Here’s a fictional story based on dozens of real-life stories recounted by care partners worldwide:
As a child, Cricket’s mother Annie never sat still. She loved to run and jump and play. As an adolescent, she skipped and cycled and swam. As a young woman, she took up golf and skiing, both of which she enjoyed until she couldn’t anymore.
Annie raised four children–of whom Cricket was the youngest–while she worked as a sales rep for a clothing company. After the kids went off to seek their own fortunes, Annie took up running. She completed her first triathlon at age fifty-five. She played soccer and badminton with her gaggle of grandchildren when they were young. And she always walked. Always. She loved it.
Alzheimer’s disease didn’t slow Annie down. She continued to golf and swim as well as to hike in the mountains with friends, and, as the disease progressed, she walked more than ever. In fact, long walks became part of her daily routine when Cricket moved in to become her full-time care partner. Cricket saw the immediate benefits in Annie after their walks: Annie was calmer, more relaxed, more focussed, and happier. Cricket felt better too.
When the time came to make the difficult decision to place Annie in long-term care, Cricket was heartbroken. She explained to the Director of Care at the facility how important it was to Annie’s attitude, well-being and demeanour to be physically active and socially engaged.
“She loves to be on the go and doing things, and she adores people,” Cricket said. “She’ll never sit alone in her room. Never.”
“Oh, she’s a wanderer,” the Director of Care smiled. “We have quite a few of them. It’s not a problem. We know exactly how to deal with wandering.”
Cricket later discovered that “how to deal with wandering” actually meant “how to sedate them so it’s hard for them to stand up or walk without falling over.”
Like fictional Cricket, I hadn’t known that using antipsychotics to chemically restrain people with dementia was and still is common practice around the world, despite the fact antipsychotics should only be used to treat the small number of people with dementia who have psychosis, and then only as a last resort.
Antipsychotics are of no benefit in stopping people’s desire to walk and move–which is a normal human need–other than by making them physically unable to do so through sedation.
I shudder now when I hear the word “wander” or any of its derivatives associated with people who live with dementia. No one should be forced to remain seated for the rest of her or his life. No one should be chemically restrained for convenience using safety as an excuse.
Labels affect how we see and treat people. I believe we must cease using the word wandering, which has a negative connotation attached to it, to describe in people who live with dementia what is perfectly normal behaviour in anyone else: walking, exploring, searching, discovering, etc.
We should encourage people who live with dementia to exercise and engage life, not stop them from doing so.
20 questions to ask yourself about “wandering”
Here are 20 questions designed to help reframe and refrain from using the word “wandering” and the label “wanderer” in association with people who live with dementia.
- How many times a day do you get up from what you are doing, and go to do something else?
- How many times a day/week/month do you leave the confines of your living space to go out for whatever reason (e.g. put the garbage, go shopping, go for a walk, go to a movie, go out to eat, visit a friend, go to the corner store, etc.)?
- Have you ever misplaced something in your home, and spent a good amount of time going from room to room looking for it in places you think it might be?
- Did you ever get lost in the woods or in any other unfamiliar environment as a child? Have you ever gotten lost while walking or driving?
- Were you ever separated from your parents during an outing in an unfamiliar environment? How did you feel? What did you do?
- Have you ever gone sightseeing? Have you ever spontaneously explored an unfamiliar environment?
- Can you imagine never leaving your room, apartment, or house ever again? How would that feel?
- How would you find your way to a destination without maps, reference points, access to GPS, a phone, a compass, or any other navigation tools?
- Do you ever go somewhere (to another room for example) to get something or do something and then when you get there, you find you have forgotten what you wanted to get or do?
- Have you ever gone out for a walk for the sheer pleasure of walking without any destination in mind?
- If you had a pet and you couldn’t find it anywhere in the house, would you go outside to look for it?
- If you woke up in a strange place with no people in it, and no way to communicate, what would you do?
- Have you ever been confined to a room or hallway, or locked in a house and told you could never leave?
- Do you ever walk alone? Why? Do you enjoy it? How would you react if you were told you weren’t allowed to walk alone? Ever?
- If you were told you had to stay in a strange place, full of people you didn’t know, and you had no way to contact your family or friends to tell them where you were, how would you react? What would you do?
- Might you get up and leave if you found yourself in an environment in which you were uncomfortable? How would you feel if you were told you had to remain regardless of how you felt?
- If you were being help prisoner, would you try to escape?
- What are the benefits of exercise? What is the best form of exercise regardless of age?
- Why are the normal activities of walking, exploring, searching, and becoming lost thought to be pathological and labeled as “wandering” if you live with dementia?
- If you were made to sit in a chair with nothing to do for long periods of time, might you become restless, want to get up or start to fidget? How long can you sit in a chair with nothing to do without feeling restless or starting to fidget?
I asked the two parts of question 20 to a random sample of 100 people; the predictable results are in the charts below. It’s time to 1) recognize that people who live with dementia have needs and emotions just like the rest of us, and 2) stop pathologizing their expressive behaviour and attempts to communicate their needs.
Copyright: kalbi / 123RF Stock Photo