How do we manage the risks of getting lost among persons with dementia?
Writers: Noelannah Neubauer (Postdoctoral fellow, University of Waterloo) and Busola Adekoya (PhD student, University of Waterloo)
The rates of dementia are on the rise as populations age. More than 747,000 Canadians are living with dementia, with the prevalence expecting to more than double every 5 years. Spatial navigation challenges are common among this population, and this puts them at a high risk of getting lost and going missing (Puthusseryppady et al., 2020). In Canada, there has been a reported increase in the number of cases involving a person living with dementia, attributing to approximately 30-50% of missing persons calls (Neubauer et al., 2021). Search and rescue efforts for this population are costly, and police have reported that missing persons with dementia often continue to “go until they get stuck”, which differs from other vulnerable groups. The consequences of getting lost and going missing vary from minor injuries and death. If not found within 24 hours, up to half will experience serious injury or death raising greater concern over finding this population quickly.
Our team through the Aging and Innovation Research Program at the University of Waterloo have been examining strategies, policies, and recommended practices that can be used to reduce the risks associated with persons living with dementia getting lost and going missing. Due to the complexity of this population, our team has been addressing it from multiple perspectives (i.e., how to reduce the risk before, during and after a missing incident).
Before a missing incident
While we might assume that the use of restrictions, such as locked doors common in long-term care facilities, are good practice for keeping people with dementia safe, missing incidents are still known to happen. In fact, 20% of missing incidents happen in care facilities (Bantry White & Montgomery, 2015). So how can we prevent missing incidents? Our team believes that the use of proactive strategies, such as ID tags and locator devices, could assist. It is important to note however, that one size does not fit all. Therefore, resources such as the Canadian Guideline for Safe Wandering could be used to help people living with dementia and their care partners to find proactive strategies that work best for them. Education among this population, as well as education for first responders also has potential to help reduce the risks The public can develop a better understanding of the risks associated with missing incidents involving people living with dementia, it is our hope that proactive strategies such as those highlighted in the Canadian Guideline for Safe Wandering will be adopted sooner rather than waiting for a missing incident before something is integrated.
Canadian Guideline for Safe Wandering
During missing incidents
When a person living with dementia goes missing, it is important that their families or care partners know that they are not alone. When a loved is missing, this can trigger different reactions and emotions such as panic and feelings of guilt in families. Staff in long-term care facilities may also be concerned about liability in addition to the well-being of the missing person. Nevertheless, it is recommended that first responders be contacted immediately when a vulnerable older adult is missing. Families need support, including mental health support from mental health professionals, first responders, and the community during a missing incident. Because missing persons with dementia is a community safety issue, local communities have a role to play in locating missing persons. Although not yet common in Canada, community alert systems which involve the use of social media or media outlets by police services can be activated to alert the public of the missing person. Community alert systems have the potential of reducing recovery time and minimizing the trauma associated with going missing for families, first responders, and search and rescue teams. When involving community members in locating a missing person with dementia and supporting families, there should be a clear direction for them on how to help and what to do if they recognize the missing person. Particularly, there should be safety measures in place for volunteers involved in the search for the missing person.
After missing incidents
When a missing person with dementia is found, a return home interview could be done by the police or health professionals to understand why the person went missing, their experience while missing and to connect the client with community support services. Also, support for the families of the person living with dementia should continue after a missing incident. Whether the missing person is found alive or deceased, or if still missing, families and persons with dementia should be connected with local Alzheimer societies or organizations for seniors in their communities and resources. Families may have concerns about repeat incidents or unanswered questions about what might have happened to their loved ones and the reasons for going missing. Connecting families and people living with dementia with local resources such as the Finding Your Way program and other families with similar experiences might help in addressing some of their concerns.
Use multiple strategies to reduce the risk of going missing
There is a need for the use of multiple strategies such as community alert systems, return home interviews, and proactive strategies such as those highlighted in the Canadian Guideline for Safe Wandering to reduce the risk of persons living with dementia going missing and exposure to harm if they go missing.
There is a need for public education on understanding dementia and associated risk of going missing. It is important that we understand that although people living with dementia are at risk of getting lost and going missing, not all of them will go missing. Also, first responders, search and rescue team, and health professionals should be adequately trained on how to recognize, communicate, and respond to people living with dementia, including missing persons with dementia.
Writers: Noelannah Neubauer (Postdoctoral fellow, University of Waterloo) & Busola Adekoya (PhD student, University of Waterloo)