Challenging Age. Paradoxes of Young-Onset Dementia and Their Socio-Cultural Transformative Potential

Paradoxien von Demenz im jüngeren Lebensalter und deren sozial-kulturelles Transformationspotenzial

Abstract

The chapter analyses the culturally and structurally stabilised dementia–old age nexus: in everyday knowledge, institutions, and interactions, advanced age and dementia function reciprocally as interpretive and structuring resources. At the discursive-symbolic level, the historical normalisation of cognitive decline in advanced age continues to resonate; within the social imaginary, dementia becomes a hinge between the third and fourth age while being simultaneously normalised and stigmatised. This produces a narrowing of competence towards logics of loss, care, and service provision, further moralised through prevention and responsibility discourses. At the institutional-structural level, this order materialises in an apparatus comprising assessment procedures, entitlement regimes, care services, and professional jurisdictions; diagnoses operate as administrative keys and create barriers to access. At the social-interactional level, ageism and dementia stigma intertwine in master narratives, doing processes, and routines of recognition.

Young-onset dementia is examined as an irritation of this nexus; the empirical basis is the qualitative STELDA study on stigma experiences among people with young-onset dementia and their families. This “untimely” illness generates misfits in interpretations, time horizons, role arrangements, and formal access routes, thereby revealing the contingency of age-based social orders. From this, the chapter derives a potential for transformation: increasing visibility and pluralising narratives, establishing more flexible responsibilities beyond rigid age thresholds, and strengthening recognition practices that affirm difference and role plurality in social interactions.