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Engaging in participatory research in HCI raises numerous ethical complexities such as consent, researcher relationships, and participant compensation. Doing HCI work in the area of dementia amplifies these issues, and researchers in this area are modelling ethical stances to ensure researcher-participant relationships focus on meaningful engagement and care. This paper presents an insight into the kinds of ethical foci required when doing design research with people living with dementia and their carers. We interviewed 22 HCI researchers with experience working in dementia care contexts. Our qualitative analysis outlines subsequent lessons-learned, such as recognition of the participants, self-care, research impact, and subjectivity in ethical review boards. Furthermore, we found the complexity of navigating both "everyday" and more formal, institutional ethics in dementia research has implications beyond the context of working with people with dementia and outline key considerations for ethical practices in socially orientated HCI research.
Mass emergencies increasingly pose significant threats to human life, with a disproportionate burden being incurred by older adults. Research has explored how mobile technology can mitigate the effects of mass emergencies. However, less work has examined how mobile technologies support older adults during emergencies, considering their unique needs. To address this research gap, we interviewed 16 older adults who had recent experience with an emergency evacuation to understand the perceived value of using mobile technology during emergencies. We found that there was a lack of awareness and engagement with existing crisis apps. Our findings characterize the ways in which our participants did and did not feel crisis informatics tools address human values, including basic needs and esteem needs. We contribute an understanding of how older adults used mobile technology during emergencies and their perspectives on how well such tools address human values.
Technology design for dementia is an active and growing area. Though work to date has largely addressed functional needs, there is a growing recognition of the importance of supporting meaningful activities. However, technology for active, rather than passive, engagement is relatively novel beyond specific applications (e.g., music or reminiscence therapy). To better understand how to support active engagement of people with dementia in activities, we interviewed nineteen practitioners. Our findings reveal differing approaches to making sense of the actions of people with dementia, as well as to engaging them in activities. We discuss the importance of tracing epistemological understandings of dementia to different configurations of technology for people living with dementia and provide a practical guide to support designers to do so. Finally, we discuss considerations for the design of dementia technologies around facilitating self-actualization and managing emotional exposure for care-providers.
Beside reminiscing, the increasing cognitive decline in dementia can also be addressed through sensory stimulation allowing the immediate, nonverbal engagement with the world through one's senses. Much HCI work has prioritized cognitive stimulation for reminiscing or personhood often on small screens, while less research has explored sensory stimulation like the one enabled by large displays. We describe a year-long deployment in a residential care home of a wall-sized display, and explored its domestication through 24 contextual interviews. Findings indicate strong engagement and attachment to the display which has inspired four psychosocial interventions using online generic content. We discuss the value of these findings for personhood through residents' exercise of choices, the tension between generic/personal content and its public/private use, the importance of participatory research approach to domestication, and the infrastructure-based prototype, illustrated by the DementiaWall and its generative quality.
People with dementia face major challenges in maintaining active social interaction. Designing digital tools for social sharing within families and care facilities has been well explored by HCI research, but comparatively less work has considered community settings. Situated in a community-based program for storytelling and socializing, our field observations and semi-structured interviews with people living with early-middle stage dementia, family caregivers, and program facilitators illustrate both positive and challenging aspects of social activities. We contribute a nuanced understanding of participants' social lives and identify four factors that aid in achieving positive outcomes: effective agencies for social interaction, normalized and friendly environments, collaboration and teamwork, and mediating social cues and communication. Finally, we examine our findings through the lens of past HCI work and offer insights for designing new social technologies to diversify the range of social spaces in community settings, through expanding peer collaboration, leveraging physical and virtual spaces, creating open-ended experiences, and developing flexible platforms.