More than talking: A scoping review of innovative approaches to qualitative research involving people with dementia

Participation in qualitative research frequently relies upon recall and verbal expression, which may be difficult for some people with dementia. While the use of arts-based and visual methods are transforming dementia care, exploratory research and evaluation methods have lagged behind with regard to the use of innovative qualitative approaches. This scoping review identified innovative qualitative methods that have been used to effectively engage and involve people with dementia in social and health research. Systematic searches of academic databases, Google Scholar, and hand searches identified 24 peer-reviewed articles published since 2010 for inclusion. Analysis focused on a description of both the motivation and methods ascribed by the researchers and how the capacities of people with dementia were engaged as part of the research process. The most frequently used innovative method was Photovoice. Action research, case study, narrative production, ethnography, participatory filmmaking and theater, co-research, and mixed methods were also used. Regardless of methodology, most studies used a participatory approach that incorporated visual methods alongside adapted semistructured or unstructured interviews. Researchers were focused on inclusion, empowerment, self-expression, flexibility, and communication when selecting methods. Providing an appropriate research environment and committing time for repeat contact, observation, and engagement were important considerations.