Wandering & Dementia – Making Sense of It

With brain deterioration that comes with certain types of dementia such as Alzheimer’s disease, it’s quite common for a person to not know where they are for a few moments or for a longer period of time.  As you can imagine, this can be quite a scary feeling for both the person and the family when someone goes missing.

I can’t even imagine the emotions of the family for Vincent Che who went missing on April 2nd, 2019 in North Vancouver.  It brings back memories of the story of Shin Noh. This situation still pains me…I can’t even begin to image all of what his family has been…and will continue to go through with never knowing what happened to him.

A few things to I’d like to share to help families and the community better understand wandering for those affected by symptoms of dementia:

Types of Wandering:

1. Random Wandering: 

• A type of wandering where the person moves about aimlessly with no apparent goal.
• They can often pacing in same pattern.
• My pick things up and move them sporadically.
• May lack ability to turn around /walk until stuck.
• Often in response to feelings of anxiety or physical discomfort.  

2. Goal Directed Wandering:

• This type of wandering is more common and is purposeful.
• Those who are goal directed are much more likely to use a car or public transportation.
• Most common times are first thing in the morning, late afternoon and also in the middle of the night.
• Often in response to a concern/worry or past obligations such as going to work or making supper.

Common Reasons Why People with Dementia Wander:

• Searching for someone
• Wanting to go “home” –a home of their past (Common for Goal Directed)
• Wanting to go to work – occupation of the past (Common for Goal Directed)
• Disoriented
• Anxious/ Worried (Common for Goal Directed)
• Bored (Common for Random Wandering)
• Restlessness (Common for Random Wandering)
• Pain and/or discomfort (Common for those who are Hungry/Need toilet)

When Wandering Becomes Dangerous: 

Wandering Outdoors:

• Disorientation (even in familiar places)
• When they don’t recall where they live or name
• Extreme weather conditions or temperatures
• Traffic
• Others looking to cause harm or take advantage of
• May be afraid to ask for help
• Unsafe places/uneven terrain
• May walk until stuck; not be able to turn around (Usually found in creeks, drainage, bushes and may die from falling, drowning or dehydration)

Wandering Indoors: 

• Touching/using dangerous items such as knifes/electric tools/stoves etc.
• Taking/moving/losing/destroying household items of importance
• Taking/eating inappropriate items
• Getting stuck in a small space such as a storage closet for a long period of time
• In a large hospital or retirement home – they can go in unsafe areas making it harder to find them.  They may even find an exit to the outside and strangers may not know their condition or the risk of them leaving the building.

Some Warning Signs for Potential Wandering:

• Returns from a regular walk or drive later than usual
• Talks about or tries to fulfill former obligations, such as going to work or taking care of children
• Asks questions about home of the past or states they want to “go home,” even when at home
• Is showing restlessness, anxieties and is not able to stay in one spot long ie: paces the room/area
• Begins to show difficulty locating familiar places inside the home like the bathroom and/or their bedroom
• Asks about their past friends and/or family (even if they have passed away)
• Appears concerned or unsure of what they need to do especially in a new or changed environment

Possible Ideas for Preventing Wandering:

• Consult a Physician about medications and/or side effects
• Meet basic needs: thirst, hunger, temperature, toileting, fear, boredom
• Avoid taking them out to busy places and locations that are not familiar to reduce anxieties
• Register potential wanderers with the Safely Home Registry (Alzheimer Society of Canada/Medical Alert)
• Check to ensure hearing aids and glasses are with them and working
• Photo copy bottom of shoes with special marking
• Use GPS tracking systems (Inside a watch or shoe)
• Try to engage them in conversation or activities of interest
• One to One attention (Perhaps have someone scheduled to be with them during most common time of day when they exhibit a wandering tendency)
• Keep a current picture on hand
• You may need to provide constant observation (Sensors, entrance cameras)
• When you leave, do not say goodbye. Instead just leave or say, “I will be back shortly, I just need to go to the washroom.”  They will not likely feel anxieties you left them and may end up getting distracted on something else instead.
• Avoid physical or chemical restraint unless absolutely necessary.

General Ways to Prevent Wandering – Environmental Modifications:

• Hiding/camouflage doors with curtains, paint or other objects
• Use childproof door knobs
• Install/latch window safety latches
• Remove visual cues such as their coat, hat, shoes, purse, keys, bus pass
• Large signs to compensate for poor vision such as a toilet picture and the words on the bathroom door
• Place name and picture of the person on their bedroom door
• Write routine on large poster board in room especially for those in early stage
• Provide safe walking paths for random wanderers
• Ensure there are comfortable and quiet places to sit
• Use white noise at night such as a ceiling fan
• Install fence and/or hedges around home
• If you need to use a key for closets/unsafe doors, consider attaching the key to a string and hang high nearby.
• Perhaps add doors latches up high on exterior doors
• Door chimes/alarms and window alarms

Ways to Prevent Random Wandering:

• Place interesting that may distract the person at the exit door
• Keep them active by providing small easy jobs/projects for them to do
• Gently redirect them to a more appropriate area: Use their family photographs or mementos to distract them on to a reminiscing topic
• Provide appropriate level of stimulation at the ideal time to eliminate boredom
• Look for areas of frustration such as activities too hard, day rooms crowded, etc.
• Provide a safe environment at all times

Ways to Prevent Goal Directed Wandering:

• Document the wandering behavior to determine patterns
• Hide away car keys
• Empower them to be involved in purposeful activities during high risk times of the day to keep them distracted (i.e. Needing help cleaning up after breakfast or doing another daily morning activity if they get anxious with the need to get going to work after they eat)
• Offer “free” food or drink as a distraction when they appear restless and are asking to go
• Add exercise to daily routine, such as a walking program just prior to when they exhibit a wandering tendency to tire them out.
• Avoid arguing: Never say “NO” but rather, “How about I look into that for you”.
• Offer personalized Therapeutic Reasoning™ as needed to keep them feeling calm. For example: “We are staying here tonight. I’ll be with you. We can go home in the morning after we get a good night’s rest.”
• Provide notes that will go along with the Therapeutic Reasoning™ to add conviction.
• Such as placing a note on the door to assist in Therapeutic Reasoning™ such as, “The kids are already picked up from school today”.
• Doors to have safety features such as chimes, key pads or alarms to alert when they leave.

In many cases, those with purposeful intentions to wander will often give you advance signs for example asking to “go home” or may show some anxiety for needing to be somewhere different.  When these signs present themselves, this is when action needs to take place ASAP!  Ideally, it would be best to be as prepared as you can by using some of the suggestions above.  As well, families who are caring for someone in early stages of dementia should try to learn as much about their condition such as Alzheimer’s disease or the type of dementia.

Quite often people tend to think we need to place someone with moderate dementia in a locked unit when they show signs of wandering.  However, this doesn’t have to be the case.  We need to determine WHY the wandering is happening in the first place.  For example, they may be experiencing a medical situation like delirium or pain that requires treatment. They may have an unmet physical need or something worrying them. It’s possible they be going back in time to previous memories of a past home where they lived for many years…and not believe or recall the place they are.  Once we figure out the WHY, we can then work towards creative solutions.

Overall, we want people safe. Learning as much as you can about dementia and how to best support someone who appears to be lost or confused in your community is the best we can do to help out.  Another way is that if your municipality isn’t already working towards becoming Dementia-Friendly…then perhaps make the suggestion! 😊