Exploring the Meaning of Symptom Awareness and Unawareness in Dementia

This interpretive phenomenological study explores the commonalities and differences in how people with dementia understand the meaning of their symptoms, comparing those who are aware of their impairment, those who are unaware, and those who have mixed awareness. Participants included five women and four men with mild to moderate Alzheimer's disease. The Anosognosia Questionnaire-Dementia (AQ-D) was used to measure symptom awareness, and in-depth interviews and participant observations were conducted to gather qualitative data about the meaning of symptoms. AQ-D results identified a range of awareness across the nine participants. Three were aware of their symptoms, three were unaware, and three had mixed awareness. Interpretive analysis of the qualitative data revealed three meaning narratives that illustrate qualitative distinctions in symptom experience across the different levels of awareness: (a) “Everything works more slowly” is a narrative of awareness; (b) “It's just old age” is a narrative of unawareness; (c) “It does not stick in the brain” is a narrative of mixed awareness. Such narratives offer important clues about the meaning and significance of symptoms for people with dementia. Nurses might use this information to tailor strategies for interacting with and offering support to people with dementia, depending on each individual's level of awareness.