Emotion Work in Caregiving: The Role of Technology to Support Informal Caregivers of Persons Living With Dementia

Abstract

The CSCW and HCI community has increasingly examined ways to support informal caregivers through technology, given the increasing burden and its consequences on caregivers' emotional and physical health. In this paper, we interviewed 12 informal caregivers of Persons Living With Dementia (PLWD) to understand their needs and current coping strategies for overcoming caregiving burden, specifically around emotion work. The caregivers associated different personal meanings with caregiving. Participants wanted technology to take over some of the utilitarian, mundane caregiving tasks. At the same time, they did not want technology to take over the tasks that fostered personal connections with PLWD. As the disease progressed, caregivers started to lose their perceived bond with PLWD, making it more challenging to juggle between rewarding, positive emotions with negative experiences. We discuss such complexity of emotion work using the notion of Invisible Work to understand when technology should or should not support the emotion work engaged in informal caregiving.