Dementia UK RISE Consultancy

Dementia UK is the UK's specialist dementia nursing charity, providing life-changing support to families through its network of Admiral Nurses. The charity helps people affected by dementia access expert advice, practical guidance and emotional support throughout their dementia journey.

We delivered a mixed-method research programme combining quantitative analysis of 2,615 Black Afro-Caribbean respondents with eight focus groups involving 40 participants. The research explored cultural perceptions of dementia, family decision-making, trusted information sources, messaging preferences and media habits. Insights were translated into audience personas and strategic recommendations covering engagement, messaging and channel strategy.

The research revealed that trust, family influence and community endorsement are critical factors in dementia support decisions. Community-led messaging centred on understanding, reassurance and support outperformed emotionally driven approaches, while trusted voices across healthcare, faith and community networks emerged as key routes to engagement. Our RISE research provided Dementia UK with a clear strategy for launching its Admiral Nurse service and identified key audience personas most likely to engage as early adopters.

The research revealed that dementia care is overwhelmingly viewed as a family responsibility within Black Afro-Caribbean communities, with women, particularly mothers and sisters, often recognising early signs of concern. Healthcare decisions are frequently influenced by family elders or made collectively, making trust a critical factor in engagement. Families are most likely to seek information and support through trusted sources such as healthcare professionals, churches, community organisations and personal networks. Messaging centred on hope, reassurance, understanding and collective support consistently outperformed highly emotional approaches. The study also highlighted barriers including stigma, fear of judgement, limited awareness of dementia and practical challenges around accessibility. At the same time, culturally relevant representation, education and community advocacy emerged as strong motivators for engagement. Quantitative analysis further showed that Black Afro-Caribbean audiences are highly ambitious, digitally engaged and community-minded, with trusted voices across social platforms, faith networks and community groups playing a key role in influencing awareness and action.