What are the communication guidelines for people with dementia and their carers on the internet and are they evidence based? A systematic review.

Abstract

Introduction: Communication difficulties of people with dementia can negatively impact well-being of them and their carers. There are evidence-based and clinically recommended strategies that can be used to support people with dementia which they are more likely to access on websites than via academic literature. We aimed to search the internet for communication advice for people with dementia and their carers, describe the strategies and compare these to the evidence-base.Methods: After a systematic search of websites offering communication advice to people with dementia and their carers, we described the strategies there, used reflexive thematic analysis to identify the rationale for recommended strategies and compared the strategies to the evidence base. We included websites aimed at people with dementia and their carers published by dementia-related health and social care, or third sector organisations. We compared strategies to those in published systematic reviews and practice guidance from UK health and social care agencies.Results: Our review identified 39 eligible websites, containing 164 individual strategies. These were grouped into 26 strategy types, with nine latent themes developed. These were supporting communication strengths, valuing the interaction, prioritising needs, providing emotional safety, working together, adapting communication for the situation, developing carer communication skills, knowing the individual and focusing on broader meaning.Conclusion: Our review highlights the need for flexible approaches to supporting communication for people with dementia which consider the individual's needs and preferences, the context of the interaction, and the priority in that moment. We identify the inherent challenges for carers in trying to interpret advice for their own needs.