Managing disability and enjoying life: How we reframe dementia through personal narratives

Rhetoric referring to Alzheimer's disease as 'the never ending funeral' or 'a slow unraveling of the self' implies that diagnosed individuals and their families alike are victims of a dreaded disease. Data gathered from web-based surveys with twenty-seven individuals with dementia demonstrate how some persons living with the condition actively negotiate their everyday lives to counter such pejorative assumptions. Grounded theory methods were used to consolidate textual data into overarching themes. Findings depict persons with dementia who do not experience an inherent 'loss of self' but rather consciously strive to incorporate a 'manageable disability' into their existing identities. Respondents give numerous examples of how they can and do live with dementia. These data portray an empowered identity that suggests the need for a reframing of dementia to challenge the normative victim-orientation and the social disadvantages of such biomedical reductionism. (C) 2009 Elsevier Inc. All rights reserved.