Project promotes dialogue and participation in Alzheimer's research

Alzheimer's research affects many people and groups: patients and families, social organizations, professionals from many fields, companies and administrations. The "Alzheimer conCiencia" project carried out by the Universitat Jaume I has promoted dialogue between these groups and the research groups on campus through surveys, online interviews, round tables and discussion groups.

These actions seek to advance towards the responsible research and innovation model promoted by the European Union and have been highly valued by the participating individuals and groups. The actions carried out and the results of the project can be found in the online publication Alzhéimer y diálogo, una experiencia para la Investigación e Innovación Responsables.

In order to promote the relationship and access to groups linked to neurodegenerative diseases, the project has developed the "Virtual Alzheimer's Map in the province of Castellón". The map, produced collaboratively, includes the name, web address and social networks of more than 80 groups belonging to the administrative, social, professional, business and research spheres.

The latter includes ten research groups from the Universitat Jaume I that have participated in the project and are developing research on Alzheimer's from such different fields as neurobiotechnology, music education, geolocation, chemistry, marketing, nursing, psychology and ethics, among others. The research staff participating in the project has highlighted how dialogue has enabled research to be enriched through other perspectives.

In this sense, Ana María Sánchez, director of the Neurobiotechnology group, points out that contact with other UJI groups working in the field of Alzheimer's has allowed new avenues of research and collaboration to be established. "The combination of efforts is synergistic, that is, the result of what is achieved working together is much greater than the sum of separate work", stands out the researcher, who also highlights as very enriching direct contact with patients and professionals who work with them. "It is fundamental that collectives and people dialogue with each other, share and reflect together", also points out the researcher Ana Mercedes Vernia, who studies the effects of music on the improvement of the quality of life of people with Alzheimer's disease from the Q-Heart group.

Both researchers have participated in different actions of the project, including interviews through social networks and the discussion table open to society, which was also attended by Emilio Marmaneu, president of the association of relatives of Alzheimer's patients (AFA Castellón). Marmaneu stresses the importance of listening to the people affected and patient associations, counting on their vision and experience when researching and claims the leadership of the province of Castellón in the field of Alzheimer.

The director of the Scientific Culture and Citizen Science Project of the UJI, Lluís Martínez, was in charge of closing the table, which was moderated by the director of the Communication and Publications Service, Francisco Fernández Beltrán. Among the dialogue actions promoted by the project, it is also worth highlighting the holding of two discussion groups in which around twenty people from different groups took part. Those in charge of associations of people with neurodegenerative diseases and their families, municipal technicians and councillors, members of different professional associations, day centre and hospital workers and research staff all agreed on the interest in increasing the participation of the groups affected in one way or another in the research being carried out on neurodegenerative diseases.


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