New interactive tool aims to help people living with mild dementia stay safe while maintaining their freedom to go where they like
A unique website launched today offers proactive strategies to reduce the risk that someone living with mild dementia will get lost.
The website features an interactive tool that pinpoints a person’s risk level for getting lost and then provides strategies tailored to that specific risk level. It is geared to people living with mild dementia.
“Persons living with dementia are at a higher risk of getting lost and going missing. This website is a novel, accessible resource that makes people aware of proactive strategies that can help them stay safe, with a focus on balancing safety and independence,” said Dr. Noelannah Neubauer, who led the website’s development with funding from AGE-WELL, Canada’s technology and aging network. Dr. Neubauer is a research assistant in the School of Public Health Sciences at the University of Waterloo (UWaterloo), an occupational therapist, and a founding member of the International Consortium on Dementia and Wayfinding.
The new website was officially released at the AGE-WELL Annual Conference, taking place in Regina, Saskatchewan. The site can be found at: Canadiansafewandering.ca
It is based on the Canadian Guideline for Safe Wandering, created by Dr. Neubauer as part of her PhD work under the supervision of Dr. Lili Liu, a professor and dean of the Faculty of Health at UWaterloo. The Guideline was informed by a literature review and interviews with stakeholders, including persons living with dementia, care partners, health professionals, researchers, Alzheimer’s societies, and police organizations. The Alzheimer Society of Ontario played a key role in the initial development of the Guideline. The Guideline simplified the more than 300 types of strategies for persons with dementia at risk of getting lost.
The new website takes the Guideline to the next level of interactivity. “It offers specific strategies, which are evidence based and are customized to a person’s risk level, all in an easy-to-use platform for people with mild dementia, their care partners and health professionals,” said Dr. Neubauer.
The website tool asks six questions to assess an individual’s personal risk level of getting lost – whether low, medium or high risk. Variables include how often they go out, what time they typically leave the house, and how they usually get around in their community. The website tool then offers strategies customized to the person’s risk level, to mitigate the risk of getting lost. These range from low-tech strategies, such as writing on a piece of paper an address where the person living with dementia is planning on going, to high-tech strategies like GPS devices.
The website also explains safe wandering, the risks of wandering, and why prevention strategies are so important.
Seven persons living with dementia tested the website for a period of three weeks. Their feedback was used to improve the website’s usability.
Christine Thelker was one of the testers. “It is something very important to me as a person with young onset dementia who lives alone, leaving me at great risk. It is vital that I remain independent and have tools that allow me to maintain my autonomy, and allow me to move about my community to interact and stay part of the community. Staying active and part of the community helps keep me well, helps with socialization, and overall mental wellbeing.”
Thelker, a writer and speaker, found the website helpful and user friendly. “It is laid out with great thought so as not to overwhelm the dementia brain. There is just enough information without becoming too much to navigate and cause frustration.”
Adds Dr. Neubauer: “The hope is that people can try these strategies before they begin to think about moving away from their community and into a seniors’ residence or long-term care home.”
The website is currently in English and will be available in French. Its creators, based at UWaterloo’s Aging and Innovation Research Program (AIRP), also want to release it in other languages. Dr. Leah Zhang-Kennedy, an assistant professor at UWaterloo’s Stratford School of Interaction Design and Business, led the user interface design and website development.
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AGE-WELL NCE Inc. is Canada’s Technology and Aging Network. The pan-Canadian network brings together researchers, older adults, caregivers, partner organizations and future leaders to accelerate the delivery of technology-based solutions that make a meaningful difference in the lives of Canadians. AGE-WELL researchers are producing technologies, services, policies and practices that improve quality of life for older adults and caregivers, and generate social and economic benefits for Canada. AGE-WELL is funded through the federal Networks of Centres of Excellence program. www.agewell-nce.ca
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