At the heart of the EMPOWER Dementia Network+ is the belief that those directly affected by dementia must shape the future of care. Through co-creation, we have woven together the voices of people with dementia, carers, and professionals to define what excellent and inclusive dementia care should look like.

Tracing the development of our shared vision:

To guide discussions, we used metaphorical garden themes, helping us frame complex ideas in creative and accessible ways:

• Tree: Vision for Excellent and Inclusive Dementia Care
  Ideas include integrated services, equal access, and meaningful inclusion.
• Tool Shed: Tools Needed to Achieve Our Vision
  Suggestions include policy labs, dementia-specific training, and knowledge-sharing forums.
• Compost Heap: Barriers and Approaches That Need to Be Removed
  Attendees identify obstacles such as stigma, fragmented services, and underfunding.

Key Insights:

• Dignity and respect are non-negotiable.
• Personalised, holistic care must consider culture, language, and individual needs.
• Carers need respite and recognition because their wellbeing matters.
  

The 7 Guiding Principles

This living document captures what matters most to our group and sets out principles that will shape the way we work together moving forward:

1. Driven by values of dignity and compassion
2. Integrated services working together
3. Sustainably funded
4. A skilled, valued and supported workforce
5. Personalised and holistic
6. Supportive of carers through respite and prioritisation of their wellbeing
7. Shaped by the voice of lived experts impacting on policy

This vision is not static. It is a living document, one that will continue to shift and grow as we do. As our relationships evolve and our understanding deepens, so too will the principles that guide us. We see this document not as a finished product, but as a compass, something we return to, revise, and reimagine together.

Phase 3: Lived Experts Refine the Vision (Late February 2025)

In late February 2025, we returned to our People with Lived Experience of Dementia Group – EMPOWER (PLEDGE), asking for reflections on clarity, tone, inclusivity, and alignment.

The feedback emphasised the importance of simplifying language to ensure accessibility, with a recommendation to avoid academic or metaphor-heavy terms unless clearly explained. It was suggested that illustrations use bold, readable fonts to improve accessibility, and the idea of adding a lay-friendly glossary was raised if more abstract language were to be retained. The group also highlighted the need to reframe clinical terminology, advocating for person-centred language, such as referring to people living with dementia rather than ‘patients’. There was a strong emphasis on the experiences of carers and families, recognising that care affects everyone, not just the individual diagnosis. Lastly, the group stressed the significance of joy, meaning, and creativity, suggesting that funding should address both needs and wants.These suggestions were instrumental in shaping the next version of the vision, making it more representative and inclusive.

Phase 4: Community Partners Refine the Vision (April 2025)

We met with our Community Partners Panel to gather final feedback on whether the vision resonated with what they heard in the co-creation workshops. The feedback underscored the importance of amplifying carers’ voices and addressing more intersectional needs, including those of the LGBTQ+ community and rural populations. In response, we strengthened the carer support in the mission statement, and placed a greater emphasis on intersectionality. These suggestions played a crucial role in shaping the next version of the vision, making it more inclusive and reflective of diverse needs.

The contributions of people and groups across our Network have been invaluable. They have offered essential insights from those living with dementia and supporting others through caregiving. These partners ensure that the vision is not only relevant, but truly reflective of the experiences, needs, and aspirations of individuals and families affected by dementia across the UK.

What’s Next?

The work does not stop here. The EMPOWER Network will continue to:

• Expand co-creation through workshops, ensuring diverse voices are heard.
• Fund innovative projects via our Small Project Fund.
• Influence policy by sharing evidence from our Policy Lab.

We invite everyone, lived experts, researchers, carers, clinicians and advocates, to join us. Together, we can build a future where dementia care is compassionate, equitable and empowering.