Understanding the Role of 'Peer Tutors' in Post-Diagnostic Support for People with Dementia: A Realist Process Evaluation of the Good Life with Dementia Course:

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 involvementCo-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

For Further information (or to take part in the project, please contact): Kate Gridley ([email protected])