New Report Calls For Renewed Focus On Wellbeing Of People Living With Dementia

A groundbreaking new report has highlighted the urgent need for a fundamental shift in how society supports people living with dementia, emphasising connection, community, and personalised care as essential foundations for wellbeing.

The report, titled ‘I just want to be able to dance,’ presents a compelling vision for dementia care that moves beyond medical models to focus on what truly matters to those affected by the condition. Drawing from extensive consultation with people living with dementia, their families, carers, academics, and healthcare professionals, the research offers both hope and practical guidance for transforming care approaches across the UK.

Between September and December 2024, researchers conducted comprehensive conversations with 67 people living with dementia and their family and friend carers across London, the South East, Yorkshire, and Lancashire. The study employed various engagement methods, including group discussions, one-to-one interviews, and paired conversations, ensuring diverse perspectives were captured.

The research team also consulted with professionals from the NHS, academic institutions, and local voluntary organisations to gain a comprehensive understanding of current challenges and opportunities within the care sector.

The report reveals that people living with dementia consistently identify several crucial elements that significantly impact their quality of life. Participants emphasised the importance of maintaining a life beyond their diagnosis, feeling recognised and valued within their communities, and having opportunities to contribute meaningfully to society.

Connection emerged as a central theme, with many highlighting how staying engaged with others and avoiding isolation were fundamental to their wellbeing. The research also identified the damaging impact of negative attitudes and stigma, which can compound the challenges faced by those living with dementia.

Family and friend carers expressed clear needs for better guidance and support, as well as respite opportunities to sustain their caring roles effectively. The report notes that while these factors are recognised as essential, their availability and consistency vary significantly across different regions.

The report outlines nine specific recommendations designed to improve the lives of people living with dementia which include:

Enhanced Community Support: Expanding community-based initiatives that provide opportunities for people living with dementia to remain connected and active within their local areas.

Comprehensive Care Pathways: Investing in early intervention and ongoing support services that span from initial diagnosis through end-of-life care, ensuring continuity and quality throughout the care journey.

Stigma Reduction: Implementing targeted campaigns and education programmes to challenge harmful stereotypes and promote understanding of dementia within communities.

Improved Accessibility: Enhancing housing, public spaces, and services to become more dementia-friendly, enabling greater independence and participation in community life.

Technology Integration: Leveraging technological innovations to provide better support tools and resources for both people living with dementia and their carers.

The remaining recommendations focus on workforce development, policy reform, research advancement, and sustainable funding models to support these initiatives.

The report’s title, drawn from a participant’s simple yet profound statement, encapsulates the core message that people with dementia retain their fundamental humanity, aspirations, and rights. This perspective challenges traditional approaches that may inadvertently diminish the personhood of those living with the condition.

Neil Crowther, co-author of the report, emphasised that while medical cures for dementia remain elusive, there are numerous ways to address the loss of connection, purpose, and identity that many people with dementia experience. He highlighted existing examples of place-based social innovation and community development that are already making a difference across the country.”

“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,” Crowther explained. “We put forward some ideas for how these could inspire and inform action everywhere.”

The findings have significant implications for residential and nursing care providers. The report suggests that successful dementia care requires moving beyond task-focused approaches to embrace models that prioritise individual preferences, maintain connections with the wider community, and support continued engagement in meaningful activities.

For care homes, this translates to creating environments that feel less institutional and more community-oriented, where residents can maintain their sense of identity and purpose. The research indicates that such approaches not only benefit residents but also provide satisfaction for staff and families.

The report represents a call to action for policymakers, care providers, community organisations, and society as a whole to collaborate in creating more inclusive and supportive environments for people living with dementia. By focusing on what people themselves identify as important – connection, purpose, dignity, and the freedom to live life their way – the care sector can work towards a future where dementia does not automatically mean isolation or diminished quality of life.