SPIN Dementia Network+, Sustainable Prevention, Innovation and Involvement for Dementia (SPIN-D)

Lead Research Organisation: UNIVERSITY OF EXETER
Department Name: Health and Community Sciences

Abstract

Dementia affects 55 million people worldwide. With no accessible treatment, we need to identify ways to reduce people's risks of dementia and improve their experiences of living with dementia.

People within our network will include individuals living with dementia, carers and family members, researchers, and people working for charities, health and social care services and industries. We have called this network "Sustainable Prevention, Innovation and INvolvement NETwork (SPIINNET)". We will aim to reduce risks and encourage early support in dementia, through innovative research and collaboration.

We will deliver a programme of activities that will use and make connections between the experience, knowledge and resources of people across the network. These activities will include workshops where people can meet to design research projects together, training events, funding innovative ideas, meetings to raise awareness about dementia and prevention, and annual conferences to share our learning. We will work with early-stage researchers and community members, particularly engaging people and communities from diverse communities. We will bring together existing research evidence including "Big Data" resources for prevention of dementia, to be accessible for many different groups of people and to inform the network's activities.

Our network model and focus will address the following objectives:

Involve diverse communities, with different lived experiences, researchers and service providers.
Understand how different experiences and cultures may affect people's actions to prevent dementia.
Exchange knowledge between different groups of people to share understanding of dementia, prevention, resources, priorities and concerns.
Innovate new ways of strengthening society, services and communities to reduce the risk of dementia within populations, and inspire individuals and families to engage in positive actions for change.
Implement and widely evaluate innovations, especially for often-under reached groups, such as minority ethnic groups or people with disabilities.
Sustain innovations by connecting resources, skills and learning through the network's activities.
We will strive to reduce research waste, and to make our network sustainable beyond the first four years of funding.

The above list represents four workstreams and each workstream will have a lead. We will have a Network Governance team with a management group, a Steering Committee and a Group of people with Lived Experience of dementia, including carers. The Lived Experience Group will be involved in decision-making and will help ensure that people who live with dementia are equally involved across the network.

The network will hold a Flexible Fund of money where Network partners can apply for money to develop new research projects. The workshops, training events, meetings and annual conferences will be places for people to exchange knowledge, develop ideas together, to then also apply for funding to develop their ideas further.

This application has been co-written by a group who are passionate about reducing the risk of dementia through innovative, creative, and collaborative research practices. We welcome the opportunity to create transformative change through the network described in this application.

People

ORCID iD

Chris Fox (Principal Investigator)
Judith Phillips (Co-Investigator) orcid http://orcid.org/0000-0001-7912-3510
William Lilley (Co-Investigator) orcid http://orcid.org/0009-0005-1672-4104
Tomasina Oh (Co-Investigator) orcid http://orcid.org/0000-0003-4662-3193
Hannah Wheat (Co-Investigator) orcid http://orcid.org/0000-0003-3211-6254
Martin Orrell (Co-Investigator)
Ruth Eley (Co-Investigator) orcid http://orcid.org/0000-0002-0037-530X
Vanessa Raymont (Co-Investigator) orcid http://orcid.org/0000-0001-8238-4279
Huw Williams (Co-Investigator)
Helen Dawes (Co-Investigator)
Jurgen Grotz (Co-Investigator)
Louise Allan (Co-Investigator) orcid http://orcid.org/0000-0002-8912-4901
Kieren Egan (Co-Investigator) orcid http://orcid.org/0000-0002-1639-4281
Gillian Windle (Co-Investigator) orcid http://orcid.org/0000-0003-0479-1172
Diane Burbidge (Co-Investigator) orcid http://orcid.org/0000-0002-7182-0810
Nicolas Farina (Co-Investigator) orcid http://orcid.org/0000-0002-0635-2547
Kritika Samsi (Co-Investigator)
Orii McDermott (Co-Investigator) orcid http://orcid.org/0000-0003-4685-3490
Kate North (Co-Investigator)
Aimee Spector (Co-Investigator)
Antioneta Medina-Lara (Co-Investigator)
Georgina Charlesworth (Co-Investigator) orcid http://orcid.org/0000-0002-5278-1756
Clare Hammerton (Co-Investigator) orcid http://orcid.org/0000-0001-9199-1791
Heather Yemm (Co-Investigator) orcid http://orcid.org/0000-0003-3046-0852
Jane Cross (Co-Investigator) orcid http://orcid.org/0000-0002-7003-1916
David Llewellyn (Co-Investigator)
Jacqueline Parkes (Co-Investigator)
Shirley Evans (Co-Investigator) orcid http://orcid.org/0000-0001-6158-1433
Katherine Bradbury (Co-Investigator) orcid http://orcid.org/0000-0001-5513-7571
Alexandra Hillman (Co-Investigator) orcid http://orcid.org/0000-0003-1859-1075
Rachael Litherland (Co-Investigator)
Kristin Liabo (Co-Investigator)
Katrina Scior (Co-Investigator)
Fiona Poland (Co-Investigator)

Publications

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