Feasibility study of a post-diagnostic peer-led dementia course: Addressing uncertainties for a randomised controlled trial of the Good Life course

Research team

• Kate Gridley, University of York
• Dr Laura Tucker, University of York 
• Dr Mark Wilberforce, University of York
• Dr Phillip Whitehead, University of York
• Mandy Willcox, University of York

Co-Investigators

• Dr Sam Creavin, Clinical Lecturer in General Practice, University of Bristol (NIHR SPCR)
• Professor Claudia Cooper, Professor of Psychological Medicine and Centre Lead, Queen Mary University of London (NIHR SPCR)
• Dr Chris Clarke, Consultant Clinical Psychologist, Tees, Esk and Wear Valleys NHS Foundation Trust
• Damian Murphy, Director, Innovations in Dementia (IiD), Community Interest Company

Public contributors:

• Irene Donaldson, Expert by Experience (current Good Life peer-tutor living with dementia)
• Howard Gordon, Expert by Experience (previous Good Life peer-learner living with dementia)

Background: People often feel unsupported by services after being diagnosed with dementia. Many worry about the future but are unsure where to turn for help.

The Good Life with Dementia course: This is a community-based course co-produced by people living with dementia to help other people with dementia by sharing experiences and resources. Our previous Good Life research found Good Life could help people face the challenges dementia presents. We also explored how it might help people from different cultures, by talking to people affected by dementia in South Asian communities. 

A Good Life with Dementia trial: The long-term aim is to evaluate the effectiveness of the Good Life approach via a randomised controlled trial (RCT). Following Medical Research Guidance on the evaluation of complex interventions, once an intervention is selected and developed the next stage is to assess feasibility.

Aims of the feasibility study: Our feasibility study will address the feasibility of both delivering the intervention in different contexts, and of evaluating this. Assessment of feasibility is necessary before a decision can be made about progression to a full trial.

The questions we will explore include:

• Will people newly diagnosed with dementia join a study of the Good Life approach?
• Can we consistently collect information from them at three time-points?
• Are we asking the right questions to understand how the course affects people?
• Can we meet the different needs of people from White British and South Asian communities?

To answer these questions, our feasibility study has three parts:

1. Collaboratively develop a manual and training plan for Good Life facilitators.  This will help make sure the course is delivered in the same way everywhere.
2. At the same time, work with partners to set up our feasibility trial (to find out what we need to know for a full trial).  
3. We will then run the course in three community settings, including one specifically for South Asian people, to answer our questions about how a full trial could work.

Working with people with lived experience: Our team includes two people who are living with dementia and have personal experience of the Good Life course. We also work closely with South Asian community groups affected by dementia and will set up an advisory network of practitioners and people with lived experience with a dedicated South Asian sub-group, to help us to design culturally appropriate research documents and processes. 

Using the research: This research will provide knowledge needed to plan a full trial of the Good Life with Dementia course as well as resources to help other groups to run the course. We will work with our extensive networks of stakeholders and members of our strategic advisory group to ensure the learning is used to improve dementia support for all.