LBU Impact Series: New Leeds Beckett and Dementia Forward research partnership to shape the future of Young Onset Dementia support

Dementia Forward is a leading charity for people affected by dementia, based in Harrogate. The project is a 30-month Knowledge Transfer Partnership (KTP), part-funded by UKRI (UK Research and Innovation) through Innovate UK. It will support the development of a Centre of Excellence for YOD support - including a physical base in East Yorkshire - as well as training and expertise that can be shared as a national YOD support framework.

The KTP is led by Laura Ashley, Professor of Health Psychology, and Sarah Jane Smith, Professor of Dementia Research, in the School of Humanities and Social Sciences at Leeds Beckett University. Professor Ashley explained: "Young Onset Dementia (YOD) is when a person develops dementia before the age of 65, and is a highly under-served aspect of dementia support. The experiences and needs of the YOD community are complex and differ from more generalised dementia support. YOD requires more innovative, person-centred services and care pathways tailored for the individual and their family."

Professor Smith said: "At Leeds Beckett University, we have extensive expertise in applied dementia and care-giver research, and will provide Dementia Forward with robust evidence-based approaches to engaging with their stakeholders and tailoring service design. This KTP has the potential to shape YOD service delivery nationally - allowing the charity to become thought leaders, influencing policy and driving change in the dementia care sector."

Jill Quinn, Chief Executive Officer and founder of Dementia Forward, has been instrumental in growing Dementia Forward from a small team supporting 200 families in its first year to a leading organisation supporting 4,500 families annually. She said: "We have delivered innovative young onset services for over 10 years now but repeatedly we have to fight for families to be understood and we know that the care they receive is not age appropriate. Ultimately, because of a lack of understanding and provision for the condition, this complex illness is made worse. This new project underpins our ambitions to provide evidence-based and research-informed solutions, to adapt and expand our services to support individuals and families to live fulfilling lives - and importantly influence the wider system, get the data right and provide the necessary funding streams.

"We aspire to transform YOD care at both regional and national levels - and hope that our evidence-based services can become a model for other dementia care providers, influencing care homes, healthcare professionals, and social workers nationwide. By improving YOD care, this project will shift mindsets and practices, contributing to better outcomes for people with dementia and their families across the country."

Professor Gary Jones, Director of Research in the School of Health at Leeds Beckett University, added: "At LBU, we are committed to supporting people to live healthy lives through co-creating research that addresses some of society's biggest challenges, including dementia. This KTP is part of a longer-term collaboration between LBU and Dementia Forward and we are proud to be embedding research-driven capabilities at the charity to put people first and make a real difference in our region and beyond."

An experienced graduate will be recruited to manage the project as KTP Associate. The role, Research and Innovation Coordinator, will be a full-time member of the Dementia Forward team, with full support of the LBU academics.

Leeds Beckett University is currently ranked eighth in the UK for its number of active KTPs.