A scoping review of outcome measures for people living with dementia and family supporters to evaluate Recovery College dementia courses

TL;DR

This paper reviews outcome measures for evaluating dementia recovery courses, highlighting the need for better tools to assess personal recovery concepts like hope and empowerment.

Contribution

The study identifies a gap in validated outcome measures for Recovery College dementia courses and proposes the need for new or adapted evaluation tools.

Findings

Fourteen instruments related to hope, resilience, and empowerment were identified for evaluation.

Stakeholders emphasized the importance of domains like empowerment and resilience in dementia recovery.

No single measure fully captures the outcomes of Recovery College dementia courses.

Abstract

Recovery Colleges (RC/RCs) aim to promote personal recovery through co-produced 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 the potential outcome measures for evaluating the impact of RC dementia courses.

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.

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 the concepts of the RC dementia course.

This study contributes to the limited literature on instruments for the 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.

Figures