People Living With Dementia and Their Families as Educators for Social Justice

Abstract

Background

It is increasingly recognised that dementia education and training should include the direct voices of Experts by Experience (people living with dementia and their families). Good practice in facilitating teaching roles for people living with dementia needs to be identified to maximise inclusion and promote social justice.

Objective

This study aims to discuss the co-creation of a suite of learning modules on dementia, whose predetermined content was consistent with the three tiers of the UK Dementia Training Standards (DTS), which include filmed interviews with people living with dementia and family members.

Design

Experts by Experience advised on content and took part in filmed interviews contributing to the development of 14 interactive learning modules based on the DTS curriculum. The process was evaluated using (1) participant and facilitator reflection on the film-making process and (2) independent researcher analysis of the films' content.

Results

Seven people living with dementia and 10 family members took part. Four key points are identified regarding good practice in the co-creation of film-based learning materials with people living with dementia and their families. Five key themes are identified from the films' content, highlighting Experts by Experience spontaneous reference to experiences of perceived injustice related to their diagnosis, independently of the intended content of the module.

Conclusion

The active involvement of people living with dementia and their families in practitioner and professional education requires us to pay close attention to what they say. Learning materials should be Expert by Experience-led rather than curriculum-led.

Patient or Public Contribution

People living with dementia and their families were involved in the design, conduct and evaluation of the study and in the preparation of the manuscript.