In their voices: Identity preservation and experiences of Alzheimer's disease

Although much research pertaining to Alzheimer's disease (AD) explores the impact on caregivers, there is a general paucity of data on experiences of living with the condition. Contemporary medical initiatives to diagnose people earlier in the illness trajectory make it increasingly possible to hear the voice of people with memory loss, which can improve both public perception and policy. This study examined the impact of being diagnosed with early AD on identity construction. Respondents highlighted aspects of being diagnosed that were instrumental in making sense of changes in their lives and identities, including defining moments, to tell or not to tell, and preservation. Findings suggest that understanding how to identify memory deficits, the context of diagnosis, and the techniques employed for managing illness are crucial to subjective experiences. Despite normative expectations and the rhetoric of loss, respondents deliberately manage their interactions to make sense of their lives and preserve themselves. (C) 2004 Elsevier Inc. All rights reserved.