When you see a person with dementia who is wandering, what do you really see?
Hi, I am Laura Struble and I have spent my career as a nurse practitioner working with people with dementia. My interest began when my grandmother developed dementia and I was not satisfied with the care provided by health professionals.
While she was in the middle stages of the disease, my grandmother felt it was time to "go home across the river." She must have been thinking of a childhood home in Europe because she never lived near a river in the U.S. My grandmother would escape from the house, walk straight across a golf course and interrupt golf games. Later, she would say that the people outside were very nice because, "They waved at me." In reality, the golfers were mad and were trying to get her off the golf 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 the officers had to bring her home in a police car on two separate occasions.
I am often consulted about wandering behavior in patients with dementia who live at home or reside in nursing facilities. Most often, there is nothing purposeless about the wandering behaviors I observe. Take my grandmother, for example; she was on a mission and adamant about going home. This is very different than the aimless wandering of hikers exploring the woods, as the above song lyrics suggest.
If you want to prevent and stop a loved one with dementia from wandering and promote safe walking, you first need to define what they are doing, or where they want to go.
Don't assume a "wanderer" is literally just wandering. It is very individualized action and a full description of the behavior 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 step back and describe what you are seeing in a very specific manner. Sometimes, it is as simple as asking your loved one who is wandering what they are doing, but often times you will need to watch and observe 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 one intervention does not fit all types of wandering behaviors. We use a three-step approach to defining a loved one's wandering behavior.
Step 1: Describe What You Are Seeing
What are your loved one's overall movements? Record descriptions like the examples below to begin analyzing their behavior.
- Trying to escape and leave the building
- Frequent or continuous movement from place to place with no perceived direction or destination
- Goal-oriented walking in search of "missing" or unattainable people or places
- Waking up at night and being disoriented
- Getting lost or unintentionally leaving the premises
- Anxious pacing or fretful walking
- Having trouble locating significant landmarks in a familiar setting
- Following behind or shadowing a caregiver's movements
The term wandering is vague and misleading. We often fall into the trap of labeling patients or lumping a group of unrelated behaviors together.
For instance, a person with dementia who is wandering at night may have their sleep wake cycle reversed, be experiencing scary visual hallucinations or become disoriented when going to the bathroom. Nighttime wandering is extremely stressful to family caregivers and there are real dangers to the dementia patient. This situation is much different than a person wandering in an enclosed garden or back yard, for example. Remember, 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 the behavior occurs, the time it occurs and what the consequences of the behavior are. Examples could be:
- Appears daily at 3:00 p.m. for two hours and the consequence is the person is attempting to escape the premises
- Appears once a month in the middle of the night and the consequence is the person is turning on the lights and waking up the family caregiver
- Appears to start daily at 8:00 a.m. and lasts for 10 hours, non-stop, and consequence is the person fell three times this week and lost 10 pounds in the last month
- Appeared once while on vacation, at 10:00 a.m. and the person was lost outside for two hours
Step 3: Contemplate the Underlying Causes
Think about the person who is wandering. Ask yourself what could be the cause in that particular person. Some examples might be:
- Was she always very active and liked to move, and thus might be imitating past habits or life experiences?
- Is she at the stage of dementia where she is thinking about the past and does not recognize familiar surroundings?
- Does she have unmet needs, such as searching for the bathroom, food or comfort? Does she seem worried, anxious or bored?
- Has she recently started a new medication and suddenly become restless and unable to sit still (medical term is called akathisia)?
Only after you have defined the problem by completing these three steps can you start thinking about interventions.
Prevent Wandering and Promote Safety
You may come to find out that the wandering behaviors are not harmful at all and interventions are not necessary. Walking provides many health benefits and can be a good activity. However, if the 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 and paid caregivers 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 used can cause sedation and falls. Use of physical restraints can lead to poor circulation, weakness, incontinence and impedes quality of life as well.
People who wander should have choices and be allowed to be as independent as possible. There are instances where the person who wanders may benefit from medications, such as sleep wake cycle difficulties or issues related to pain, which is why it is so important to go through a rigorous assessment process first and accurately describe the behavior. This will allow for the development of interventions that will work for the specific individual who is wandering.
Getting back to my grandmother and her unsafe wandering behavior, we understood that she felt the need to go home and take care of her family. This escape behavior typically occurred at 3:00 or 4:00 p.m. in the afternoon, when the house was quiet and not much was going on. Therefore, in the late afternoon, we tried to keep my grandmother purposely engaged in activities so she was not panicking or worrying that she needed to be somewhere. We encouraged her to engage in her normal household routines such as setting the table, peeling potatoes, looking at magazines or going out for car rides.
In addition, we placed latch locks high on the doors and always had the garage door shut. There were bells on all the doors as well. My grandmother refused to wear a medical alert bracelet, so we sewed her name and phone number into her coat and had multiple pieces of paper with her name and phone number in her purse and pockets. Lastly, we handed out pictures of my grandmother with contact information to the police department, mail man and neighbors so they would know what to do if they saw her.
Remember that behavioral problems in dementia 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 our family improvised proactively to keep her as safe as possible
The experience of having dementia is different for everyone. It is up to us, the caregivers without dementia, to adjust our behaviors and the environment to address the unmet needs behind the wandering. We can focus on the emotional, cognitive and physical needs of the person who wanders, and modify the physical environment to make wandering safe.
Human behaviors are complex and, as you can see, there are no quick or easy answers to this multifaceted problem. Before we can look for solutions to the problem of wandering, we must first ask ourselves "What does the wandering mean to this person, at this time and in this place?"