Working with questions and data

If you don't ask, you don't get

To receive answers that will be truly useful for your research, set your questions carefully.

Think about how you will interpret responses to:

• inform designing and delivering your contract/service
• report on the findings, and
• action plan for improvement. 

Include people with dementia from the very beginnging

You'll be able to hone and improve your questions by testing them with people living with dementia before using them widely.​

Communication skills can change with dementia. It can be challenging to find the right words and to avoid jargon, but people with dementia may be able to help you.

For example, when we involved people living with dementia at Peterborough Dementia Resource Centre in developing the first survey for this resource, the word “toolkit” brought to mind a box of DIY tools. They told us this was confusing and made it harder for them to share their thoughts, as they pictured a traditional box filled with spanners, screwdrivers, and hammers – something they felt had little to do with healthcare.

They were also able to suggest ways to simplify other language and highlight terminology that was unfamiliar or would benefit from further explanation. Their input significantly improved the final version of the survey.

Mix it up

Usually, it's a good idea to ask a mix of questions, so that you collect a mix of both quantitative and qualitative data – identifying ‘the what’ and ‘the why’ of people's experiences and giving you strong, reliable and valid findings.

For example, a good survey may include a mix of question types which generate different types of data. An interview, might ask people to score themselves on a scale, as well as including opportunities to share personal stories.