Highlighting the power of collaboration and lived experience: Reflections on the 2024 Alzheimer Europe Conference
By Nigel Hullah, Chair of Three Nations Dementia Working Group and Dementia Advocate
In October, Nigel Hullah, Chair of Three Nations Dementia and dementia advocate, attended the Alzheimer Europe Annual Conference in Geneva. In Nigel’s own words, he discusses the importance of collaboration between organisations and listening to those with lived experience. Nigel also highlights the positive response he received when showcasing the work taking place in Wales within the dementia space.
The 2024 Alzheimer Europe Annual Conference successfully brought together a wide array of stakeholders to discuss pressing issues in dementia care. This year there was a healthy balance between research and practice. The event highlighted the need for ongoing research, collaboration, and advocacy to improve the lives of those affected by dementia.
This conference had a warm, engaging approach and all delegates felt supported, with many thought-provoking presentations that offered reality and future direction. As a person with lived experience of dementia I felt supported and valued by Improvement Cymru so that my voice and experiences are equal and promoted.
An overview of my contribution to the conference:
I delivered two poster presentations for Lleisiau Dementia promoting our work with Improvement Cymru at the Alzheimer Europe Conference, which effectively showcased the collaborative efforts to enhance dementia care and support across Wales. The presentations highlighted the importance of integrating lived experience into dementia services and emphasised the impact of community-driven and hospital initiatives.
I felt the posters were well-structured, providing clear and concise information on key topics, including:
- A focus on improving the quality of life for individuals living with dementia and their caregivers.
- Outlined the Wales Dementia Care programme focusing on the national and regional framework in place to improve dementia care as a nation working together.
- Outlining the methods used to gather data, including surveys, interviews, and engagement. This helped demonstrate the thoroughness of the dementia programme.
- Showcasing how lived experiences of people with dementia informed service development and delivery. This highlighted the value of co-production in creating relevant and effective support systems.
- Actionable recommendations for policymakers and practitioners, emphasising the need for ongoing collaboration and the importance of prioritising the voices of those affected by dementia.
We ensured that the posters were designed to be visually engaging, with a clear layout and a logical flow to make it easy for conference attendees, including those with dementia, to follow the information presented. We had many people stop and discuss the topics which highlighted how many countries are also working to promote similar themes and better dementia care.
During the conference, we engaged with attendees, bringing our friendly Welsh humour and chat that encouraged questions and discussion, and people felt we were able to discuss the significance of our work in a friendly relatable manner. This interaction fostered a positive atmosphere and allowed for valuable networking opportunities.
The poster presentations underscored the critical need for person-centred approaches in dementia care. By sharing insights from both Improvement Cymru and Lleisiau Dementia, the presentation resonated with a broad audience, highlighting the importance of community involvement in addressing the challenges faced by individuals living with dementia.
Overall, our presentations at the Alzheimer Europe Conference were a commendable effort that effectively communicated the significance of co-production, community and hospital support in dementia care. I felt our work in Wales and the approaches we use inspired attendees to consider how they can incorporate lived experiences into their own work. The collaboration between the two organisations exemplifies a model for future initiatives aimed at improving the lives of those affected by dementia.
The Alzheimer Europe conference had three key recommendations:
- Continue advocacy for policy change: Strengthen efforts to influence policymakers to prioritise dementia in national health agendas.
- Foster international collaboration: Encourage partnerships between countries to share best practices and research findings.
- Invest in public awareness campaigns: Implement campaigns aimed at reducing stigma and increasing understanding of dementia within communities.
Moving forward, Alzheimer Europe will focus on:
- Implementing the recommendations from the conference.
- Organising regional workshops to address specific challenges faced by different countries.
- Developing a comprehensive report summarising the conference findings and insights.