SUNshiners wanted to explore the invisibility of dementia, and the pros and cons of letting others know about their diagnoses. They were interested to find out (a) what the public knew about dementia; (b) what they thought about the invisibility of dementia; (c) why they might want to know if people have dementia.
The group created a questionnaire – an online version and in paper copy. Some of the questions were closed, and others were open ended. The online version was circulated via friends and colleagues. The paper version was left in shops, cafes and groups with a stamped addressed envelope.
The group were astounded to receive 347 responses to their survey! An academic researcher helped the group to think about the best ways to sort out these results and to make categories. The majority of people filling in the survey thought it was a negative that you can’t always see dementia, because then others won’t recognise symptoms and understand experience. Most people thought that people with dementia should retain the right to vote and also that it would be helpful to know if someone had dementia on initial meeting.