A Life-World of Altering Meaning: Expressions of the Illness Experience of Dementia in Everyday Life over 3 Years

Abstract

The aim of this study was to describe the illness experiences of two participants with dementia, as expressed in their everyday lives during 3 years of disease progression. Data were collected at intervals by participant observations and conversational interviews and analyzed via a phenomenological and interpretive method. The findings describe an illness experience characterized by an altering meaning of the concretely present life-world for the participants. This was exhibited by an increasingly existential meaning of the objects and tasks of everyday life, while the perception of the life-world as taken for granted seemed to gradually decrease. Furthermore, participants experienced being threatened by a lack of order and control and uniquely responded to these experiences. Living with the changes and the threat seemed to imply insecurity and doubtful hope, diminishing social contacts, and increasing dependency, but the meaning of the consequences differed between participants. On the basis of the presented structure of the phenomena, a possible way of understanding the illness experience and its meaning in progressively dementing diseases in the occupations of everyday life was exemplified and suggested from a phenomenological point of view.