A Scoping Review of Outcome Measures for People Living with Dementia and Family Supporters to Evaluate Recovery College Dementia Courses

Abstract

Introduction: Recovery Colleges (RC/RCs) aim to promote personal recovery through coproduced courses, grounded in the CHIME (Connectedness, Hope, Identity, Meaning, Empowerment) framework. The DiSCOVERY research programme noted that RC dementia courses may offer a person-centred approach to post-diagnostic dementia care. However, the lack of validated outcome measures for this context presents a challenge in evaluating RCs effectiveness. This scoping review examines potential outcome measures for evaluating the impact of RC dementia courses.
Methods: The review followed the Arksey and O'Malley framework, searching for eligible papers across six databases related to dementia and the CHIME strengths-based approach. Instruments relating to personal recovery and positive psychology for people with dementia or their family supporters were included. Measures of cognition, clinical symptoms or 'negative constructs' (e.g. burden) were excluded. DiSCOVERY stakeholder groups (people with dementia and clinicians) met to collaboratively identify meaningful domains and relevant measures.
Results: Fourteen instruments relating to hope, resilience, self-efficacy, empowerment and coping were identified. Stakeholders of people living with dementia endorsed domains of empowerment, resilience and hope. No single instrument captured the range of outcomes that underlie concepts of RC dementia course.
Discussion: This study contributes to the limited literature on instruments for evaluation of concepts underlying RC dementia courses. Findings suggest a need for adaptation and further validation of existing measures, to address responsiveness, interpretability and the inclusion of domains related to recovery. Future research on recovery in the context of dementia should involve developing or adapting new measures, conducting feasibility studies, and exploring cultural sensitivity for diverse populations.