One step beyond the lab and clinic: “walking the dementia conversation”

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.