The emergent modes of dementia activism

Abstract

After decades of silencing and discrimination, people with dementia are beginning to join forces, take action and campaign for social change. Drawing on data obtained from ‘activists’ with dementia using diary interview method and participant observation, this paper considers the emergent modes of dementia activism in the context of the social movement literature, and in particular, work emphasising the role of networks in health social movements. The study identified three emergent modes of dementia activism; these were the ‘protecting-self against decline’ mode, ‘(re) gaining respect’ mode, and ‘creating connections with other people with dementia’ mode. Taken together, these modes show how a sense of elapsing time pervades this form of activism. The investigation reinforces the contention that time is a dominated force that structures human motivation and goals. Furthermore, it raises the possibility that activism can protect against decline amongst people with dementia given the appropriate temporal space.