Monday September 21 is World Alzheimers Day, an opportunity to reflect on a condition that 170,000 Kiwis are expected to be living with by 2050. ‘Wandering’ is identified as a symptom of dementia but why don’t we just call it ‘walking’? Caroline Egan of HelloCare explores why the words we use are important.
To ‘wander’ is to ‘walk slowly around, often without any particular sense of purpose or direction’, according to the Oxford Dictionary.
‘Wandering’ is the term used to describe ‘seemingly aimless or random movement or locomotion by a person with a mental disorder or cognitive impairment’.
When talking about people living with dementia, these words have become a label with negative connotations and are identified as symptoms of dementia. They come with the assumption that the person doesn’t quite know what they are doing.
They are often used to describe a person who is simply ‘walking’.
Gerontologist and registered nurse Nicole Smith told HelloCare using the label ‘wandering’ links people to a symptom and dehumanizes them.
“It comes with connotations that it’s a bad thing that you won’t stay in your room, or that you can’t be kept under control,” she said.
It’s part of an “ingrained culture of stereotyping, labelling and ageism that’s systemic”, she said.
She prefers to use words such as ‘exploring’ or even simply ‘walking’, or to describe a person ‘who likes to get out of their room’.
“It’s normal to want to walk around. It’s a human right to navigate your environment, regardless of your diagnosis,” she said.
People living with dementia are trying to understand the world they are in with reduced cognition. “It’s the way they know how to figure things out, by walking, by touching, by talking.”
When we are talking about people living with dementia, we must focus on their “healthy, intact” attributes, said Professor Steven Sabat, Professor Emeritus of Psychology at Georgetown University at the recent Dementia Alliance International webinar titled ‘What people living with dementia teach us about our shared humanity’.
“If all we can see are dysfunctions, we [see the person] in an entirely different way than we would if we saw the positive and the strengths,” Professor Sabat said.
By saying someone is wandering, we are interpreting the person in line with their diagnosis.
In the same way that ‘walking’ becomes ‘wandering’, ‘righteous indignation’ becomes ‘irrational hostility’ and ‘I don’t understand what you’re saying’ becomes ‘You’re confused.’
“There are times when people might correctly be described as wandering, but not all the time,” he said.
“Sometimes people take walks. What is someone supposed to be doing, just sitting and listening? You want to get up and move around.
“A person diagnosed with dementia is effectively prevented from being anything else, not because of dementia but because of social treatment provided by others.”
‘Wandering’ is considered a form of suffering, or a negative, according to dementia and wellbeing consultant at Australia’s Calvary Care, Colin McDonnell.
It means a person is aimlessly walking around, but people don’t see themselves as wandering, he said.
“People say to me, ‘We’re not just aimlessly wandering, we’re walking. We’re doing it for a reason.
“People living with dementia continue to do ‘normal’ things, just like we do,” he said.
If they’re walking around, “they’re usually looking for something, or they’re stressed, or the environment might be too hot, or they might be hungry, or they might think their children are coming home. They mightn’t like the person who sat down next to them so they get up and walk around,” he said, “just like you would.”
“They might just like walking.”
Mr McDonnell said it was important to know a person’s life history to understand the person’s objective or reason for walking, but the person may not be able to communicate the reason themselves.
“They might have been walkers in their past lives. They might have been farmers. It depends on what they did in their life,” he said.
Strategies to help
If carers know about a person’s life, it’s easier to keep them engaged so they might be less inclined to walk.
“If you know they usually like to walk at 2 in the afternoon, then make some scones or cookies in the afternoon. Or sit down and have a cup of tea. Then they’re more engaged and less likely to walk,” Mr McDonnell said.
If the person wishes to walk, ensure the environment is safe and that they are supported in doing so. People who continue to walk are actually less likely to incur injuries because the activity strengthens their bodies, he said.
“You just have to make sure they have high protein food, carbohydrates and plenty of water to drink if they are walking, so you are giving them the calories they need and the protein they need for their muscles.”
Also take into account medications or health conditions, such as poor eyesight, that might make them unstable on their feet.
“Corridors should be uncluttered and there should be a path. The environment should lead you from beginning to end so you don’t get lost and stuck in dead ends”
(The design of some traditional aged care facilities with long corridors can mean people find themselves stuck at a dead end, not knowing how to get out.)
Games can be projected onto walls, and murals can create a sense of belonging and provide landmarks. Food stations along the path can help to ensure people eat and drink enough.
Doors that you wish to encourage the residents to find, such as bedroom and bathroom doors, can be painted in contrasting colours, while doors that are less suitable for residents to use can be painted the same colour as the walls to prevent confusion or distress. “You can hide exit doors so residents are more relaxed and calm,” Mr McDonnell said.
When residents come out of their rooms, the area they want to be drawn to should be in their line of sight so they “know where to go to without having to think about it”.
Placing photos of residents when they were younger on their doors can make it easier for them to identify their rooms, and therefore help avoid situations where they might become worried and agitated. They can also help staff to “see that person as a person” and make it easier for them to engage.
Providing meaningful activities is also helpful for residents who want to walk, Mr McDonnell said.
“Go out into the garden. Get into the sun. Pick flowers. Give them a rake or broom. They can do the washing up. Fold clothes. Water the garden. Cook. All the things you do when you’re walking around. Things they’ve done all their life. They’re the things you aim for.”
- This article is reprinted with permission from Australian online aged care magazine HelloCare.