When asked what mattered most to her wellbeing, a woman living with dementia replied: ‘I just want to be able to dance.’ It’s a simple wish, but it speaks volumes. At the heart of dementia support lies the fundamental human desire to keep doing the things that give life meaning – yet current UK policy still centres on the disease, not the person.
In our new report, ‘I just want to be able to dance,’ published by Think Local Act Personal, we make the case for a new approach: one in which people living with dementia are not just consulted but are leading the change.
Dementia policy must start with people, not systems
Too often, decisions about dementia care are made in boardrooms, not in communities. But our conversations, with over 60 people living with dementia, family carers, professionals, and grassroots leaders, revealed this truth: the expertise of those living with dementia is unmatched.
They told us what sustains their wellbeing:
- Staying connected to others
- Maintaining identity and purpose
- Being seen as capable, not just cared for
- Having a say in decisions that affect their lives
‘Dementia is not the end of my life.’
‘It helps to feel helpful – doing something useful when I can.’
‘We were going to move, but my husband said, “I don’t want to – I know where everything is, and everybody knows me.”’
A life beyond dementia
People want more than services. They want a life. The report highlights how people thrive when they have access to peer support, faith groups, community activities, and spaces that are welcoming and inclusive.
Whether it’s singing in a choir, sharing photographs online, or supporting others newly diagnosed through buddying schemes, people are finding meaning and solidarity in each other.
But support is patchy. In many places, navigating the system is a job in itself, and too many people feel alone, invisible, or even infantilised by the services that are meant to help.
‘When I go out, I try to act normal and keep my mouth shut. I’m frightened of ridicule.’
What needs to change
Our report calls for a shift from a medicalised, deficit-based view of dementia to one rooted in rights, relationships, and reciprocity.
We recommend that policymakers:
- Co-produce place-based strategies and plans with people living with dementia from the start, not as an afterthought
- Invest in local navigation and support from diagnosis to end of life, so no one is left adrift
- Support community-led initiatives like peer groups, circles of support, and meeting centres
- Challenge stigma through public campaigns, led by those with lived experience
- Recognise and fund what works – early action, personalised support, and relationship-based care
This isn’t just about improving services. It’s about shifting power.
A call to policymakers, practitioners, and the public
To those shaping the future of dementia care – this is your moment. People living with dementia have told us, clearly and powerfully, what matters.
Now the question is: will we listen?
‘We’re not just living with dementia – we’re leading with it.’
We don’t need another strategy written behind closed doors. We need policy written alongside those who know best. That starts with recognising people living with dementia not as passive recipients of care, but as leaders, experts, and agents of change.
