MEDAL: Modelling the Experience of Dementia and Long-term conditions

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) led a team of researchers, representatives from health and care organisations, experts by experience, charities and other organisations to develop an Innovation Hub.

Project Aims

• 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 explored what needs to change, how change might be achieved and what those changes might mean for different people.

Project Activity

Over 18 months we:

• Used 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.
• Considered how services work in three areas of the country and explore what could change to improve patient and carer outcomes. In small workshops we involved people with lived and with professional experience of multiple long-term conditions including dementia we will:

1. built a shared understanding of the goals for working together,
2. agreed what a good experience of using a service might look like,
3. defined the outcomes that are meaningful to measure change. People in these workshops will contribute to the focus of future research.

• Built simulation models that can make mathematical calculations for expected outcomes across a variety of personal and service contexts. This included, the different needs people have by how their conditions affect them, how services are organised and the different local resources.

Impacts and Outputs

This study informed development of two proof of concept advanced mathematical models. One used agent-based modelling to represent the pathway to dementia diagnosis from referral to memory clinic assessment. This model drew on data from the CRATE database and was developed with clinical and lived experience experts to provide real world insights that could inform service decision making. Calculations indicated that reduced administration time would mean memory services could increase their capacity and reduce waiting lists. As a result, one service is trialling Heidi AI medical scribe tools to improve the efficiency of its service. The system dynamics model mapped out routes into and through services from diagnosis of dementia to death. This model includes possible encounters with different sectors (NHS secondary, primary, mental health and community care, social care, voluntary sector). This model is still under development.

Papers and resources

Read the paper titled, 'Living with dementia and other long-term conditions: what works for patient-caregiver dyads? A realist review'

Who was 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