- Wandering is one of the most common symptoms of Alzheimer’s disease and other types of dementia
- Although dementia-driven wanderers are typically found near their homes, they don’t think that they’re lost and hardly ever ask anyone for help
- The reasons for wandering behavior in Alzheimer’s patients include cognitive deficits, stress, physical and social aspects in the patient’s environment
- Some of the risk factors for dementia-patients wandering are the severity of their condition, disorientation, sundowner’s syndrome or the “going home” syndrome, etc.
- The Alzheimer’s sufferer’s wandering can be in a random pattern or a lapping type, i.e. going around in a looping fashion
- It is important for caregivers to learn about the patient’s lifestyle prior to the onset of dementia as well as follow specific tips such as secure the environment, provide the patient with identification tags and tracking devices
It is a fact that almost all sufferers of Alzheimer’s Disease or various other types of dementia exhibit that particular symptom of wanting to “pick up and go”. Although naturally more restrained, even early onset dementia patients show signs like that. Some deeply-ingrained factor in their brain, even when they are in relatively good health, makes them want to do something other than what they are currently doing, and as they get going, confusion seeps in, and that can so easily lead to wandering.
This article thus exposes wandering, from early signs to the most dangerous behaviors that people with dementia can get themselves into.
Oh, my God!
Dad might remember your name, and where he left his eyeglasses, but he has Alzheimer’s disease, and although no early signs of wandering have as yet appeared, he’s nowhere to be found.
Wait a minute, who’s at the door? It’s that crazy woman who lives two houses down the street. “Next time I’m going to let him stroll onto the highway,” she yells, clasping Dad by the arm. Her face is splintered by a crooked grimace, and her tone is like she might be wagging a hateful finger at the dog that did its business on her best carpet.
“Oh, my God!” You exclaim wretchedly at the sight of your seriously-disheveled father. Sure he has Alzheimer’s, and his dementia has been on a rapid decline of late, but here he is now, barefoot and wearing a flimsy house gown. “Awfully sorry!” You interject, “He has Alzheimer’s; I promise he won’t do it again.”
“If he does, next time I’ll just let him keep going.” The woman has obviously had all she’s going to take from both you and your dad -Alzheimer’s and all. You apologize again, with a look on your face that is “. . . like a dumb leper who has lost his bell,” as Graham Greene was fond of saying.
The Case of the Silver Spring Wanderer
The wife of a prominent journalist wandered off one day not too long ago in Silver Spring, Maryland. Names, locations and events have been altered to preserve the privacy of those involved.
To cut a long story short, the police gathered a posse of some forty volunteers and two K9 dogs to search for her. They realized that she had Alzheimer’s Disease or some other type of dementia. They went around for the better part of a long day and evening, covering a two-mile radius of where she lived. They beat every bush and turned every stone, each search gang coming back repeatedly to where she lived and starting over in new ways and directions -to no avail.
In the end, and only by miracle, as someone practically stumbled over the woman, she was found crouched for warmth behind some shrubs in a neighbor’s back yard.
The lesson learned from that episode was that it is ten times as difficult to find a wanderer who is on the move. The woman was turning in circles as the search parties themselves turned. She was found only minutes after she stopped moving, in apparently reasonable health -other, that is, than her Alzheimer’s disease.
Tons of More Serious Cases Among Dementia Patients
Other cases are not as harmless as all that. We won’t bother to hide names and events on this one as this family’s story went into the public realm.
In May of 2008, Chuck Springer, a retired long distance trucker with either Alzheimer’s disease or some other dementia, made all the local news out of Belmont, Maine. On this lovely spring day, he walked out of his house and hasn’t been seen since, not by his family, not by the police -nor even by the FBI.
His mother, Ellie Springer, asserted that Chuck, despite his Alzheimer’s Disease, used to take long walks by himself around the neighborhood and in the nearby woods, and that although he was known to be a dementia-driven wanderer, he would stroll away for a couple of miles along the highway, but that he always made it back home on his own.
Not on that occasion though. On that day, Chuck, who had a passion for long-distance hauling, took off and never made it back home, despite serious search efforts. The only hope his family still have is that he may have been picked up by another friendly trucker. Years later, they still don’t know whether Chuck is a mile or a thousand miles away, or if he is indeed still alive and in relatively good health.
Wandering, perhaps second only to short term memory loss, could well be viewed as up there with the most common symptoms of dementia. Health care professionals have so far failed to fully interpret the nature of wandering from the dementia patient’s perspective. The same goes for attempting to manage it. Instead, researchers have for the most part concentrated on describing it, its prevalence, and how it impacts the lives of those who work and live around its dementia sufferers.
Everyone involved with Alzheimer’s patients and wandering has had the same first remedy in mind: to secure the environment and protect those errant wanderers among dementia patients.
The idea that wandering Alzheimer’s-impacted moms and dads who live at home with family or hired caregivers ought to be allowed to roam the entire zone of safety leads us to believe that wandering might not be regarded as the calamitous scare that is attributed to it at first glance.
Some academics have even premised that wandering is beneficial to the Alzheimer’s patient as a form of exercise, that it is harmless, perhaps beneficial, and that it could even be encouraged, just as long as the living environment is secured for persons with dementia. That theory never goes far however, if only because dementia-driven wanderers so often get themselves into a heap of trouble, not to mention that when in memory care homes, they interfere with the activities of others.
This somewhat lax line of thinking about the possible detriment of dementia-driven wandering is a lot more than what the Alzheimer’s Association and other scholars would like to tell us. They have stricter comments on wandering patients with Alzheimer’s.
Citing the continuous flow of alerts for missing dementia wanderers, the Alzheimer’s Association deems that wandering has reached crisis proportions. They estimate that 60% of people with Alzheimer’s practice wandering behaviors. That puts the yearly figure of dementia-driven wanderers in the U.S. at around 3 million.
In addition, as the number of our aging seniors increases, the number of Alzheimer’s and dementia patients will also increase, as will the number of those seniors with dementia who wander. It is also known that individuals with Alzheimer’s are more susceptible to wandering that others with vascular or any other type of dementia.
The big alarm bells go off though when the spotlight is shed on the following stats:
- It has been found that when dementia-driven wanderers are found within the first 12 hours, 93% survive, which means that 7%, or one out of every 14 individuals with dementia, do not survive. Putting it yet less gently, one out of every 14 Alzheimer’s patients who wander don’t make it back home alive.
- The stats for those wandering Alzheimer’s patients who are not found within the first 24 hours are naturally worse. Of those gone missing for 24 hours, the findings are sobering: only a third dementia sufferers survive. Of those wanderers with dementia who go missing for 72 hours, only one in five are found alive.
On the positive side, Alzheimer’s patients who go off on wandering travails and get found are discovered within a mile and a half of their homes. the preponderance of them are on foot, and those wandering Alzheimer’s patients hardly ever ask anyone for directions or help, and they never tell anyone they are lost simply because their dementia and cognitive impairment are such they don’t think they are lost. They don’t tell anyone where they are going and, perhaps because of their Alzheimer’s Disease, they never leave clues as to their whereabouts, and they don’t respond to someone shouting their name.
These Alzheimer’s Disease patients who wander turn invisible, and finding them is akin to looking for the proverbial needle in the haystack.
Read about other real-life stories of wanderers on this page by Dave Baldridge, Executive Director, International Association of Indigenous Aging.
The precise type of wandering and the Alzheimer’s sufferer’s ensuing demeanor or character traits are a function of several factors, the most significant being the overall cognitive deficits that dementia entails. Other factors would include health status, stress, physical and emotional needs, and physical and social aspects predominant in the Alzheimer’s sufferer’s environment, i.e. in the family home or in a memory care ward. Who the Alzheimer’s sufferers were prior to dementia also predisposes them to some extent to their current wandering.
More specifically, here are some of the direct risk factors for dementia-patients wandering:
The Severity of the Patient’s Dementia
This is perhaps the one risk factor that links most directly to wandering. The trouble is that the more severe the dementia, the tougher it gets to discern the disease’s other underlying causes, if only because communication with the patient with dementia gets more problematic.
Alzheimer’s patients get confused when it comes to who they are, where they are, and the time of day or night. Memory loss adds to the overall mix-up, leaving them unable to identify accustomed people and environments, at times even with early onset Alzheimer’s.
Trying to Reach a Place in the Past
Alzheimer’s patients who wander are frequently dreading their setting and attempting to find a more familiar environment, perhaps a destination that is part of their past, like going to work or to the grocery store they frequented for many years when they were in better health. “Going somewhere else” is often regarded as a prime suspect for a dementia patient who wanders, although it is always problematic to pinpoint where that other place may be.
Often the Alzheimer’s sufferer’s confusion peaks at sundown, particularly in living facilities and memory care wards when there is the added commotion of visitors, dining arrangements taking place, or when personnel shifts changes are occurring.
The “Going Home” Syndrome of Alzheimer’s Patients
Dementia-driven wanderers are often simply “going home”, even when they’ve been living in the same house for a very long time. These seniors with dementia may yearn for the very first childhood home that they can recall sentiments about. This “I want to go home” syndrome among dementia patients can also translate into an elopement risk, because they may go to all kinds of lengths to go to where they think they belong -thus the wandering symptom.
Health, Physical and Social Needs
Wandering among individuals with Alzheimer’s Disease may be the result of experiencing toileting, hunger, or other physical needs. Add to that the simple need for interaction with people and other social needs.
Medication Side Effects and Sleeplessness
As seniors age, they tend to use more prescription drugs, and the majority of those leave them with side effects such as wanton behavior and restlessness, which can result in wandering. Sleeplessness can also add to disorientation among patients with dementia.
Disorders related to Alzheimer’s, as well as “mixed types of dementia”, i.e. the convergence of different types of dementia that co-exist in the same patient, can often prompt disoriented Alzheimer’s patients to undertake impulsive actions, including wandering, often to simply alleviate their fear -fear being a dominant symptom among many dementia sufferers.
In study after study we find emphasis on the benefits of health-oriented lifestyles on the retarding of the disease’s progression or, conversely, if the dementia sufferers have malnutrition issues or keep consuming junk food, their dementia will be adversely affected.
The Alzheimer’s sufferer’s wandering can be in a random pattern, with stops, directional changes, and hesitation or uncertainty. Or, the Alzheimer’s patient’s wandering could be of the lapping type, i.e. going around in a looping fashion. An analysis of the level of someone’s dementia and cognitive deficiencies will not likely shed light on what type of wanderer they will likely develop into.
We learn that not only are there many factors that influence the dementia sufferer’s personality in disease, but that the resulting personality is unique to that dementia patient, and we should not try to apply any single strategy in managing them. We should instead concentrate on providing them with as healthy a lifestyle as possible.
Clinically speaking, the people who knew the Alzheimer’s sufferers best prior to the onset of dementia, and who have watched them closely since, are the most qualified to care for them. Naturally, in order for hired caregivers of dementia patients to make headway in that direction, and acquire some of that learning, they need to tap close family members and friends for information of a historical nature, particularly as to what line of work the dementia patients were in, and what hobbies they may have been involved with.
It has to be said that the typical temperament of an Alzheimer’s sufferer who wanders is one of gentility and compliance and does not pose as many difficulties for the caregivers as some with more dominant dementia symptoms can.
Increase Physical Activity
This naturally applies only to dementia patients for whom added physical exercise is recommended. Physical activity in the daytime has been known to reduce wandering at night. Even accompanying the Alzheimer Patient in a little walk before dinner can be helpful.
We mentioned above that sleeplessness as well as the need to go to the bathroom, or simply feeling “unclean”, or being thirsty or hungry, can result in an Alzheimer’s Disease patient wandering. Taking a few simple steps just prior to bedtime may save you from trouble at night.
Securing the Environment
When you are taking care of an Alzheimer’s patient who has demonstrated the wandering symptom, the first step to take naturally is to secure the home and turn it into a safe zone for the wanderer. Because this is obvious, we won’t dwell on it too much. Sufficient to say that apart from hiding locks and the other evident steps, there are motion detectors and other technological devices that go a long way towards securing the house or the ward.
For more on this, check out this article by The VA National Center for Patient Safety titled, A Toolkit: Patients at Risk for Wandering.
Dress the Alzheimer’s Patient in Bright Colors
We saw above how the wandering woman from Silver Spring was all the time hiding within 50 yards of where she lived. Had she been wearing bright-colored clothing, that Alzheimer’s sufferer would have been that much easier to locate.
Wearing Full Identification Tags
Your Alzheimer’s patient’s clothing should tell any concerned neighbor or police officer who they are, what their condition is, and where they belong. Inside their wallet is never enough, for they can discard the wallet, or it can get lost. Instead, resort to medical ID jewelry, like a bracelet, and sew identification into their jacket or other outer clothing. Many families make their loved one with dementia wear a sign saying: “I have Alzheimer’s Disease”, or “I am a dementia patient”.
Use Tracking or GPS Devices
Some of those help the caregiver know where the Alzheimer’s patient who wanders is, whereas other devices serve to transmit longer-range GPS-type locator messages. For more on life saving location devices, you can check out this article.
Briefing Neighbors and the Police
It makes absolute sense to ensure that your neighbors and local police station are aware of your loved one’s dementia condition, and its wandering symptom. Including their photo, and who to contact if they should come across the patient wandering at night or during the daytime would be a good idea.
Over-Anxious Caregivers of Patients With Dementia
Wandering patients with Alzheimer’s tend to produce over-anxious caregivers. That’s a fact that’s been corroborated a million times in real life. The anxiety barometer for caregivers of Alzheimer’s patients who have exhibited this wandering symptom tends to go to its highest levels when caring for errant loved ones once they actually threaten to wander outside the safety of the home. Often overwhelmed, the caregiver jumps out of bed at the slightest noise, thinking that there goes Dad or Mom again.
Even when Mom has mid-to-late Alzheimer’s, the first thing to do is not push yourself to an early grave on account of Mom’s wandering symptoms. Just follow the above-stated precautions routinely, and realize that even the most diligent caregiver can’t be within sight of their Alzheimer’s-driven charge every minute of day or night. Things may happen, but if you’ve covered your bases, the outcomes may hopefully not be all bad.
Not all wandering stories about folks with Alzheimer’s Disease need to end with less than ideal outcomes. Even as a lay or non-involved person, if you come across an older person who seems hesitant and possibly confused, or who is treading dangerously close to traffic or other hazards, do your good Samaritan part and take charge of the situation. Do it gently at first, for the person in question may naturally not have Alzheimer’s and may well know precisely what they’re up to, but if not, then your good deed will bear good results. We are responsible for our seniors with dementia, and being aware and proactive can prevent unnecessary tragedies from occurring.