Communication strategies for inclusive PPIE: co-producing an instructional video for researchers, people with dementia and carers

1 October 2024 to 31 March 2026
Project No: 731
Funding round: PPIE

Lead member: University College London

Aims and objectives

We aim to work with people with dementia and carers to co-produce a video. The video will provide guidance on communication strategies to use when involving people with dementia in research, as public contributors.

We will do this by holding workshops to create a visually engaging video, mixing real life with animation. This will be valuable for people with dementia and carers and will support primary care researchers to overcome common difficulties with engaging and retaining people with dementia in public involvement work. It will supplement existing Dementia Engagement and Empowerment Project (DEEP) broad advice on involving people with dementia as members of advisory groups1.

The video will include communication tips such as advice on:

addressing individuals’ communication needs before involvement

supporting relationship building amongst PPIE members and researchers through inclusive, culturally competent, empathic communication

supporting peoples’ understanding and expression, by using multiple communication modes (verbal, written, drawing, gesture, use of images and objects)

balancing the contributions of people with dementia and carers

inclusive use of online meeting tools e.g., Padlet2

Approach

Engagement

In person and remote workshops will involve a diverse group of people with dementia and carers. We will seek to include those from underserved groups (e.g., regarding age, ethnicity, sexuality, and those experiencing social disadvantage), with PPIE experience, to develop the video. Rachael will provide a link to the UK-wide DEEP peer support group network for recruitment, including groups for underserved communities such as the Lesbian, Gay, Bisexual and Transgender (LGBT) group ‘Speak out with dementia.’ We will also engage people through the Young Onset Dementia network.

We will work with the Dementia and Neurodegeneration Policy Research Unit (DeNPRU), to influence national policy on dementia research conduct. DeNPRU aims to address how to conduct research serving all communities, including those with lived experience.

Pre-workshop activities

We will seek UK-wide opinions on effective communication in dementia PPIE, by

hosting a Question-and-Answer session via Innovations in Dementia social media

encouraging support groups to discuss the issue though the DEEP magazine, followed by group leaders feeding back to us. Insights will inform workshop discussions and the video.

Workshops (see costings for detail)

People with dementia will attend workshops separately to carers, to ensure their voices are heard. Contributors will share experiences and generate ideas around PPIE communication practices that people with dementia find helpful/not helpful. Based on discussions, co-applicants will draft video content, and work with a professional designer to produce the video, with all stages refined in workshops. Up to two people with dementia and two carers will feature in the video, speaking to camera.