Collaborative Futures: Co-Designing Research Methods for Younger People Living with Dementia

Designing new technologies to support the lived experience of dementia is of increasing interest within HCI. While there is guidance on qualitative research methods to use in areas such as dementia, there is a need for more appropriate ways to research in the younger demographic. In Younger Onset Dementia (YOD), the circumstances and experiences are markedly different from dementia in the later stage of life – requiring a different approach. This paper presents insights into the methods and approaches used in fieldwork with five people living with YOD; where they engaged as co-researchers in a co-directed inquiry into their lived experiences. Through this, we make a number of methodological contributions to HCI and Participatory Action Research (PAR) for research in the YOD setting. This includes productive approaches that are sensitive, respectful and empowering to the participants. It also extends current approaches to using probes in HCI and dementia research.