For many people caring for someone living with dementia, few things are more frightening than the prospect of waking up in the middle of the night or looking away for even a few minutes to realize their loved one has left the house with no capacity to find the route home. News stories about people with Alzheimer’s disease and other forms of dementia becoming lost in the woods or roaming in the cold without proper clothing exacerbate this fear, causing incredible stress for both those living with dementia and the people who care for them.
The phenomenon of people with dementia finding themselves lost and disoriented is commonly referred to as “wandering,” though there is some controversy around the term and the negative connotations that come with it, since walking and exploration are not dangerous for those with dementia diagnoses in every circumstance. Even so, it’s commonly estimated that as many as 60 percent of people with dementia will leave their home or care facility and become confused and unsure of their location during the course of the disease. Sometimes a neighbour or good Samaritan will be able to guide a lost person home without incident, but occasionally authorities need to be alerted to facilitate a search.
Balancing autonomy with safety
Many experts advise that people with dementia retain as much autonomy as possible so that they can maintain a sense of dignity and enjoy a high quality of life, while still keeping an eye on safety. People living with dementia who wander may simply want to walk and then become confused. They may be looking for something specific or they may want to vent some frustration or anger. Whatever triggers them to leave, cognitive impairment – even in the earlier stages of the disease – can lead to dangerous and even life-threatening situations when people find themselves confused and without any identification.
“There are positive or beneficial effects of walking that might be important for people living with dementia,” says Dr. Anthony Levinson, a psychiatrist and professor at McMaster University who is also one of the founders of IGeriCare, an online resource for those caring for people with dementia. “But it can be very stressful for the care partner. Symptoms like paranoid delusions or hallucinations, coupled with some visual and spatial impairments, might lead some people to become worried or suspicious of those in the care environment, or become disoriented and leave, and not be able to find their way back.”
How data can help
To fully understand how to mitigate the risks of wandering without compromising quality of life, it’s important to examine the data surrounding those with dementia who wander as well as those who do not. MedicAlert is in the unique position of having the single-largest database about people living with dementia in the country. This unique repository of information is collected through the organization’s Safe & Found program, which also manages Canada’s National Wandering Registry. With more than 50,000 people protected by the program since it launched in 2012, MedicAlert has data that paints an accurate picture of the reality of dementia-related wandering.
Recent analysis of MedicAlert’s Alzheimer and dementia data by a team of researchers at the University of Waterloo uncovered many patterns to wandering behaviour that were previously unknown. This includes revelations pointing to wandering being more common during the summer or fall months, an increased likelihood of someone wandering repeatedly if they’ve done it before, and that as many as 20 percent of wanderers slip out of care facilities. However, the facts alone aren’t enough to help caregivers and first responders understand what triggers people to leave the safety of their home or how best to find people in potential danger. The Waterloo research team is in the process of publishing a study that uses MedicAlert’s data to better understand the how, why and when of wandering to help families make decisions on how to manage risk.
“Our team is working with MedicAlert and others to understand how to define this concept of wandering so we can break down the components and provide a healthy approach to looking at it,” says Dr. Lili Liu, a professor at the University of Waterloo’s School of Public Health Sciences and one of the authors of the study. “When we look at individuals who are aging and diagnosed with a progressive cognitive decline, it doesn’t mean their autonomy needs to be taken away. When a person decides to live with risk, they and their care partners can decide what amount of risk is tolerable.”
A better understanding means better solutions
Neither Levinson nor Liu want to downplay the seriousness of wandering; there are many instances where wandering can end in injury or even death. But as we learn more about why people wander and how programs like Safe & Found can protect them should they slip away from home, both caregivers and people with dementia will be able to have more peace of mind.
Still of the more traditional tools used to limit risks and impacts of wandering, there is not enough data available to show if devices like GPS trackers are effective in helping to find lost adults. There are also cost barriers to such technology, as well as factors like battery life and connectivity to consider, so it’s essential that Canadians develop a better understanding of wandering to collectively help their loved ones and neighbours stay safe. Read more about tracking technology here.
“There are physical risks to wandering, as well emotional harm to the individual and to the family,” Liu says, citing both the cost of having to find lost adults and the stress and fear caregivers experience when having to constantly worry about their loved ones. “This relatively small number of individuals who do go missing and are difficult to find have a very high impact on society.”
Where Dr. Liu’s research impacts MedicAlert is in how it might translate to products and services to help manage risk. Already the data shows that individuals in the Safe & Found program who have been reported missing and are the subject of a search and rescue operation are returned home unharmed with no physical injuries 91 percent of the time. “Even MedicAlert’s basic Safe & Found service is a critical and reliable tool for people living with dementia,” says Dr. Stefanie Tan, MedicAlert’s Associate Vice President of Research, Innovation and Programs. “Aging in place, as research shows, is an effective method of care for people with dementia. As we continue to learn more from our data, we can build more advanced tools and services to support individuals and their care partners to live well outside of institutions and even within them.”
