Our new report, ‘I just want to be able to dance,’ calls for a fresh focus on supporting people living with dementia through connection, community, and personalised care and support.
Based on conversations with people living with dementia, family and friend carers, academics, and people who work in care and support, the report offers a hopeful vision for what’s possible and practical recommendations for what needs to happen to enable more people to live life their way.
Why this work is important
Health and wellbeing are shaped by how we are able to live our lives. We all need a sense of purpose, connection, and freedom to live our life our way. That does not change with a dementia diagnosis, but the world around us can too often conspire with the underlying conditions to undermine our ability to sustain all of these building blocks of our wellbeing.
The consequences are felt in the diminished quality of life and pressures faced by people living with dementia and their families and friends.
What we did
Between September and December 2024, we spoke with 67 people living with dementia and family and friend carers across London, the South East, Yorkshire, and Lancashire. The conversations focused on what matters to people and what could make a difference. Participants shared their experiences in groups, one-to-one, and paired settings.
Throughout the project we also spoke with people working for the NHS, academic institutions, and local and voluntary groups.
What we heard
People were clear about what makes a difference to the wellbeing of people living with dementia. Many highlighted the importance of having a life beyond dementia, feeling recognised and valued, and having opportunities to be helpful. Staying connected and not feeling alone were crucial, as was freedom from negative attitudes and stigma. Additionally, people expressed the need for better guidance and support, as well as support and breaks for family and friend carers.
These are the things that make a difference and yet they’re not always available or consistent across the country.
What needs to change
The report sets out nine practical actions to improve the lives of people living with dementia. These include the need for greater community-based support, with more opportunities for people living with dementia to stay connected and active. It also calls for investment in early and ongoing support from diagnosis until death, alongside a stronger focus on tackling stigma and harmful stereotypes. Additionally, improving accessibility in housing, public spaces, and services, and harnessing technology for better support are also critical for creating more inclusive communities.
The report’s title, ‘I just want to be able to dance,’ is a simple, human expression of what matters. It’s a reminder that people with dementia are still people, with hopes, passions, and rights. We hope this report will inspire renewed energy and collaboration to make these ideas a reality so we can create communities where everyone has the opportunity to flourish.
Neil Crowther, co-author of this report, says:
“There are as yet no ‘cures’ for dementia, but there are many ways to avoid or heal the loss of connection, purpose and sense of identity and self-worth that too many people living with dementia told us harms their health, wellbeing, and that of people with whom they shared their lives. Our report focuses on the place-based social innovation and community development that is already helping people and families across the country to live each day as best they can, and puts forward some ideas for how these could inspire and inform action everywhere.”
Explore more
To read the full report visit our resource library.
