Towards Caregiver Flourishing: A Framework for Sustainable Capacity in Dementia Care

• In Event: Families and the Care Crisis

Abstract

Burden frameworks document what dementia caregiving extracts but provide limited vocabulary for how care holds together over time. This paper develops flourishing as a complementary framework. Flourishing names sustainable capacity under conditions: the practical ability to continue caring while preserving relationships, competence, identity, and purpose, when structural arrangements support that work. The phrase "under conditions" is the central theoretical claim, not a caveat; sustainable capacity is constitutively relational, emerging only when structural arrangements enable internal capabilities to function. Drawing on 20 in-depth interviews with family dementia caregivers in Emilia-Romagna, Italy and the rural Midwest United States, alongside twelve months of fieldwork, I identify four interconnected domains where caregivers performed ongoing capacity-building work: connection (mobilising actionable support), mastery (building routines and lay expertise), identity (preserving selfhood beyond care), and meaning (locating difficulty within moral frameworks rendering continued care intelligible). The comparative design reveals that these domains appeared across differently organised welfare and family contexts, though each unfolded according to distinct institutional and cultural logics of obligation and selfhood. Caregivers sometimes reported profound strain while demonstrating expertise that had sustained care across years of disease progression, a pattern suggesting burden and capability may operate as distinct dimensions rather than inverse poles. The framework carries structural implications: if sustainable capacity depends on conditions that policy can create, then the care crisis is not only a crisis of demand exceeding supply but a crisis of missing infrastructure for capacity development. The flourishing framework provides vocabulary for describing not only what caregiving costs, but what caregivers build.

Author

• Cameron Gabriel Beckett, University of Chicago