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

• Research type

  Research Study

• Full title

  Modelling the Experience of living with Dementia And Long-term conditions

• IRAS ID

  330178

• Contact name

  Melanie Handely

• Contact email

  m.j.handley@herts.ac.uk

• Sponsor organisation

  University of Hertfordshire

• Duration of Study in the UK

  1 years, 5 months, 31 days

• Research summary

  People living with multiple long-term conditions including dementia (MLTCiD) report numerous challenges accessing the care and treatment that can help them live as well as possible with their conditions including:
  1) managing multiple appointments, medications and the work involved to keep well
  2) services not set up to accommodate involvement from family carers or other key supporters
  3) concerns for one condition being overlooked when there was a focus on a person’s primary condition

  To address these concerns, a team of researchers will work with stakeholders to develop an Innovation Hub to understand peoples' experiences of using health and care services and help them to have a say in how services can better meet their needs. We will work with people who make decisions for how health and care services operate to find out the evidence they need and how they would use that evidence to make judgements for changes to services.

  Over 18 months we will:
  1) Undertake a Realist Review to identify and explain the challenges people face when accessing services by reviewing existing evidence and interviewing people using and working in the health and care services (30 interviews).
  2) Consider how services work in three areas of the country and explore what could change to improve patient and carer outcomes. Small workshops with people with lived and professional experience of MLTCiD (24 people overall) 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
  • contribute to the focus of future research.
  3) Build simulation models to calculate expected outcomes across personal and service contexts, including the different needs people have by how their conditions affect them, how services are organised and the different local resources.

• REC name

  London - Bromley Research Ethics Committee

• REC reference

  23/LO/0829

• Date of REC Opinion

  30 Oct 2023

• REC opinion

  Further Information Favourable Opinion