Methods and approaches to facilitate inclusion of the views, perspectives and preferences of people with moderate-to-severe dementia in research: a mixed-methods systematic review

Abstract

The perspectives of people with moderate-to-severe dementia are rarely directly elicited in research studies.

Objectives: This systematic review will explore methods and approaches for including the perspectives and preferences of people with moderate-to-severe dementia in research.

Methods: AgeLine, CINAHL, Embase, PsycINFO, PubMed, Social Policy and Practice and Web of Science were searched until June 16 2022. Study quality was assessed using the 16-item Quality Assessment Tool. We described specific communication tools, reviewed the evidence for their effectiveness and considered their strengths and limitations. We examined the more general communication skills and techniques applied to support the use of these tools using thematic synthesis. The review protocol was registered with PROSPERO CRD42019130386 and the review was conducted and reported according to PRISMA guidelines.

Results: Seven studies reported in 11 publications were included. In these studies five specific communication tools were used: Talking Mats, Augmentative and Alternative Communication Flexiboard, generic photographs in combination with a preference placement board, consultation ballot and personalised communication prescriptions. Each tool identified had advantages and disadvantages depending on dementia severity, verbal or physical ability, expense, researcher training requirements and ease of use. Thematic synthesis identified five general approaches to optimising communication that were employed to support use of the tools: ensuring conversations are individual and person-centred, managing external influences, engaging others, creating structure and facilitation skills.

Conclusion: All tools had some utility and there was no clear evidence to support the recommendation of any one specific tool; therefore, researchers are advised to select the tool most appropriate to their context.

Implications for Practice: The findings offer general guidance for researchers and practitioners on how to facilitate communication with people with moderate-to-severe dementia.