World Café report

The World Café  

The World Café was a lived experience workshop that brought together people living with dementia, carers, and loved ones to speak directly to policymakers as part of the development of the Modern Service Framework (MSF) for Dementia and Frailty.

The discussions reflected the realities of lived experience, and from these conversations emerged urgent priorities for transforming dementia care across England.

As the report makes clear, dementia has for too long been overlooked - leading to extended waiting times for diagnosis, fragmented care and a lack of consistent support throughout the pathway.

It’s not every day you get the chance to speak directly to the Department of Health and Social Care, and this report and its recommendations are a testament to the rich contributions that were made on the day by over 30 people with lived experience of dementia.

- Trevor Salomon, carer and World Café participant 

Report summary

From the World Café discussions, five priorities were clear:

• Early and accurate diagnosis is essential to improve outcomes. 
• Post-diagnostic support must be guaranteed – and currently is absent in far too many cases. 
• Families and unpaid carers need recognition and support, with the Casey Commission driving change in its first phase. 
• Workforce training on dementia is inconsistent and must improve, especially for GPs and care home staff. 
• Technology can help but is not a silver bullet; many people struggle to engage with technology as dementia progresses.

Report recommendations

1. Set bold outcome goals for dementia by establishing two overarching system-wide targets: firstly, a measurable reduction in age-standardised dementia-related mortality by 2035; and secondly, compression of morbidity, delaying onset and progression of dementia. 
2. Increase the national dementia diagnosis target and require diagnoses to include type and stage as early as possible.  
3. Guarantee structured post-diagnostic support for all people with dementia, including annual care plan reviews and personalised interventions to maintain quality of life. 
4. Make high-quality dementia training mandatory for all health and social care professionals, ensuring they have the skills to deliver consistent, compassionate care. 
5. Use technology and data-driven approaches to improve diagnosis, care planning and prevention and support public health campaigns that reduce stigma and encourage early intervention.

What comes next

The MSF represents a critical opportunity to transform dementia care for the one million people living with the condition in the UK today. Dementia care must shift from fragmented and reactive to consistent, proactive and person-centred.

The World Café findings set a clear direction for change: early diagnosis, guaranteed support, skilled professionals and appropriate use of technology.

The World Café was an opportunity to embed the voice of lived experience in policy creation, and I hope this engagement continues throughout the development of the MSF.  

Alzheimer’s Society remains committed to working with the Government to ensure that the MSF is an aspirational framework which seeks to truly transform dementia policy.

- Kieran Winterburn, Head of National Influencing at Alzheimer’s Society  

The MSF must be bold enough to match the scale of the challenge - with measurable goals that improve both quality and length of life. Alzheimer’s Society stands ready to support the next phase of this work.