Approaches for Authentic Engagement: Younger Onset Dementia

Abstract

Efforts in Human–Computer Interaction (HCI) to better understand the experiences of people with dementia should consider a bespoke approach; one that is not only responsive to the individual’s situation and circumstances but at the same time, thoughtful, sensitive, and respectful. Adopting a bespoke approach is a relatively unexplored idea in research, also for those in HCI designing digital technologies in dementia settings. We don’t often hear about a bespoke approach in current corpus of HCI methodologies when researching and designing in sensitive settings. Also, most efforts in HCI and dementia have been primarily focused on the elderly in the more advanced stages of dementia. In this chapter, we focus specifically on individuals with Younger Onset Dementia (YOD). This is because individuals with YOD are an underrepresented group in social, medical, and government systems with most research and design efforts directed at those with Late-Onset Dementia (LOD). Based on our research collaborations with individuals living with YOD, we wish to offer the HCI community a more nuanced understanding of dementia. Our collaborative and immersive research approach also offers insights for how HCI can better tailor and even design their methodologies and research tools when researching and designing with and for those living with YOD.

If you’ve met one person with dementia, then you’ve only met one person with dementia.

Professor Tom Kitwood, 1997.

The HCI researchers would like to thank the study participants and co-authors of this chapter. To ensure that the voices of the participants are represented, minimal editing has been carried out with regards to the comments and writings of the study participants and authors.