Lost and Found

By Michelle Gardner

Those who care for Alzheimer's patients understand wandering is not uncommon and the activity is different for all patients. While most patients don't know why they are wandering, an inherent danger is getting lost.

"The ambulation and exercise of wandering is not bad for these individuals," says Dr. Andrew Conti, medical director at Seabrook Village in Trinton Falls, N.J., "but they may have sleep disorders that cause them to get out of bed at night and start walking." Combining these issues may prove to be dangerous to assisted living residents.

"Wandering can be as simple as walking around the house or getting lost in the city," says Conti. "One of the classic things we see is parking a car and not having the faintest idea where it is. Some patients may walk and walk and walk. Seabrook has an enclosed wandering garden so residents can't get lost."

Conti advises against medicating wanderers. "You don't want to tranquilize them; there is nothing you can give them," he says. "If you sedate someone with cognitive decline, you almost guarantee they will fall. As much as you don't want someone getting lost, you don't want to medicate them and cause more damage."

How Common is Wandering?

dbS Productions, a leading company in research and education in behavioral profiles of lost subjects, discusses the prevalence of wandering.¹ Most scientific studies look at the percentage of patients with Alzheimer's disease (AD) who wander within an institution, but a more difficult and perhaps meaningful statistic is how many people actually wander away each year.

The earliest study that examined wandering outside of an institution reported 26 percent of Alzheimer's subjects get lost each week. A more recent study of an Australian care facilities looked at critical wanderers and found that, on average, non-secure care facilities had an incident rate of one to two critical wanderers per year.

Butler and Barnett² examined missing-person reports from local law enforcement in Arkansas and reported one critical wanderer (a person who has left a facility and is no longer under a caregiver's supervision) per year for every 1,000 persons age 65 or older. Silverstein and Salmons³ contacted 463 caregivers who had registered with the Alzheimer's Association's Safe Return program in Eastern Massachusetts and found 27 percent reported a missing wanderer to law enforcement. This number agrees with a study conducted by the Virginia Department of Criminal Justice Services who contacted caregivers and found that 34 percent of the caregivers reported a missing wanderer to law enforcement. These numbers are attributed to the caregivers conducting successful searches themselves or the subject returns on his or her own. It appears more than 125,000 critical wandering incidents occur each year. In 2040, this number could grow to more than half a million.

Mild, Moderate and Severe

According to the dbS Productions Web site, Alzheimer's is being used by the general public to refer to any elderly person suffering from dementia. Everyone who suffers from AD has dementia, but not everyone with dementia has AD. In fact, researchers say Alzheimer's disease is used incorrectly since the disease can be positively diagnosed only after removing brain tissue for examination.

The chief characteristic of mild AD is forgetfulness. Becoming lost, especially in unfamiliar territory, is a common hallmark of the critical wanderer with mild AD. Wandering is reported in 18 percent of those suffering from mild dementia. The wandering is often goal directed and, since the wanderer still has sufficient facilities to use public transportation or drive, the search area expands quickly. Determining possible goals of the lost person will become a major emphasis for the search.

Moderate dementia is characterized by profound memory loss that interferes with daily activities. The Alzheimer's patient is dependent upon others, may become lost in familiar surroundings and has lost the ability to learn new material. Confusion often becomes worse in the evening, a phenomena called sundowning. Wandering increases and is often described as pacing or searching at this stage. The trigger is linked to the patient becoming agitated.

Patients with severe dementia suffer from serious impairment of mind and body. Unsteadiness, falls and reduced mobility should limit the distance the wanderer may travel; however, the overall incidence of wandering increases to 50 percent.

Types of Wandering

Classification of wandering remains in its infancy and at least 18 types have been described, but many of the terms overlap. Snyder et al⁴ was one of the first research teams to observe wandering in a nursing home. They classified wandering behavior as goal-directed searching, goal-directed industrious or nongoal-directed behavior. The searching wanderer was after an unattainable object such as a mother, home or abstract object. They often called out repeatedly or approached people in their fruitless quest. The industrious wanderer possessed an inexhaustible drive to accomplish a task or remain busy. Nongoal-directed behavior was aimless wandering. The patients might have been drawn by a particular stimulus, but their attention was quickly diverted.

Robert J. Koester, president of dbS Productions and an incident commander in search and rescue (SAR), says that, in Virginia, the second most common case for SAR is lost Alzheimer's patients. "Fifty percent of my cases come from nursing homes and the other half come from daycare centers or other residences," he says. "The people we look for in the mid-Atlantic region are those who have some kind of cognitive impairment. It could be a child who hasn't developed his or her spatial skills, it could be an Alzheimer's patient who is losing spatial skills or it could be a despondent person who goes into the woods to think or commit suicide."

Hikers and hunters in Virginia make up 10 percent of Koester's SAR missions, although profiles from groups around the country are reporting an increase in Alzheimer's cases. "It may be indicative of a growing Alzheimer's population," notes Koester. "Education to reduce these numbers hasn't occurred. Standards for Alzheimer's facilities can vary from state to state and there really isn't one place to go to find standards to follow."

An Education in Design and Safety

While Koester combines a master's degree in neurology with SAR, Mark L. Warner, AIA, brought architecture and gerontology together in his education. Now operating Ageless Design Inc., in Jupiter, Fla., Warner is still passionate about volunteering in nursing homes and observing how residents act and react in their environment.

"There are a lot of reasons why people wander, so you have to go to the foundation," he says. "What are they doing? What is on their mind? Alzheimer's patients have fewer cognitive tools to understand their environment, so there is more confusion involved. They may get up from one chair to sit in another, forget what they intended to do and find themselves walking around."

Warner's self-education in daycare centers led to this belief: If you don't understand diseases or age-related conditions, there is no hope for designing an environment for people with these conditions.

Ageless Design and its related Alzheimer's store identify cognitive and behavioral challenges associated with Alzheimer's patients and their caregivers. "We look for ways to avoid accidents, minimize injury in the event of accidents or get help when accidents happen."

An important question for daycare and assisted living facilities to ask is, "How dangerous is wandering for the residents?" In the earlier stages, it can be beneficial for exercise, exploring and fresh air. As they get more aggressive or are at risk of falling, elopement (leaving a facility) may put lives at risk.

"For elopement, diversions are very good," says Warner. "A fire exit is beneficial to safety, but that same door is a means of escape for someone with dementia. Camouflaging a door by making it look like a bookshelf or continuing the handrail or paint across the door is very effective. Look for solutions that work for the individual. As the person progresses in the disease, you have to address different challenges or the same challenges in a different way."

The placement of doors is important, says Warner. "I avoid a direct line of site to doors. Putting doors where they don't make sense eliminates the likelihood of a patient opening it and going out."

Putting Protection in Place

Miriam Brewer, associate director, residential care initiative for the Alzheimer's Association in Washington, D.C., finds that most assisted living facilities have devices in place to prevent a resident from leaving unobserved. While the staff may feel restricted by the locks and alarms, the facilities try to provide wandering gardens to give a person with dementia a safe place to wander.

"It is very expensive to equip a facility or home with alarms and locks," says Brewer. "Smaller assisted-living homes try to provide a home-like environment, but safety must be in place before you get caught up in the color of wallpaper."

"It has been estimated that a person with dementia has a 60 percent to 70 percent chance of wandering," says Brewer. "We encourage each patient to have an identification bracelet. There are people who wander by foot, but some still drive. Once they get behind a wheel of car and cannot remember how to get back to point A, that is a whole new set of problems."

In an effort to reduce the occurrence of elopement, wandering paths in assisted living facilities are becoming more common. "The area may have benches and flowers and it gives residents an opportunity to wander is a safe, controlled environment," says Brewer. "Enjoying nature can have a healing and calming effect. There are a number of benefits."

For a complete list of references, log on to: www.alsuccess.com.

Protecting Residents: Charge Nurse Prevents Wandering

By Kelli M. Donley

Debbie Hilgren-Besnecker, LPN, watches her residents with a hawk's eye. Monitoring their activities and keeping exits locked, the charge nurse of the dementia unit at Monmouth Crossing in Freehold, N.J., protects her residents as though they were family members.

"I have a 16-bed unit and all of the doors are secured," Hilgren-Besnecker says. "There are alarms on the doors and we have punch codes at the two outside entries. We have adequate staff and we monitor residents through frequent checks during the day. Since we have a small group, we are always busy with activities and the elopement risk, while it is always there, is low for our small unit."

Having worked for the state hospital system for several years, Higren-Besnecker transferred to Monmouth Crossing seven months ago. The change, she says, has provided immense job satisfaction.

"I finally can say I love coming to work every day," she says. "I've really found my niche by working with this population. We are like a family. The residents look forward to seeing you every day and while they don't remember day to day, they do remember somewhere that they have warm feelings for you. It is a close-knit group and they watch out for each other."

Working with people you truly care for is important, she insists, because their constant security and protection is always on your mind. One of the challenges Hilgren-Besnecker and her staff face is helping calm residents who want to leave the facility.

"We have residents who get restless and say, 'I have to get going. I have to go home. I have to go to work,'" she says. "I try different strategies to redirect them with activities. I'll say, 'Oh, the weather is just awful out there today.' And they'll say, 'Well, where am I going to stay,' and I'll say, 'I have a great room. Let's go look at it.' And they'll be pleased with the accommodations."

However, when spring and summer come, calming residents with weather woes doesn't work.

"In the nice weather, I'll say, 'It is such a nice day. We are going to have a picnic outside,' and I just try to redirect them," she says. "And 90 percent of the time it works. If you have a consistent staff, they will trust you and they will realize that everything is okay."

When redirection doesn't work, Hilgren-Besnecker says she calls a family member to help.

"I have people who have become quite upset and I'll dial a family member," she says. "All of the families here are very supportive and easy to work with and you can call them at any time. Usually just a few comforting words from their family will do the job."

Hilgren-Besnecker says she keeps up with security and dementia issues in the industry by attending seminars and brainstorming activities ideas for residents that will keep them happy within the facility.

"With our residents, we try to make it they don't realize that they are secured. We try to make it feel more like their home."

Resource Guide

Contact the following companies for alarms, locks and other safety devices for assisted living or adult daycare facilities.

American Medical Alert Corp.
www.amacalert.com

Care Technologies
www.caretechnologies.com

Code Alert/RF Technologies
www.rftechnologies.com

EXI Wireless Systems Inc.
www.exi.com

Fidelity TeleAlarm LLC
E-mail: fta@fidelitytelealarm.com

Instantel
www.instantel.com

Jeron Electronic Systems Inc.
www.jeron.com

Behavioral Profile of Alzheimer's Patients

• They go until they get stuck.
• Appear to lack ability to turn around.
• Subject oriented to the past; disease sends them back in time.
• Coexisting medical problems that limit mobility are common.
• 72 percent have previous history of wandering.
• 67 percent may cross or depart from roads.
• 89 percent found within one mile; 50 percent found within one-half mile.
• 50 percent found within 33 yards of road.
• May attempt to travel to former residence or favorite place.
• Will not leave many verifiable clues.
• 1 percent will not cry out for help.
• 1 percent will respond to shouts.

Source: www.dbs-sar.com

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