An interactive guideline to mitigate the risks associated with getting lost among persons living with dementia

Abstract

Purpose: The prevalence of lost persons living with dementia is increasing (Neubauer, Miguel-Cruz, Liu, 2021). Few resources exist to provide proactive strategies that mitigate the risks associated with getting lost. Existing resources are difficult to find, portray wandering negatively, and tend to limit the autonomy and independence of persons living with dementia (Neubauer & Liu, 2021). The purpose of this project was: (1) To develop an interactive online, web-based version of the Canadian Guideline for Safe Wandering for use by persons living with dementia and their care partners; and (2) to assess the validity and usability of the guideline which provides proactive strategies based on risk levels. Method: A participatory design involving virtual focus groups with persons living with dementia informed content and accessibility of the guideline. Professionals and trainees with backgrounds in geriatrics, occupational therapy, recreation therapy, user experience design, graphic design and computer engineering collaboratively developed the interactive guideline. The guideline was then evaluated in a 3-week user study using a before and after study design. We assessed metrics such as the number of individuals using the guidelines, ease of use, motivation to change behaviour (i.e., perceived severity, perceived benefits, cues to action, self-efficacy), and the number and type of proactive strategies being incorporated using the guideline. During the three weeks, participants recorded their experiences using a written or verbal diary. Results: and Discussion: Three Canadian persons living with dementia volunteered to engage with the online interactive guideline. Overall, participants agreed the website was easy to use. It served as a proactive means of educating persons living with dementia on the risks of getting lost. Further, they found the strategies listed on the website to mitigate these risks were helpful. Participants suggested incorporating messages of encouragement, such as quotes from persons living with dementia, into the website experience to motivate users to safeguard their risk of getting lost. The online interactive version of the Canadian Guideline for Safe Wandering is a novel, accessible resource that educates persons living with dementia about their risk of getting lost and the steps they can take to reduce their risk. Future directions include recruiting an additional 8-10 participants, which will help to inform the final iteration of the guideline that will be translated into other languages and disseminated to organizations globally.