Awareness of dementia and coping to preserve quality of life: a five-year longitudinal narrative study
Kirsten Thorsen, Márcia Cristina Nascimento Dourado, Aud Johannessen
Abstract
PURPOSE: To examine how people (<65 years) with young-onset dementia (YOD) express awareness of dementia and how they seem to handle awareness as a strategy to preserve quality of life over time. METHOD: A longitudinal qualitative study with individuals with YOD was performed with interviews every 6 months over 5 years for a maximum of 10 interviews. The interviews were analysed by modified grounded theory adapted to narrative inquiry. RESULTS: Awareness is a complex, multidimensional concept. Awareness of dementia is predisposed by personality, life history and established coping styles. The main coping styles during dementia-live in the moment, ignore the dementia, and make the best of it-seem to be rather consistent throughout disease progression. Transitions in the life situation may change the individual's awareness of dementia. CONCLUSION: Unawareness of dementia may have an important adaptive function for preserving quality of life. Increasing awareness of dementia must be approached with reflexivity and great sensitivity.