If a loved one with dementia goes missing, a Vulnerable Persons Registry can help bring them home.
After Dr. Stefanie Tan’s grandmother was diagnosed with dementia, her family encouraged her to continue enjoying daily walks around the neighbourhood. Yet they knew that one day, their matriarch might get confused and stray from the immediate area, without being able to remember or communicate her daughter’s name or contact information.
The Tan family’s concerns were well-founded: research shows that 60 percent of people living with dementia will, at some point, wander and become lost. But when someone you care for has Alzheimer’s or a similar cognitive disease, it can be tricky to balance that individual’s freedom while protecting them from potential harm.
A Vulnerable Persons Registry (VPR) is a database intended to help do just that. It contains information that, in the case of dementia, can help facilitate the safe return of an individual who has gone missing.
“Basically, it’s a safety initiative intended to help first responders assist vulnerable individuals at their time of need—either when an individual goes missing or has an incident due to an underlying mental health condition that causes them to behave a certain way,” explains Dr. Tan, Associate Vice President, Research and Programs at MedicAlert Foundation Canada.
The term vulnerable person generally refers to anyone with a condition that could impair their memory and thinking, their ability to communicate and/or manifests in behaviours such as wandering or aggression. While this is an excellent concept, in the real world most VPRs suffer from significant limitations.
Types of VPRs
Usually, a VPR is run by the police, who create a registry and invite community members to participate. Less commonly, a VPR may be administered by a municipality. However, both registries serve the same purpose. There are also variations: some VPRs are solely for people with one specific condition – dementia or autism, for example.
Most registries managed by police or a municipality share major weaknesses, the most significant being jurisdiction. Even when two police services are next door to one another, each only has access to its own database. Someone who wanders is not limited to a particular boundary.
Another other major issue is keeping information current. A lapse in updates could compromise its usefulness. For instance, a photograph submitted two years ago, particularly if an individual has dementia, may not reflect how they look today.
That’s a gap that MedicAlert discovered after being invited by the RCMP and the Alzheimer Society of Canada to take over the National Wandering Registry in 2012. The Registry is similar to a VPR, but specifically for people with dementia. Most information transferred to MedicAlert was significantly out of date. “The idea of the Registry was well intentioned,” notes Dr. Tan, “however, there is a specific skill set needed to run a VPR that maintains health information that is constantly evolving.”
This was the case for the National Wandering Registry prior to MedicAlert’s involvement. Sustainability was a challenge. “A lot of times, a VPR is assigned to someone at the side of their desk, and it’s not their area of expertise,” says Dr. Tan.
A better-equipped registry from the start
MedicAlert has always approached its databases differently, so it made sense to take over Canada’s National Wandering Registry. The expertise and infrastructure necessary to securely store and update such information have been pillars of the organization for over 60 years. In fact, MedicAlert employs a team of internationally trained medical professionals to manage the registry and its data.
“The most important information is curated into a bracelet specifically for first response use, but we also have an in-depth personal health record which goes into much finer detail,” explains Dr. Tan. “This information is disseminated to first responders at the individual’s time of need. We’ve been functioning as a Vulnerable Persons Registry for six decades – just without the official title.”
How Safe & Found works
Since MedicAlert developed the Safe & Found Program, it has protected more than 50,000 people living with dementia. First, either a vulnerable person or one of their family members or care partners signs the individual up for a MedicAlert subscription. A record with crucial information about that individual is then created in MedicAlert’s Subscriber Health Information Database (SHID). This includes details that would help identify the person. From a complete physical description and recent photographs to any specific body marks like a tattoo or a mole, as well as whether the person wandered on previous occasions, and if so, where they were found. No detail is too small. The goal is family reunification. Even basic details you would think are easily accessible to search and rescue officers sometimes are not such as current address, names and phone numbers of emergency contacts.
The record also lists any triggers that might agitate the individual, and tips to make interactions go as smoothly as possible. “For instance, my grandmother had a nickname she went by, so she might not have responded to her legal name,” says Dr. Tan.
A special blue MedicAlert emblem is a visual cue that allows first responders to recognize that someone has Alzheimer’s or dementia and is likely to have memory loss. A police officer who finds that individual can quickly access the information stored in the SHID. “We have the 24/7 emergency hotline, but we’ve also partnered with police so they have direct access to our back end,” explains Dr. Tan. “Through their dispatch, they can view the full record as the call comes in.”
Recently, Edmonton police were searching for a Safe & Found subscriber who’d gone missing, when, three days later, a call came into MedicAlert’s 24/7 hotline. A gentleman who’d been found wandering in Vancouver was quickly identified as the missing Edmonton man, thanks to his MedicAlert ID.
The story exemplifies why Dr. Tan and her colleagues are advocating for the creation of a new national VPR which would allow police to see the same information no matter where they’re located. The current patchwork of VPRs can lead to dangerous, and potentially deadly, delays. Case in point: research indicates that up to half of people with dementia who get lost will suffer injury or death if they are not found within 24 hours. By contrast, 90 percent of people living with dementia who are registered with MedicAlert and lose their way are found with no apparent injuries or compromised health.
Creating a national VPR, however, will require collaboration with governments across the country, which still must happen. “We feel strongly that we need to work together with the government to get the seed funding to launch and build a national registry,” she explains.
Given that only an estimated 10 percent of Canadians living with dementia are currently enrolled in MedicAlert’s program, such a partnership could substantially increase the number of wandering incidents that end with the individual being “Safe and Found.”
