One step beyond the lab and clinic: “walking the dementia conversation”
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 t...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2023-12-01
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| Series: | Frontiers in Public Health |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fpubh.2023.1284692/full |
| _version_ | 1797400675563339776 |
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| author | Jonathan Adrián Zegarra-Valdivia Jonathan Adrián Zegarra-Valdivia Jonathan Adrián Zegarra-Valdivia Fernando Aguzzoli-Peres Fernando Aguzzoli-Peres Alex Kornhuber Alex Kornhuber Faheem Arshad Faheem Arshad Faheem Arshad Carmen Noelia Paredes-Manrique |
| author_facet | Jonathan Adrián Zegarra-Valdivia Jonathan Adrián Zegarra-Valdivia Jonathan Adrián Zegarra-Valdivia Fernando Aguzzoli-Peres Fernando Aguzzoli-Peres Alex Kornhuber Alex Kornhuber Faheem Arshad Faheem Arshad Faheem Arshad Carmen Noelia Paredes-Manrique |
| author_sort | Jonathan Adrián Zegarra-Valdivia |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-09T01:57:57Z |
| format | Article |
| id | doaj.art-a450fe4f6aa6471888badb4a8ec0e7da |
| institution | Directory Open Access Journal |
| issn | 2296-2565 |
| language | English |
| last_indexed | 2024-03-09T01:57:57Z |
| publishDate | 2023-12-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Public Health |
| spelling | doaj.art-a450fe4f6aa6471888badb4a8ec0e7da2023-12-08T12:25:00ZengFrontiers Media S.A.Frontiers in Public Health2296-25652023-12-011110.3389/fpubh.2023.12846921284692One step beyond the lab and clinic: “walking the dementia conversation”Jonathan Adrián Zegarra-Valdivia0Jonathan Adrián Zegarra-Valdivia1Jonathan Adrián Zegarra-Valdivia2Fernando Aguzzoli-Peres3Fernando Aguzzoli-Peres4Alex Kornhuber5Alex Kornhuber6Faheem Arshad7Faheem Arshad8Faheem Arshad9Carmen Noelia Paredes-Manrique10Global Brain Health Institute – University of California, San Francisco, San Francisco, CA, United StatesTrinity College Dublin, Dublin, IrelandFaculty of Health Sciences, Universidad Señor de Sipán, Chiclayo, PeruGlobal Brain Health Institute – University of California, San Francisco, San Francisco, CA, United StatesTrinity College Dublin, Dublin, IrelandGlobal Brain Health Institute – University of California, San Francisco, San Francisco, CA, United StatesTrinity College Dublin, Dublin, IrelandGlobal Brain Health Institute – University of California, San Francisco, San Francisco, CA, United StatesTrinity College Dublin, Dublin, IrelandNational Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, IndiaUniversidad Tecnológica del Perú, Lima, PeruMillions 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.https://www.frontiersin.org/articles/10.3389/fpubh.2023.1284692/fullpatientsdementiaempathyopennessresearch participation |
| spellingShingle | Jonathan Adrián Zegarra-Valdivia Jonathan Adrián Zegarra-Valdivia Jonathan Adrián Zegarra-Valdivia Fernando Aguzzoli-Peres Fernando Aguzzoli-Peres Alex Kornhuber Alex Kornhuber Faheem Arshad Faheem Arshad Faheem Arshad Carmen Noelia Paredes-Manrique One step beyond the lab and clinic: “walking the dementia conversation” Frontiers in Public Health patients dementia empathy openness research participation |
| title | One step beyond the lab and clinic: “walking the dementia conversation” |
| title_full | One step beyond the lab and clinic: “walking the dementia conversation” |
| title_fullStr | One step beyond the lab and clinic: “walking the dementia conversation” |
| title_full_unstemmed | One step beyond the lab and clinic: “walking the dementia conversation” |
| title_short | One step beyond the lab and clinic: “walking the dementia conversation” |
| title_sort | one step beyond the lab and clinic walking the dementia conversation |
| topic | patients dementia empathy openness research participation |
| url | https://www.frontiersin.org/articles/10.3389/fpubh.2023.1284692/full |
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