One step beyond the lab and clinic: "walking the dementia conversation"

Front Public Health. 2023 Dec 8:11:1284692. doi: 10.3389/fpubh.2023.1284692. eCollection 2023.

Abstract

Millions of dollars have been lost in dementia research over the last 30 years owing to unsuccessful clinical trials aimed at finding an effective treatment for the condition. Although two promising drugs have been identified, the research effort is insufficient. The dehumanization of patients and the pressure to publish have led to a decline in the quality and usefulness of scientific research. One way to tackle these problems is establishing close contact with those who put their faith in researchers. Fine-tuning the participation of patients with dementia and caregivers in research design and improving their connection and communication with researchers could positively contribute to enhancing the perspectives and designing strategies for scientists in order to generate a new and enriching vision. The Walking the Talk for Dementia event showed that people can still live with dementia despite their condition. Approximately 300 people participated in the all-week "Santiago's Camino" symposium. People living with dementia, caregivers, healthcare professionals, activists, clinicians, and researchers participated in this event. The "Walking the Talk for Dementia" (WTD) event vividly demonstrated a strong commitment to upholding Global Brain Health Institute's (GBHI) core values of Authenticity, Fairness, Openness, Respect, Courage, and Empathy (A FORCE) to advance equity in brain health. These values provide clear guidance for their advocacy initiatives aimed at mitigating the global impact of dementia. Research and development are essential across scientific fields, especially in clinical contexts where involving patients and caregivers is critical. The WTD initiative exemplifies this aspect by bringing together researchers, caregivers, and dementia patients on the Camino de Santiago in Spain.

Keywords: dementia; empathy; openness; patients; research participation.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Caregivers
  • Communication
  • Dementia* / therapy
  • Empathy
  • Health Personnel
  • Humans

Grants and funding

The author(s) declare financial support was received for the research, authorship, and/or publication of this article. To ensure inclusivity at the event, the organizers sought funding to promote diversity among participants. This inclusive approach aimed to encompass a wide range of backgrounds, stories, and perspectives. To achieve this goal, the organizers actively sought sponsorship from companies and donors who were committed to supporting the event and enabling the participation of individuals from low- and middle-income countries. The sponsors played a vital role in ensuring equitable access to the event's valuable experiences and opportunities. Organizers received institutional backing from prominent organizations such as Alzheimer's Disease International (ADI), Global Brain Health Institute (GBHI), Atlantic Institute, World Young Leaders in Dementia, European Brain Council, Project We Forgot, Dementia Singapore, Alzheimer's Association, University of Santiago de Compostela, BrainLat, and Associação Crônicos do Dia a Dia (CDD), who was the main sponsor among numerous additional supporters.