Methodological reflections on conducting online research with people with dementia: The Good, The Bad and the Ugly

Abstract

Conducting qualitative research with people with dementia (PwD) is inherently challenging due to their fluctuating mental capacity and symptom of forgetfulness. These challenges were compounded during the early phase of the COVID-19 pandemic when social distancing and lock down were enforced. This article critically discusses the researchers’ experiences on conducting online research with PwD on a sensitive topic based on an empirical study that aimed to explore the changing needs of PwD and how that affects their expectations of future. The focus is on: i) moving qualitative research to an online space, ii) the impact of joining online research on participants and iii) the impact on researcher (s). Participants were recruited via the Join Dementia Research platform. Narrative online interviews were conducted with 13 PwD and 4 dyads of PwD and carers.Moving to online interviews removed geographical barriers from researcher and participants thus making the study more accessible. The virtual elements of online interviews created a unique interaction since the researcher was simultaneously co-occupying the space virtually but not physically with participants. Disadvantages included internet connection instability and flexible informed consent procedures were required.The primary researcher's expressed identities positioned him variously as an ‘in-betweener’ which challenged the dualistic concept of researcher insiderness-outsiderness. PwD's familiar environment -their homes-appeared to enable them to take more control in the interview and potentially reduced their forgetfulness. The impact on researchers involved vicarious trauma that occurred during and after the interviews; the distress protocol was revised to include supports for the interviewer.