Keeping In Touch Everyday (KITE) project: developing assistive technologies with people with dementia and their carers to promote independence

TLDR

Technology to support independent living for people with dementia is under‑developed, and early attempts such as tracking devices have been deemed unacceptable from practical and ethical standpoints. The study aimed to create acceptable, effective prototype technologies that promote independence for people with dementia through a user‑centered design process involving them and their carers. A three‑stage participatory design was employed, comprising focus groups, workshops, and prototype development meetings, with data collected via recordings and constant comparative analysis. The findings showed that participants desired discreet, flexible devices with two‑way communication and navigation aids, and that involving people with dementia and carers in prototype development is feasible and produces more acceptable solutions, as illustrated by the development of an armband and electronic notepad.

Abstract

Background: The role of technology to facilitate independent living for people with dementia is not fully realized, with initial attempts (e.g. tracking devices) being considered unacceptable from a practical and ethical perspective. The aim of this study is to create acceptable and effective prototype technologies to facilitate independence for people with dementia through a user-centered design process involving them and their carers.Method: The study comprised a three-stage participatory design process: scoping stage (five focus groups, 10 people with dementia and 11 carers); participatory design stage (five workshops, 22 participants) and prototype development stage (four meetings with two people with dementia and one carer). Focus groups and workshops were digitally recorded, fully transcribed and subjected to constant comparative analysis.Results: People with mild to moderate dementia enjoy a variety of activities both on their own and with their families; however, concerns included getting lost, a loss of confidence with curtailment of usual activities, and carer anxiety. Existing technologies (mobile phones) were used intermittently. Participants felt strongly that future devices should be disguised and be integrated easily into their daily routines. Suggested areas for functional improvement included two-way communications, flexibility of function as the illness progresses, and something to "guide" them home when out walking or driving. Attention should also be focused on minimizing the size, weight and visibility of devices to reduce stigmatization.Conclusion: Prototypes for two devices (armband and electronic notepad) were developed. The study showed that involving people with dementia in the process of participatory design is feasible and could lead to devices which are more acceptable and relevant to their needs.