Dementia-Related Wandering: What Caregivers Need to Know

Alzheimer’s disease and other types of dementia affect cells in the parts of the brain that controls memory, executive function skills, and spatial recall. Recent memories and spatial recall — the ability to remember different locations or where something is in relation to something else — are two of the first things that people with cognitive decline lose, according to the National Institute on Aging.^[01] This makes it harder to remember a destination, determine directions, or recall the reason for leaving in the first place.

“If a person is confused because of memory changes, and the environment becomes uncomfortable, they may attempt to leave the situation to get away from the discomfort,” says Andrea Denny, outreach, recruitment and engagement core leader for the Knight Alzheimer Disease Research Center in St. Louis, Missouri. “This desire to escape the overwhelming stimuli may cause what we call wandering.”

What triggers wandering?

Many activities, emotions, and physical changes can trigger wandering in someone living with dementia.^[02] For example:

• Being reminded of past routines. Visiting an old neighborhood, for example, can cause someone who has dementia to become disoriented. They may wander as they try to get to work or to their former home.
• Being reminded of former chores or responsibilities. Thinking about responsibilities such as caring for a child, cooking dinner for the family, or gardening can prompt someone who has dementia to find and complete chores they used to have.
• Stress or fear. Unfamiliar or crowded locations, such as busy restaurants, sidewalks, or even family gatherings, may lead to confusion or fear in people who have dementia, prompting them to wander.
• Overstimulation. Loud noises and quick movements can lead to anxiety. “Brain changes may cause them to interpret these stimuli differently than you and I might,” says Denny. While someone who doesn’t have dementia may tune out the conflicting sounds of television, conversation, and outdoor sirens, people who have dementia have a harder time ignoring these. Overstimulation may make them want to escape in favor of a quieter, calmer place.
• Frustration. Inability to communicate can lead to frustration. When someone can’t remember or ask for the things they need, they’re more likely to try to complete tasks by themselves.
• Visual-spatial problems. Even in a familiar setting, someone who has dementia may not be able to find objects like keys, navigate grocery store aisles, or understand the layout of rooms.
• Poor eyesight. Dementia changes the way eyes see and the way the brain processes visual information. Impaired peripheral vision can leave seniors unable to see alternate paths or signage, while incorrect depth perception — the ability to see how far away something is — can lead to someone turning earlier than intended, or wandering from a designated path.
• Poor dimension perception. In the late stages of dementia, vision may become limited. This can make it difficult to distinguish between two-dimensional and three-dimensional pictures or objects. For example, a rug’s pattern may come across as something physically blocking a path or hallway, forcing a senior to navigate around it and become lost or confused.
• Mobility. If someone needs to sit down or to avoid potential obstacles, they may forget their original intentions or become lost on an unfamiliar path.

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Wandering at night is a serious and common symptom of dementia.^[03]

“Sleep itself is often a major stressor for caregivers, and when you add wandering, it’s really a challenge,” says Denny. “No one is happy or able to provide their best care when they’re waking up multiple times a night — especially when they’re fearful that their loved one will wander.”

Some triggers for nighttime dementia-related wandering include:^[03]

• Physical discomfort. Someone may wake up because of a physical need, such as hunger, thirst, or the need to use the bathroom. While trying to address that need, they may become disoriented and wander away.
• Being too hot or cold. When the frontal and temporal lobes — the parts of the brain that process temperature and pain sensations — begin to deteriorate, the body can’t regulate temperature as well as it used to.^[04] Also, as we age, our temperature naturally drops. A person who has dementia may get out of bed to look for a blanket, for example, and forget where they’re going before they get back to bed.
• Boredom. Circadian rhythms — the natural, internal processes that tell us when to go to sleep and wake up — often change as people age. Seniors who have Alzheimer’s and other types of dementia generally experience more drastic changes than others. It’s common for people who have dementia to feel wide awake during the night. They may become bored and get up to find something to do.
• Lack of daytime activity. A person who sits all day or naps frequently during the day will be more likely to have sleep issues.

It’s estimated that between 35% and 60% of people living with dementia will wander at least once.^[05] Anyone living with dementia, and especially people who experience sundown syndrome, is at risk for wandering whether they walk or use a wheelchair.^[06] Wandering may begin in the early stages of dementia, even before someone has been diagnosed with dementia.

“Many caregivers I speak with doubt that their loved one is at risk for wandering,” says Denny. “But it’s good to be at least aware this is an issue early on, so appropriate precautions can be taken.”

Your loved one may be at risk for dementia-related wandering if they:

• Talk about going home when they’re already home, going to a workplace, or needing to care for a child
• Pacing, making repetitive motions, or repeating phrases
• Behaving oddly or acting nervous in public or crowded areas
• Taking longer than usual completing regular walks or drives
• Forgetting directions to familiar places, or insisting on repeating directions throughout a trip
• Having trouble finding familiar places, like the bedroom or bathroom
• Failing to complete an activity or a chore — for example, getting out multiple pieces of bread without making a sandwich, or repeatedly opening and closing a book
• Incorrectly judging the distance between objects
• Perceiving two-dimensional objects as three-dimensional

Wandering caused by dementia isn’t entirely preventable, but you can reduce the severity and danger of wandering patterns through behavioral changes, preparation, and technology-based solutions.

1. Provide supervision. Always stay with your loved one in new or changing environments, including stores, parks, and restaurants. If you’re a primary caregiver, consider hiring in-home care for respite to run errands, work, or spend time with family.
2. Cover or mask the doors and doorways. Neutral door coverings and floor mats in front of doorways reduce exit-seeking behaviors.^[03] Use removable curtains, paint, or wallpaper that matches the surrounding walls to obscure entries and exits. Alternatively, you can use posters that say, “Do Not Enter” or “Emergency Exit.”
3. Hide car and house keys. During unsupervised times, keep “trigger items” out of sight, says Denny. “Don’t leave car keys by the door, or anything else that might prompt someone to think they’re supposed to go out and do something.” Consider keeping keys with you or in hard-to-reach places, especially if your loved one no longer drives.
4. Plan meaningful activities. Seniors who are bored throughout the day are more likely to be restless at night, so provide opportunities for exercise and mental and creative stimulation. Plan engaging activities for the times of day your relative is most likely to wander.
5. Prepare your home. Alarms, locks, and motion-sensing devices can alert you when your aging relative moves around unsupervised. Other monitoring devices and modifications can keep them safe if they do wander. Some helpful home preparations include:
   • Installing pressure-sensitive alarm mats at doors and bedsides
   • Attaching warning bells to doors
   • Using child-proof covers on doorknobs, outlets, and cabinets with hazardous contents
   • Fencing the yard or using a hedge to block line of sight
   • Installing sliding bolts above eye-level, if they tend to unlock doors
6. Redirect and validate. Instead of telling your loved one that they aren’t allowed to go to work or drive, suggest a different activity or use validation to help them feel secure. For example: “We don’t need to run errands today; everything’s already here. We’re safe and have plenty of groceries.” Denny suggests exploring emotional connections related to where they’re trying to go: “You might ask, ‘what is your favorite part of work?’ or ‘what do you want to do first when you get home?’” she says. “Open-ended questions allow them to share memories or thoughts connected to the places they’re thinking about, which may prevent the urge to wander,” she says.
7. Reduce confusion. Loud noises, over-stimulating environments, and new places can cause confusion and agitation. Try to provide a calm environment, especially during times your loved one is prone to wandering.
8. Label and remind. Verbal reminders may limit disorientation in familiar settings. Consider signs for common areas — label the bathroom, bedrooms, and even clothing or favorite furniture. When possible, use your relative’s name. For example, a clear sign for “Rose’s favorite chair” can eliminate Rose’s stress and discomfort from finding seating.
9. Talk to your loved one’s doctor. They can discuss helpful sleep hygiene tips. If behavioral approaches don’t work, the doctor may prescribe melatonin or another sleep aid. Denny notes that some over-the-counter sleep medicines can make cognitive changes of dementia worse, so always talk to a physician before giving your elderly relative a sleep aid.
10. Create a safe environment. Night lights and arrows or signs posted around the house can help your elderly loved one remain oriented, while a clear path to the bathroom can help prevent falls.
11. Take preventive measures. Be sure your relative has safe access to a restroom, water, and a snack. Consider leaving a tablet with favorite games next to the bed, to provide safe distraction in case they wake up and feel bored.
12. Regulate sleep. Try to limit naps throughout the day and reduce fluids in the hours before bedtime to minimize nighttime trips to the bathroom.

Talk with a Senior Living Advisor

Some wandering is likely — even with preventive steps. Planning and knowing what to do in advance will help you find your loved one more quickly if they do wander away.

1. Prepare important documents. Make copies of these documents and share them with home care aides and other family caregivers:

• A recent, close-up photo of your loved one
• Up-to-date medical information to give to police in case of emergency
• A list of friends and neighbors to call for help
• A list of places your loved one may wander — former homes, jobs, favorite restaurants, or places of worship
• A list of people they may try to visit
• Information about your loved one’s symptoms and behaviors over time

2. Ask for help. Having all possible resources available can be necessary in case of emergency.

• In advance, ask family, friends, and neighbors to call if they see your loved one alone.
• Enroll your relative in a dementia wandering response service. MedicAlert’s Safe Return program has a 24/7 caregiver hotline.
• Tell the local police or sheriff’s department your loved one has dementia and may wander, says Denny. “I’ve heard really good feedback from caregivers about the responses from their local precincts,” she says.
• Call 911 sooner rather than later: Survival rates of people who have dementia and wander may be as low as 10% after 24 hours.^[07] Search your immediate area for 15 minutes — if your loved one isn’t found, call 911 or your local senior services hotline to report a missing person. Let them know your loved one has dementia and share their photo and your documents.

3. Be aware of your surroundings and your loved one’s condition. Knowing your neighborhood and your aging relative’s wandering habits can save time in an emergency.

• Identify obstacles and dangerous areas in your neighborhood, such as tunnels, heavily trafficked roads, and bodies of water.
• Be aware of any transit options near you, such as taxi stands or bus stops. Police can contact bus and cab companies if your loved one isn’t found in the immediate area.
• Know whether your relative is left or right-handed. Dementia wandering patterns often follow the dominant hand. In other words, if someone is right-handed, they’re more likely to turn right at an intersection.^[03]
• Keep track of places they regularly ask to go and have the phone numbers available.

4. Use tracking technology. GPS devices and other tracking systems can be effective ways to reduce caregiver stress. Many GPS tracking devices for seniors are available — watches, in-shoe tracking, and small, budget-friendly devices that attach to clothing are all popular options.

As cognitive decline progresses, it may become unsafe for your loved one to live at home, especially if they’re at risk of wandering. Memory care provides housing and 24-hour care for seniors with Alzheimer’s and other forms of dementia. These communities offer stimulating activities and therapies to reduce the likelihood of wandering, and also provide a protected environment for seniors who do wander.

Some memory care amenities to keep protect against wandering risks include:

• Specially designed memory care hallways and neighborhoods to allow unrestricted walking and pacing
• Outdoor wandering gardens for secure exploration
• Color-coded walls and signs
• Concealed doorways to reduce agitation
• Alarmed entry and exit doors to alert staff of dangerous situations
• Well-labeled rooms, furniture, and areas
• 24/7 supervision to assist with dementia wandering at night

To learn more about memory care communities near you, reach out to our local Senior Living Advisors.

Original article by Claire Samuels.