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AJN, American Journal of Nursing:
doi: 10.1097/01.NAJ.0000423503.53640.32
Feature Articles

Missing Incidents in Community-Dwelling People with Dementia

Rowe, Meredeth A. PhD, RN, FGSA, FAAN; Greenblum, Catherine A. PhD, RN, FNP-BC; D'Aoust, Rita F. PhD, RN, ANP-BC, CNE, FAANP, FNAP

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Author Information

Meredeth A. Rowe is a professor and the Lewis and Leona Hughes Endowed Chair in Nursing Science at the University of South Florida (USF) College of Nursing, Tampa. Catherine A. Greenblum was a postdoctoral scholar at the USF College of Nursing when this manuscript was written; she is now family NP at Jesse S. Greenblum, MD, Obstetrics and Gynecology, in Fernandina Beach, FL. Rita F. D'Aoust is an associate dean for academic affairs and director for interprofessional initiatives at the USF College of Nursing. Contact author: Meredeth A. Rowe, mrowe1@health.usf.edu. Meredeth A. Rowe owns equity in CaregiverWatch, a company that manufactures monitoring systems for caregivers, which are discussed in this article. The other authors have disclosed no potential conflicts of interest, financial or otherwise. AJN's peer review process has determined this article to be objective and free of commercial bias.

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Abstract

Overview: At every stage of dementia, people with the condition are at risk for both missing incidents, in which they are unattended and unable to navigate a safe return to their caregiver, and “wandering,” a term often used to describe repetitive locomotion with patterns such as lapping or pacing. By understanding the differences between these two phenomena, nurses can teach caregivers how to anticipate and prevent missing incidents, which are not necessarily related to wandering. The authors differentiate missing incidents from wandering, describe personal characteristics that may influence the outcomes in missing incidents, and suggest strategies for preventing and responding to missing incidents.

For people with dementia, missing incidents are not uncommon and can have devastating results. The following scenarios are composites based on missing-person reports published in newspapers across the country. They illustrate the diverse and frightening situations people with dementia face when they go missing.

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Sara Lewis, a 73-year-old Iowa native, went missing shortly after moving into her daughter's home in Yakima, Washington. Ms. Lewis, who had been diagnosed with Alzheimer's disease eight months earlier, was found one day later in a motel in Salt Lake City, Utah. She was, reportedly, trying to make her way back to her former Iowa residence.

Lauren Richards, a 44-year-old woman with early-onset Alzheimer's disease, was last seen at 1:30 AM, in bed at her home in Brick, New Jersey. It was not until 3:50 AM that her caregiver realized Ms. Richards was gone. She had been wearing an electronic identification bracelet but had removed and disposed of it in her home before taking off on foot. Ms. Richards was found at 10:40 AM, unharmed, entering a store in Point Pleasant, New Jersey.

Gerald Ryan, an 80-year-old man with vascular dementia, wanted to wait in the car while his caregiver picked up a few items in a grocery store. When the caregiver returned, Mr. Ryan had driven away. He was found, safe, 60 miles away.

Although 87-year-old Bob Pordy had Alzheimer's disease for several years, he had continued to drive to church weekly without incident. One Sunday, six hours after he'd left his home in Scottsdale, Arizona, his wife called the sheriff's department to report that he had not returned from church and that she and her neighbors had been unable to find him or his car along the three-mile route from her home to the church. The temperature in Scottsdale had reached 113°F that week. Four weeks later, a family riding an all-terrain vehicle through the desert found Mr. Pordy's body 200 yards in front of his car, which appeared to be stuck in the sand.

The progression of dementia and its associated cognitive profile can vary widely, with symptoms often occurring years before a diagnosis is made. The gradual onset of symptoms in dementia may leave relatives and those providing care unprepared for the sudden occurrence of a missing incident.

Missing incidents like those described above are often erroneously described as “wandering,” but they represent a distinct phenomenon.1 Although wandering—a term that encompasses a variety of repetitive locomotive behaviors—can also impair quality of life for patients, families, and caregivers, there's no established correlation between missing incidents and wandering,1, 2 and missing incidents are associated with far graver consequences. While each of the missing incidents described above is unique, all involved a lapse in supervision that left a person with dementia unable to navigate a safe return home. In addition to these defining features, recent research suggests that dementia-related missing incidents share several other common characteristics and antecedents.

The purpose of this article is to differentiate missing incidents from wandering behavior, to clarify the attributes of both, to describe factors that can affect the outcomes of missing incidents, and to discuss strategies for preventing and responding to them. With a greater knowledge of these two distinct phenomena, nurses can more accurately assess a patient's risk of a missing incident and make appropriate recommendations to family members and caregivers.

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WANDERING: A BROAD TERM

In medical literature, descriptions of dementia-related wandering vary widely from aimless meandering to repetitive locomotion such as lapping or pacing, or foraying to meet a need, generally within the person's residence.1, 2 In a study of ambulatory people with dementia living in one of 22 nursing homes, wandering episodes typically occurred between the hours of 2 PM and 3 PM, and lasted fewer than 15 minutes.3 Generally, wandering behaviors are not connected to goal-directed walking.3 While wandering, a person with dementia often enters spaces that are atypical for walks, such as the bedroom of another resident.4 Sometimes it's possible to predict the times of day at which wandering behaviors are likely to occur, as with “sundowning” syndrome.5 If a person with dementia exits her or his living space while wandering, it is defined either as a direct or an accidental elopement.

The antecedents to wandering are currently being explored, but one theory holds that wandering behavior is usually an attempt to meet a need, such as hunger or thirst.6 To date, little research has been published on this hypothesis. The majority of research on need-driven wandering has been conducted in nursing homes and assisted-living facilities, where such environmental factors as proximity to other individuals, sound, light, or crowding seem to play an important role.3, 4, 7

Recent findings illustrate critical differences between missing incidents and wandering in terms of context, predictability, and precipitating factors (Table 1 1, 3-8).1-7 Since both missing incidents and wandering are common in people with dementia, differentiation is an important component of assessment and intervention.

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MISSING INCIDENTS: COMMON CHARACTERISTICS

Missing incidents can occur at any point in dementia, regardless of the age of the person with dementia, as was demonstrated by Ms. Lewis, who had been diagnosed with Alzheimer's disease only eight months previously, and Ms. Richards who, at age 44, became lost after leaving her home in the early morning hours. Although it's difficult to identify risk factors for missing incidents, both men1, 9 and people who demonstrate poor topographical memory,10 which can cause familiar environments to seem unfamiliar, appear to be at elevated risk.

A lapse in supervision is a precipitating factor in most missing incidents.1, 8 This characteristic clearly differentiates missing incidents from wandering behavior, which can occur regardless of supervisory status.3, 4

Almost all supervisory lapses preceding missing incidents are planned, occurring during usual activities in which the caregiver had determined that direct supervision was unnecessary or that the person with dementia could reasonably be allowed a degree of independence.1, 8 This is illustrated in the case of Mr. Pordy, who went missing while driving to church, which he had done every Sunday for many years. His wife knowingly let him drive by himself because he had previously done so without incident. Similarly, such lapses may occur when the caregiver is sleeping (as with Ms. Richards) or showering.

The inability to retain new information may play a role in missing incidents, as when the person with dementia is incapable of following a caregiver's instruction to remain in a specific, safe place until the caregiver's return.1, 8 For example, a caregiver might ask a person with dementia to wait in a particular room while she or he is occupied elsewhere in the home or, as was the case with Mr. Ryan, to remain in the car while she or he purchases a few groceries. Supervisory lapses rarely represent caregiver neglect, but rather the difficulty family members face trying to provide 24-hour surveillance for a person with dementia living at home.

Agitation is a potential antecedent. 1, 8 A person with dementia may become agitated and leave the home in anger when a caregiver is unable to fulfill an unrealistic request (to visit a deceased relative, for example). Once outside the caregiver's super-vision, the person may be unable to find the way home.

Missing incidents tend to be unpredictable. Unlike wandering behaviors, which often recur at a certain time of the day,1, 2 missing incidents tend to happen without warning and often only once.1, 8

In most cases, missing people with dementia are traveling by foot, and the majority of people are found close to the place where they were last seen. In one study, 53% of missing people with dementia who were walking were found within one mile, and 75% were found within five miles, of the place where they were last seen.1

Going missing while driving is also a problem for people with dementia. Becoming lost while driving can compromise both the safety of the person with dementia and that of those around them—and, when traveling by car, missing persons can cover significant distances, complicating rescue efforts. In one study, the reported distance from the place last seen to the place where found for missing persons with dementia who drove away ranged from 0.03 to 1,745 miles, with a median of 41.3 miles.1 Ms. Lewis, who attempted to drive from Yakima, Washington, to her previous home in Iowa, had traveled 700 miles when she was found in Salt Lake City, Utah. Her case also illustrates how easily people with dementia can become disoriented and forget where they are going or how to get there.11

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DEFICITS INFLUENCING OUTCOMES

Such way-finding deficits as impaired topographic memory are considered critical components of missing incidents.12, 13 While the initial difficulty with navigation may stem from these and general memory problems, dementia-related deficits in executive function and judgment often act as compounding factors, preventing the person with dementia from taking appropriate corrective action. Once a caregiver's instructions or a path recently taken are forgotten, the person may be unable to plan a logical response to feeling lost, such as asking for assistance from a store employee if lost in a store. Similarly, deficits in judgment significantly increase the risk of taking such dangerous actions as leaving a store unaccompanied.

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PREVENTIVE STRATEGIES

All people with dementia are at risk for missing incidents, and nurses play an important role in teaching caregivers about risks and preventive strategies.

Dementia education should begin at the first sign of cognitive decline and should include the person with dementia as well as all caregivers. Involving the person with dementia in the early stages of the disease allows the caregivers to learn the person's preferences and gives that person a sense of participation in decision making.

Teaching should focus on the

* difference between missing incidents and wandering.

* unpredictability of missing incidents.

* need for ongoing assessment.

Families need to understand that missing incidents can occur in both typical and novel situations. Families may be able to prevent missing incidents by limiting independent activities based on results of ongoing assessments. Usually, the functional impairment associated with missing incidents is progressive in people with dementia. Periodic assessments can help identify changes in cognitive capacity that may signal an increased risk of missing incidents.1, 11, 14 Changes in cognitive capacity may include

* new way-finding deficits.

* topographical memory loss.

* impaired object localization and recognition.

* spatial disorientation.

* diminished problem-solving abilities.

* difficulty recalling new information.

Supervision is the most critical element in preventing missing incidents, but it's unrealistic to expect supervision to be constant, especially for people with dementia who reside at home. Health care providers can assist informal caregivers in identifying appropriate community resources, such as day care and respite care facilities. Nonprofit community organizations, such as churches or Alzheimer's Association chapters, often provide short periods of respite.

Advance planning for a missing incident is crucial and can facilitate a safe return. Providers may suggest that caregivers post reminders of how to respond to a missing incident in a prominent place in their home. See How to Prevent or Respond to a Missing Incident: Text Caregivers Can Display at Home for text that summarizes these points and can be printed, for example, on a card or refrigerator magnet. Other critical elements of a missing incident plan include having

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* ready access to a current photo.

* a list of phone numbers for individuals who can immediately assist in a search.

* a form of identification for the person with dementia, which should be with the person at all times.

Although people with dementia may remove identification bracelets, as Ms. Richards did, caregivers should ensure that they always have some form of identification, such as clothing labels, a pendant, or a wallet, on their person. A 2011 study found fewer than half of missing persons are found by their caregivers, reinforcing the necessity of using identification devices, which aid neighbors, merchants, and law-enforcement officials in the recovery effort.8

Home safety protocols, such as positioning door locks higher or lower than eye level, can prevent unattended exits. In addition, novel locking mechanisms for doors and windows might prevent a person with dementia from exiting the home unaccompanied. When choosing the placement and type of lock, caregivers need to take into account the potential for safe exit of all family members in emergency situations. Systems with door and window sensors, remote alarms, and information panels at the caregiver's bedside can also be helpful in preventing elopements.15 Such systems provide wireless, unobtrusive supervision and do not require the person with dementia to wear any type of sensor or tag while in the home. In one study, the use of such a system reduced nighttime injuries and unattended home exits by 85%,16 and in another, use improved caregivers' peace of mind and quality of sleep, while increasing their energy level.17

Tracking devices, if worn continuously, can assist in recovering a missing person with dementia. Radio frequency identification (RFID) bracelets work by emitting a known radiofrequency, which can be located by multiple antennae if the person with dementia becomes lost. RFID systems are highly accurate both indoors and outdoors, but users (usually law-enforcement agents) must be trained to operate the antennae. Other systems use a combination of cellular and global positioning system (GPS) signals to identify a person's location. Though often useful, these systems may be ineffective in locating a person who is under tree cover, indoors, or in a rural area—places in which there may be no satellite acquisition or cellular signal. Some of the GPS and cellular systems use text messaging to notify caregivers when a monitored person leaves a circumscribed geographic area. Caregivers can then log on to an Internet program to detect the person's location. All tracking systems require the person with dementia to wear or carry a transmitter that requires battery charging on a regular basis.

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RESPONDING TO A MISSING INCIDENT

As soon as a caregiver discovers that a person with dementia is missing, she or he needs to immediately implement the advanced plan developed for missing incidents. The likelihood of a positive outcome declines as time elapses.1 Available family, friends, neighbors, and merchants should conduct a hasty search, but no more than 20 minutes should elapse before law enforcement is contacted. Caregivers often hesitate to call law enforcement out of concern that a missing incident reflects poorly on their care. But this hesitancy is generally unfounded, because law-enforcement officers are usually given training classes that make them aware of the fact that missing incidents can occur even when caregivers are vigilant.

Once local law enforcement files a missing person's report, immediate alerts are issued to all officers. These alerts can be extended to many other agencies, particularly in the 35 states that participate in Silver Alert programs for people with dementia.18 Silver Alert programs vary by state, but they typically provide information to law-enforcement agencies (including a state's transportation department, which activates highway signs) and broadcast alerts to the general public through media outlets to assist in locating cognitively impaired, missing older adults (see Florida's Silver Alert Program 8, 21-24).19, 20 There is little published data on the efficacy of Silver Alerts in facilitating the safe return of missing persons with dementia,19, 20 but legislation to establish a national Silver Alert program that would include training and protocol development is pending in both the U.S. House and Senate.25, 26

In addition, local law enforcement may engage walking, driving, or helicopter patrols, and call upon volunteer search-and-rescue teams. If search dogs are employed, caregivers should provide the search team with clothing recently worn by the missing person.

Studies suggest that almost all missing persons with dementia are found safe and uninjured,8, 10, 22 but the risk of adverse outcomes rises with multiple incidents. When a missing incident occurs, it indicates a need for reassessment of the cognitive function of the person with dementia and the available resources of the caregiver.

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Florida's Silver Alert Program

How the system works in one of the most popular retirement states.

In 2008, Florida launched a Silver Alert program, focused specifically on people with cognitive impairment who go missing while driving (see the Florida Silver Alert Web site at www.floridasilveralert.com). The program rapidly disseminates information about the missing person and vehicle to statewide law-enforcement agencies and the general public in the form of electronic highway signs and media alerts. Recently, the Florida Silver Alert program also began assisting local law enforcement in searching for cognitively impaired adults who have gone missing on foot, either while engaged in usual independent activities or during supervisory lapses. For those missing on foot, alert messages may be targeted to local law enforcement, media, and citizenry, with messages delivered directly to phone numbers within a circumscribed area. In addition, Florida's Silver Alert program provides training to law-enforcement agents and community groups on how to respond to and follow up on missing incidents in people with dementia.

About half of missing people with dementia face serious injury or death if lost for more than 24 hours,21 so a quick response is critical. Silver Alert activation procedures vary from state to state. In many states, family members contact their local law-enforcement agency, which then issues the Silver Alert. In Florida, the caregiver calls 911, and the law-enforcement agency that takes the call contacts the Florida Highway Patrol, the Florida Department of Transportation, and the Department of Elder Affairs Memory Disorder Centers (MDC). The MDC then contacts the caregiver to offer support and information on available services.

While the majority of people with dementia who go missing while driving are found by law enforcement, about 23% of them are found by Good Samaritans.22 A prospective survey study of 104 missing incidents over a 12-month period found that most of those who go missing while on foot are found in a short period by the family caregiver, neighbors, or business employees in the community.8 Once a missing report has been filed, about half are found by law enforcement and the rest by Good Samaritans, business employees, and neighbors.23 As of June 2012, the Florida Department of Law Enforcement (FDLE) had determined that 503 Silver Alerts had been issued in the state since the program's inception, that 43 of these alerts had directly resulted in a safe recovery, and that an additional 21 indirect recoveries had been identified.24 It should be noted, however, that only about 5% of missing incidents require law enforcement to assist in the rescue,8 and the FDLE is not notified of all direct or indirect recoveries.24

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REFERENCES

1. Rowe MA, et al. Persons with dementia missing in the community: is it wandering or something unique? BMC Geriatr. 2011;11:28

2. Algase DL, et al. Mapping the maze of terms and definitions in dementia-related wandering. Aging Ment Health. 2007;11(6):686–98

3. Algase DL, et al. New parameters for daytime wandering. Res Gerontol Nurs. 2009;2(1):58–68

4. Algase DL, et al. Wandering and the physical environment. Am J Alzheimers Dis Other Demen. 2010;25(4):340–6

5. Bachman D, Rabins P. “Sundowning” and other temporally associated agitation states in dementia patients. Annu Rev Med. 2006;57:499–511

6. Yao L, Algase D. Emotional intervention strategies for dementia-related behavior: a theory synthesis. J Neurosci Nurs. 2008;40(2):106–15

7. Algase DL, et al. Empirical derivation and validation of a wandering typology. J Am Geriatr Soc. 2009;57(11):2037–45

8. Bowen ME, et al. Prevalence of and antecedents to dementia-related missing incidents in the community. Dement Geriatr Cogn Disord. 2011;31(6):406–12

9. Rowe MA, et al. Persons with dementia who become lost in the community: a case study, current research, and recommendations. Mayo Clin Proc. 2004;79(11):1417–22

10. McShane R, et al. Getting lost in dementia: a longitudinal study of a behavioral symptom. Int Psychogeriatr. 1998;10(3):253–60

11. Hunt LA, et al. Drivers with dementia and outcomes of becoming lost while driving. Am J Occup Ther. 2010;64(2):225–32

12. Algase DL, et al. Initial psychometric evaluation of the Wayfinding Effectiveness Scale. West J Nurs Res. 2007;29(8):1015–32

13. Pai MC, Jacobs WJ. Topographical disorientation in community-residing patients with Alzheimer's disease. Int J Geriatr Psychiatry. 2004;19(3):250–5

14. Uc EY, et al. Driver route-following and safety errors in early Alzheimer disease. Neurology. 2004;63(5):832–7

15. Rowe M, et al. CareWatch: a home monitoring system for use in homes of persons with cognitive impairment. Top Geriatr Rehabil. 2007;23(1):3–8

16. Rowe MA, et al. Reducing dangerous nighttime events in persons with dementia by using a nighttime monitoring system. Alzheimers Dement. 2009;5(5):419–26

17. Spring HJ, et al. Improving caregivers' well-being by using technology to manage nighttime activity in persons with dementia. Res Gerontol Nurs. 2009;2(1):39–48

18. National Silver Alert Program. Silver alert. 2009. http://nationalsilveralert.org/silveralert.htm.

19. Carr D, et al. Silver alerts and the problem of missing adults with dementia. Gerontologist. 2010;50(2):149–57

20. Florida Silver Alert. Florida Silver Alert protocols. Silver Alert Support Committee 2012. http://www.floridasilveralert.com/protocols.

21. Alzheimer's Foundation of America. Alzheimer's Foundation of America releases ‘lost and… found’ report highlighting strategies to address missing incidents among people with dementia [press release]. 2012 June 21. http://www.alzfdn.org/MediaCenter/2012/06-21.html.

22. Rowe MA, et al. Missing drivers with dementia: antecedents and recovery. J Am Geriatr Soc. 2012 [forthcoming].

23. Rowe MA, Glover JC. Antecedents, descriptions and consequences of wandering in cognitively-impaired adults and the Safe Return (SR) program. Am J Alzheimers Dis Other Demen. 2001;16(6):344–52

24. Florida Silver Alert. 2012 Silver Alerts issued. June report. Silver Alert Support Committee; Florida Department of Law Enforcement; 2012 Jun. http://cdn.trustedpartner.com/docs/library/FloridaSilverAlert2011/Reports/Silver_Alert_June_2012-c%5B1%5D.pdf.

25. U.S. House of Representatives. HR 112. Silver alert communications network: National Silver Alert Act of 2011. Washington, DC; 2011.

26. U.S. Senate. S 1263. The National Silver Alert Act of 2011. Washington, DC; 2011.

For 18 additional continuing nursing education articles on safety topics, go to www.nursingcenter.com/ce.

Keywords:

caregiver education; dementia; missing incidents; wandering

© 2012 Lippincott Williams & Wilkins, Inc.

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