Between April and October 2025, Cardiff Third Sector Council (C3SC) delivered “Community Matters”: Living and Coping with Dementia, funded by Cardiff & Vale University Health Board. The project shows how C3SC’s infrastructure role supported community organisations to involve people affected by dementia in conversations about local support, and to develop practical responses based on what people said.
C3SC worked with seven community-based organisations to engage 187 people living with or at risk of dementia, along with carers, families, and friends. Two-thirds of participants came from ethnic minority communities, reflecting the strength of working through trusted local organisations that have established relationships, cultural understanding, and credibility within their communities.
Similar issues came up across the conversations. Many people found it hard to access dementia support, particularly at earlier stages. While statutory health and social care services were seen as essential, participants described gaps in prevention, early help, and community-based activity. Barriers such as stigma, limited awareness, and language needs were raised frequently, especially by people from marginalised communities.
With funding and coordination from C3SC, community organisations were able to hold discussions in familiar, everyday settings. Participants spoke openly about what matters to them, including being treated as individuals rather than defined by a diagnosis, staying connected to activities they enjoy, receiving support close to home, and having services that respect culture, faith, language, and family traditions. Carers spoke about the impact of caring on their own wellbeing, as well as the need for clearer information, peer support, respite, and better coordination between services.
C3SC supported organisations to test ideas emerging directly from these community conversations. Six organisations received additional funding to pilot small-scale initiatives, including culturally tailored memory cafés, dementia awareness sessions delivered in community languages, creative arts activities, companionship support, and approaches that supported both people with dementia and their carers. These pilots demonstrated how community organisations can respond quickly, adapt activities based on feedback, and reach people who may not engage with mainstream services.
The project also highlighted challenges faced by many third sector organisations. Short-term funding makes it difficult to plan or build on learning. Fragmented systems can limit collaboration. Community organisations are not always recognised as part of care pathways, despite their reach and experience. Ongoing pressures around skills, training and volunteer support were also identified.
This support sits within C3SC’s role as Cardiff’s third sector infrastructure body. C3SC helps strengthen organisational capacity, connect organisations, support access to funding, coordinate learning and training, and ensure the collective voice of the sector is heard in strategic discussions. Through “Community Matters”, C3SC supported community organisations to implement ideas from conversations in practice.
The project has strengthened relationships across the sector, built shared evidence base grounded in lived experience, and tested approaches that can be developed further. It shows how community organisations, when supported, can involve local people in shaping dementia support in ways that are rooted in everyday experience.
C3SC is the umbrella charity for the voluntary sector in Cardiff. Membership and free, and our team have the experience and expertise to support you into volunteering, sustaining community resources, and connecting with likeminded individuals and groups to develop the Cardiff third sector. Get in touch to discuss how we can help you – email enquiries@c3sc.org.uk; or call 029 2048 5722.
