Caregivers of persons with dementia need anticipatory guidance about the stages of dementia in order to prepare for the caregiving situations they will face. The study objective was to develop a set of pictograms representing the functional stages of dementia for eventual inclusion in a tailored, educational web application. We used a hybrid iterative participatory design process. A graphic designer prepared prototypes in a flat, minimalistic style. These were then culled and refined based on feedback from 16 Hispanic caregivers in six design sessions in English and Spanish. The resulting 19 pictograms representing the functional stages and substages of dementia were acceptable to and easily comprehended by participants. Short, plain-language captions support comprehension and aid discrimination between similar scenarios. Our participants preferred candid depictions of all aspects of dementia, including bodily functions, but acceptability may vary by population so further testing is warranted prior to deployment with a new population.
Keywords: Consumer Health Information; Health Literacy; Patient Participation.