Alzheimer's Disease and Related Disorders
What made EH leave the safety of the yard and wander off into the woods? This question is far more difficult to answer than determining where EH might be headed. Before deciding why wandering occurs one must determine what wandering means. This seemingly simple term has several different definitions and types. Different types of wandering may help predict where the subject might be found. Just how common is searches caused by wandering is answered by prevalence research. Finally, understanding the dire consequences of wandering incidents is addressed.
Today I wandered about the yard picking up fallen limbs after a violent thunderstorm. My Grandfather, whom suffered from Alzheimer’s disease, wandered in his room. EH wandered away, and became the subject for a statewide search and rescue response. The term wander clearly has many different uses. Wandering is not synonymous with being lost, although the two are closely related with those who suffer from dementia. Wandering has been defined in a variety of ways, creating some confusion. The major focus of this web site is on critical wandering. It has previously been defined as when anyone with decreased cognitive ability wanders (walks) away from supervised care. Silverstein and Salmons have also defined wandering along similar lines; "When an Alzheimer’s disease patient leaves the home or facility or drives unsupervised." Both of these definitions relate well to the wanderer who becomes lost. Throughout this web, the term wandering will be used to describe the critical wanderer unless otherwise noted.
Critical Wanderer: Anyone with dementia who wanderers away from supervised care, a controlled environment, or cannot be located.
Classification of different types of wandering remains in its infancy and no agreement or standardization is seen in the academic or caregiver literature. At least eighteen different types of wandering have been described. Many of these term overlap.
Snyder et al was one of the first research teams to directly observe wandering within the walls of a nursing home. They tracked the subjects with video equipment using techniques similar to a field biologist out in the wilderness. The team classified wandering behavior as goal-directed searching, goal-directed industrious, or nongoal-directed behavior. The searching wanderer was constantly searching for some unattainable object such as a mother, home, or abstract object. They often called out repeatedly or approached many people in their fruitless quest. The industrious wanderer possessed an inexhaustible drive to accomplish a task or remain busy. The nongoal directed wanderers, aimlessly wandered! They might have been drawn by a particular stimulus but their attention was quickly diverted.
A summary of the terms used by several other researchers is presented below.
Random wandering: A type of wandering where the subject moves about aimlessly with no apparent goal.
Goal-directed wandering: A type of wandering where the subjects movement can be attributed to some type of goal.
One of the most important questions that remains to be answered is; so what? Does the category the specific form of wandering fall into have any practical benefit to the caregiver or search manager? The answer is cast in a shade of gray. The type of wandering may be important for both preventing a search incident, using social modification to minimize wandering, or predicting the location of a lost critical wanderer. Unfortunately, research with clear outcomes is either non-existent or preliminary at best. It is easy to hypothesize (a scientists fancy way of saying an informed guess) that wanders who pace, lap, or engage in random wandering will not travel as far as a goal-directed wanderer. The goal directed wanderer is also much more likely to use a car or public transportation to achieve their target. The type of wandering has also been linked to different management solutions. Suggested solutions for the random wanderer have included hiding door knobs, charting the behavior to determine timing patterns, using white noise at night, or repeatedly reassuring and directing the wanderer with simple directions. These are different from more active measures that must be taken for the goal-directed wanderer with escapist/exit desire.
(How big is the problem?)
Little research has studied wandering beyond the walls of the institution or residence. Therefore, nobody really knows the full extent of the wandering problem. Most of the scientific studies have only looked at the percentage of patients with Alzheimer’s disease who wander within an institution. A more difficult but perhaps meaningful statistic is how many people actually wander away each year. The difficulty is that not all lost wanderers are reported to law enforcement or government agencies. Often the caregiver only needs to look out in the yard or drive down the street to locate the missing wanderer.
The earliest study that examined wandering outside of an institution reported 26% of AD subjects getting lost each week. This percentage appears high and may be due to a poor layout and security in the facility. A more recent study of Australian care facilities also looked specifically at critical wanderers. It was found that on average, non-secure aged care facilities had an incident rate of 1-2 critical wanderers per year. The study also noted that most of these cases did not require law enforcement intervention, because the critical wanderer was often quickly located in nearby areas
Perhaps one of the best estimates of critical wandering incidents comes from Butler and Barnett. They examined missing person reports from local law enforcement in Arkansas. They reported one critical wanderer per year for every 1000 persons over the age of 65.. Using Evan’s estimate of the 10% prevalence of AD among those age 65 or greater, then the incidence of critical wandering is 1% among AD patients. This would suggest that 34,400 critical wandering cases are reported to law enforcement each year in the United States98 US Census estimate. The next number game requires figuring out how many cases of critical wanderers never get reported to law enforcement officials. Silverstein and Salmons contacted by phone 463 caregivers who had registered with the Alzheimer’s Association Safe Return program in Eastern Massachusetts. They found only 27% of the caregivers reported a missing wanderer to law enforcement. This number also agrees with a study conducted by the Virginia Department of Criminal Justice Services who contacted caregivers and found that only 34% of the caregivers reported a missing wanderer to law enforcement. These shockingly low numbers are attributed to the caregiver conducting a successful search themselves, calling friends, the subject returns, or that they had never noticed the subject had wandered away in the first place. Using the 1% incident rate reported to law enforcement, the 1998 census estimate, and the 27% report rate, it appears over 125,000 (127,400 for those who like more precision without accuracy) critical wandering incidents occur each year. In the year 2040 this number could grow to over half a million cases.
Each year over 125,000 Alzheimer's disease subjects become critical wanderers in the United States
The consequences of a wandering incident range from the sinking feeling of a missing loved one to a tragic lonely death. Silverstein and Salmons found 32% of caregivers did not consider wandering a problem A few quotes are presented from some of these caregivers in the text box below. The fact that a third of caregivers don’t recognize the consequences of wandering is particularly disturbing considering the source of the Silverstein and Salmons study. They interviewed only those caregivers who took the initiative to register wit the Alzheimer’s Association Safe Return program. Therefore, it is expected among all caregivers that an even greater percentage fail to view wandering as a problem. Clearly, the Alzheimer’s Association, law enforcement, and search organizations have a considerable challenge in educating some caregivers.
In reality the wanderers life is in peril. The Silverstein and Salmons study of caregivers (in Massachusetts) found 69% of wandering cases are associated with severe consequences. A breakdown of medical disorders was not provided. Flaherty (also from Massachusetts) reported 24 fatalities from almost 700 searches reported by caregivers(3% fatality rate). Butler and Barnett (in Arkansas) collecting data from law enforcement found 4 deaths from 450 searches with a resulting 1% fatality rate. The lower rate may be due to slightly warmer weather, or a local sheriff who responded aggressively to lost wanderer reports. A study by Koester found in search and rescue incidents (in the Mid-Atlantic states) nineteen of eighty-seven (22%) of wanderers were found deceased due to hypothermia, dehydration, or drowning. All subjects found within 24 hours of disappearance survived while only 54% of those requiring greater than 24 hours survived. The higher fatality rate is largely due to the fact that state search and rescue resources are usually only called after local law enforcement have conducted an unsuccessful search. The highest fatality rate comes from Nova Scotia's Emergency Measures Organization. Hill reported a mortality rate of 10 of 22 (45%) among "Walkaways. The higher fatality rate is easily attributed to the colder weather.
46% of wanderers (from the Mid-Atlantic region) requiring greater than 24 hours to locate died.
These sections are excerpts from a book in progress on wandering and Alzheimer's.
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