Good Life with Dementia

Research Blog

What makes life with dementia better?

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How the research involved people living with dementia:

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Research team

• Kate Gridley, Research Fellow, University of York, NIHR School for Social Care Research
• Dr Rachel Mann, Research Associate, University of York
• Dr Laura Tucker, Research Associate, University of York
• Dr Beth Casey, Research Associate, University of York
• Dr Mark Wilberforce, Senior Research Fellow, University of York, NIHR School for Social Care Research 

Co-Investigators

• Dr Sam Creavin, Clinical Lecturer in General Practice, University of Bristol
• Dr Chris Clarke, Consultant Clinical Psychologist, Tees, Esk and Wear Valleys NHS Foundation Trust
• Dr Mark Pearson, Reader in Implementation Science, Hull York Medical School
• Mr Mohammed Akhlak Rauf MBE, Founder & Director of Meri Yaadain, CiC
• Damian Murphy, A Director of Innovations in Dementia
• Wendy Mitchell, Expert by experience, University of York: Wendy Mitchell sadly died in February 2024. Wendy’s contribution to research was one of many ways in which she made a positive impact and inspired others. Her wisdom and insights permeate all elements of this research project and we greatly miss her.
• Howard Gordon, Expert by experience, University of York
• Irene Donaldson, Expert by experience, University of York

Background

UK-wide policy states that post-diagnostic support should include peer support by people who share ‘lived experiences’ of dementia to promote social inclusion. However, existing approaches are often unstructured, lacking clear objectives or conceptual foundations. Additionally, existing evidence-based approaches to peer support are often led by a professional or are defined as ‘therapy’; lacking an explicit focus on facilitating peer support, which misses essential elements of co-production and empowerment necessary to ensuring peer-based post-diagnostic approaches are meaningful and inclusive. 

An alternative approach is through peer led formats, in which people with lived experiences actively provide structured support, for example, by acting as ‘tutors’ to newly diagnosed individuals. However, evidence-gaps exist around peer led post-diagnostic support in dementia, especially in the early post-diagnostic phase. We need to know more about underpinning theories, outcomes and implementation, including how this approach is best delivered in different communities, such as those from South Asian communities who can face barriers to accessing services and information.

Purpose of the research

This evaluation will explore how interaction and facilitation in a peer-learning environment affects the outcomes of those involved in the Good Life with Dementia Course.

What we will do:

Work Programme 1: Analysis of secondary data
  
i) Rapid Realist Review of Reviews:  The review will identify existing literature and substantive theory underpinning post-diagnostic peer led support.
ii) Document Analysis: A document analysis will be undertaken on anonymity notes taken from the Good Life with Dementia courses.

Work Programme 2: Primary Data Collection 

i) Observation of two Good Life with Dementia Courses
ii) Post-course Interviews to explore learners’ and tutors’ views on course outcomes and the causal pathways and contextual factors that they believe led to these outcomes.

Work Programme 3: Focus Groups

People with dementia and their carers from the South Asian community will be invited to participate in focus groups to explore how a Good Life with Dementia course could be adapted for this population.

Public involvement

Co-production lies at the heart of this project. Three experts by experience will be supporting project delivery, including data collection, analysis and dissemination.  They are all living with dementia and have been tutors on past iterations of the Good Life course themselves.

Experts by Experience: 

•    Wendy Mitchell
•    Howard Gordon
•    Irene Donaldson

Join us at one of our Knowledge Exchange events

These will be held:

On-line on 15th March 2024- This event has now concluded   

 View the recording here

For more info on this Good Life Webinar, please contact: kate.gridley@york.ac.uk

In York on 22nd March 2024 - This event has now concluded

You can join the Good Life research mailing list to hear about study findings and linked resources by emailing kate.gridley@york.ac.uk.

For Further information (or to take part in the project, please contact): Kate Gridley (kate.gridley@york.ac.uk)