Inclusion and ethical considerations for surveys

In all cases

Follow our guidance on how to recruit people affected by dementia and ethical considerations.
 

Specific considerations for surveys

• Confidentiality and data protection

  • Include wording that people's privacy will be protected - their responses anonymised and treated confidentially. Explain that their responses will be anonymised, treated confidentially and not sold on to third parties. 
  • if you do want to use something they say in a way that identifies them, get their permission about doing this. Ask them to provide their contact details so that you can follow up with them about this. 

• Equality, Diversity and Inclusion

  • Be inclusive - offer a choice of formats:  this increases your ability to learn about the experience of a wider range of people, which adds value to the time and effort you are putting in to conducting a survey activity.
     
    • Face to face
      • Where possible offer the option of help to complete your survey. 
      • Some people may feel more able to speak freely, to someone "neutral"  such as another person living with dementia, or a volunteer, rather than a partner/carer they rely on day to day. 
      • some people may like you to use showcards so that they can point to responses rather than have to speak, write or type responses.  
    • Telephone
    • Paper
      • Use simple, clear language, and familiar words 
      • Use visual aids such as photographs (ideally specific, not just generic - for example of the particular hospital café, not just any café) 
      • Keep questions short, use the active voice for verbs
      • avoid compound sentences and double negatives 
      • Many people with dementia experience some difficulties reading text, whether or not this is due to visual impairment. Help people to read your survey by making good use of space on the page, font size at least 14, and using strong colour contrasts between text and background.
      • If using table format, some people with dementia find it helpful to have rows in contrasting colours.
          

Who may be excluded if you use a survey?

People with communication needs not met by how you decide to conduct your survey. For example if you are using a typed or printed format, British Sign Language users, who may not be fluent in English, or may have lost abilities in English as their dementia progresses, may be excluded as sign language is a visual-gestural language so may require video or face-to-face interpretation. 

People who cannot concentrate for very long, unless they can do a small bit at a time.

People with more severe cognitive difficulties may lack the capacity to take part.