People living with dementia are at risk of getting lost, and go missing every day in Canada. For example, in July, a person living with dementia went missing and was found by the police under a highway bridge more than 24 hours after he was last seen.
But for some people, the outcome might be different. They might never return home, or in some cases never be found.
This is a growing problem. Today, over 55 million people live with dementia worldwide, and this number is projected to triple by 2050. Recent research reported that the prevalence of missing person calls involving an individual with dementia has increased by between 10 and 50 per cent across all Ontario regions over the last five years.
The risk of getting lost differs among people living with dementia based on their individual risk factors. For example, some individuals may have reduced processing of pain and thermoregulation, which means they don’t feel the cold or heat. That increases the likelihood of adverse outcomes when the person goes missing.
Prevention strategies
Prevention is fundamental and has the potential to save lives and decrease the risk of injuries for persons living with dementia. For example, Alzheimer Scotland developed a missing person app called Purple Alert to support the safety and well-being of people living with dementia. If someone with dementia goes missing in the area, the app sends an alert to community citizens who have opted in.
In Canada, data on missing older adults living with dementia are sparse, and information on reported incidents typically comes from news and media reports. Japan is the only country we know of that keeps annual statistics regarding the number of cases of missing adults with dementia. In 2021, 17,636 persons living with dementia went missing in Japan.
It is clear that as a country, Canada needs better approaches to manage and prevent missing incidents involving people living with dementia. For example, prevention strategies could include:
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Specialized training of first responders to identify and intervene when they see a missing person with dementia.
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Prevention measures at home and in the community. This may include providing safe common areas at home such as a fenced patio, labelling doors to provide a reminder of what each room is for, having a recent photo of the individual, and becoming familiar with the neighbourhood, including likely places a person might wander to and any hazards such as ponds and busy roads.
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Technology to support persons living with dementia and their caregivers. For example, tools to assess individual risk for going missing and getting lost.
Sharing data individual risk factors
Finally, Canada needs a national strategy for collecting data on incidents of missing people living with dementia. This could optimize time and resources spent on police and search and rescue efforts, and enhance the chances of saving the lives of those who go missing.
The integration of multiple data sources such as health care, social programs, police and other first responders, and volunteer search and rescue organizations is key to sustain preventive efforts and proactively identify risk in the community. Currently, databases on missing incidents involving people living with dementia are managed in silos.
Researchers at the University of Waterloo are leading an initiative to enhance search and rescue capabilities for people living with dementia. This project includes engagement with multiple partners across Canada, such as police and community organizations, search and rescue, and people living with dementia. The project includes collaboration with First Nations communities and first responders, such as firefighters, paramedics and peacekeepers, embedded in these communities.
The need for these resources is growing. By 2050, more than 1.7 million Canadians are expected to be living with dementia, with an average of 685 individuals being diagnosed each day. With an increasing number of people living with dementia worldwide and in Canada, it’s crucial to find ways to promote community awareness and prevent people with dementia from getting lost.
Hector Perez has received funding from AGE-WELL NCE and currently receives funding from the Games Institute at the University of Waterloo.
Lili Liu receives funding from Public Safety Canada, AGE-WELL NCE, and University of Waterloo Games Institute.
