Tips for dementia-friendly surveys

We identified these tips from desktop research, our survey of  30 people with dementia and carers, feedback from members of Horsham Rusty Brains group, and review of the resulting draft list by 12 more people with dementia.

They included:

• 7 members of the Open Minds (Men's) Group in Peterborough
• a person who organises peer support activities in Nottingham
• a member of the 3 Nations Dementia Working Group in Manchester
• people in Somerset, Manchester and London.

Pilot your survey - ask people with dementia.

Be prepared for feedback to be really helpful, well-intentioned and very frank (which is great to help you identify how and why to make changes).

• 'People will want to give their best for you.’

Tell people what changes you have made, or are looking to make, based on their feedback.

• ‘Definitely agree – not just left in limbo wondering am I or aren’t I actually helping?’
• 'Let us know any feedback at the next meeting, make us feel useful and that we’re contributing’. 

Include an introduction: the survey's purpose and how you will use responses.

This ensures that you get informed consent.

• ‘The introduction is very important. Without that you can’t give the most reasonable information and it makes it a waste of time if you don’t know where it’s going.’

Avoid making questions compulsory.

• ‘It’s important you can choose which questions to answer - as you can get frustrated so easily if you can’t answer a question and don’t think you’re answering the way people want the questions answered.’  

Offer people the opportunity to answer "I don't know".

• ‘AGREE! AGREE! AGREE! People may be unable to answer because they can’t remember or, it may be too personal. If they’ve just realised they’re not good at recalling things, it’s upsetting - and good to be able to say ‘I don’t know’.’
• 'Strongly agree. Obvious.'

Write your survey in clear and simple language.

Avoid using the passive voice. Where appropriate use accessible formats, such as Large Print and Easy Read.

Keep your survey short.

• 'Keep them to the point, don’t waffle, keep them short.'

• ‘Sometimes taking a break is difficult because you can forget to go back to it. You have to give yourself a memory aid to know to go back. A shorter survey is good as it avoids this.’

• 'Expanding surveys?! Forget it! I'd give up if that happened to me.'

• 'The survey gets longer depending on what answers I give? Oh god no! I have to find the right time. I have such a short attention span. I'd panic or give up if that happened to me and I'd decided I could do just a short survey.'

Aim for no more than 3 answer options for each question

For example choose 'agree, disagree or don't know'. People with dementia may not remember the first part of long sentences or paragraphs.

• ‘AGREED!!!! Yes please.’
• ‘short and uncomplicated, with no jargon’

Offer help, for example to give responses by phone. 

• 'Let me do what I can, while I can - involve me'
• 'I can read it but I can't multi-task any more to use the computer to type my responses.'
• 'I can tell you what I want to write, but I can't write now.'
• 'Sometimes you might start the questionnaire confident but half way down you get bogged down and that’s when you need support, especially on long ones.’

Allow plenty of time to complete the survey.  

• ‘Very much agree – I hate being timed out [on digital forms] – it’s frustrating – it’s awful.’

Survey a person with dementia with or without their carer? Decide.

A carer might be able to add additional insight to survey responses, but including them risks misrepresenting or overshadowing the person with dementia’s perspective.

• ‘You need to have two parts to the survey so you can work out where the person with dementia is really at. I’ve done some where I’ve answered it one way and she’s answered it another. She’s being over-protective.’

Consider having surveys in print, not just online.

• 'only want print form – NOT ONLINE.'