We thank all our presenters, stakeholder organisations and project partners who joined us and participated at our workshop: Optimising Outreach: Communication and Dissemination Strategies for Dementia-related projects

We had 78 participants who joined our online workshop that we organised with the aim to start a conversation about how to make a successful impact in service development, provide quality care, addressing health inequalities and reducing stigma for individuals living with dementia. 

Our distinguished presenters and experts represented EU or international organisations and EU funded projects, all committed to transforming dementia care by introducing innovative, digital, and person-centred approaches enhancing advocacy, and raising public awareness.

Inés Rey Hidalgo, head of the communication and dissemination work package of the Joint Action JADE Health welcomed participants and moderated the event.

Corinne Salinas, project officer of HADEA spoke about challenges facing citizens, particularly post-COVID, with a focus on rising suicide rates among young people and the elderly, and provided data on the alarming mental health statistics underlining that 46% of citizens have faced emotional or psychological issues in Europe. She gave an overview of the European Commission´s response facing these challenges, listing the mental health initiatives and funding strategies of the Commission and detailed the allocation of the 1.23 billion euros budget allocated for improving mental health services and reduce burden of  non-communicable diseases via the EU4Health programme, it´s structure and focus, including the new joint action PRISM, which aims to support mental health improvement for vulnerable groups, particularly for the elderly, migrants and youth. Corinne Salinas emphasised and stressed the need to build synergies and boost collaboration among the EU funded projects to maximise effectiveness and dissemination impact among stakeholders, patient groups, communities and policy makers.

Elisabeth García Alonso on behalf of the lead partner and coordinator of Jade Health Fundesalud, presented the JADE Health project, which focuses on dementia prevention, early detection, and education. She highlighted project objectives which aim to improve health outcomes related to dementia across Europe. She stressed that effective communication is crucial for raising awareness and reducing stigma, which can hinder access to care. She also underlined the need to deepen empathy and public understanding of the harm of notions like isolation and discrimination can induct positive change in society.

Inés Rey Hidalgo, FICYT and leader of communication and dissemination work package of JADE Health spoke about the communication and dissemination strategy currently under elaboration that will guide project´s partners and will outline planned activities to enhance outreach and knowledge sharing among partners. She also spoke about differentiating neurological diseases, explaining that dementia results from severe brain damage leading to cognitive impairment. She clarified that Alzheimer´s disease is a specific type of dementia, and while it is the main cause of dementia, not all individuals with Alzheimer´s have dementia. Inesrey also provided guidance on person-centred language, recommending terms to use and avoid when discussing dementia. She detailed ongoing activities of the JA to enhance communication efforts, presented a series of pilot actions designed to enhance awareness and understanding of dementia. These actions will take place in various settings, including active aging centers and mental health hubs, and will involve training for healthcare professionals and educational outreach to schools. Additionally, a social media campaign and a photo contest will be launched to further engage the public and promote understanding of dementia. Finally she underlined the importance of building a solid stakeholder network at national, regional, and local level.

Teun Toebes, activists who spent 3,5 years in different nursing homes and also studied the differences of residential care among EU countries, introduced his film "YUMO Forever" highlighting its international reach and recognition. He shared his personal experience living in a nursing home, where he formed meaningful connections with residents, and discussed the societal misconceptions surrounding dementia.   Teun argued for a shift in focus from merely addressing care to understanding dementia as a broader societal issue. He explained to us the misconception that improving care equates to enhancing quality of life for people with dementia. He pointed out that the current healthcare system often prioritizes medical interventions over personal needs and experiences and called for a change in approach, urging healthcare providers to listen to individuals with dementia and consider their perspectives in care strategies. He urged a real change of culture where people with dementia are not "locked in" anymore and where new spaces of freedom can be re-created, urging healthcare providers to listen to individuals with dementia and consider their perspectives in care strategies. We highly recommend watching his award winning documentary "human forever": https://human-forever.com/ 

Dr Frédérique Djurdjevic from World Health Organization (WHO) highlighted the most important areas among WHO´s activities focusing on Mental Health, Dementia, and Healthy Ageing.  She spoke about the WHO European Framework for Action on Mental Health (EFAMH 2021–2025) promoting mental well-being, combats stigma, and strengthens investment in quality mental health services and supports the development of national dementia plans to expand early diagnosis, treatment, and care for older adults. Also mentioned the Pan-European Mental Health Coalition, which was established as a mechanism to support implementation of the EFAMH, and includes a work package specifically focused on engaging stakeholders with an interest in advancing the mental health and well-being of older adults.

Participants could watch a short video  WHO prepared to tell what is like to live with dementia, and the impact that the condition can have on family and professional life in order to show what each of us can do to help people living with dementia.

Then Dr Djurdjevic detailed the forthcoming Regional Strategy "Ageing is Living: Promoting a Lifetime of Health and Well-being in the WHO European Region" (2026–2030) that will focus on prevention across the life course, transforming health and care systems, creating age-friendly and dementia-inclusive environments, as well as addressing stigma and ageism and supports to reduce the risk of dementia and person-centred care. One of the key action areas of the strategy is entitled “Challenging ageism and preventing violence and discrimination against older persons". Participants´ attention was drawn to the virtual stakeholder consultation that WHO organises 27th May 2025, with the title: Shaping the Future of Healthy Aging to engage civil societies and none-state actors, where the above issues will be discussed.

Finally important publications of WHO were presented:

• WHO MOSAIC Toolkit that provides practical guidance for designing and implementing interventions to reduce stigma and discrimination against people with mental health conditions, including dementia, emphasizing community engagement, empowerment, and evidence-based approaches
• Dementia in Refugees and Migrants examining the challenges faced by older refugees and migrants particularly managing dementia
• WHO Guidelines (2019) Risk reduction of Cognitive Decline and Dementia available in English and Spanish
• Integrated Care for Older People ICOPE (2nd edition) a guidance for person-centered assessment and pathways in primary care
• Global Dementia Observatory
• Global Action Plan on the Public Health Response to Dementia (2017-2025)
• Blue print for Dementia Research- aims to support the global prioritisation of dementia research and provide a coordination mechanism

Kate Boor-Ellis, communication officer of Alzheimer Europe detailed the mission of the organisation to give a voice to people living with dementia and their caregivers and families and stressed the key importance of including people with lived experiences when organisations create strategies, events and design services. Alzheimer Europe´s website and all the used communication channels (social media, newsletters, Dementia in Europe magazine and annual events like Alzheimer Europe Conference) were introduced, including the Alzheimer Europe Anti-Stigma Award that was established in 2022 by Alzheimer Europe and Alzheimer Europe Foundation to recognise outstanding work combating stigma and promoting positive image of dementia and people living with it.

Vera Nies, project lead of RADAR-AD project introduced their main partner Lygature - an expertise center for multi stakeholder partnerships, which goal is to accelerate the development of new therapeutically solutions for patients in the form of a public-private collaboration among academia, industry, patient organisations, regulators and society - assisting RADAR-Ad to achieve its main goal to develop and validate technology-enabled quantitative and sensitive measures of functional decline in people living with Alzheimer. Vera Nies underlined "it’s key to communicate with sensitivity and patient organisations are the best to tell how to communicate about them". She introduced the Patient Advisory Board that assists RADAR-AD to create its communication strategy and co-creation as an approach and methodology that enables to incorporate patients´  feedback in research findings. She concluded to summarise key essential when communicating about Alzheimer’s with integrity reflecting the needs of persons living with dementia, have transparent processes, and stressed that trustworthy communication can only be achieved by the inclusion of personal, lived experiences.

Stavroula Tsigkou, EU project manager at CARE4Elders project introduced how  communication and dissemination strategy has been developed at the project and showcased the practices of stakeholder involvement in-dementia related initiatives, what are the parameters of a successful stakeholder involvement and how CARE4Elders works with educational organisations, formal and informal caregivers´ organisations, market representatives and policy and umbrella organisations by developing an engagement plan that needs regularly updated. She also mentioned special training and workshops they organise to upskill careforces´ knowledge on quality care for people living with dementia e.g.: highlighting the importance of non-verbal communication in dementia care. The audience was involved to share ideas by using slido app.

The workshop ended by Luc Nicolas, innovation and exploitation manager at COMFORTage a Horizon EU funded project that puts the community at the centre of its approach in contributing to the global destigmatisation of dementia. COMFORTage also aims to address frailty and dementia through technology, aligning with the European Commission´s silver deal initiative, and recently has established its Community Forum  that serves a collaborative network designed to sustain and amplify the project´s impact in cooperation with the European Health Telematics Association (EHTEL)- offering webinars and workshops discussing "Dementia and Frailty Service Delivery Models for affected patients and their carers"  in order to support patients, focusing on their emotional, physical, and practical needs.

Luc Nicolas underlined the need of standardised data that can revolutionise EHDS, how multi-model data can be integrated and standardised by ethical usage of AI; how the tool of co-creation can build trust. In his conclusions he stressed the importance of providing training for stakeholders and create messages tailored for them, involve all partners both develop local and global strategies, being as open as possible towards data sharing at science platforms.

Elisabeth García Alonso thanked all the presenters for their exciting lectures and the participants for joining the workshop, and concluded:  "Today´s workshop underscored the transformative power of collaboration and knowledge sharing in dementia-related initiatives. By uniting researchers, activists, and community organizations, we emphasized the importance of co-creating communication strategies that are inclusive and impactful. Our collective efforts aim to ensure that people living with dementia are not only reached but are also active participants in shaping the narratives and solutions that affect them. Through shared experiences and mutual learning, we drive meaningful change and foster a more inclusive society."

Presentations 

Corinne Salinas. HaDEA.  (Download)
Elisabeth García Alonso. Fundesalud. (Download)
Inés Rey Hidalgo. FICYT. (Download)
Teun Toebes. Human Forever Human. (Download)
Frédérique Djurdjevic. WHO Europe. (Download)
Kate Boor-Ellis. Alzheimer Europe. (Download)
Vera Nies. Radar-AD project.  (Download)
Stavroula Tsigkou. CARE4Elders project. (Download)
Luc Nicolas. COMFORTage project. (Download)

Recording