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

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.

Trust matters: The Addressing Vaccine Hesitancy in Europe Study.

This article presents the design of a seven-country study focusing on childhood vaccines, Addressing Vaccine Hesitancy in Europe (VAX-TRUST), developed during the COVID-19 pandemic. The study consists of (a) situation analysis of vaccine hesitancy (examination of individual, socio-demographic and macro-level factors of vaccine hesitancy and analysis of media coverage on vaccines and vaccination and (b) participant observation and in-depth interviews of healthcare professionals and vaccine-hesitant parents. These analyses were used to design interventions aimed at increasing awareness on the complexity of vaccine hesitancy among healthcare professionals involved in discussing childhood vaccines with parents. We present the selection of countries and regions, the conceptual basis of the study, details of the data collection and the process of designing and evaluating the interventions, as well as the potential impact of the study. Laying out our research design serves as an example of how to translate complex public health issues into social scientific study and methods.

The role of dementia and Alzheimer's disease in older adults' representations of aging and anxieties regarding one's own future.

Dementia and Alzheimer's disease crucially influence the images of advanced age and represent a significant framework for the construction of anxieties regarding aging. By drawing on twenty-five in-depth interviews with older adults (age 65+ years) living in the Czech Republic, in this study, the influences of dementia and Alzheimer's disease on older adults' narratives of expectations and worries pertaining to their aging and future are analyzed. Three distinct ways in which participants narrate personal concerns related to Alzheimer's disease and integrate the risk of developing such a condition into their representations of fears associated with old age were identified: 1) Dementia as a perceived immediate risk, 2) dementia as the metonym of the fourth age, and 3) dementia as a distant tragedy but not a personal worry. These approaches differ in terms of the perception of the risk of developing dementia, anxiety-related responses related to future expectations, and the role of dementia in their representation of 'bad' old age. The different positions of dementia (specific health condition vs. signifier of dependency in old age) affected the participants' strategies related to medical screening and information seeking.

Voices from Silence? Reflections on 'Coming out' in Socialist Czechoslovakia.

The region of Central and Eastern Europe and oppressive social conditions in former socialist society often became symbols of the impossibility to articulate non-heterosexual identities under the conditions of a totalitarian regime. This study analyzes data from 19 in-depth interviews with people older than 50 living in the Czech Republic who identify themselves as lesbian, gay, or bisexual. It focuses on the ways in which their forced silence and inability to speak about their sexual desires resonated throughout their biographical narratives. The first part of this paper focuses on themes surrounding the absence of representations of non-heterosexual identities in socialist Czechoslovakia's public sphere and the impact of this absence on participants' perceptions of their own life experiences. The second part of the paper analyzes the ways in which participants relate to their own coming out and their reflections on their previous lives in relation to newfound opportunities to live outside of heterosexual norms. The paper strives to problematize the concept of "silence" as one of the defining features of this generation, in contrast with the concept of coming out as a sign of emancipation in younger generations.