Getting Insight to the Lived Emotional Experience of People with Alzheimer’s Disease Shortly After Diagnosis: A Phenomenological Approach

Abstract

Background: A diagnosis of Alzheimer’s disease (AD) is a crucial moment in an individual’s existence and represents a major life change that often results in psychological distress, diminish of perceived quality of life, and loss of independence. It is important to better understand the emotional experience of people with dementia to intervene according to their specific needs. Objective: The aim of the research was to get insight to the emotional experience of people with AD shortly after its discovery and the consequences thereof. Methods: A qualitative exploratory design was engaged, and in-depth interviews were conducted with ten French-speaking participants over 70 years recently diagnosed. Interviews were guided by Heideggerian phenomenology about movements in the worldview of individuals. The transcribed data was subjected to interpretative phenomenological analysis. Results: Following the diagnosis, participants experienced either shock or denial. Emotions felt were unpleasant and disturbing for most of them. Especially when participants were confronted with news concerning the illness, they experienced incomprehension. They engaged in an oscillatory motion of connection and disconnection to establish new meanings of their worldview. Thinking about the past seemed to diminish their worries, to reinforce the possibility to fulfil a significant place in their existence and to maintain their autonomy. Conclusions: When participants could express their emotional experience and their concerns, they regained a sense of control in their life that seemed du reduce their distress. With this insight, intervention could be adapted to the specific needs of people with AD to enhance their self-determination and quality of life.