Resisting social disenfranchisement: Negotiating collective identities and everyday life with memory loss

Abstract

Being diagnosed with Alzheimer's disease marks a status passage formally legitimating the incorporation of forgetfulness into daily life. Based on interviews with diagnosed individuals in California, USA, we examine the mechanisms through which an Alzheimer's label is employed to justify forgetfulness, to manage social interactions, and to garner support when deemed necessary, while simultaneously combating the associated demented "master status." For diagnosed individuals, the transition from experience to symptom requires a redefinition of everyday forgetfulness into a medical problem. That is, respondents did not routinely perceive their experiences as pathological but rather were socialised into viewing age-related forgetfulness as symbolic of disease. Support groups sponsored by the Alzheimer's Association and memory clinics have a profound impact not only on the formation of group identity, but also on socialising forgetful individuals into diseased identities. The social disenfranchisement accompanying a diagnosis of dementia transforms forgetful older adults into "Alzheimer's patients," who must manage not only the manifestations of their disease, but also negotiate their interactions and identities. Their adaptation to the "symptoms" of forgetfulness and resultant social relations forms new interactional strategies whereby the diagnosis becomes a resource utilised to get through everyday life. Rather than being passive recipients of a diagnosis, respondents employ the label both as a resource, and as a phenomenon that needs to be incorporated into their self identity.USA Illness identity Collective experiences Alzheimer's disease Memory loss