“You Are Not Alone!”: A Thematic Analysis of Activist Goals and Antecedents of Online Dementia Activism

Authors

  • Anca M. Miron
    Department of Psychology, University of Wisconsin Oshkosh, Oshkosh, WI, USA
  • Amy Knepple Carney
    Department of Psychology, University of Wisconsin Oshkosh, Oshkosh, WI, USA
  • Brandi J. Tennessen
    Department of Higher Education & Student Affairs, University of Iowa, Iowa City, IA, USA
  • Amber A. R. M. Graf
    Department of Psychology, University of Wisconsin Oshkosh, Oshkosh, WI, USA

Abstract

While dementia-related content on Twitter (X) is often stigmatizing, social media also serves as a powerful platform for dementia advocacy. Using thematic analysis, we coded the posts of 23 dementia activists (n = 2,026 tweets). Guided by two social psychological models, we examined four established antecedents of collective action—social identity, perceived efficacy, perceived injustice, and moral obligation—alongside four activists’ goals: information dissemination, influence, support provision, and personal experience sharing. We found empathic concern to be a powerful antecedent, manifesting as compassion, humanization of persons with dementia (PwDs), and co-production of knowledge. Social identity and perceived efficacy were more prominent than traditional antecedents like injustice or moral outrage. Activists often framed dementia in ways that fostered identification as a member of the dementia community, empowerment, and belonging. Support giving and experience sharing were the primary goals of dementia activists, indicating a strong focus on sustaining the ingroup rather than addressing injustice or fighting for societal change. These findings underscore the need for expanding existing models of collective action to better account for online identity-affirming and community-support actions in disability communities and emphasize empathic concern as a key mobilizing force in dementia activism. We discuss the implications of a new model of online dementia activism and the role of online dementia communities as effective platforms for activism and support.