Researchers at the University of Strathclyde in Glasgow have developed a working prototype of a digital application that lets people living with dementia answer standardized quality-of-life questions in their own words, through text, on-screen images, or recorded speech. The study, led by David Kernaghan and colleagues and published in the Journal of Participatory Medicine, describes how the app was built over a series of workshops with 25 people in total: nine people living with dementia, four informal carers, and twelve health and social care professionals from NHS and Alzheimer's Scotland settings.
The team based the app's questions on the QoL-AD (Quality of Life in Alzheimer's Disease) questionnaire, a tool clinicians already use, and adapted it into three response formats to suit different levels of literacy and physical ability. Across four iterative workshops the group produced and refined 34 separate prototype versions, using cognitive walkthroughs and think-aloud sessions in which participants tried each design and said out loud what did or did not work, before settling on a single functional prototype. The paper describes this as one of the first studies to evaluate perceptions of electronic patient-reported outcome measures for dementia directly from people living with the condition, alongside carers and clinicians, rather than testing a design built without them.
The people living with dementia and carers who took part were not simply positive about the idea. According to the paper, the Alzheimer's Scotland workshop group's main concern was the reliability and validity of the reworded questions themselves: participants wanted the adapted wording formally validated before it was used to guide care, even though few called for reverting to the original questionnaire text. Clinicians in the separate NHS workshops focused more on how the data would flow into their existing systems and behavior around alerts.