The following incidents, culled from local newspaper accounts, illustrate the problem of older adults with dementia wandering away from care facilities.
Hayes Robinson, 76 years old, was ready for discharge from a hospital on Chicago's west side on Sunday, July 29, 2007.1 He told the staff that he could walk home, and despite the patient's diagnosis of Alzheimer's disease, a staff member allowed him to leave the hospital on his own. He became lost and searchers were unable to locate him until Tuesday evening when he was found walking on the South Side of Chicago.2
Mary Ross, 77 years old, was taken from her assisted living facility to a physician's office, where she disappeared from the lobby on Thursday, October 4, 2007. She was never returned to the assisted living facility and was not reported missing until Friday, October 5.3 The following Tuesday, she was identified as a patient who had been admitted to a hospital without identification on the day she went missing.
The body of a missing man was discovered in an empty pond 13 days after he wandered away from a hospital. Eugene Faulkner, 64 years old, had Alzheimer's disease and depression and left the hospital without being seen.4
These cases represent common challenges in caring for people with dementia; this article will explore best practices to prevent people who have dementia and are being cared for in the hospital from wandering away. (For more on why the problem is so grave, who is affected, and how difficult it is to find a person who has wandered away, see Why Assess for the Risk of Wandering? page 64.5–9)
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Watch a video demonstrating the best practices for assessing the risk of wandering in hospitalized older adults at http://links.lww.com/A306.
A Closer Look
Get more information on why it's important to assess the risk of wandering in hospitalized older adults on page 64.
Try This: Wandering in Hospitalized Older Adults
This shows the best practices in the original form. See page 67.
APPROACHES TO PREVENTING AND MANAGING WANDERING
In people who have illnesses that result in dementia, such as Alzheimer's disease, the term wandering is used to mean two different, sometimes associated, behaviors. Algase and colleagues described wandering as the tendency of nursing home residents to exhibit persistent walking, elopement behavior, spatial disorientation, or a combination of these10; this will be called wandering behavior in this article. Wandering is also frequently used to describe the situation in which someone with dementia has become lost in the community. Not all people with dementia exhibit wandering behavior, but all are at risk for wandering away from the care setting and becoming lost in the community.6 As illustrated in the Faulkner case, tragic consequences can result if the person is not found quickly.
This article will focus on
- accurate assessment of at-risk patients.
- provision of intensive supervision.
- implementation of appropriate actions if a person with dementia is missing.
To accurately assess a patient, begin with an examination of the patient's admission diagnoses; patients with any type of dementia, including Alzheimer's disease, frontotemporal dementia, Lewy body disease, and multiinfarct dementia, should be considered at risk for wandering. When interviewing the patient or the patient's family members or caregivers, it's important to ask whether the patient has ever received a diagnosis of dementia or Alzheimer's disease. Because people who are not health care professionals may not understand the difference between the two, it's important to ask about both. Because a diagnosis of dementia often occurs years after initial symptoms appear,11 families of older adults should be asked whether the patient has exhibited problems with severe memory loss or errors in judgment or has had difficulty finding her or his way in familiar environments.
Here are some examples of assessment questions:
- Is your relative having difficulty doing tasks that are routine, such as preparing meals, managing medications, or keeping a schedule?
- Is your relative making judgment errors, such as leaving the stove on, not wearing the proper clothing outside, or going to bed too early?
- Does your relative become lost in familiar places?
If the answer to any of these questions is affirmative, there may be an undiagnosed dementia, and the patient should also be considered at risk for wandering away. (For more detailed information on assessment in this population, see "Recognition of Dementia in Hospitalized Older Adults," January.)
Patients diagnosed with delirium, or those who present with behaviors that are characteristic of delirium (for example, changes in the sleep–wake cycle, visual hallucinations or misinterpretations, or agitation), are also at risk for wandering away because of the cognitive impairment that accompanies delirium.12 These patients can be assessed using the Confusion Assessment Method (see "Detecting Delirium," December 2007).
According to an Australian study, health care professionals, including nurses, in three hospitals identified "inappropriate building design, an overworked and underresourced system, and limited staff knowledge and understanding of dementia as major constraints to best practice."13 In a study of nursing home incidents in which patients wandered away from facilities, a frequent cause was inadequate care by the staff, including a lack of effective precautions and improper use of alarm systems.14 Therefore, educating staff may be necessary to ensure that they have the knowledge and skills needed to conduct accurate assessments and provide safe, adequate care to those at risk. Additionally, the physical layout of units could be assessed to identify strategies to improve the safety of people with dementia.
In the case of Hayes Robinson, the patient was allowed to leave the hospital by himself without being assessed for his risk of wandering. Possibly a nurse was unaware of his dementia diagnosis and determined, on the basis of a brief conversation, that he could leave safely by himself. Nurses must exercise much caution in using a rapid screen to determine whether someone has dementia or not because symptoms of dementia typically fluctuate, which can create the appearance of a person who is cognitively intact.15
One of the significant challenges in providing expert care for patients with dementia is ensuring that intensive supervision is provided from the moment the patient enters the facility until discharge.
Identifying at-risk patients. Because the patient will be cared for by a variety of nursing and allied health care staff, it's important to have a system in place that identifies which patients need intensive supervision. For example, colored wristbands are often used to identify patients who are at risk for falls and require special supervision to prevent falls from occurring; nursing leaders in the hospital can develop and implement a similar system for enhanced supervision of patients with dementia or other cognitive impairments. Patients might wear armbands or gowns of a specific color, and charts could be housed in folders or binders of a specific color, indicating the patient's risk of wandering in a confidential and sensitive manner. Indicators of the need for intensive supervision could also be placed on patients' nametags or on doors to the rooms. Creative codes could be used to preserve patient confidentiality, such as a watchful eye symbol or a check mark, although evidence supporting these ideas is not yet available.
Strategies for intensive surveillance. When the patient is on the nursing unit, a variety of strategies can be employed to ensure intensive surveillance, as detailed in the accompanying Try This approaches on page 67. Bed locations can be chosen to optimize surveillance by staff members, including rooms easily observed and impossible for patients to exit without going past the nursing station. All nursing staff should be encouraged to keep an eye out for any patient at risk for wandering away, even when not assigned to that patient (such observation can be facilitated by adoption of an identification system for at-risk patients, as described above). Nonprofessional paid or volunteer staff, if available, may also be employed to provide intensive supervision of patients with dementia, particularly when additional problems with agitation or confusion may increase the risk of wandering away.
Involving family members. Family members may be especially helpful if they can remain with the patient during hospitalization. A familiar face, voice, and approach can reduce agitation, thus soothing patients who may otherwise wander off to search for loved ones.16, 17 Overall, the presence of family members results in better care of patients with dementia and can result in a reduced nurse workload.13 Nurses can help family members work out a schedule that maximizes family support during the hospital stay. Private rooms, extended visiting hours, provision of comfortable chairs or cots for rest, and a tour of hospital resources, including the cafeteria or vending machines, can also help encourage relatives to stay.
In other hospital areas. Patients are also at risk for wandering away when not on the nursing unit. Patients waiting to be seen in the ED or clinic or for a test to be conducted are often left unattended. Impaired short-term memory may cause patients to forget why they are sitting in a waiting room or strange place, and they may walk away in an attempt to find a familiar face or location. Whenever patients with dementia are transported to other areas of the hospital, it is critical that all hospital employees who have contact with the patient be aware of the risk of wandering and provide intensive supervision. Even if a particular patient seems to understand that she or he should remain in a certain location, that patient may not remember those instructions just moments after a staff member leaves the area. If a clerk is present in the waiting room, the patient could be seated close by to facilitate observation. Another possibility would be to designate a special waiting area where staff members are present at all times, rather than keeping the patient in the usual waiting area. Nursing administration can facilitate the discussion with ancillary departments on how to keep patients safe when they are in these areas awaiting physical therapy, X-rays, scans, or other procedures or services. The cases of Mary Ross and Eugene Faulkner illustrate the importance of providing intensive supervision throughout the entire hospital experience. Both of them were in waiting areas when they wandered away from the facility.
Other strategies. Besides ongoing surveillance, other measures can be used to encourage patients to remain in the hospital. People who have dementia typically respond to what they see in their immediate environment; if they frequently see people exiting the unit by the elevators, stairs, or doors, they may be more likely to attempt to leave.18 Triggers such as their clothing and suitcases can be placed out of their view or taken home by family members. Shoes should be concealed when not in use.
Electronic monitoring. There are a variety of commercially available monitoring systems. Some need to be permanently installed in a particular setting (for example, the dementia unit of a nursing home); others can be worn by individual patients. At this time, the most available and widely used technology for individuals is Project Lifesaver, which is typically acquired by local law enforcement agencies. It consists of receivers and transmitters; the transmitters are loaned or sold to patients who need monitoring and are worn on the wrist like a watch, although it has a nonremovable band. If a person wearing the transmitter becomes lost, the law enforcement agents can use the receivers to track the transmitted signal and find the lost person. This technology is efficient, and most people who wear this device are found within 30 minutes. To find out how your community or patients can participate in Project Lifesaver, go to www.projectlifesaver.org/site.
If patients with dementia wander away, it's likely that their inability to recognize environments and negotiate a familiar path (sometimes called way-finding deficits) caused by dementia will prevent them from quickly finding a safe location. From the moment a person wanders, she or he is at risk for death. The most common causes of death during wandering episodes are exposure (hyper- or hypothermia), drowning (even in shallow water), and being hit by a vehicle.8 Any of these can happen quickly when a person is missing, so it's imperative to begin the search immediately. In order to facilitate an effective search, all hospitals should have in place a specific policy on finding lost, cognitively-impaired patients.
There are three critical phases of the search:
- the initial "hasty search" of the immediate area
- the expanded search of the entire facility
- the search outside the facility
In each of these phases, two principles are critically important. First, there is no predictable action that a person with dementia may take after becoming lost. Individuals have been found in locked rooms, closets, ventilation ducts, garbage containers, woods, bushes, natural areas, junkyards, under stacks of furniture, and many other seemingly illogical locations. Therefore all areas, no matter how inconceivable, should be identified and thoroughly searched. Second, people with dementia who are lost rarely ask for help and will rarely respond to hearing their name called. When searching, it is critical to make a thorough visual inspection of every space where the person might be.
All available unit personnel should be mobilized to search the immediate area where the person was last seen in the initial "hasty search" phase, which should take no more than 30 minutes and begin with a coordinator assigning areas to each searcher so that the immediate area is searched in its entirety. The coordinator receives reports from each of the searchers and makes the decision to move to the next phase.
The expanded search uses the same principles—a coordinator and a planned search strategy—but additional personnel can include security and housekeeping staff, who are generally familiar with the physical layout of the facility. This phase might last several hours, depending on the size of the hospital.
The local law enforcement agency should be called for assistance fairly quickly, particularly to search in areas outside the hospital. There are no formal guidelines, but a swift response is critical because the person with dementia is in the most danger outside the facility. A reasonable time frame would be 30 minutes to two hours after the person was noted to be missing (the expanded search inside the facility may continue even after the police have been called). Every local law enforcement agency should have a specific policy for searching for cognitively impaired citizens, and that policy should be enacted when they are notified by hospital representatives that someone is missing. Generally, once the law enforcement agency is notified, it becomes the coordinator of the search. (To watch the portion of the online video discussing the assessment of patients, interpreting the assessment, and developing a plan of care, go to http://links.lww.com/A307.
Providing comprehensive, high-quality care for someone with dementia in the hospital requires a significant investment of nursing resources and may seem, at times, like a monumental challenge. Because of their problems with memory, judgment, and abstract thinking, patients with dementia may find themselves in an unfamiliar environment, unable to remember why they are there or understand what is happening. Furthermore, they are at high risk for delirium superimposed on dementia, a condition which frequently goes unrecognized.19 Combined, these factors increase the risk that a patient will wander away from the facility. The most significant challenge in preventing wandering away is the difficulty in dedicating sufficient staff to provide intensive supervision of all at-risk patients. Ensuring that nurses are competent in the assessment of at-risk patients can be accomplished through staff education programs as well as continuing education modules such as this article and the accompanying video. Finally, working with law enforcement can be challenging if that agency is not correctly prepared to search for individuals with cognitive impairment. Additional information on finding people with dementia who are lost, including the best strategies for caregivers and law enforcement agencies, can be found at http://nursing.ufl.edu/dementia.
COMMUNICATING ABOUT WANDERING
When a patient with dementia goes to the hospital for care, she or he is generally accompanied by a family member. This is an opportune time to discuss several issues, including the need for intensive supervision and the fact that people with dementia often do better when family members are present, and to set up a schedule when family members could help provide this supervision. Family members can be accommodated by making the hospital environment comfortable and supportive. For all older adults or anyone who has a positive screen as described above, an evaluation for dementia is necessary in order to initiate an appropriate plan of care. That plan should consist of the important elements reviewed above, including an accurate assessment of the patient, a mechanism (such as a special armband, gown color, or door marker) to communicate that the patient is at risk for wandering away, ongoing supervision (a room that is easily observed and away from frequently used exits, heightened staff surveillance, communication of risk with ancillary health personnel), and interventions to reduce the desire to leave (keeping the patient's normal clothing in a closet and shoes concealed when not in use, and keeping the patient away from areas where people are frequently seen leaving the unit). Ongoing evaluations should occur throughout the hospital stay to ensure a safe environment. Measures to prevent delirium are important because the manifestations of delirium, as well as increased confusion, may increase the patient's desire to wander away and find a familiar setting. Families can continue to provide support, and this relationship can be facilitated by providing a comfortable environment for the family. (To watch the portion of the online video in which experts in dementia discuss best practices and how to improve outcomes, go to http://links.lww.com/A308.
Why Assess for the Risk of Wandering?
While the Alzheimer's Association reports that 60% of people with Alzheimer's will wander, there are no published empirical data on the incidence of wandering away and becoming lost, including from the hospital setting.5 However, as illustrated by the cases discussed in this article, it's clear that this is a significant clinical problem that can have deadly consequences. Anyone with dementia is at risk for wandering away and becoming lost, regardless of the person's stage of disease, age, or physical limitations. Men have a slightly higher risk of wandering away and of dying after they become lost.6, 7
This problem has a significant impact on hospitals and other public resources in two different ways. First, significant hospital staff resources will be required to prevent a person with dementia from wandering away from the hospital. This includes not only nursing staff, but also ancillary staff who must be involved when the patient is not on the nursing unit, as intensive supervision has to be provided at every level of care. Second, once a patient has wandered away, she or he is at a significant risk for death, and an intensive search must be conducted. Since most people with dementia are elderly, it might seem that they would be easy to find, because they would be near to where they were last seen. According to a study of 615 cases I conducted with a colleague, almost 90% will be found less than five miles from the place they were last seen, and most will be found walking in populated areas.6 However, in that study, only 46% of those who went missing were found within five hours; 36% were found between five and 12 hours later, and 9% required searches of 12 to 24 hours long. The remaining 9% took longer than 24 hours to find.6 Those not found within 24 hours are more likely to be found dead than alive.8, 9
Can one predict who might wander and become lost in the community? Research that my colleagues and I have conducted in recent years shows that all people with dementia are at risk for becoming lost in the community, even those who are in settings that provide excellent care. Many caregivers think that a person with dementia can reliably remain in a place after being instructed to do so, but that is not so. In the cases of Mary Ross and Eugene Faulkner, it is likely that both adults appeared quite capable of sitting and waiting for staff and neither was able to follow those simple instructions.
Is it easy to find a person with dementia once she or he becomes lost? In another study I conducted with colleagues, we compared people with dementia who were found alive with those found dead and discovered that these individuals can be exceedingly difficult to find.7 Even with very intensive search techniques, people may die of exposure, of drowning, or as a result of vehicular accident before they are found. Quick action is essential to find them before they can walk a significant distance or seclude themselves in unusual and difficult-to-search areas. Thirty minutes, at most, should be allotted to a hasty search (a search of the immediate area where the missing person was last seen, using available staff and resources) before widening the search area to include the whole facility. Additional resources should be summoned quickly, and a coordinated, comprehensive search should begin as soon as possible. Outside resources, such as local law enforcement agencies, should be involved as early as possible in the search, as this represents the best opportunity to find the missing person. Prevention is the key.
Go to http://links.lww.com/A306 to watch a nurse use the Try This approach to assessing the risk of wandering in a hospitalized older adult. Then watch the health care team plan preventive strategies.
View this video in its entirety and then apply for CE credit at www.nursingcenter.com/AJNolderadults; click on the How to Try This series link. All videos are free and in a downloadable format (not streaming video) that requires Windows Media Player.
For more information on this and other geriatrics assessment tools and best practices go to www.ConsultGeriRN.org— the clinical Web site of the Hartford Institute for Geriatric Nursing, New York University College of Nursing, and the Nurses Improving Care for Healthsystem Elders (NICHE) program. The site presents authoritative clinical products, resources, and continuing education opportunities that support individual nurses and practice settings.
Visit the Hartford Institute site, www.hartfordign.org, and the NICHE site, www.nicheprogram.org, for additional products and resources.
Go to www.nursingcenter.com/AJNolderadults and click on the How to Try This link to access all articles and videos in this series.