The Meaning-Making of Dementia (MMoD) model: How people living with dementia navigate lived experience and cultural frames

In Western Europe, dementia is commonly portrayed in media as a societal burden, emphasizing economic costs and loss of personhood. The goal of this research is to nuance those representations by focusing on the personal experiences of people living with dementia (PLWD) and their interpretations of the condition. This study examines which and how aspects of lived experiences inform meaning-making (RQ1) and how this meaning-making relates to cultural perspectives represented in media (RQ2). Semi-structured in-depth interviews were conducted with 24 PLWD in Belgian care centers. Guided by interpretivism, reflexive thematic analysis was used, inductively for RQ1 and deductively for RQ2. The study identifies six interconnected factors in the participants’ lived experiences that shape their meaning-making: illness insight, self-concept, functional and physical changes, coping, social support, and prejudice and stigma. The personal meaning-making of PLWD reveals a nuanced mix of problematizing and de-problematizing perspectives, with the balance influenced by individual and social factors. This stands in stark contrast with the often one-sided media frames. Meaning-making in dementia is not a passive reproduction of dominant cultural narratives, but an active process shaped by personal experiences, self-concept, and social context. The Meaning-Making of Dementia (MMoD) Model introduced in this study offers a framework to understand this process more fully. It may inform care practices by highlighting how different factors interact in shaping how dementia is understood. Supporting these elements could help foster more coherent and less distressing interpretations of the condition. • The Meaning-Making of Dementia (MMoD) Model provides a framework on the meaning-making processes of PLWD • Six aspects seem to be related to PLWD's meaning-making of dementia • Illness-insight is a gateway to meaning-making and self-concept is at its core • Personal experiences are aligned with almost all media frames, but tend to be more nuanced