Fluctuating Awareness and the Breakdown of the Illness Narrative in Dementia

Abstract

This interpretive phenomenological study examined how awareness of dementia symptoms fluctuates over time and circumstance, thus forcing the breakdown of the illness narrative. Five women and four men (age 64–88 years) with mild to moderate Alzheimer’s disease (MMSE 16–23) participated in this study along with their family caregivers. In-depth interviews and participant observations were conducted with each individual and their caregiver to gather data about the person’s understanding of their symptoms. Findings illustrate how symptoms may be salient, or vague and inconspicuous; symptoms may be forgotten, or they may be entirely absent for the person. Experiencing symptoms in all of these ways means that it is difficult for people to articulate a narrative understanding of what is happening in their lives. The illness narrative of dementia becomes shared as others join in its telling, although finally it may become a narrative of chaos that is all but impossible to articulate.