I have spent my career as a nurse practitioner working with people with Alzheimer’s disease and other forms of dementia. My interest began when my grandmother developed dementia and I was dissatisfied with the care and level of understanding she received from medical professionals.
Families often consult with me about one worrisome symptom of dementia: wandering. For dementia patients, this behavior is very different from the aimless wandering of hikers exploring the woods or tourists moseying around a new city. Most often, there is nothing purposeless about the wandering behaviors I observe.
Take my grandmother, for example. While she was in the middle stages of the disease, she became adamant about “going home across the river.” She must have been thinking of a childhood home in Europe, because she never lived near a river in the United States. My grandmother would escape from the house, walk straight across a nearby golf course and interrupt people’s games. Later, she would say that the people outside were very nice because they waved at her. In reality, the golfers were mad and trying to shoo her off the course!
Despite locks on the doors, my grandmother was an escape artist. Everybody in the neighborhood knew her, and when we were out searching for her, the mail man, neighbors or delivery truck drivers would help point out which way she went. My grandmother was also well known at the local police department because officers had to bring her home in a police car on two separate occasions.
Although these episodes were rather embarrassing, we were fortunate to live in a safe neighborhood full of caring individuals. Sadly, this isn’t the case for every family looking after a person with dementia. That is why it is crucial to try to understand the driving forces behind a loved one’s wandering and take the necessary measures to prevent them from getting lost and injured.
How to Manage Dementia-Related Wandering
To prevent a loved one from wandering and promote safe walking, you first need to define what they are trying to achieve or where they want to go. Don’t assume a “wanderer” is literally just wandering. This behavior is very individualized and a full description of their actions is essential. Of course, that’s easier said than done. I know family caregivers and nursing staff are very busy, but it is important to take the time to observe the nuances of their behavior. Sometimes, it is as simple as asking your loved one what they are doing, but often you will need to step back and closely watch what is happening to discover the purpose behind their behavior. This may take time and require multiple observations. Just remember that, if you cannot define and measure the wandering behavior, how can you or dementia care experts develop interventions?
Wandering is complex, and there is no one-size-fits-all intervention for this symptom of dementia. In my line of work, I use the following three-step approach when troubleshooting these behaviors.
Step 1: Describe What You Are Seeing
The term wandering is vague and misleading. We often fall into the trap of slapping labels on things or lumping a group of unrelated behaviors together, but dementia and its symptoms are unique to each person. To find a workable solution, you must try to understand your loved one’s feelings and motivations during these episodes. Below is a list of questions about common wandering behaviors that can help you begin analyzing their actions.
- Trying to escape and leave the building?
- Frequently or continuously moving from place to place with no perceived direction or destination?
- Walking in a goal-oriented manner? (e.g. in search of “missing” or unattainable people or places)
- Waking up in the middle of the night and acting disoriented?
- Getting lost or unintentionally leaving the premises?
- Anxiously pacing or fretfully walking?
- Having trouble locating/recognizing significant landmarks/belongings in a familiar setting?
- Following behind or “shadowing” another person’s movements?
- Feeling paranoid or in danger?
For example, these questions may be able to help you differentiate between whether your loved one’s nighttime wandering is due to disruptions in their sleep/wake cycle, scary visual hallucinations before falling asleep or disorientation after getting up to go to the bathroom. Remember, though, a person with dementia may exhibit multiple types of wandering behavior that can fluctuate in frequency and severity.
Step 2: Consider the Time of Day and Frequency
Think about how often these unusual behaviors occur, the time of day they occur, and what the consequences of them are. These patterns can help caregivers prepare for episodes before they begin and prevent negative effects. Examples could be:
- Behavior occurs daily at 3:00 p.m. for two hours and results in the person attempting to escape the premises.
- Behavior occurs once a month in the middle of the night and results in the person turning on all the lights in the house and waking up family members.
- Behavior starts daily at 8:00 a.m. and lasts for 10 hours, non-stop. The result is the person fell three times this week and lost 10 pounds over the last month.
- Behavior occurred once while on vacation at 10:00 a.m. and resulted in the person being lost outside for two hours.
- Behavior occurs about twice a week at 7:00 p.m. and results in the person pacing around the home.
Step 3: Contemplate the Underlying Causes
Think about your loved one and ask yourself what could be causing them to wander. A person’s lifelong routines, the onset of new symptoms and even basic personal needs could be triggering their behaviors. The following questions might help:
- Was your loved one always very active?
- Is there a specific activity that they used to do during the day that coincides with the timing or actions of your loved one’s wandering? (e.g. going to pick the kids up from school, taking a morning walk, preparing breakfast)
- Is your loved one at the stage of dementia where they are confusing the past and present?
- Do they recognize familiar surroundings?
- Does your loved one have any unmet needs, such as needing to use the bathroom, wanting food or water, or desiring comfort?
- Does your loved one seem worried, anxious or bored?
- Have any new medications been added to your loved one’s regimen? What about dosage changes?
- Has their environment changed at all recently?
Only after you have defined the problem by completing these three steps can you start thinking about whether an intervention is needed and what that might entail.
Ways to Prevent Wandering Behaviors and Promote Safety
You may come to find out that your loved one’s wandering behaviors are merely annoying and do not pose any harm. This is a good thing, because it does not require an intervention. Walking provides many health benefits and can be a good activity. However, if a person with dementia is walking to the point of exhaustion, losing weight, falling, getting lost or escaping into unsafe areas, then interventions are necessary.
I have often found that family, paid caregivers and health care providers tend to want to control or stop behaviors through medications or physical restraints first. That is the worst thing you can do. There are no FDA-approved medications for wandering behaviors, and the medications many doctors recommend can cause sedation and contribute to falls. The use of physical restraints can lead to poor circulation, weakness, incontinence and impede quality of life.
Individuals who wander should have choices and be allowed to be as independent as possible. There are instances where a wanderer may benefit from medications to regulate their sleep/wake cycle or alleviate pain. But, it is still very important to go through a rigorous assessment process first to analyze their behavior. This will allow for the development of interventions that will work for the specific individual who is wandering.
With my grandmother, we understood that her wandering stemmed from a desire to go home and take care of her family. This escape behavior typically occurred at 3:00 or 4:00 in the afternoon, when the house was quiet and not much was going on. Therefore, in the late afternoons, we made a point of keeping my grandmother engaged in activities so she was not worrying that she needed to be somewhere or do something. We encouraged her to participate in her normal household routines such as setting the table for dinner, peeling potatoes, looking at magazines or going out for car rides.
In addition, we placed latch locks high up on exterior doors and always kept the garage door shut. There were bells on all these doors as well, which functioned as a back-up alert system in case a door was accidentally left unlocked. Wearable medical alert devices can be a godsend for wanderers, but my grandmother refused to wear one. Instead, we sewed her name and phone number into her coat and placed pieces of paper with this information in her purse and pockets. Lastly, we handed out pictures of my grandmother with contact information to the local police department, our mail man and our neighbors so they would know what to do if they saw her alone outside.
Dementia-Related Wandering May Evolve and End
Remember that dementia-related behaviors change over time. My grandmother’s escape behavior lasted about a year and then went away. She died over 20 years ago, before information on wandering was readily available, but my family was proactive and improvised ways to keep her as safe as possible while living with us. We were fortunate that our multi-faceted approach was successful.
The experience of having dementia is different for everyone. It is up to us to adjust our attitudes and the environment to address our loved one’s reasons for wandering. If we focus on their emotional, cognitive and physical needs, we may be able to prevent the behavior altogether or at least make it safe. For some individuals, this is impossible. If both a caregiver and a dementia patient’s health and safety are at risk, then placement in a secure memory care facility may be the only solution.