When meeting with patients and their families and listening to what may have led to their diagnosis of dementia, including Alzheimer's disease, there is often a story of being confused, disoriented, or lost, even in familiar places or routines. While much of this can be attributed to memory loss experienced in dementia, dementia can also cause changes in behavior and mood. Wandering is one example of these behaviors. When paired with failing memory, those impacted may find themselves in difficult situations where they do not remember where they are, their name, the names of their loved ones, or any of their contact information. In this guide, we will cover important topics like:
Behavioral and Psychological Symptoms of Dementia (BPSD)
Wandering is considered one of the behavioral and psychological symptoms of dementia (BPSD). BPSD, also known as neuropsychiatric or non-cognitive symptoms of dementia, are the common and often distressing features of dementia. They include emotional, perceptual, and behavioral disturbances similar to those seen in psychiatric disorders, and their presence and severity can significantly impact dementia prognosis and management. Also, most types of BPSD, including wandering, are associated with increased caregiver stress and burden.1
Examples of BPSD include:
- Wandering and restlessness
- Repetitive behavior
- Mood disturbance (e.g., depression, apathy, anxiety, elation, irritability)
- Social inappropriateness and disinhibition
- Psychosis (e.g., paranoia, delusions (false beliefs), hallucinations [seeing or hearing things that are not actually there])
- Physical aggression
- Sleep disturbance
BPSD is quite common, affecting approximately 90 percent of individuals at some point during the course of the illness.2 It is most common during the more advanced stages of dementia but can also occur in earlier stages of the disease, depending on the type of dementia diagnosed (e.g., psychosis in Lewy body or Parkinson's-related dementia).
Given that wandering is one of the most well-known and troublesome BPSDs, due to the safety factors involved, it may be useful to provide more detail about what might help reduce or redirect this behavior.
Watch my interview below to learn more about the behavioral and psychological symptoms of dementia.
Wandering Warning Signs
Those with dementia, including Alzheimer's disease, may wander off at any time. This can happen even in the earlier stages of the disease and can be more of a risk if they are mobile. Here are some warning signs that your loved one may be prone to wandering:
- They have difficulty navigating familiar places.
- They talk about needing to do previous life tasks/obligations.
- Your loved one no longer recognizes their home and/or asks to “go home” when already there.
- They do not remember returning home after being outside, or they return from a routine walk or drive later than usual.
- He or she is extremely restless or paces a lot, especially during the late afternoon or evenings.
- They act nervous and anxious in crowds.
While these signs may not all indicate someone will walk off, they are good indicators that there is an increased risk. When you notice these signs, watch your loved one closely, and be sure to alert their doctor.
Watch my interview with SeniorLiving.org's Editor-in-Chief Jeff Hoyt below for more information about the warning signs of dementia.
Why Do Those With Dementia Wander?
To help those with dementia, it may be helpful to understand some of the reasons why they may wander. Here are some typical explanations:
Confusion and Disorientation
The confusion and disorientation experienced in those with dementia, including Alzheimer's disease, can explain a lot of the wandering behavior. They may forget where they are or think they have to be somewhere else. They may lose track of time or awareness of their location. This may lead to continued walking or driving to reorient, leading to increased confusion instead of answers. A stressful or over-stimulating environment can also heighten confusion and disorientation.
Desire for Routine and Other Internal Drives
In dementia, it can be difficult for your loved one to remember environmental and life changes, like the fact that they no longer work. They may also fail to recall if or when they performed common day-to-day tasks or activities of daily living (e.g., eating, napping, toileting). However, the drive to engage in habitual routines, especially something well-rehearsed for many years like working, mealtime, or being somewhere at a specific time, continues. This experience may lead someone with dementia to try to leave at a certain time of day or feel the need to move around. For example, you may notice your loved one trying to leave in the morning around the time they used to go to work. They may also wander due to other internal drives, like trying to find food or a bathroom, searching for something they are thinking about, or responding to something they see or hear. They may also wander due to boredom.
Believing they need to “go home”
Although those with dementia may, in fact, be home, it's not uncommon for them to believe they are not. This belief can prompt them to wander off in search of the place believed to be their home. The desire to be home or find “comfort” likely has a role in this behavior.
Repetitive or restless behavior
Those with dementia may experience a sense of restlessness or a need for movement or repetition. This may make them feel as though they need to be somewhere else or continue walking or moving for no reason. Sometimes, the urge to move can be caused by a need or discomfort they are unable to express with words, like pain, medication side effects, hunger, or bathroom urgency. The urge can be so undeniable, practically forcing them to wander off.
Delirium3 is a serious worsening or change in a person's mental state that happens suddenly, over a few hours or days. The person often becomes confused, or more confused than usual, and has reduced awareness of their environment. Those with dementia are at a higher risk for delirium. If your loved one with dementia has rarely wandered before and has a sudden onset of confusion, disorientation, and wandering, it is important that you contact your medical provider so they can assess your loved one for delirium.
Tips to Prevent Wandering
While you may not be able to keep an eye on your loved one at all hours of the day, there are things you can do to identify the triggers of wandering and make environmental shifts to decrease the chance of wandering.
Consider Behavior Management Principles and/or Follow the DICE Approach
Behavior management approaches, including the DICE approach,4 encourage the loved one to become a “scientist” to help understand factors (medical, environmental, psychological) that escalate wandering. For instance, could the behavior be due to factors like pain, discomfort, or medication side effects that they can't verbally communicate? Is the wandering happening around the time they used to work or leave the home? Are they attempting to be busy and productive? Within the DICE model, you would:
- D: Describe what happens.
- I: Investigate possible causes.
- C: Create a plan.
- E: Evaluate the plan.
In this and other behavior management approaches, the focus is less on changing the person with reduced insight into their behaviors (given their dementia diagnosis) and more about changing possible medical, environmental, or psychological factors. For instance, you may notice that wandering usually happens just after waking up in the morning and hypothesize that hunger or a desire to engage in morning routines has a role. You may then create a plan to include the person with dementia in meal prep, reminisce about previous work roles, or to have them engage in one or two tasks that might remind them of their prior obligations. You'd then evaluate if there is a reduction in wandering after trying out the plan.
Create and Maintain a Routine
Creating a daily schedule provides routine and structure. Having a list of things that need to be done at a particular time or place may help prevent someone from wandering off. It's even better if the list includes things the person enjoys or has found meaningful in the past. Using various sensory cues to remind the person that this schedule exists may be useful, including alarms, lights, or having a schedule on a large print daily planner or a whiteboard.
Plan Activities Around Times of Restlessness or Agitation
If a person with dementia is experiencing restlessness, stress, agitation, or boredom, they may be more likely to wander. If you can identify these times, possibly from the behavior management or DICE approach noted above, and schedule activities during these times, you may reduce the restlessness or agitation and the likelihood of wandering. Items offering sensory soothing or distraction, like music, art, or tactile materials, may also be helpful and calming.
Avoid Busy Places
Busy shopping malls and other crowded spaces can be confusing and disorientating for people with dementia, including those with Alzheimer's disease. Environments that are overstimulating can lead to wandering and other BPSDs. Try visiting these locations only when you can assume there won't be large crowds.
Use Visual Cues or Distractions
As mentioned earlier, in dementia, it can be difficult for your loved one to remember environmental and life changes. Although one's memory of these changes is impacted, certain over-rehearsed visual or procedural concepts are not as affected by dementia. For instance, placing a stop sign at your front door may be a useful way to cue your loved one to stop or to walk away from the door. You can also paint a door to match the walls' colors or have the door represent something else of importance to the person (e.g., a garden, a sporting event).
Exercise appears to be beneficial in reducing some BPSDs, particularly depressed mood, wandering, and agitation. It may also improve sleep quantity and quality. Although the specific exercise type, duration, and frequency are unclear, some studies5 suggest that walking for at least 30 minutes, several times a week, may reduce BPSDs (including wandering).
If you are caring for someone at home who is prone to wandering, it may be helpful to take certain safety precautions. Here are a few things to consider:
- Take car keys away. If the person at risk for wandering off is still driving, it may help to take away the car keys. There is greater risk of a dangerous outcome with wandering patterns or instances of disoriented driving due to dementia. If the person is no longer driving, you'll want to keep any car keys out of sight. Someone with dementia may forget they no longer drive, take the keys, and attempt to get in the car and drive away. For those with dementia, entering a car alone or driving aimlessly is still considered wandering.
- Safety features on doors. Having locks that are easily accessible and workable allows someone to leave the home at any time. If possible, move locks to the very top or bottom of the door, where they may not be so readily accessed or in the line of sight of someone with dementia. You can also consider adding childproof door knob covers or an extra deadbolt lock so it is more difficult to open doors. Door or window alarms may also be an option, as well as pressure-sensitive alarm mats by the front door or next to their bed. As suggested earlier, someone with dementia may be discouraged from opening doors that lead outside if they are camouflaged (e.g., with wall paint, a picture or mural, or a curtain rod and curtain) or with the use of visual signs or cues (e.g., stop sign, do not enter sign).
- Mark all non-exit interior doors. To prevent confusion regarding which doors lead outside and which are interior doors, like the bathroom, kitchen, or bedroom, you can mark these rooms with signs or pictures. Nightlights may also be useful to help illuminate the bathroom at night.
- Supervision. If someone with dementia, including Alzheimer's disease, is being cared for at home, you may want to look into having an aide or other caregiver home at all times, or at least when the wandering is at its peak. Constant supervision may be necessary if wandering is an ongoing problem or when the person's condition begins to deteriorate.
Because those with dementia tend to wander off, many states now issue Silver Alerts. This is similar to the Amber Alert system used to find missing children. When a senior (usually a senior with dementia per alert protocols) is missing, family members will contact the authorities who may issue a Silver Alert (or that state's equivalent) to find the missing person.
While those with dementia, including Alzheimer's disease, may begin to wander at some point, the behavior may not last forever. Some people do it for a few months or a year and then stop. There is no set pattern for this behavior that fits all people with dementia, making it even more challenging to manage. The main objective is to take measures to make the person at risk of wandering as safe as possible.