Living with Motor Neurone Disease (MND) can make communication difficult. These challenges affect not only the person with MND but also family, friends, and health & social care professionals.
Changes in speech, language, and thinking can make conversations harder, impact relationships, and even affect important decisions.
What is Better Conversations?
Better Conversations is a video-based resource that helps people cope with changes in communication. It’s built on a simple idea: conversations always involve at least two people, and what they do together makes communication work.
Why did we develop Better Conversations with MND?
For over 20 years, researchers at University College London have studied how conditions like MND, Parkinson’s, stroke and dementia, affect everyday conversations. The Better Conversations Lab is a unique research group dedicated to making real-life conversations easier.
We developed Better Conversations with MND because we know that talking about communication change can be hard. Even communication isn’t an easy thing to explain and technologies, such as speech generating devices (‘communication aids’) are only one part of the communication story. We wanted to make videos with real people in everyday conversation – to show how communication works in reality and that there is no right or wrong way of doing conversation – it’s whatever works for you.
Why does conversation support matter?
Supporting people with MND to communicate is essential—but communication is a two-way process. It’s not just about devices or tools; it’s about how people interact. That’s why support should include both the person with MND and those they talk with—family, friends, and professionals.
How does it work?
We use real conversation examples to understand what helps, what causes breakdowns, and how people fix problems. Our approach uses different techniques to:
- raise awareness of good communication habits
- identify unique challenges for each person
- set goals and use strategies for better conversations
The Better Conversations with Motor Neurone Disease web pages focuses on raising awareness of communication. More specific conversation therapy approaches to support people living with MND are underway within the UCL Better Conversations Lab.
How should it be used?
Better Conversations with MND can be used by anyone to help their understanding of communication in MND. It is not here to tell people what to do or how to communicate. You may just want to look at the videos and think about your own communication.
If you, or someone you are close to, are living with MND, you might want to talk to a speech and language therapist about how to best support your everyday conversations. If you are a health or social care professional, you might want to consider the role of communication partner training alongside other interventions such as AAC support.
How was Better Conversations with MND developed?
We created Better Conversations with MND by listening to people living with MND, their families, and speech and language therapists. After making the videos and designing the website, we asked for feedback to improve it. Now, we have a completed website that we hope will be helpful.
What if you want to find out more?
If you want to find out more about Better Conversations with MND then please feel free to contact Professor Steven Bloch at s.bloch@ucl.ac.uk