Reflections on conducting research with people who have dementia
We have the privilege of conducting research with a wide range of participants and recently we conducted a couple of rounds of research with people who were awaiting a dementia diagnosis. When running sessions with participants who have different impairments it’s important to adapt the session and how you moderate sessions to cater to the individual participant’s needs. We wanted to share some of the ways we adapted our sessions for people with dementia and what we learnt from running that research.
Someone who has dementia may have any number of symptoms including memory loss, difficulties with thinking, problem-solving or language. They may also experience changes in their mood or behaviour. These symptoms are often severe enough to impact a person’s daily life. These are all things that researchers need to consider when designing and running sessions.
With this in mind, here are our top five tips and considerations for conducting research with people who have dementia.
1. Avoid reflective questions
It’s common in user testing sessions to ask participants to think back on what they just saw and summarise what they liked, disliked and any ideas they have for improvement. However, because this group struggles with memory loss, it can be difficult for them to remember what exactly they saw and interacted with. Even if they can remember parts, it can cause confusion if you ask them to pick out particular aspects they did or did not like. What we found works better is to ask participants more follow-up questions throughout the user journeys you’re testing and ensure that you get all the feedback you need on each aspect of the journey as you go.
2. If you really want to ask some reflective wrap up questions, use prompts
Although it can be difficult to ask people with dementia about specific things they saw a little while ago, it can still be beneficial to ask them about their general impressions of the journey they saw. However, to help keep participants focused and to give them some guidance and help answering these types of reflective questions, it can be useful to use prompts. We used a few of Microsoft’s Product Reaction Cards (only 30, not all 118 of them – that would be overwhelming in itself!) and placed them in front of participants. We then asked them to select five words thatthey felt described their experience of the prototype they saw. We found that this worked well to keep users focused and to help them articulate their experience.
3. Be present and build rapport
When talking to people with dementia about their health, be aware that a dementia diagnosis can be an overwhelming and upsetting thing to talk about. Make sure that you take the time to listen to their experiences and that you are empathetic. It’s also important to make eye contact throughout the session; avoiding solely note-writing, as this can come across as distant or distracted to the participant.
4. Speak slowly
People with dementia may struggle with language and therefore may need a little more time to process what is being said to them. It is therefore worth trying to speak a little slower than you otherwise might to ensure that participants fully understand what you’re saying and the instructions for the task.
5. Provide a printed version of tasks
This is something we do for all our user testing sessions, but it is particularly helpful for users with cognitive impairments, such as dementia. It means that whilst the researcher is reading out the task for the participant to complete, the participant can read along. It helps participants understand the task properly and offers them a reference point if they forget what they’re supposed to be doing during the task.
Tip: It’s always useful to print these out in a larger font so that it’s easy for everyone to read.
Have you conducted research with people with dementia before, or is it something you’re looking to do? We’d love to know how it went and what you learnt.