Online peer support: views and experiences of people with young onset dementia (YOD)

Abstract

Objectives This study explores (1) which platforms people with YOD use for online peer support, (2) reasons for using or not using online peer support, and (3) how to optimise potential benefits and accessibility. Methods A mixed-methods online survey was conducted including fixed-choice and open questions. Participants were people with YOD recruited through dementia organisations, Join Dementia Research and the NHS using convenience sampling. Fixed-choice questions were analysed with Chi-square test of significance and free-text responses with thematic analysis. Results A total of 69 completed surveys were analysed. Zoom was most popular for online peer support, followed by Facebook and Twitter. Positives included sharing social support, joining from home, and the option to choose a preferred platform. However, it can be difficult to follow the conversation or understand others. Many were unaware about online peer support and some felt uncomfortable talking to strangers online. To improve access and benefits of online peer support organisations and healthcare professionals should advertise and signpost more and groups should have a clear description. Conclusion Online platforms facilitate social support and make peer support accessible to those who do not have access to in-person options. Future research and practice should focus on raising awareness about online peer support.