Where is wandering in the National Dementia Strategy?

An elderly womanImagine having an enormous database of information about the fastest-growing health population – information that could help these individuals live safer and more fulfilling lives. Then, imagine not having the funding to do anything with that information. This is the quandary MedicAlert Foundation Canada is currently in when it comes to people living with dementia who wander and become lost.

It’s estimated that health-care costs and out-of-pocket caregiver costs for Canadians with dementia will reach $16.6 billion by 2031. Yet, the National Dementia Strategy, which was first released by the federal government in 2019, does not mention anything about wandering.

It’s filled with goals and funding for prevention, treatment, research for a cure and public awareness of dementia, all of which are important. But when it comes to risk reduction and personal safety, the only risk the report refers to is the risk of developing dementia itself.

The fact is, nearly 600,000 Canadians currently live with Alzheimer’s or other forms of dementia, and more than 120,000 additional Canadians are diagnosed each year. Each person deserves to be supported and cared for, wherever they are in the progression of their condition.

It’s essential the federal government looks at risk reduction in the existing population of people with dementia because behaviours like wandering and exit-seeking, which can result in disorientation and becoming lost, are more common than anyone would like to admit. It’s estimated that around 60 percent of people living with dementia will wander at least once during the progression of their disease. Most who wander will do so repeatedly. Even more concerning, one study found that 30 percent of all missing incidents involving individuals with dementia resulted in death.

In contrast, new research from MedicAlert and scientists from the University of Waterloo indicates that when MedicAlert was pulled in to support a wandering incident, 91% of individuals were returned home to loved ones without any harm. The impact wandering data can have on keeping people safe is clear.

Despite a relatively large body of research, wandering remains a poorly understood and unpredictable behaviour, especially among caregivers. Because of this, the threat is often ignored until it is too late, and a wandering incident has happened – something that’s not only dangerous for the individual in question, but also incredibly stressful for the caregivers and costly when search-and-rescue efforts are triggered.

Placing wandering in the National Strategy will help prioritize government funding for research on the issue, as well as support for existing and proven tools that mitigate the harm it causes.

Why wandering is ignored

It’s not entirely surprising why wandering is often ignored in dementia strategies. One of the big mysteries for caregivers is how fast or slow Alzheimer's and other dementias will progress, from mild cognitive impairment to severe, at which point there is usually also physical deterioration. The stages often overlap, with no clear delineation of symptoms. Some stages may last for years before progressing, giving it a far less predictable trajectory than many other diseases, and wandering exists in the messy middle of it all, often not discussed until it happens.

Wandering is also a term that covers a variety of behaviours that range from marginally disruptive to life-threatening. Some individuals just want to go for a walk and return unharmed; others display what’s known as exiting behaviour, which involves searching for ways out of a room and leaving by any means necessary, even if that means breaking a window and climbing out. Which type of behaviour your loved one might display, when it might begin and how many times it might happen, however, are as perplexing and unknowable to the average caregiver as whether they will wander at all.

As with many illnesses and conditions that impact cognitive function, those who live with dementia are invisible for as long as they aren’t perceived to be a burden to society. In truth, it’s much easier to ignore what’s invisible than it is to throw resources at something that may or may not manifest. But without a focus on wandering in all its complexities, and without the infrastructure to support it in our publicly funded system, it is far more costly to react to each incident as it happens.

The true cost of wandering

According to TKTK, the average cost of a basic ground search and rescue is about $15,000 per instance*. If someone becomes disoriented and gets lost weekly, with police or search and rescue getting involved, those costs add up.

But that's just the system cost; the cost to families is astronomical.

When wandering behaviour begins, a caregiver’s life fundamentally changes. The stress of not understanding or being able to predict these incidents is not only overwhelming, it makes a normal life untenable. Family caregivers may be unable to work as they try to manage their parent or spouse, or they may need to place the individual in a memory care facility – with either option costing potentially tens or hundreds of thousands of dollars.

MedicAlert Foundation Canada is in a unique position to facilitate groundbreaking research on the topic of wandering behaviour thanks to its trove of longitudinal subscriber data. We have the largest database of wandering information in the world. A team of scientists at the University of Waterloo are already using that data in their research to gain more insight into behavioural patterns related to wandering so they can better predict if and when it might happen, as well as to whom, versus those who will be spared.

Perhaps the most important insight to come from MedicAlert’s data, however, is the intrinsic benefit a subscription to the Safe & Found Program provides to people living with dementia, as well as their caregivers. With critical personal information held securely in MedicAlert’sSubscriber Health Information Database (SHID), which includes details like personal triggers, nicknames, visual identifiers and the most important details of previous wandering incidents, the subscription can help ensure family reunification during a missing incident.

The importance of prevention

As researchers refine MedicAlert’s data and uncover more patterns, imagine how much money could be saved by analyzing the probability of wandering for each person with dementia and then educating caregivers, after an initial dementia diagnosis, on the steps they could take to reduce that risk. Prevention should continue after someone develops dementia. At MedicAlert, our hypothesis is that we can change the trajectory of not only the patient’s life, but also the caregiver’s life as well if we can put these preventative measures in place upstream instead of dealing with the crisis downstream.

Government must recognize this potential as well, through policy and funding support. The best way to do that is by placing wandering in the National Dementia Strategy and giving it the attention it merits. With continued research and actionable insights provided by scientific teams, we can stop wandering in its tracks.

*Neubauer, N. A., Miguel-Cruz, A., & Liu, L. (2021). Strategies to locate lost persons with dementia: a case study of Ontario first responders. Journal of Aging Research, 1-9.