Dementia, Elopment and Wandering by Peter Silin, MSW, RSW, CCC
On a recent rainy afternoon, we got a call from the sister of a client who lives in one of the best nursing homes in Vancouver. "Peter," it's W," she said in a voice tight with worry. " I'm in T's room. She's gone and nobody knows where she is. She isn't in the building. "A couple of hours later she was found by the police, forty blocks away. Unfortunately, the family of a Vancouver area woman received much sadder news in December, 2013 when she was found dead two days after wandering away from her nursing home. This month, Elder Voice focuses on wandering, a risk for sufferers of dementia whether they are at home or in a facility.
The terms wandering or elopement (and hereafter we will use wandering) are generally used to describe the event of someone with dementia leaving their home or facility on their own when they are not safe to do so, either because they will not be able to find their way back or they will not be willing to come back. In the person's mind, however, many times they are not aimlessly "wandering." Rather, they are engaged in what is to them purposeful and meaningful behaviour. For example, in their mind they may be "going home" but do not remember that the place they are looking for is no longer their home. Often wandering is associated with being disoriented to time--they are trying to find their mother and don't remember she died many years ago, the home they are thinking about is the one they lived in growing up, or they are going to work despite not having worked for sometimes decades. Sometimes they are just going for a walk and do not realize they will not be able to find their way back. Their wandering may be the result of a real need, for instance they may be trying to leave an environment that is troubling to them or trying to find something to eat. At times, wandering is the result of an agitation or restlessness which causes them to pace. In such a condition, when they see an exit, they may simple take it.
The potential for the incidence of wandering in someone suffering from Alzheimers is as high as 60%. If the individual has wandered before there is a 70% chance of re-occurrence attempts. Although the risk is high, the timing of wandering is often unpredictable. A client of ours had lived in her Nursing Home for over a year before wandering away for the first time.
One reason that the timing of wandering is unpredictable is that abilities and sometimes personalities change with the progression of Alzheimer's disease. This means that someone who previously was not at risk to wander could become so with the passage of time. Functioning and orientation also fluctuate day to day in someone with Alzheimer's--one day they may want to go home, and another day they are content to stay where they are. Moreover, there is often a kind of gray zone of awareness and ability as the disease progresses in which someone may or perhaps may not be able to find their way back.
The management of wandering can be a delicate balance between allowing people their personal freedom and their right to make decisions balanced with intervening to place limitations on them which may upset and worry them and the reasons for which they may not understand. That is why with Alzheimer's disease caregivers often feel as though they are "chasing the dragon," meaning they are putting measures in place only after they are necessary.
Wandering may not always be predictable, but there are times when it may be more likely to occur than others. For instance, if someone has just moved into a facility, if they have just had their car keys taken away, if they have had a change of caregivers or if a family member they are used to seeing does not visit for quite a while. If they start talking about wanting to see their mother, or about having to go find their child or go to work they could be indications they will wander. If they are up a lot or late at night, they may try to leave while a caregiver is sleeping. Pay attention to increasing agitation and anxiety. Note signs that abilities are changing--not just memory but also what we call executive function-- insight, judgment, reasoning and planning--because when those deteriorate a person is not able to assess their ability to do something safely such as go for a walk.
If you are considering a nursing home for your loved one, always ask about the systems they have in place to deal with residents who wander. They should have both electronic systems (such as locking doors, video monitoring, and alert systems that trigger an alarm as well as protocols for staff to follow to keep track of residents who may wander.
It is unrealistic to think that wandering can always be prevented unless someone is monitored individually 24 hours a day. If they are determined to leave their home or facility they often can do so, taking off an alert bracelet, slipping out with a visitor, or learning a code that unlocks a door. In the event of this happening, you'll want to be prepared to help facilitate a successful search. For example, have an up to date photo of the person available so police and others will know what the person looks like. Make sure the person has identification on them, either in a pocket, a wallet or a purse, or make sure they are wearing some kind of medical alert bracelet with their address and the contact details of a family member. Register them with the Alzheimer's Society Medic Alert programme. Consider having the person wear a personal GPS device that will alert someone when they are outside a certain perimeter or that will locate them if they do leave
In terms of seeking to reduce the incidence or likelihood of wandering, there are several things that can be done. These steps can be divided into person centred and environmental actions.
In person centred approaches, remember that what we are calling wandering is often purposeful behaviour. Find out what someone is looking for, what they are trying to achieve. Are they lonely, scared or bored? Can you help them safely to have what they want? Try to distract them with an activity or by talking about their past, by looking at old photos, or with a coffee. Tell them you will take them home tomorrow or that their son is on holidays and will be back next week. If they have just moved to a facility, provide them with more attention and visiting until they settle and start to feel like the facility is home. If the behaviour is occurring at a specific time in the day you might hire a private companion for that period. Review medications which might be causing anxiety or restlessness. Put coats and hats and keys somewhere out of sight.
Environmental approaches can include:
- Making sure doors and windows are locked or alarmed and if at home ensuring the alarm system if monitored.
- Reviewing their environment to see if it is creating anxiety, for instance too much stimulation, too hot or cold, confusing or disorienting.
- Putting a sign on the doors which tell them not to go out without someone.
- Ensuring a facility is equipped to deal with someone who wanders.
- If they are pacing, finding a place where they have the freedom to pace safely.
- Putting things around them that are familiar to them and which remind them of their past and the people in their lives and which help them feel at home where they are.
- Providing continuity in their environment such as ensuring they have the same routine and same caregivers.
- Orienting them tactfully: for instance, "lunch is downstairs in an hour." or "your daughter will be here to see you later."
- Installing an in-home video monitoring systems that will track movement around a house.
- Enlisting the support of neighbours by asking them to be aware if someone is walking on their own.
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