Collective strength

Current theories of social power suggest that development of a shared social identity can create the possibility of bringing about political and attitudinal change as well as benefiting individual psychological well-being. This exploratory, qualitative, internet-based study extending over two years explored the impact of developing a shared social identity among a group of people with early-stage dementia. We investigated the experience of belonging to the self-help network Dementia Advocacy and Support International (DASNI), and its effect on self-concept and adjustment, from the perspective of DASNI members in order to understand more about the factors that promote self-help, and the effects of engaging in self-help, mutual support and advocacy in this context. Seven active members of DASNI with a dementia diagnosis volunteered to participate. Interviews were conducted via email, and Interpretative Phenomenological Analysis (IPA) was used to develop a thematic account. The challenges engendered by the onset of dementia were reflected in descriptions of loss, struggle and uncertainty. Participating in DASNI, in contrast, engendered a sense of collective strength and having something valuable to contribute, and made it possible to discover that there can be life after diagnosis. Belonging to DASNI helped to counteract the challenges to self and identity posed by developing dementia, thus significantly affecting the experience of living with dementia, and creating the possibility of effecting social change. Gradually, people in the mild to moderate stages of dementia are developing a `voice' and rejecting the passive patient role. One important element in this process is the way in which people with dementia band together to help themselves and one another, and influence social attitudes, through mutual support and collaborative advocacy. The development of DASNI, consistent with recent theoretical developments in conceptualizing processes of social power and influence, offers significant potential for change.