Online surveys for people with dementia

Number of people affected by dementia: varies - it may depend on the type of account you have with your online survey provider.

Pros and cons: 

Useful for: people who are willing and able to use internet technology and typing without close supervision.

Downsides and risks: many people with dementia may not use this type of technology or may not be confident to use this type of survey. Some well-intentioned family members or carers may influence responses while helping the person with dementia to complete the survey. Sending a survey to cold contacts might be considered marketing - take care not to breach GDPR by planning carefully who you will send the survey to, and by including appropriate wording enabling people to withdraw consent to be involved, and to reassure that data will not be sold to third parties. 

Cost: depends on the type of account you have with your online survey provider. Using an online survey may be cheaper than using paper-based versions and post. 

Timing: it could be quicker than sending surveys by post and seeking responses by post.  If you are in a large organisation, be considerate of what other surveys people may be receiving, so as not to use up the energy and good will of people you are seeking feedback from. 

Preparation:

Consider what feedback you need to be able to answer your research question. Develop a draft survey and pilot the questions and survey with people living with dementia, ideally with similar skills and abilities as those people you aim to reach through your online survey.  Make any improvements to your survey as a result of this before sharing it more widely. 

Drafting your survey

- Include an introduction explaining the purpose of your survey and what will happen to information. This will enable you to get informed consent by those people who decide to complete it.

- Keep it short (max 5 or 6 questions), without lots of page breaks

- Ensure there are no mandatory questions. 

- Include 'I don't know' as an option along with other response fields.

- packages such as Smart Survey include accessibility options such as smiley faces, audio, descriptive text and imagery

- See our guidance on questions.
 

Analysing your survey

- Depending on your online survey provider account, you may be able to view and download responses in different ways. Quantitative data may be presented in charts. You will still probably need to follow our guidance on analysing qualitative data, action planning and reporting for qualitative data in the survey such as coding free text responses into emergent themes.  

Real-life examples featured in this resource

Co-production for LGBT dementia-awareness: Bring Dementia Out

Mapping the Dementia Diagnosis Journey to improve self-guided support

Shropshire Dementia Action Alliance priorities-setting survey

Turning up the Volume on living with dementia: large scale, national activity