Nothing About Us Without Us: Research Methods Enabling Participation for Aged Care Residents Who Have Dementia

Abstract

The voices of people living with dementia are rarely included in primary data collection due to cognitive challenges and the concerns of researchers and others about limitations associated with informed consent. This article presents a successfully implemented, step-by-step process enabling effective participation of aged care residents with dementia using a case study approach. Three methodological and critical steps in data collection were identified that led to the successful participation of residents with dementia in research. The process corresponds with, yet is uniquely different from the common elements in the qualitative research process. These are active participation during data collection, researcher familiarization with participants, and their set interval and time-lapse considerations (timeline). The process of involvement of people with dementia in research should proceed at a pace that is guided by the participants. It is important to consider participant interview pace, pattern, and the conversation time points when interruptions occur, to restart the whole interview process. Researchers need to facilitate active engagement by building and maintaining authentic relationships with the participants.