One of the most anxiety-causing side effects of dementia is wandering. With this diagnosis, caregivers come to expect severe memory loss and confusion as to time and place, but usually they are not prepared for the constant “watch” they must have on their loved one.
Wandering in dementia occurs in nearly 60 percent of all people with dementia, especially in the middle stages. There are many facets to this unpredictable behavior, and the causes are as numerous as the tactics people have used to curtail them. In the end, knowing an individual’s personality, prior lifestyle and triggers which may send them “on the move” will make all the difference.
Knowledge Is Key
If a previous homemaker was accustomed to retrieving her children from the bus every day at 3:30 p.m., and as a senior with dementia, she wanders at that time habitually, it’s time to connect the dots. Her wandering pattern is the reason people wake up at the same time each morning without an alarm clock. Those set schedules become a part of the person. The triggers which initiate wandering are different for individuals. No two individuals have identical life experiences and past daily routines; not even driving or walking habits.
When a man lives in New York City his entire life, and then is moved to small-town Wisconsin so his daughter can care for him, it’s understandable he craves some sense of his former life. Plagued with dementia, however, he doesn’t understand that his neighbor from Queens is no longer a short stroll down the sidewalk. Thus, taking a walk becomes a dangerous wandering risk when he can’t find his friend’s home.
A loved one’s former work schedule also can be a clue to wandering patterns. What time did they start? What time did they arrive back home? Some people believe they are at work all day and try to leave when the sun sets, searching for a way home. They may look for a bus stop, train station, even parking garage. Anxiety might creep in when they feel unable to leave and care for their families. Many times a person with dementia says, “Why are you making me stay here?” For a caregiver, knowing these seemingly insignificant “life” facts can make a day less stressful and more predictable.
The Source of Wandering in Dementia
As the professionals at Mayo Clinic emphasize, many wanderers are either searching for or escaping from something.
Often, wandering occurs for no other reason than mere confusion. When a person with dementia becomes lost and disoriented after leaving a restroom at a public setting and cannot place themselves, it is a sign they may need additional supervision.
The challenge for them is an inability to communicate where they are, who they are with, and where to go next. Many times a person with dementia may not know their friends and family by name, but only by sight or even smell. Living with a degenerative memory disease is scary. At the onset, the person knows something is different and “off.” Imagine the fear of being in a room of people who seem familiar, but you just can’t pinpoint why. It makes the person with dementia uncomfortable, so they seek a way out of the situation. Factor in loud music or congestion of people and these triggers guarantee a paranoid, very fearful person. This explains why a person who wanders is not always in search of an intentional destination, but may be expressing a sign of distress and the need to escape.
A caregiver on the hunt must consider the physical, social and geographical factors of the place from where their loved one left. If it’s from the inside of a quiet home with which they are familiar, it’s a different story. They may be bored, looking for their job or going for the mail.
As a caregiver, it’s also necessary to ensure your loved one is getting enough exercise. Just as children and adults need physical stimulation to keep their bodies healthy, so do people suffering from dementia. Exercise lessens their anxiety and sense of boredom. Socialization is also an essential component to controlling nervousness, and in turn, wandering. No one likes to be alone.
The desire to fulfill basic living needs such as eating, drinking and using a restroom are all reasons a person may wander. Photos on doors can help with direction and a successful outcome. It is the caregiver’s responsibility to ensure these needs are met; otherwise, the person under their care may take off in pursuit of a bathroom and soon become lost.
A Different Direction
There are many factors a caregiver cannot control, as hard as they may try. With this illness, brain function is changing and lessening. A caregiver can have some influence, however, by guiding their loved one in a different mental direction.Understanding why persons with dementia wander is the key to keeping them safe. A caregiver can pinpoint the triggers by keeping a journal of the incidents. Also, the caregiver should look for a pattern, whether it is a time of day or the location the wanderer is seeking. Once the “why” is determined, there are several methods available to slow down someone with dementia.
For the homemaker, meeting her kids at the bus, folding towels, stirring a pot, or engaging in something else that reminds her of her past daily routine can keep her busy. A caregiver can tell her that the children will be home shortly, and change the discussion topic. Distraction and redirection are vital in keeping a loved one calm and feeling in control. How a caregiver redirects is just as important as the task itself. It must be done in a way that is supportive of the person with dementia.
The Journal of Family Practice says this: “Redirection is the most commonly misused behavioral management technique. When patients enter restricted areas, attempt to elope, or engage in problematic interpersonal exchanges, caregivers may tell them ‘You can’t do that’ and attempt to physically lead them away. Handled this way, redirection is often an antecedent to agitated or aggressive behavior.”
The journal offers this three-step approach, developed at Mayo Clinic, to successful redirection.
- First, validate the person’s apparent emotional state. (“You look worried.”) This helps establish rapport.
- Secondly, join their behavior. A caregiver might say, “You’re looking for your children? Well, I’m trying to find something, too. Let’s look together.”
- And finally, establish a common goal. Those with dementia are easier to distract after being treated as if they are needed, and part of a team. (“Let’s look over there where those people are having coffee.”)
Looking for the Lost
Even though redirection is a crucial part in providing care for a loved one with dementia, there are times the person simply goes missing.
In the “Caregivers Fact Sheet—Wandering in Dementia” by Meredeth Rowe, RN, PhD, it states that typically wanderers are found within five miles of their home. Her research also concludes that 90 percent walk away, five percent drive and very few use public transportation.
This seasoned nurse says the first step is to contact law enforcement as 50 percent of the time this sector is the first to find a lost loved one with dementia. Then, conduct a search immediately. The person will NOT return by themselves. Have a search plan. A friends-and-family network is an essential tool to have in place, so when the caregiver is out searching, the police and other people will have someone by a phone who can inform the others out looking when news comes in.
“Rapid action is crucial in preventing injuries and death after you cannot locate your relative,” says Rowe. “Enlist your family and neighbors to rapidly search the immediate neighborhood including yards, sheds and cars, etc. for about 30 minutes. If you haven’t found the person, call 911 – don’t wait more than 30 minutes at the most.”
Also, it will not work to predict where they may wander. As caregivers, knowing why they wander is one thing, but predicting where they will go is another. At this point, the person is lost and has no clue where to head next.
“Most persons with dementia will remain in populated areas walking in neighborhoods, around or in businesses, or along roads,” Rowe adds. “These people are easier to find, although it might take awhile. A small percentage decide to seclude themselves in woods, natural areas, or abandoned buildings and are very difficult to find. They hide themselves and don’t respond to searchers. So even though a searcher is near them, they remain hidden.”
As a caregiver, first get help searching; and then, get moving!
A caregiver must make sure their loved one has identification on them at all times. Often, police or community residents find a wanderer and can easily help by first establishing identity.
However, people with dementia misplace things very easily, including license and ID cards, so today’s technology is aiding caregivers with an extra layer of security for their loved one. The options are growing fast.
One of these options, GPS tracking, is a top competitor for wandering solutions. Many companies have developed their version of “person” tracking devices. Some are bracelets, wristbands, and necklace pendants a loved one can wear with assurance they will never be completely out of sight.
Other technology solutions involve in-home camera monitoring and cell phone tracking devices which are linked to 911 emergency response systems. Resources are available to caregivers; it is just a matter of determining which technology is best suited for their loved one’s lifestyle.
Safety is always a caregiver’s number one priority and freedom is their loved one’s goal. It may take a village to raise a child, and many caregivers would agree it takes the same to keep a loved one with dementia safe.
From doctors prescribing medications to neighbors being on the look-out, resources are available. Rowe says a caregiver should not be embarrassed to ask for help, and that “persons with dementia wander even when the caregiver has done everything humanly possible to provide excellent care and prevent this from occurring. It is not possible to provide 24-hour supervision. ”
The Alzheimer’s Foundation of America and professionals at Mayo Clinic offer these practical tips to keep a wanderer safe:
- First, reduce hazards. Throw rugs and extension cords are both tripping risks. Gates at stairwells and nightlights offer fall prevention.
- Having a “safe” zone for walking and exploration offer a loved one a place for exercise and also instills a sense of freedom they may have lost. A fenced backyard or three-season patio are good options.
- Reduce environmental stimuli like loud music or overcrowding, which might initiate wandering behaviors.
- Set a daily routine that includes recreational activities.
- Hide essential items such as coats, keys, wallets, and shoes that may spark a desire to leave home.
- Another consideration to increase safety is camouflage. A coat of paint, curtains, or some wallpaper can cover a door and blend it in with the surrounding wall. A mirror also works to deter a dementia patient from entering rooms that are off limits or not safe.
It’s difficult for a caregiver to not feel as if they are “locking down” their loved one, but the repercussions can be a lost person, or worse. Wandering is a serious side effect of dementia, though it may be minimized with a bit of knowledge and practical safety precautions.
If you are looking for a trusted partner to help prevent wandering in dementia or any other in-home care services, contact Help at Home Senior Care, a leader in home care in Lincoln, CA and surrounding areas.
by Jennifer Bradley