For people with dementia, a behaviour known as critical wandering can quickly lead to devastating consequences. Unable to reorient themselves, these people are at risk of harm from critical injuries to fatalities. A recent project aims to address the risk of people with dementia going missing by first gaining a better understanding of the factors associated with critical wandering and a subsequent missing incident.
“Critical wandering — a term that is being continually revisited because it is controversial and not accepted in some areas such as the U.K. due to associated stigma — is when you are disoriented in time and space,” explains Antonio Miguel-Cruz, an associate professor in the Faculty of Rehabilitation Medicine and U of A lead on the project. “You don’t know where you are, you are disoriented, and as a result you’re not able to find your way home or back to where you started your journey.”
The project, conducted in collaboration with the University of Waterloo, is the first of its kind to examine various Canadian data sets documenting missing incidents due to critical wandering. The insights from this work are critical for developing targeted tools and prevention strategies that can be used by everyone from police and first responders to community members and other organizations that interact with people with dementia.
Researchers found that about 40 per cent of people with dementia will wander or get lost at least once, and nearly 20 per cent will experience repeated incidents. However, according to Miguel-Cruz, “This phenomenon is not very well understood.”
This poor understanding lies in the way relevant data is handled. It’s often unstructured, and documented in PDFs or other unsearchable documents. “It’s not like in other cases in health records where you can search a database and extract organized and structured information to study a problem.” He also says the information is tracked and compartmentalized differently in different organizations and agencies that have little or no common means to share insights and strategies.
To better understand this issue, Miguel-Cruz and his collaborators looked at missing incidents due to critical wandering data from six police departments across Canada, the British Columbia Search and Rescue Association, Indigenous communities in Quebec, the MedicAlert Foundation records and data covering nearly 1.6 million home care client critical wandering incidents sourced from interRAI, a collaborative network of researchers and practitioners.
The amount and variety of data the researchers analyzed allowed them to identify particular characteristics that make a person more likely to critically wander and go missing. For example, the risk is about five times higher in people between 75 and 84 years old. There were also higher risks associated with living in urban centres, living in institutional settings such as a care home or hospital, being male, coming from particular ethnic backgrounds, being unable to speak an official Canadian language (English or French) and having a dementia diagnosis.
Another crucial discovery from the data was the importance of finding the person who is lost as quickly as possible. “We found that when you are lost for more than seven hours, the likelihood of being found with a critical injury increases 2.8 times,” says Miguel-Cruz. “We now have profiles of people that are linked with risks, which can trigger strategies to prevent this.”
Researchers involved with this project have created several resources to disseminate relevant knowledge, including videos and tip sheets to help people better understand dementia and its associated behaviours, a toolkit to manage the risk of getting lost, as well as dementia-friendly resources for first responders.
And though exact statistics depend on the particular data sets used, a better understanding of the issue of dementia wandering as a whole has the potential to improve future outcomes.
“Knowing the numbers is important because it allows relevant organizations and institutions to provide more accurate information about dementia and the risk of going missing,” says Miguel-Cruz.
“And, for police organizations, search and rescue personnel, knowing the numbers and factors that influence this phenomenon will allow them to be better prepared and implement preventative strategies.”
The project was supported by a $2.1-million grant from the Search and Rescue New Initiatives Fund.