Narrating dementia: self and community in an online forum

Abstract

In this article, I examine how individuals diagnosed with early-onset Alzheimer's disease use illness narratives to construct community. The ability to narrate is a fundamental component of the self. Using 354 posts by 32 members of an Internet forum, I argue that people with Alzheimer's, whose ability to narrate, and thus create a self, was compromised, nonetheless managed to tell stories of redemption out of which a salvaged self emerged. Narratives are essential for the construction of self, but as I show in this article, they are also essential for the construction of community. Forum members shared stories, gave advice, offered encouragement, and commiserated about their symptoms in ways that generated solidarity. Internet forums provide a venue for people with illnesses who are unable to leave the home to construct community.

Keywords: dementia; illness and disease, experiences; narrative inquiry; research, online; self; social identity; sociology.