A rapid realist review of co‐producing and co‐facilitating Recovery College Dementia Courses

Background

Recovery Colleges have been established internationally as a service model for people with mental health conditions based on the principles of recovery, co‐production and adult learning. In the UK, NHS mental health services and third sector organisations are widening their use to include post‐diagnostic support for people with dementia. However, guidance for how to adapt the Recovery College model for people with dementia is lacking.

Method

A Rapid Realist Review built an initial programme theory for how and why Recovery College Dementia Courses worked for people who co‐produced and attended them. Using a realist logic of analysis, we synthesised evidence from academic and grey literature. The initial programme theory was refined in four online workshops with people with dementia and staff with experience of recovery colleges.

Result

Staff committed to recovery‐focused approaches recognised co‐producing Recovery College Dementia Courses as an opportunity to work within their core values. Course development is often additional to staff’s caseload, therefore time for this needed to be agreed with managers who recognised the potential for courses to foster person‐centred service cultures. Staff attendance to courses altered perceptions of service‐user/service‐provider relationships. Through co‐facilitated courses, people with dementia shared their experiences of living with the condition, giving staff the opportunity to understand people’s challenges and strengths beyond a set of clinical presentations.

Registration and attendance depended on staff knowing about courses and understanding who might benefit. Additionally, receiving a diagnosis of dementia was recognised as overwhelming and follow‐up contact with services varied. This meant there was no consistent approach for who received information about courses or when. Discussion with someone knowledgeable about the course was considered important to overcome internalised negative perceptions about dementia and feelings of hopelessness. These responses to diagnosis were major barriers to attendance and were experiences that Recovery College Dementia Courses sought to tackle.

Conclusion

Improving access to post‐diagnosis support for people with dementia and those who support them is important for helping people live well with their diagnosis. This initial programme theory provides the foundation for a primary study of Recovery College Dementia Courses to inform guidelines of international relevance.