Conducting research with people with dementia
16 October 2017

Nicola Stenberg, partner at The Big Window, provides top tips on how to conduct research that involves people with mild-moderate dementia.

At last year's Impact 2017 (MRS annual conference), The Big Window presented a piece of research which included an interview with Wendy Mitchell who talked about living with and blogging about dementia. The presentation won an award for Best Overall Contribution to Conference.

Lisa Edgar, founder of The Big Window, interviewed Wendy about her experiences in dealing with financial services companies. You can watch the interview below.

Here are The Big Window's top tips for conducting research with people with mild-moderate dementia:

1. Gaining Consent

Give very clear information about the purpose of the research that complies with Plain English guides. Only provide essential information and be available to answer questions and give more information if needed. Check this has been understood before going ahead.

2. Choosing methods

Try to use methods that are flexible so that the questions and pace can be adapted to suit the participant. If surveying, aim to use questionnaires that have been validated for use with people with dementia or pilot them first.

3. Location and timing

Conduct interviews in a familiar surrounding with minimal distractions and give participants a choice of when in the day they would like to be interviewed.

4. Questioning style

Begin with very straightforward questions using familiar words. Keep all questions short and avoid using any abstract notions or concepts. Be flexible with the schedule and use stimulus materials, such as photos, to aid communication.

5. Pacing

Allow time for participants to think about each question and respond at a pace that is comfortable for them. Offer regular breaks or conduct the research over different days. Keep the space between interviews fairly short to benefit memory.

You can download the MRS Best Practice Guide on Research Participant Vulnerability.

To find out more about this work you can contact nicola@the-big-window.co.uk