Let This Be A Symphony: A Lived-experience, Cross-disciplinary Model For Dementia Media Advocacy:

Author Block: Michelle Memran.

Global Brain Health Institute, San Francisco, CA, USA.

Abstract:

Public narratives about dementia in mainstream media overwhelmingly emphasize late-stage decline and loss. These portrayals reinforce stigma, limit understanding, and contribute to social isolation for individuals and families after diagnosis. LET THIS BE A SYMPHONY is a collaboratively created video advocacy campaign designed to transform how mild cognitive impairment (MCI) and dementia are understood by centering the knowledge, agency, and creativity of those living with these conditions.

The campaign's main methodological component is a pilot involving six virtual Media Action Groups composed of members experiencing MCI or early-to-mid-stage dementia. These groups will meet weekly on Zoom over four to six weeks in a facilitated, collaborative setting to create short advocacy videos.

This program design is informed by a recent needs assessment conducted by the nonprofit National Council of Dementia Minds, which engaged 65 individuals living with dementia from diverse racial, geographic, and diagnostic backgrounds to identify key action areas.

Each Media Action Group will focus on one of six priority areas identified in the assessment—Stigma, Social, Emotional, Medical, Financial, and Legal-and tailor content to its members' lived experiences and goals. Sessions follow a participatory media-making model inspired by journalistic editorial pitch meetings, encouraging collective idea generation, peer feedback, narrative refinement, and shared decision-making, while also incorporating rolling consent and accessibility measures to meet cognitive variability.

Participants work alongside the project lead—a seasoned documentary filmmaker and Atlantic Fellow for Equity in Brain Health—and invited guest contributors, including clinicians, researchers, care partners, artists, and journalists. The facilitation model prioritizes psychological safety, flexibility, and respect for participant autonomy, positioning those with lived experience as narrative leaders rather than subjects of study.

The pilot will produce 10 advocacy videos of varying lengths for distribution across social media platforms, conferences, healthcare settings, educational environments, and public venues. By adopting a replicable, participatory media approach, LET THIS BE A SYMPHONY aims to reduce stigma, promote equity, shift public perceptions, and influence public, professional, and policy-level understandings of MCI and dementia. The project recently received initial pilot funding from the Global Brain Health Institute, Alzheimer's Association, and Alzheimer's Society UK.