Making sense of dementia: Older adults’ subjective representations of dementia and Alzheimer’s disease

Abstract Objectives This research explores how the representations and meanings of living with dementia are constructed by older adults. Methods Focus groups (N = 19) and in-depth interviews (N = 29) were conducted with older adults aged 65+ living in the Czech Republic, representing different levels of personal familiarity with care for an individual experiencing dementia. Results We identified two different discourses: 1) Tragedy discourse with two distinctive repertoires “dementia as a thief of personality” and “dementia as a thief of humanity”. Within such discourse, dementia transcends mere medical terminology, serving as a symbolic representation of existential anxieties linked to aging and the perceived loss of control. 2) The discourse of Dementia as a specific way in which people approach the world was articulated mainly by caregivers, providing them with a coping mechanism and a means to reconstruct the agency of the person experiencing dementia. In older adults’ representations, references to suffering among family members emerged as a primary association with dementia. Dementia was portrayed as “contagious” in its effect on the family members who were, in a sense, depicted as the primary sufferers of the disease. Discussion Dementia often serves as a symbolic tool for older adults to articulate concerns about advanced old age, extending beyond its clinical definition to convey deep-seated fears associated with aging. The experience of people surrounding those diagnosed with dementia and the permeability of the impacts of this disease between bodies represented crucial frameworks for conceptualizing dementia in the narratives of older adults.