Wandering and Dementia

One of the biggest worries when caring for an aging loved with dementia is wandering. Wandering and dementia go hand-in-hand. According to the Alzheimer’s Association, six out of ten people with dementia will wander. Ninety-four percent of people who wander are found within 1.5 miles of where they disappeared. If not found within a 24-hour period, up to half will suffer serious injury or death. 

The causes of wandering vary by stages of dementia. Knowing the level of your loved one’s decline may help you plan how to recover your loved one once they wander. Here are some ways to reduce or prevent wandering or what to do if they lose their way.

Level of Dementia

Mild Dementia

With mild dementia, create simple cuing aids, such as a card for his wallet or her purse, with directions for when they become lost. You may need a few more cards to cover different scenarios, like the doctor’s office, grocery store, coffee shop, etc.

For example, the card could be simple like “I am Lost. Call home 555-555-5555” (use your phone number). For men, if he goes to the same place regularly like a restaurant where he ate breakfast with his friends, write on the card, “Ask the server to seat you at a table and wait there. Call home 555-555-5555. I will pick you up.” Keep in mind, at this stage he will get lost more often, even when going to familiar places. Men are less likely to admit to being lost and may feel they need to keep it a secret.

Being lost can create feelings of panic. If you are with your loved one, reassure her when she feels lost, disoriented, or abandoned. Letting her know she is safe. Do not correct her fears, it will only reinforce her feelings; instead, redirect her. For example, if you are at home, say something like, “We are spending the night here tonight.” “You’re safe, I’m here with you.” “We’ll go home in the morning after some shuteye.” 

You may have to repeat the reassuring phrase several times. This gives her permission to relax knowing she still has the option to go “home” in the morning.

Moderate Dementia

When your loved one reaches the moderate stage, get them a dementia medical alert bracelet. Opening the clasp requires two hands, making it very difficult for someone with dementia to remove it. The typical information on the bracelet includes their name, medical condition, for example Alzheimer’s, and instructions to call your number or the number of a monitoring service.

As a precaution, take a picture of your loved one each morning after she dresses for the day. If she does wander off, show law enforcement the current photo of her in that day’s clothing.

There are also subscription monitoring services which supply jewelry or watches with GPS (global positioning system) or RFID (radio frequency identification) locators so that when she wanders you can locate her. Another option is GPS or RFID locators placed in her car, on a motorcycle, scooter, or other vehicles.

Wandering may increase when there is a change in routine, like moving to a new living space, living with new people, joining a day care program, travel, or any other change in her environment.

Moderate Dementia Wandering Levels

Furthermore, there are different levels of wandering.  If she is wandering around the house picking up objects and putting them down and no one is getting hurt, let her do it.

Another form of wandering is constant agitated pacing. It can be taxing on your nerves. Your loved one may be expressing a need to get away or go home. It can be hard to manage. It may be that something is scaring her. This could be due to a hallucination or not understanding what she sees, hears, or smells. It may also be caused by the brain damage from dementia and is not something she can control, that can cause agitation.

If you can’t stop her from wandering or pacing by reassuring her she is safe or by giving her a task to redirect her energy, you may need to change your tactics. Give her a safe space in your home or yard to wander around. Or go for a walk together during the day to exhaust her enough that when Sundowners sets in, she won’t feel the need to wander. 

If she is very active, ensure she is eating enough food and drinking enough liquids. If she is underfed or dehydrated, this will add to her confusion and may cause delirium.

A Real Life Example of Wandering and Dementia

When my diabetic father could no longer drive, he elected to walk. Because he walked, his blood sugar control improved and this occasionally caused low blood sugars. He was living on his own when my sister found him unconscious one evening. He stayed in the hospital for a week. When he came out of the coma, his Alzheimer’s disease escalated to the moderate stage.

Because he lived alone, the hospital would not release him to our care. They sent him to an adult family home. He was too active for the staff. When they weren’t paying attention, he would leave the home and take a walk by himself.

This behavior combined with his anger at held prisoner when he considered himself healthy escalated his “bad behavior” and he threatened to kill his bed ridden roommate. They sent him to a series of higher security memory care facilities, each adding medications to control his behavior. Eventually he was on ten different medications for behavior control. The drug interactions caused hyperactivity escalating his bad behavior and spiked his blood sugars.

Taking It to the Next Level

When he arrived at the last and most secure skilled nursing facility, he asked the staff if he could go for a walk outside. After reviewing his file they said no. My younger sister and I would take turns visiting him daily and take him for walks, but it wasn’t enough. Because no one at the facility would take his needs into account, he took matters into his own hands. 

Even with moderate dementia, the skills from his former profession were still clear in his mind. He noticed an issue with the mounting screws of the three-foot by five-foot plate-glass windows in his room. When his roommate went to physical therapy, he partially closed the door to his room. Next, he removed the screws, and lifted the window out of its frame. He climbed out the window in his pajamas and slippers. Then he replaced the glass, and fitted the screws back into the frame.

The staff discovered his escape one hour later. None of their security cameras showed him escaping. They called the police. Thirty minutes later 9-1-1 received reports of an elderly man in slippers and pajamas walking against the traffic lights on the main highway three miles from the facility. 

The police brought him back to the facility. When the staff asked him how he escaped, he proudly demonstrated their security flaw. Their maintenance staff discovered 30 percent of the facility’s windows had the issue, which they repaired. 

The Final Straws

When he could no longer exit via the window, he staked out the main entrance. He would charm the lady visitors. Then he would gallantly escort them safely to their cars after their visit and go for his walk. After two more escapes, the facility put an alarm band on his wrist that sounded the alarm each time he neared an exit door.

Employing his natural charisma, he hugged his favorite nurse when she left for the evening. He saw her punch in the exit code and noticed the visitor code printed on a label next to the alarm pad. The next day he snuck out one final time. On December 23rd the facility gave us five days to find another location for him to live. They were ready for him to leave. That’s when he moved in with my husband and me.

Identify the Triggers for Wandering

If he is having frequent wandering episodes, ask yourself the following:

1. What is happening before the episode?
2. Can you identify a pattern leading up to the wandering?
3. Does it happen around the same time every day?
4. Does it happen when he was asked to do a specific task like bathing or changing his clothes?
5. Are there other people living in the home? How are they reacting to his wandering within the home?
6. What is the noise level in his living environment?

Use the Meltdown Trigger List to identify the patterns triggering wandering. Once you figure out what may be causing the wandering, you may be able to manage it more easily. If you can’t identify the trigger, it may be the dementia driving the behavior and all you can do is redirect him or distract him. Then teach your family and friends how to redirect and distract him so they can give you some much needed respite.

Create a Wandering Recovery Plan 

Create a recovery plan around the dementia and wandering. Just because they haven’t done it yet, doesn’t mean they won’t. Once they wanders off, you will have the same gut-wrenching feeling as losing your child in a crowd. 

Here is a guideline adapted from the Alzheimer’s Association wandering plan:

1. Create a list of friends and family you can call for help. Make sure you have them on your cell phone contact list. Have a written list available for anyone who cares for your loved one when you are not there.
2. Ask your friends, family, and neighbors to call if they see your loved one alone outside.
3. Have your daily photo of your loved one handy, along with a close-up photo and their updated medical information available.
4. Know the dangerous areas in your neighborhood, such as stairwells, thick foliage, ravines, bodies of water, tunnels, bus stops, bridges, and heavily trafficked roads.
5. Is he right-handed or left-handed? Those with dementia tend to wander in the direction of their dominant hand. This may help you narrow down the search.
6. Create a list of places your loved one may wander. This could be places where they once lived, locations of former employers, places of worship, stores, bowling alleys, their favorite bars, restaurants, or coffee shops.
7. Consider enrolling your loved one with a wandering response service.

If your loved one does wander off, limit your search time to 15 minutes then call 9-1-1. They will want to know the where and when your loved one was last seen. 

Your loved one’s getting lost is jarring for you and your loved one. Once recovered, your loved one may be in shock and they might not know you when you are reunited. You may also notice further mental decline. If this happens, it will be permanent.

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Tracy Cram Perkins is a dementia caregiving survivor and blogger. Her twelve-plus-years of experience caregiving for two parents with dementia provided the nucleus of  Dementia Home Care: How to Prepare Before, During, and After. She experienced the depression, anxiety, and guilt which comes with dementia care and recognized each person’s journey with dementia follows a different path. This guide grew from the questions presented by family members and friends overwhelmed by caregiving challenges and the frustration of not being able to find caregivers hands-on answers in one book.

Tracy believes that the sound of our laughter and the memories we create with others are the most important things we leave behind. She believes laughter is an important part of the caregiving equation.

According to Tracy, the Surgeon General’s warning for laughter could read, “Warning, laughter produces chemicals known to the State of California to be cathartic and to make you feel better. Other states of mind may follow.”