It’s 11:30 at night. You wake to get a glass of water. As you walk down the hallway, you sneak a peek into your sister’s bedroom. Quick, little checks when you get the chance have set your mind at ease since her Alzheimer’s diagnosis a few years back.
She’s gone. She’s become prone to wandering — among the most common Alzheimer’s and dementia behaviors — in recent months. But she’s never gone missing. You run to the kitchen and spot a half-eaten PB&J sandwich on the counter and the door to the garage swung wide open.
You panic. Where could she possibly be? Then, thankfully, you spot your sister down by the road. She appears to be checking the mail. You find your slippers to go get her.
Down by the road, barefoot in a nightgown, your sister opens the mailbox and looks inside. She closes it, walks away a few feet and returns to look inside once more. “Sweetie, what are you doing out here? It’s freezing,” you say. She looks up, surprised to see you, and notes her surroundings. Confused and a little embarrassed, she says, “I was just checking to see if the mail came yet.”
You don’t try to argue. You just tell her you already got it. At least she’s OK.
Reasons for Alzheimer’s and Dementia Behaviors Like Wandering
Wandering can be one of the most dangerous Alzheimer’s and dementia behaviors. The fictional example above ended on a positive note. But for many persons living with dementia and their care partners, wandering can lead to very scary outcomes. Nearly half of those with this tendency end up seriously injured or worse in a fall or by exposure to extreme heat or cold.
Perhaps you, too, recall searching for hours or — even days — for a loved one. If not, you’ve certainly heard such harrowing stories in the news. Many people with all types of dementia diagnoses and their varying stages may wander only around the home or become overwhelmed in public spaces. But the reality is that any individual with dementia — diagnosed or not — with any type of mobility (walking, wheelchairs, scooters or motor vehicles) is at risk for getting lost or hurt.
Here’s why it may happen:
1. Routines (Former Jobs, Chores & Responsibilities)
Routines become ingrained in us. Many of us go to the same workplaces, grocery stores, places of worship and recreational areas for many decades. We complete certain household chores on a rotation or certain days — mowing the lawn, washing dishes, vacuuming, etc., so many times the list may run on autopilot.
While memories of these routines may fade for people living with dementia, feeling the need to do a task or run on a schedule remains. In early to mid-stages, your loved one may drive away thinking they need to go to work or the store. Later, they may move around the house without an apparent goal. But they’re likely just searching for the next task or a meaningful object, even if they don’t know what.
2. Spatial and Visual Disorientation
Alzheimer’s and other forms of dementia also diminish eyesight as well as depth and dimensional perception. Especially in mid-to-late stages, generally poor eyesight may make it difficult to navigate at home and in public places. It can also be difficult to read signs for direction.
Similarly, changes in depth and dimensional perception often cause your loved one to make a wrong turn or avoid an area that looks impassable (dark areas or unique design patterns on carpets or walls can look like obstacles).
3. Strong Physical & Emotional Needs
Anyone can feel strong emotions. But those of us not living with dementia typically can address them safely. Someone with dementia may feel anxiety, fear and overstimulation — even within their own home. They may not recognize a room within the house, or the house itself. Those who can communicate well verbally often wonder, “When are we going home?” So your loved one may search for home.
If your loved one has difficulty communicating or expressing discomfort, they may seek a place to soothe the nerves. They may not know where they want to be, but walking around to find “anywhere but here” may feel right.
4. Difficulty Navigating Familiar Areas
Those in early and middle stages of dementia often enjoy a lot of independence. Long walks? Quick drives to the store or to visit a friend? Why not? But all of the sudden, that path around the lake doesn’t look familiar. That wasn’t the right highway exit.
Wandering isn’t always aimless. A lost loved one may become more lost while trying to backtrack and find their way. (Helpful hint: individuals with dementia often move the same direction as their dominant hand.)
5. Sundowning and Sleeping Difficulties
Dementia often disrupts the part of the brain responsible for governing sleep through the natural circadian rhythm. As evening sets in, “sundowning” affects many individuals with Alzheimer’s disease and/or other types of dementia may become extra agitated, confused or restless.
When it would normally be time to wind down or be asleep, they may be prone to walking around to ease restlessness or meet some emotional/physical need. But not remembering or being able to express what they need, your loved one may just walk around the house. Nighttime hours when care partners may be sleeping can be particularly dangerous if a loved one in advancing stages needs frequent or 24/7 supervision.
6. Finding Home
I alluded to this above, but it bears repeating. Finding home is a strong and common urge for persons with dementia. They may already be home — or whatever has become their home. So they search, and search, and search some more.
After all, home is where the heart is. Their brain just isn’t registering where home might be.
Plan for Wandering as a Common Alzheimer’s and Dementia Behavior
In assisted-living facilities, you may see residents moving up and down the halls or in and out of rooms. Staff and care partners without training in person-directed care and person-centered language may label such individuals as “wanderers.” But perhaps they’ve simply always enjoyed walking. Or maybe they worked in a similar facility earlier in life. They’re simply living life according to their own routine. Others in a variety of living situations wander to address a range of needs that may or may not be obvious.
#WeAreDementiaStrong. If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning including dementia care. We’re happy to provide referrals and guide the process in a caring and compassionate way.