Out for a walk.
IS WANDERING JUST A SYMPTOM OF DEMENTIA, or is it also symptomatic of providers' limitations?
The driving force that urges people with dementia onward often overcomes family caregivers' reluctance to seek institutional care. Before OBRA, it drove providers to chemical and physical restraints. Now it drives the installation of locks, gates, barriers, alarms, gardens, and walkways. When they fail, fatally, it's driven juries to award multimillion-dollar verdicts.
There's no simple solution, nor is there even consensus about naming it. Most providers call it wandering--and a major problem. The relentless back-and-forth can drive staff and other residents to distraction. It increases risk of falls, fractures, dehydration, hypothermia, hospitalizations, and death. And when residents get out (elope), but can't or won't return, it jeopardizes their safety as well as providers' reputations and revenues. One 1993 study (D. Kennedy, Security Journal, October) estimated one resident death weekly after eloping; another noted 70 percent of elopement claims involved deaths. Who's at risk? Any client, say experts, because inability to return is a first sign of mental impairment; any provider, say attorneys, because accepting a client implies a promise to provide care.
"When a resident not deemed capable of self-preservation departs undetected or unsupervised, it's almost always a violation of the standard of care," says Boston trial lawyer George Field of Field & Roos, LLP. "Day care, assisted living, and other facilities' solicitations mention security, supervision, and safe environments. That assumption of responsibility carries a duty."
So many residents elope that his firm established a sub-specialty to handle plaintiff's cases. "Research shows that around 50 percent of Alzheimer's patients wander or elope, and 20 percent of nursing home residents wander into unsafe situations," says Field. "I'd be happier without these cases. Facilities can put in place very productive measures, and enroll residents in the Alzheimer's Association's Safe Return. If facilities do cost-benefit analyses, they'll conclude they're worthwhile investments."
Providers are rethinking design, staffing, and programming, putting themselves figuratively into residents' shoes. But the first step is considering their own.
Walking in wandering shoes
Whether you wear whites or wingtips, you probably cover many miles: managing by walking around, running to meetings, even performing strenuous activity. You may pace to ponder problems. Seeking food or friendship, you go "out" to eat, even if it's to only the facility lounge. Eventually, your inner clock pushes you home, perhaps to care for kids, partners, or pets. To burn or gain energy, you may work out at the gym. Frustrated or bored, you might seek new scenery. Chores done, you may stroll over to neighbors, or through favorite shops.
What if you suddenly lost your memory? You'd look for someone or something to explain who you are. You'd search for your home, try to go where you belong. You might agonize about those left behind or work left undone. (Ever have nightmares about forgetting to finish homework?) And you'd panic if you couldn't get out of the small, strange, frightening place where you're trapped.
Even after "adjusting," you'd long for freedom to move around, the stimulation of change, stress release outlets, the comfort of someone who cares, the chance to do something you enjoy, the food you like, a way to connect. How can you sit and do nothing? Why should you? So you'd walk, and search--and they'd call it wandering.
"Colleagues call it sightseeing, but I prefer 'exploring,'" says Joanne Koenig-Coste, MEd, president, Alzheimer Consulting Associates, Framingham, Mass. "It's an effort to see something different, or seek emotional safety. You have to understand messages behind the behavior."
Some people flee Alzheimer's itself. In her young patients' support group, Koenig-Coste says she has a working man who says he keeps moving to get ahead of dementia. "Most people with Alzheimer's can't articulate or reason through feelings," she says. "We think of it as a disease of behaviors. It's actually a disease of emotions."
Residents rattle locked doors because they don't feel safe, not necessarily to escape, she says. "Instead of making the place secure, make the resident feel secure," she advises. She recommends providing safe places to explore, camouflaging exits (with painting or wallpaper), color-coding units, putting pictures and colors on ceilings, and providing distinctive personal room colors that become reassuringly familiar, enabling residents to find familiar havens that feel safe.
Wandering, or walking, though difficult to deal with, is not necessarily a problem to be fixed, says psychologist and former nurse Barbara Ensor, PhD, of Baltimore's multi-level Stella Maris facility.
A resident's history often explains behavior. At Stella Maris, the man and woman who go up and down hallways, checking doors and asking if everything is okay are a former night watchman and nursing supervisor, still enacting their jobs. At many facilities, women's afternoon agitation, often a reaction to internal alarms prompting them to begin meal preparation and after-school child care, can be relieved by allowing them to set the table or prepare meals.
At one facility, staff repeatedly redirected a new admission who went to the door each evening. One night, the nursing supervisor watched him.
He opened the door, called, "Here, kitty, kitty," then closed it, satisfied. Subsequently, he was allowed to fulfill his longtime responsibility. "Let them complete the behavior uninterrupted, then discuss it with family, so you can see pattern and meaning," says Ensor.
Counsel families so they aren't embarrassed if residents walk away during visits, says Ensor. Explain that it's part of the disease, that it may stop spontaneously, and to walk along.
"Just walking" provides pleasure, she notes. People strolled and chatted in more leisurely times.
Facilities can help by providing conversational bridges. Residents can accompany or push nourishment carts, handing out items. One resident who accompanied staff delivering mail could say only, 'Good morning. How are you?' but others responded, and it kept her happy for hours, says Ensor.
Maintaining productivity helps use excessive energy that plagues some patients. Giving them dusters, mops, laundry, or rakes, regardless of how well "jobs" are done, focuses drives arising from inactivity. An Australian facility provides washing gear and a well-washed, inoperative, car.
Engaging residents in meaningful activities is eased at St. John's Lutheran Home, Billings, Mont., through "Elder Chabars," pets, and its uncommon ADL philosophy.
Chabars (Hebrew for companion) are specially trained high school and college students who offer conversation and activity. They earn hourly wages plus $1-per-hour scholarships. "We recruited the best and brightest students, who reach out to elders in friendship," says administrator David Trost, vice president of management and outreach services. "They're here during sun-downing-- what better time?"
Trost believes most wandering is searching for past homes and daily life. "if asked what you do at home, you'd say your ADLs are cooking and cleaning, not toileting, transferring, and grooming," says Trost. "It's kind, not cruel, to keep residents busy with the real activities of daily life. Instead of walking 43 feet in physical therapy, they can enjoy walking the dog. You can ask residents if they've washed their bed linens today. It may take three hours to wash, dry, and remake the bed, and you can always do it again. They feel productive, and they're comforted because it feels like home."
Men and women enjoy tasks including gardening, weeding, watering, mowing grass, raking, and pond-skimming, as well as outdoor activity groups at the 527-bed Parker Jewish Institute for Health Care and Rehabilitation, New Hyde Park, N.Y. "It's nice to get out and do what they used to do," says Martha Wolf, Alzheimer's Center manager. "Space and freedom reduce agitation from feeling penned in, and give a sense of control."
Researchers used the Pittsburgh Agitation Scale to measure behaviors before and after St. John Specialty Care Center, Mars, Pa., opened its $200,000 natural habitat. Increased outdoor access markedly decreased residents' stress and agitation. Larger than half a football field, it includes figure-8 wandering paths, color-coded handrails, herbal garden, activity areas, gazebo, walls in lieu of fencing, photosensitive lighting (until 10 p.m., per resident vote), community concert space, and playground. "Without family, many residents have minimal chances of getting out," says neuropsychologist Paul Nussbaum, PhD, neurobehavioral services director. "Playgrounds encourage grandchildren's visits."
Many internal environments, like some gardens, don't fulfill residents' needs, despite their appeal to staff.
"Even after losing other cognitive abilities, people take cues and clues from environments about how to behave," says Cornelia Hodgson, AIA, of Dorsky, Hodgson + Partners, Cleveland. "Hospital-like environments say something's wrong. But we can also confuse people's sense of reality and cause more disorientation. Some things are infantile and illogical. My test is, 'Would you have it in your own home?' If not, then why do it?"
Scenic summer murals and cartoon-like, idealized Victorian storefronts are no substitute for natural light, windows, views, and usable activity areas that invite participation. "Frankly, residents are bored. Provide interesting options, like the gift shops, lounges, and coffee shops at hotels, and wandering decreases," she says.
Indoors or out, walkers tire, so include adequate seating along walkways and corridors, she says. Placing tasks at seating areas, such as towels to fold, can also engage residents.
Despite difficulties, some providers see positive aspects to wandering. "Usually, their bowel, bladder, or legs let residents down," says Stella Henry, RN and administrator of the 84-bed Vista del Sol nursing home and ALF in Los Angeles. "Walking alone or with staff members helps them to stay ambulatory, sleep better, and socialize with residents in different households,"
Admission, and the change of routine, place, and unfamiliar faces compound anxieties and promote searching for something familiar.
All staff members should view wandering as physical communication, determine what residents want, learn appropriate responses, and help provide activities, say experts. But first, they must know how to introduce themselves and establish positive relationships.
"Most of us are too embarrassed to say we don't remember acquaintances we encounter, so we pretend, and wait for cues," says Walter Hoszkiewicz, NA, Sowerby Consulting Group, Lyndeborough, N.H. "When residents don't recognize you, identify yourself through body language and words as a friend who knows them. Put an arm around them, say, 'Mary, It's Walter. I'm so glad to see you. I've enjoyed our walks,'"
Providers should check the fit of shoes, and be sure they're neither slick nor sticky, he notes. Hearing and visual problems pose additional hazards. Walkers who keep their heads down may bump into others and equipment, failing to hear warning calls. Since they're apt to trip over cords and "Wet Floor" signs, it's better to close areas during cleaning.
Pacing increases nutritional and fluid needs, and the risk of weight loss. When residents are too agitated to sit for meals, provide finger foods such as vegetable sticks, fish sticks, and chicken tenders, which they can carry with them.
Residents may be used to walking long distances, particularly if they formerly lacked cars and walked extensively to work or shop.
One resident walked 12 to 16 miles daily when it was all he had to do, says researcher, author, and consultant Maggie Calkins, PhD, of Innovative Designs in Environments for Aging Societies, Kirtland, Ohio. "There's nothing therapeutic about walking in circles, unless you give goals like charting mileage, or have meaningful destinations," she says. "For radical reductions in 'aimless wandering,' provide familiar domestic, work, and community activities that make meaningful contributions."
Facilities can tap staff interests as resources for residents with lifelong pursuits. For example, Mike Wisniewski, maintenance director at The Arbors of Bedford [N.H.], a 72-bed dementia care AIF, laces up his running shoes to accompany residents who are avid joggers, providing male camaraderie and supervision.
Dancing, walking clubs, tracks, stairclimbers, and other exercise equipment are appealing, even to residents who lacked prior interest. "Simply being with residents makes walking purposeful and positive," Hoszkiewicz says
Providing exercise, walking, and activity areas outside Alzheimer's units benefits other residents who become agitated by the ceaseless back and forth, sometimes lashing out or deliberately tripping walkers who invade their personal space. Staff can accompany several restless residents for a snack, activity, or visit in another part of the building.
Altercations often arise when residents enter rooms of other residents, particularly those who are territorial. To decrease confrontations, staff members should avoid placing territorial residents in rooms at hallway ends, since these are most frequently investigated. Converting at least one end room into a parlor or activity space encourages residents to turn in that direction, particularly when cognitive turning functions are impaired, says Calkins.
Despite the difficulties, one thing is clear: rethinking "wandering" is a positive stride in resident care.
Fort Collins, Colo.-based freelancer Wendy Bonifazi, RN, APR, is a regular contributor to CLTC.
When residents wander
The following six steps should be your guide to when residents are thought to be missing because of wandering:
1. Notify staff Immediately; search the vicinity thoroughly. Do NOT wait for end of meals, shifts, etc.
2. Notify 911 and the police within 15 minutes; earlier, if hazardous conditions exist, (such as traffic, water, woods, inadequate clothing, life-threatening illness, darkness, or inclement weather). "Clearly state the missing person is at risk, confused, and endangered because of Alzheimer's and memory impairment," says Gerald Flaherty, Massachusetts Alzheimer's Association special projects director. Identify your police contact Notify family.
3. Call Safe Return's emergency line (800-572-1122), which faxes alerts to local media, hospitals, shelters, etc.
4. Notify media if the person has a life-threatening illness, it's dark, or weather is severe. They can help-and they'll hear from police, anyway.
5. When a resident is found, avoid confrontation and questions that may cause further flight Approach from the front, hold the visual focus, be calm and reassuring, use the person's name, and mention something specific that he or she enjoys, advises Flaherty.
6. Notify police, family, Safe Return, and others.
Lost and found: Safe return
Providers obviously need to purchase and maintain adequate and appropriate security systems. But even with the best of buzzers, locks, bells, mats, staff, and programs, residents get lost, including those not considered at risk.
"There's no precursor preliminary level of wandering, so people don't see the danger," notes Martha Wolf, Alzheimer's Center manager, Parker Jewish Institute for Health Care and Rehabilitation, New Hyde Park, N.Y.
Search and rescue organizations generally find lost people with dementia within 1.5 miles, usually 100 yards from roads or open fields. Typically, they "go until they get stuck" by manmade or natural barriers such as fences, walls, and waterways. Cognitively impaired people often fall into creeks, lakes, and ditches; they tend to crawl into thick brash and briars. Rescuer and researcher Robert Koester found that 67 percent cross roads, and only 1 percent answer rescuers' calls. Injuries and fatalities often occur after 12 hours.
Since opening five years ago, The Wealshire, a 144-bed sheltered, intermediate and skilled dementia facility in Lincolnshire, Ill., has required families to pay $25 toward enrollment in the national Safe Return program, which provides an identification number and toll-free number on clothing labels, cards, and engraved bracelets. The Wealshire covers the $15 balance and any replacements.
It's never needed the program's help returning or finding wanderers, nor has the 122-bed Celina [Ohio] Manor. But every admission to its dementia units gets an ankle alarm and Safe Return registration, compliments of the facility. "We know they can get lost, so we wanted to take every avenue to protect residents and help families, whether they remain here or move on," says administrator Noreen Schwieterman.
Despite keypads, bolts, hourly checks, extensive activities, and community excursions, residents can escape, says Sally Staggert, community services director at Franciscan Health Community, St. Paul, Minn., making careful screening essential. "'Marketeers' try to fill beds at all costs," she says. "It's crazy to put somebody at risk."
Man versus machine
After handling more than 750 lost patient cases, Gerald Flaherty, Massachusetts Alzheimer's Association special projects director, is appalled when providers let dementia patients go out alone.
"Supervision is better than any alarm or technology," he says. "Believing residents can find their way back is a major misconception. Research indicates getting lost is as common as memory loss, and may occur earlier. Often they haven't wandered before because they were watched." At the least, he advises, time customary walks and implement searches when residents deviate.
People with dementia go into extraordinary places, including creeks and ditches, because they don't perceive danger, Flaherty explains. Sudden noise, traffic, or confusion can trigger catastrophic reactions that send panicked patients crawling off-track to hide in bushes or grasses. They're frequently too afraid to answer searchers' calls. If they experience "paradoxical undressing" in cold weather (when core body temperature falls to a critical level peripheral vasoconstriction fails; the resulting sudden vasodilation could lead to an exaggerated sensation of heat and a consequent attempt by the victim to undress), hypothermia can occur in 30 minutes.  Since police may not understand dementia behaviors and search techniques, the nationwide Safe Return program, originated by New York's Alzheimer's Association, provides training and guidance for night searches and special trackers including ground-and air-sniffing dogs.
"Trying to resolve it yourself is a big mistake," he cautions "Spending more than 15 minutes before calling Police puts people at risk."
Here are some tips recommended by the experts.
* Keep recent photos of each resident; provide copies for local police files.
* Record locations of former homes, work, worship, relatives, shopping, restaurants, adult/childhood recreation, prior wandering patterns.
* Register residents in the national Safe Return program (Information: 800-548-2111).
* Call local Alzheimer's Association for information/training on prevention, search and rescue.
* Implement policies, procedures and full-staff training.
(1.) Wedin B, Vanggaard L, Hirvonen J. "Paradoxical undressing" in fatal hypothermia, J Forensic Sci 1979; 24:543-53.
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|Author:||Bonifazi, Wendy L.|
|Publication:||Contemporary Long Term Care|
|Date:||Sep 1, 2000|
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