Wandering is a common phenomenon in the early and middle stages of dementia occurring in 15-60% of dementia sufferers. This behavioral disturbance is a major cause of hospital admission, physical harm, institutionalization and even death. It is considered one of the least manageable behavioral problems of dementia by caregivers. Less than 4% of people with dementia who wander away from home are able to return on their own. Alzheimer’s patients have difficulty determining whether they, or the objects around them, are actually moving in the environment. This problem with “optic flow” can lead to disorientation, wandering and getting lost.
Generally if an individual is found within 24 hours they are returned safely, however after 24 hours the survival rate drops down to 46%.
Chances are that your loved one will become separated from you at least once during the course of the disease – either at a crowded shopping center or while you are busy with chores. Though wandering remains a risk while a loved one is mobile there are things you can do to help prevent wandering and to ensure that your loved one is returned safely if they do become separated.
Who is at Risk of Wandering?
Anyone who has memory problems and is able to walk is at risk for wandering. Even in the early stages of dementia, a person can become disoriented or confused for a period of time. Note that wandering and getting lost is common among people with dementia and can happen during any stage of the disease. It's important to plan ahead for this type of situation. Be on the lookout for the following warning signs:
- Returns from a regular walk or drive later than usual
- Tries to fulfill former obligations, such as going to work
- Tries or wants to "go home," even when at home
- Is restless, paces or makes repetitive movements
- Has difficulty locating familiar places like the bathroom, bedroom or dining room
- Asks the whereabouts of current or past friends and family
- Acts as if doing a hobby or chore, but nothing gets done (e.g., moves around pots and dirt without actually planting anything)
- Appears lost in a new or changed environment
Why Wandering is an Issue for Alzheimer’s?
Wandering is a definite hallmark of Alzheimer’s disease yet the association between wandering and Alzheimer’s is not thoroughly understood, and can be unsettling and frightening both for the person suffering from Alzheimer’s and their loved ones. Although seemingly aimless, the activity of wandering can actually be a desperate attempt to communicate after critical language skills have slipped away.
Those persons with Alzheimer’s may be trying to tell you they are feeling lost, or feel as though they have lost something through their wandering, however it can also be signaling something as simple as hunger, thirst, or a need for rest or exercise. Think about how it would be if you were absolutely unable to communicate your most basic needs to your caretakers after all, even the tiniest babies communicate their specific needs through their varying types of crying, and most mothers become extremely adept at deciphering those cries. Too much external stimulation can also link to wandering and Alzheimer’s disease as the brain which has slowed down significantly can be overwhelmed by loud sounds, or even multiple conversations in the background.
The combination of wandering and Alzheimer’s can also be attributed to certain medication side effects, frustrated attempts to express fear, isolation or loneliness, simple curiosity, boredom, visual stimuli which triggers past memories or routines, or even being thrust into a new environment. For instance, a person with Alzheimer’s may see a briefcase, and be thrust back into a time when they picked up their briefcase and went to work each day. This kind of visual stimulus could prompt them to wander about in an effort to find their office.
If you're caring for a loved one who has Alzheimer's, use simple strategies to curb wandering:
- Address potential triggers. Offer your loved one a snack, a glass of water or use of the bathroom. Encourage physical activity to curb restlessness and promote better sleep. If you think your loved one is looking for something familiar, provide a family photo album or share favorite memories.
- Provide visual cues. People who have Alzheimer's often forget where they are, even inside their own homes. It might help to post descriptive photos on the doors to various rooms, such as the bathroom, bedroom and kitchen. Encourage your loved one to explore his or her immediate environment as often as necessary.
- Plan activities and other distractions. If your loved one tends to wander at the same time every day, a planned activity at that hour could stem the wandering. It might be as simple as asking the person to fold a basket of towels or put place mats on the table for dinner. If wandering outdoors is an issue, you may want to store coats, boots and keys out of sight.
- Reassure the person if he or he feels lost, abandoned or disoriented. If the person with dementia wants to leave to "go home" or "go to work," use communication focused on exploration and validation. Refrain from correcting the person. For example, "We are staying here tonight. We are safe and I'll be with you. We can go home in the morning after a good night's rest."
- Avoid busy places that are confusing and can cause disorientation. This could be shopping malls, grocery stores or other busy venues.
- Consult with doctor. Consult with a physician to see if medications can help. Individuals who wander as a result of delusions or hallucinations may require psychotropic medications.
Keep your Loved One Safe
Despite your best efforts, it may be impossible to completely prevent wandering. Consider these techniques to minimize problems related to wandering:
- Reduce hazards. Remove tripping hazards, such as throw rugs and extension cords. Install night lights to aid nighttime wanderers. Put gates at stairwells to prevent falls.
- Provide a place to wander safely. If wandering isn't associated with distress or a physical need, you may want to focus simply on providing a safe place for walking or exploration — such as a path through the rooms of your house or a circular trail through a fenced backyard.
- Install locks on the doors. The doors are the first place to stop a loved one from wandering. Early in the disease when they are most likely to wander off, they may still remember how to unlock the current locks. Placing hook and eye latches on the outside screen door is very effective. They are best if they are placed either very low on the door or high on the door. You can place a double key lock on the inside door, but be aware that your loved one may get panicked if they cannot open the inside door.
- Install locks on the windows. The windows are something most forget about but sooner or later many loved ones remember. Even windows on the upper levels of home or a facility should be safeguarded from an individual who may open it and crawl out. If you have windows (and doors) that slide open from side to side, often a piece of wood cut so the window can only be opened part way is helpful. Windows that slide up and down can be safeguarded by putting a nail or screw in the track so the window can only be partially opened. If the window opens with a crank, you can take the handle off when you have adjusted the window to the desired position.
- Keep all keys up and out of sight and reach. An individual with Alzheimer’s Disease may still be able to recognize a key and understand its use. A loved one that gets hold of a car key and slips off can be gone miles by the time it is noticed. This does happen and it happens more often than you would think.
- Keep outdoor clothes under control. Put away essential items, such as the person's coat, shoes, pocketbook or glasses, since some individuals will not go out without certain articles.
- Install alarms. There are many types of alarms systems that can be used to let you know when a loved one is entering or leaving an area. You can equip the doors that lead outside or to dangerous areas like garages and stairs with a simple door alarm available at most electronic shops. In general, they sound an alarm when a pin is pulled or a connection lost when a door is opened. You can also get pressure sensitive mats that will set off an alarm when a loved one steps on it. This can give you the benefit of a little extra time by alerting you where they are before they open the door to go out. You can also get motion detecting alarms that can be set to let you know when your loved one gets out of bed or exits their room.
- Camouflage doors. To short-circuit a compulsion to wander into off-limits rooms, you might place curtains over doors or camouflage doors with paint or wallpaper that matches the surrounding walls. A mirror on the door might help, too. You may also place large signs on exits that say "Stop" or "Do Not Enter". Place a black mat or paint a black space by an exit, which may appear to be an impassable hole to those with dementia. Likewise, a large line, strip of tape or Velcro may act as a barrier.
- Erect fences and gates. Trying to keep a loved one restricted to the indoors all the time, especially in good weather, is usually not reasonable. Everyone enjoys being able to go outside on their own, including individuals with Alzheimer’s Disease. A fence can often provide them a place to go in relative safety. Chain link fences are not a good idea as most loved ones can climb those rather quickly. A privacy fence can be good but you want to make sure the side without the brace beams are not facing in or it is a double sided privacy fence. The side braces often provide a foothold for climbing over the fence. In general, a farm fence with squares, which are too small for a foothold, works very well. It should be at least six feet tall to provide extra assurance that your loved one cannot pull themselves over the fence.
- Avoid leaving a loved one home alone. Determining when an individual with Alzheimer’s Disease is no longer to be left at home alone for short periods can be difficult. Alerting a neighbor to keep an eye out when you go out is a good idea or even recruiting a friend or neighbor to "visit" with your loved one while you go to the store is even better. You can approach for help at local area churches, High Schools, Scouts, Community Centers, Senior Citizen's Centers, local Alzheimer’s Association chapter and any other group you can uncover. When someone offers to help don't refuse it! Accept it right then and count it as a blessing.
Ensuring a Safe Return
Wanderers who get lost can be difficult to find because they often behave unpredictably. For example, they may not call for help or respond to searchers' calls. Once found, wanderers may not remember their names or where they live. Consider these tips to improve your chances that your loved one will get back home safely:
- Inform your neighbors. To trigger the neighborhood unofficial watch, inform your neighbors and other close contacts about your loved one's condition. Keep a list of emergency phone numbers handy in case you can't find your loved one.
- Keep a list of places where the person may wander. This could include past jobs, former homes, Adult Day Care or Senior Centers, places of worship or a restaurant. While considering a search plan, keep in mind if the person is right-handed or left-handed. Wandering generally follows the direction of the dominant hand.
- Consider enrolling in a safe-return program. A Safe Return bracelet, necklace or emergency ID card will help your loved one to be identified if you get separated. A Safe Return bracelet from the Alzheimer’s Association (http://www.alz.org) is a good way of assuring that if your loved one identity is known to authorities. It is best to put the bracelet on the dominant wrist so that your loved one is not able to take it off. Sometimes it is impossible to get a loved one to wear the bracelet or necklace. In those cases you can make sure that a label with your loved one’s name and phone number is on all their clothing. You can never depend on your loved one to carry their ID when they are separated from you and you want to be sure that if your loved one wanders they can be ID and returned quickly.
- Dress in brightly colored clothing. Bright and distinct clothing can be spotted from a distance. Dressing in clothing that can be easily spotted especially in a crowd is helpful when taking a loved one out shopping or on an outing. It is very easy for an individual with Alzheimer’s Disease to become separated especially when there is a crowd. It can happen within seconds. Don’t panic if it happens.
- Use a GPS device. You might consider having your loved one wear a GPS or other tracking device that can send electronic alerts about his or her location. If your loved one wanders, the GPS device can help you find him or her quickly. Modern smart phones are capable to get installed free or commercial GPS tracking applications which will help you to know where your loved one at any moment.
- Search Immediately. If the person does wander, search the immediate area for no more than 15 minutes. Call "911" and report to the police that a person with Alzheimer's disease — a "vulnerable adult" — is missing. A Missing Report should be filed and the police will begin to search for the individual. In addition, a report should be filed with MedicAlert+ Alzheimer's Association Safe Return at 1.800.625.3780. First responders are trained to check with MedicAlert+ Alzheimer's Association Safe Return when they locate a missing person with dementia. You do not need to be enrolled in MedicAlert+ Alzheimer's Association Safe Return in order to file a missing report. A search should start immediately, typically beginning in a five-mile radius of where the person was last seen.
Please remember wandering is a big risk factor for individuals with Alzheimer’s Disease. We can take precautions to keep our loved ones safe. Even the best caregiver or facility will have experiences with wandering. If your loved one wanders of, don’t beat yourself up for being neglectful. Take reasonable precautions, don’t panic and enlist others to help you find him/her.
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