On 6 February, the ADIS Advisory Board (composed of people with Mild Cognitive Impairment due to Alzheimer’s disease) and the ADIS Young Adults Advisory Board (composed of university students in their early 20s) gathered for the first time. During the meeting, which was facilitated by Soraya Moradi-Bachiller (Public Involvement Officer at Alzheimer Europe, AE) and Ana Díaz (Public Involvement Lead, AE) and also attended by Jesús Rodrigo Ramos (Executive Director of the Confederación Española de Alzheimer y otras demencias, CEAFA), members addressed some topics related to the brain health campaign for young adults that they have been developing together over the past year. After this meeting, members attended a public event organised by AE in collaboration with CEAFA and the University of Barcelona. The event, called ‘Public Involvement in Alzheimer’s disease research’, focused on raising awareness of the ADIS project and the involvement of people affected by Alzheimer’s disease and young adults in discussions about dementia research, brain health care and stigma around neurodegenerative diseases.
The first panel of the event featured presentations by Kina García del Moral, member of the ADIS Advisory Board and CEAFA’s advisory board (“el PEPA”), the neurologist Raquel Sánchez-Valle and Jesús Rodrigo Ramos (Executive Director of CEAFA). Kina, who has Mild Cognitive Impairment due to Alzheimer’s disease, shared her experience of what it is like to live with Alzheimer’s and, at the same time, care for her partner who had dementia due to Alzheimer’s disease. Raquel and Jesús, on the other hand, gave the audience an overview of ADIS and the Public Involvement activities organised throughout this project.
The second panel featured Soraya Moradi-Bachiller, Jaime Soto-Martínez and Francisco Sáez-González (members of the ADIS Young Adults Advisory Board) and José Antonio García García (who has Mild Cognitive Impairment due to Alzheimer’s disease and is also a member of the ADIS Advisory Board). While Soraya gave more theoretical details about Public Involvement and how to involve people in research in a timely and meaningful manner, Jaime, Fran and García talked about Public Involvement from their personal experience as part of the ADIS advisory groups. Fran and Jaime reflected on how university students perceive Alzheimer’s disease and called for more practical experiences or awareness-raising activities to help them connect with the human side of the disease. Only through information and empathy, they said, can we build a more supportive and understanding society for those affected by this disease.
During the last session of the afternoon, speakers Ana Díaz, Jesús Rodrigo and Inmaculada Fernández Verde (AFA Barcelona) focused on the work of patient organisations and how they can continue collaborating with researchers and members of the public to remove the stigma associated with Alzheimer’s disease and provide the support needed to those affected by it. Alzheimer Europe and the ADIS consortium thanks all the speakers for their time and their powerful insights and speeches, and the audience for allowing them to bring together researchers, students, health and social care workers and patient organisations under the same roof, working towards the same goal.
