This study aims to develop an Innovation Hub to improve health and care services for people living with dementia and other long term conditions. We will create a community that includes people with lived experience, representatives from health and care organisations, charities alongside researchers from health care, engineering and mathematical sciences.
Background
People living with multiple long-term conditions report numerous challenges accessing the care and treatment that can help them live as well as possible with their conditions. When one of these conditions includes dementia, the challenges are even greater. Conversations with people with lived experience of dementia and other long-term conditions highlighted:
1) the challenge of managing multiple appointments, medications and the work involved to keep well
2) that services were not set up to accommodate involvement from family carers or other key supporters
3) that concerns for one condition could be overlooked when there was a focus on a person’s primary condition
To address these concerns, Dr Melanie Handley and Professor Claire Goodman (University of Hertfordshire) and Professor Reinhold Scherer (University of Essex) are leading a team of researchers, representatives from health and care organisations, experts by experience, charities and other organisations to develop an Innovation Hub.
What we learn will be used to build mathematical models that can predict outcomes of changes across a variety of personal and service contexts. This will include: the different needs people have, how their conditions affect them, how services are organised and the differences in access to local resources.
Project Aims
To develop an Innovation Hub to explore improvements for how people living with dementia and other long-term conditions and their family supporter for navigating care to live as well as possible. We will explore what needs to change, how change might be achieved and what those changes might mean for different people.
Project Activity
Over 18 months we will:
- Use a research approach called Realist Review to identify and explain the challenges people face when accessing services. This will involve reviewing existing evidence and interviewing people using and working in the health and care services.
- Consider how services work in three areas of the country and explore what could change to improve patient and carer outcomes. In small workshops we will involve people with lived and with professional experience of multiple long-term conditions including dementia we will:
- build a shared understanding of the goals for working together,
- agree what a good experience of using a service might look like,
- define the outcomes that are meaningful to measure change. People in these workshops will contribute to the focus of future research.
- Build simulation models that can make mathematical calculations for expected outcomes across a variety of personal and service contexts. This will include, the different needs people have by how their conditions affect them, how services are organised and the different local resources.
Who is Involved?
- Principal Investigator: Dr Melanie Handley, University of Hertfordshire
- Professor Claire Goodman, University of Hertfordshire
- Professor Reinhold Scherer, University of Essex
- Dr Greg Windle, University of Hertfordshire
- Dr Elspeth Mathie, University of Hertfordshire
- Dr Amit Pujari, University of Hertfordshire
- Dr Reda Lebcirv, University of Hertfordshire
- Dr Jenni Lynch, University of Hertfordshire
- Professor Claire Surr, Leeds Beckett University
- Dr Ben Underwood, University of Cambridge
- Dr Karen Harrison-Dening, Dementia UK
- Steve Milton, Innovations in Dementia
Contact
Mel Handley, m.j.handley@herts.ac.uk
