Public Engagement Information for Researchers

6. Communicating with people affected by dementia

Bradford DTC student Paul speaks at a service in Bradford

If you are funded by Alzheimer’s Society, or are a dementia researcher, then it may be that you would like to communicate with people affected by the condition about your research. Here are some general tips to help you to communicate with this audience.

Language

People with dementia often have problems with language, such as struggling to find the right words. They can also find it hard to process and interpret what other people are saying.

Try to make your language as clear as possible and slow down your speech if you are giving a presentation.  Allowing time between sentences may allow people to process the information and follow what you are presenting to them. It may feel like an uncomfortable pause to you but it may help them to keep up with your talk.

However, many people with dementia are still able to understand and process information – there is no need to patronise or use infantilising language, but using simpler words and not overloading your event with too much information will be helpful.

Things to avoid

  • Saying that someone is ‘suffering’ from dementia. Many people with dementia feel that this defines them entirely by their condition. Instead you can say ‘living with’ or ‘affected by’ dementia. Also never refer to people with dementia as ‘demented’, which is a demeaning and outdated term. 
  • Using excessive acronyms (e.g. AD, PwD, Abeta)
  • Using complex names of proteins or chemicals - does the audience really need to know what the protein you are working on is actually called?
  • Using highly scientific terminology if it can be replaced with a simpler alternative (e.g. ‘brain cells’ rather than ‘neurons’, ‘clumps’ or ‘groups’ as opposed to ‘plaques’, ‘brain scans’ instead of ‘PET imaging’). 
  • Words with double meanings – is a ‘mutant’ a change in a gene or that guy with the metal claws? Is a ‘plaque’ something formed by amyloid protein or the blue thing you see on buildings or that thing your dentist tells you off for? 

Presentations

If you are doing a presentation at your event, make sure that the slides are simple and are not overloaded with information or confusing/noisy animations or videos. However, a simple video may be a good way to communicate certain information. 
Make sure there is lots of ‘white space’ on your slide. You can use simple diagrams instead of lots of words where appropriate. 

If possible, props and demonstrations are excellent ways to get your point across without excessive use of PowerPoint. 

Try to keep eye contact as much as possible with your audience and avoid turning away with your back to the audience.

Asking and answering questions

If someone wants to ask a question, they may find it difficult to verbalise exactly what their question is. Try to wait until they have finished speaking before you answer. Try to find clues in their question if possible and check with them if you have understood the question correctly before answering. 

If the individual or group did not understand something then try to get the message across in a different way rather than simply repeating what you said. You can try breaking down complex explanations into smaller parts.

Environment

People with dementia may find being in an unfamiliar environment difficult. Try to choose a venue that is easy to access and has plenty of light and room, but doesn’t have too much clutter or bright things on the walls. People with dementia may also be distressed by loud or unexpected noises, so try to find a venue that doesn’t have lots of other things going on and doesn’t have anything like a fire alarm test scheduled for the same time. 

See our factsheet for more information about communicating with a person with dementia.