Fluctuating interpretations: Striving to maintain a sense of self in early dementia

This study aimed to develop a conceptual framework of the experience of persons living with the early stages of dementia. A grounded theory approach examined the experience from the perspective of the patient. Data were collected from dyads of persons with mild dementia and their family caregivers (N = 17) using face-to-face interviews at three timepoints over a one-year period. Transcribed interviews were analyzed with constant comparative analysis. The core category was “Fluctuating interpretations: striving to maintain one's sense of self.” Interpretations were comprised of three subcategories: being a stranger to oneself, sense-making, and strategies for coexistence. Different situations influenced the process and affected individuals’ attitudes and behaviors. Interpretations were a protective vehicle and stabilizing force that enabled persons with dementia to coexist with disease changes. Perspectives of persons with dementia during the early stages should be considered when designing intervention strategies for patient-centered care.