Bridging Communication Gaps: Methodological Challenges and Insights in Interviewing People Living With Dementia

Abstract

As global populations age, the prevalence of dementia is increasing, highlighting the need for research that prioritizes the voices and perspectives of those living with the disease. Historically underrepresented, people with dementia offer unique insights and valuable narratives, despite the cognitive changes that impact their communication. Obstacles remain, however, for people with dementia to participate in research, a number of which have been noted in previous studies. In this article, we discuss the specific features of communication in research interviews conducted with people diagnosed with dementia. The authors of this article have interviewed people with dementia across various research projects, and this study adopts a collaborative approach by reflecting on interview experiences in thematic meetings. In addition, the study draws directly on interviews from our projects. The participants represent diverse ages, cognitive stages, and living situations, but they share the experience of living with dementia. As dementia advances, maintaining a coherent dialogue becomes increasingly challenging, conversations become fragmented and people with dementia can confuse the past and the present in their answers. Our analysis shows that despite the best intentions of researchers, a shared understanding in interviews can, at times, be challenging to find. This underscores the importance of flexible and responsive interviewing approaches that respect participants’ unique experiences. Although people with dementia may not always answer the questions posed, they might still share meaningful insights about themselves or their experiences. During interviews, the role of the interviewer is crucial, as they must navigate communication gaps and ensure that the interviewee’s voice is heard. Our findings demonstrate that meaningful research participation remains possible across dementia stages when researchers adopt flexible, person-centered approaches that prioritize collaborative meaning-making over conventional interview structures.