Most families who care for a loved one with advanced Alzheimer's disease ultimately opt for institutionalized patient care as the disease progresses. While many patients can remain in their homes for years, some of the behaviors associated with advanced Alzheimer's disease are extremely difficult to control, causing families to seek care outside of the home. In this article, I will discuss one of those behaviors -- wandering -- and what can be done to help understand it and ensure that your loved one is safe.
Understanding Wandering Behavior Triggers
When I use the term "wandering," I am referring to a type of behavior seen in Alzheimer's disease and dementia patients that can seem aimless to the casual observer. But Alzheimer's disease and dementia experts say there is usually a logical reason for wandering behavior, which may include boredom, curiosity or restlessness.1 Determining the reasons for the Alzheimer's wandering behavior can help caregivers understand what the patient's motivation is -- for example, pain, physical discomfort or simply a need to move.
Beneficial Wandering vs. Unsafe Wandering Behavior
Behavioral management is central to providing quality of life and a safe environment for the Alzheimer's disease patient. Managing Alzheimer's wandering behavior, however, should not be about controlling the situation but rather about understanding the motivation for the behavior. When a patient is placed in a new environment, such as a nursing home, wandering may simply be due to confusion over the new surroundings. Oftentimes, staff and other patients find this activity bothersome or intrusive, and the family or staff may try to stop the behavior. But wandering in certain circumstances may actually be beneficial -- especially if restlessness or socialization is the reason for the behavior -- as it offers movement and stimulation for the patient. Indeed, movement can help preserve strength, slow skin breakdown, manage constipation and enhance patient mood.2
The biggest problem with wandering behavior is when it is unsafe, such as when the Alzheimer's disease patient leaves the facility. Sometimes wandering may be triggered by an urge to return to a safe, familiar and secure environment (such as the person's home) or former place of work, and it is not an attempt to actually "escape." Once outside of a controlled setting, however, injuries, fatigue and even death can occur. And because patients with advanced Alzheimer's disease usually are frail, and because of neurological impairment, they are predisposed to falls. Falls in the elderly are always problematic; with Alzheimer's disease or any advanced dementia, they accelerate the decline of the disease process.
Using Restraints to Curb Unsafe Wandering Behavior
From this standpoint, staff and family may restrain the Alzheimer's disease patient in a misguided attempt at safety. But according to the Alzheimer's Association, physical restraints have not shown a reduced incidence of "successful exit seeking" and they have not been shown to enhance the safety of wanderers. Rather, restraint use is associated with an increased risk of injury to Alzheimer's wandering patients.3 It is far better to try to determine the underlying causes for the wandering behavior, address those needs, and provide a safe environment for the Alzheimer's disease patient to move about, avoiding any kind of restraints.
Much has been written about the use of restraints to try to keep wanderers from exiting a facility. Studies conducted by the Alzheimer's Association show that confused or cognitively impaired patients are the most frequently restrained.3 If agitation or acting out is also a problem, restraints in the form of medication may be employed in an attempt to maintain a safe setting for the patient. Learning that your loved one is being controlled with medication can be very upsetting, but it should never come as a surprise. In this situation, the staff should always communicate with you as to why medication is being used.
A Kinder, Gentler Approach
Hospice helps bridge the gap between nursing home staff, Alzheimer's disease patients and their families. Operating around the concept of comfort care, the goal is to allow patients to continue to be as autonomous as possible. In other words, patients should not be forced to do what works best for the facility. Certainly, with advanced Alzheimer's disease, patients may not be able to verbalize what they want, or need, or even if they are experiencing pain. However, by developing a plan of comfort care and educating staff about a patient's propensity to wander, a happy medium can be reached which allows for some exploration in a safe, restraint-free environment.
Working with patients who have advanced dementias such as Alzheimer's disease is very challenging. But we can learn much from these patients simply through observation and understanding their history. An Alzheimer's disease patient who constantly sorts or rearranges books or other objects, for example, is sharing clues from a former life. Perhaps this person used to work in inventory or in the post office. Patient care for this individual would include suitable activities that safely fulfill the desire to sort things. Does the Alzheimer's wandering behavior satisfy a need to explore, socialize, seek out someone or something, or is it simply a manifestation of boredom and lack of stimulation? The answers may lie in learning what the patient did at home before coming to live in the facility. Again, there must be open channels of communication between staff and family.
Easing the Transition from Home to Facility
When families are no longer able to care for their loved one at home, placing them in a facility can be very traumatic. Even the term "institutionalized" is scary. They wonder whether anyone else can provide the loving care and understanding they did"”and how this change will affect their family member. It is helpful for everyone if the family can participate in setting the care goals; after all, no one knows a patient better than the family. Here are a few ideas of how you can help ease your loved one's transition from home to nursing home:
- Share information about your loved one's history"”for example, past professions, particular likes or dislikes, and whether wandering away from home was a motivating issue for placement.
- Disclose problems with depression or anxiety that you have observed. This can alert staff to problematic behaviors; seeking socialization and need for companionship are major reasons for wandering behavior.
- Note any history with falls, especially recent falls, and problems with gait or balance. This helps staff plan safe, uncluttered wandering areas.
- Relate past incidences of urinary tract infections, which can cause pain and agitation and constipation. With constipation, for example, moving regularly helps, whereas restraining the patient could make the situation worse.
- Request to be kept informed regarding any elopement attempts and suggest that you discuss problem-solving initiatives together with staff.
If you have a relative with advanced Alzheimer's disease and are considering moving your loved one to a facility, the first step is to do your homework on the care facilities in your area. Visit the facilities in person and compare the environment, staff, and patients who reside there. Ultimately, you need to feel confident that the facility you choose will try to encourage, support and maintain your loved one's desire to explore, investigate and move about independently as long as possible.
Patients with Alzheimer's and wandering behaviors should always be assessed to determine the cause so that any unmet needs can be addressed. Wandering behaviors will be better monitored if staff can keep your loved one engaged in a social activity, provide stimulation and companionship, and maintain quiet times with decreased stimuli. It's also essential for the staff to update the plan of care regularly as Alzheimer's disease progresses. If falls are or become an issue for your loved one, closer staff supervision is necessary"”but restraints are not. And remember: it is never too early to call a hospice. Hospice care is synonymous with support, for families as well as patients.
1Alzheimer's Association. 2007. Key clinical issues in dementia care. As seen in National Hospice and Palliative Care Organization, Caring for Person with Alzheimer's and other dementias: guidelines for hospice providers, pg 5, Accessed December 16, 2008 target="_blank">http://www.nhpco.org/files/public/Dementia-Caring-Guide-final.pdf