/visual methods can help include people living with dementia at each stage. People with dementia require researchers in the field to be creative in their methods, reflexive in their approach, and person-centered in their goals. Those adaptations can fundamentally change the ways in which the social practice of research is shaped.

Everyday experiences of post-diagnosis life with dementia: A co-produced photography study

“…Secondly, the full research team met to further refine the categories the participants had identified into broader themes. JD and JW have extensive experience in qualitative data analysis, while the Forget Me Nots have experience of the analytic process from their involvement in other research projects (Williams et al, 2020;Webb et al, 2019Webb et al, , 2020.…”

“…The cognitive symptoms of dementia, including memory loss and word finding difficulties, can cause methodological challenges to research ( Carmody et al, 2015 ; Webb et al, 2020 ). Traditional qualitative methods of interviewing and focus groups rely on abstraction, recall and verbal reporting ( Beuscher & Grando, 2009 ), putting pressure on people with dementia to respond in a researcher-led, question–answer format ( Williams et al, 2019 , 2020 ).…”

People with dementia positioning themselves as learners

“…In order to investigate the experiences that the participants living with dementia have as novel learners in the ongoing activity, this study is informed by practices of conversation analysis and multimodal interaction analysis, as suggested by Webb et al (2020). Using this analytical stance together with video recordings of the activities allows for repeated viewings of the material and access to the participants' verbal and embodied conduct as it unfolded there-and-then.…”

“…Using this analytical stance together with video recordings of the activities allows for repeated viewings of the material and access to the participants' verbal and embodied conduct as it unfolded there-and-then. Thus, by drawing on video data of the participants' natural conduct in the ongoing activity, it is possible to explore their in situ experiences as learners in ways that would be difficult to attain through the use of field notes or interviews alone (Mondada, 2013;Smith et al, 2018;Webb et al, 2020). As noted earlier, this might be of extra importance for people living with dementia as they often have a problem with retrospective telling (Hydén, 2018).…”

“…However, as suggested by Hubbard et al (2003), Nygård (2006), and Smith et al (2018), it might not be sufficient to rely solely on interviews when studying the experiences of people living with dementia. An alternative, or complementary, approach is to use a methodology that enables analysis of how the individual expresses his or her experiences in the ongoing situation, such as interaction analysis (Webb et al, 2020). Returning to the topic of learning and dementia, there are to this date and to our knowledge, few, if any, studies exploring how people living with dementia assert themselves as active and engaged learners in a novel activity (though see the interview and field notes based studies by Rosenberg & Nygård, 2014.…”