Assessing the Use of Research Techniques for Supporting the Engagement of People Living with Dementia in Research

Abstract

People with dementia often experience challenges communicating their experiences, which can impact their ability to participate in research. Adapted or modified research methods are needed to better promote the accessibility of research for people with dementia in support of their rights to participate. This manuscript-based thesis employed three studies to examine the use of adapted or modified research methods to engage people with dementia in research and evaluate the use of two techniques for their impact on the engagement of people with dementia in research and on the data produced. First, a scoping review of the current literature was conducted to identify studies that used adapted or modified research methods with people with dementia with the aim of understanding the extent of use of adapted methods with people with dementia in qualitative research. The review identified adapted methods used and examined how impacts on engagement as it relates to meeting accessibility needs were investigated. Two primary qualitative research studies were also conducted to examine two projective interviewing techniques, verbally-prompted storytelling and photo-prompted storytelling, and how these techniques impact the engagement of people with dementia and the data collected in qualitative interviews. Results from the scoping review suggest that a range of adaptations and modifications are made by researchers to their research projects, but limited evidence exists as to the effectiveness of these adaptations on improving engagement of people with dementia in research. The study of verbally-prompted storytelling techniques suggests these methods deepened reflection of impact of dementia on self and others, facilitated conversations when participants experienced challenges recalling a personal example, and enabled conversations about emotional topics. Additionally, the study of the photo-prompted storytelling technique suggests that participants tended to demonstrate deeper reflection of their own and other’s experiences and that the photo-prompted storytelling technique helped overcome challenges with direct questioning and recall. As well, there was a statistically significant difference in observed engagement when participants were interviewed using photo-prompted storytelling techniques but not the verbally-prompted story telling technique. This dissertation contributes to the understanding of adapted and modified methods to engage people with dementia in research and provides preliminary evaluation of projective interviewing techniques for improving the engagement of people with dementia in qualitative research, and how such techniques impact data collected. Improving accessible research opportunities for people with dementia to share their experiences is essential for recognizing the human rights of people with dementia to have equal opportunities to participate. Future research should continue to explore and extend the application of these techniques with particular focus on the impact of the specific prompts used.