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. (Download the PDF here)
- 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 held 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.
https://myalzheimersstory.com/2017/05/02/wandering-is-not-a-symptom-of-dementia/
Take my short survey on behaviour here.
Copyright: kalbi / 123RF Stock Photo
My Alzheimer's Story 
I have watched people in a memory unit wander or whatever you want to call it, til they are so exhausted and can barely walk. I have also seen the effects on others who would not sleep after seeing people in their rooms going thru their stuff. It’s good and some times not so good to wander.
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Too much of a good thing can be a bad thing and most things are better in moderation than in excess.
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Having dementia does not remove humanity or who a person is, nor the place they hold within the world.
This attitude is where all the negative stereotypical and ageist views on dementia come from. Such a lack of understanding.
When I ran facilities I ensured all the people living with dementia, who lived there, had free reign to wander happily wherever they chose – we created an environment so stimulating, warm, and homelike, that they wandered ‘happily’ touching the fluffy walls, the tactile wall hangings, the memory boxes, moving to the music in the background, responding to the colour, the plants, the gardening. Sitting outside with friends and family having a cuppa. Entertaining. Laughing. Communicating.
The key was to continue life as they knew it, so we brought in everything we needed to establish life as similar as possible to what they have lived.
Thus they weren’t depressed, they didn’t withdraw, they weren’t bored out of their brains and they were not restricted by our task orientated little lives as caregivers.
This is what person centered care is.
The person!!!! And maintaining who they are and the choices, preferences, activities and hobbies they have chosen throughout their lifetime.
We also knew those who liked to go walking at certain times of the day, or go for a wander down the shops, or walk the dog. I would ensure staff maintained these routines thus the need to ‘escape’ never or rarely ever occurred. The person was supervised, and did not have the need to try and escape as we would pre empt their routine and go with them. Provide them with the company to continue life as they knew it.
This is not rocket science.
It is about compassion, imagination, creativity, and understanding the person.
We do not have the right to remove the value from a person’s life just because we are so caught up with bureaucratic and ridiculous rules that we can be more flexible with.
We place people at much higher and severe risk by restraining and drugging and restricting and disrespecting them.
Something to think about is it not????
In relation to medication management, the predominance of psychotropic medication must be seriously reflected upon.
Majority of persons living with dementia do not actually need these medications, and over medicating people because you do not understand them is considered inappropriate and unacceptable behaviour management.
How dare we consider this a humane and caring attitude?
I question this very disheartening and destructive attitude of drugging human beings, who are in reality, most probably just trying to communicate to us in the very best way they can that their needs are not being met, they are in pain, they are frustrated, or living a life of core despair because those in the supposedly care giving industry lack the empathy and compassion to enter their reality with them and understand how eternally difficult this must be.
May I also suggest, (and have proven with evidence based research), that the prevalence of behavioural expression is most often related to ‘our’ behaviour and judgmental attitudes towards people living with dementia.
It is time we looked at ourselves and realized that we are often the triggers, and if we adjusted ourselves and learned to be a little more flexible in our approach, then majority of behavioural expression is eradicated. It is time to take our head out of the sand and move forward from the old archaic care philosophies.
Furthermore, and importantly, it must always be considered preferable to reduce the use psychotropic medications because they are so destructive and harmful to quality of life.
This is a no brainer!
Sitting in an armchair for the remainder of the journey, drooling is not improving a person’s life quality – this is neglect pure and simple!!!!! This overuse of medication is considered elder abuse.
Majority of people living with dementia do not and never will benefit from this type of chemical intervention.
This highlights the significance of exploring alternate non pharmacological strategies, including person centred care approaches, validation and an in depth understanding of the individual specific needs of the person being cared for.
The management of behavioral expression in people living with dementia has for too long relied essentially on medications that sedate.
Other additional and undesirable effects place that person at significant risk because of poor mobility, increased risk of falls and serious fall related injury, decreased cognition and evident destruction of life quality. And then we enter the area everyone also then complains loudly about – acute delirium and depression!!!!!!!
What are we doing people?????
By using these medications we are creating a situation where a person deteriorates faster than they would if treated with the care and support they deserve, and enabled to live their life.
Again, neglect and reportable abuse in my view.
I have been promoting for the last 25 years in all my research, is we must only ever use these type of medications “as a last resort” – and this should be taught and implemented to all caregivers, formal and informal, inclusive of all health professionals.
Otherwise people with dementia may continue to be dehumanized, to the stage where they continue to be stripped of and lose their personhood, rights and dignity, possibly create dependence on the negative effects of medication and live the remainder of their days in a state of sadness and despair.
This my friends is the disgrace of our industry.
Leah Bisiani – RN.1/Dementia Consultant/MHlthSc
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I hope you are open to a possible solution from a person who doesn’t share your credentials, but has a heart for people suffering from the symptoms of Alzheimer’s and their care providers. I respect what you all are sharing and doing to help sufferers keep their personhood and make their life more pleasant.
I have been a hit songwriter, record producer, audio engineer and music publisher since 1969. However, the hit recordings I am most proud of and have dedicated much of my life to promoting, can help care givers improve the quality of life of people with Dementia. It’s a positive non- chemical solution for you to get excited about.
When dementia sufferers are withdrawn, stressed, angry, bored, lonely, confused, or need sleep they can listen to my musical hypnotics as an alternative to medication. My evidenced-based research-backed recordings of traditional nursery songs with a heartbeat rhythm dramatically reduces demented type behavior and improves cognitive abilities.
The distinctive arrangements of the most widely known and best remembered songs in the world, comfort and distract listeners by evoking powerful pleasant memories and positive feelings that get their mind off what is bothering them. They are made to feel safe, special, wanted and loved.
Care givers can go to http://www.dementiacomfort.com and read the research, learn why they work, listen free to eight Heartbeat Lullabies and watch six music videos that use the Heartbeat Lullabies as the soundtrack. Sufferers get quick comfort by watching and/or listening free anytime on their computer, smartphone and tablet without having to identify themselves.
Memory care units that have Music and Memory Certified programs that are searching for a resident’s preferred song will find these familiar songs will work for most people they play them for.
The proven benefits of playing these compassionate non-romantic love songs to improve the quality of life for people coping with Dementia is an important new discovery that should be tried and shared.
Listen to a Heartbeat Lullaby. Then decide whether it is worth sharing.
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Terry,
I am always open to every single person in this world who advocates for people living with dementia and think outside the square.
Innovative approaches like you have described are brilliant and I think you need to promote this even further because it sounds, in theory, just a fabulous introduction of further non pharmaceutical based approaches, and meets the person with dementia within their reality.
I am a great believer in music as it touches the soul of us all.
I shall pass your research on after reading it myself..
Thank you for your very inspiring comment.
Cheers and smiles.
L.
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“I question this very disheartening and destructive attitude of drugging human beings, who are in reality, most probably just trying to communicate to us in the very best way they can that their needs are not being met, they are in pain, they are frustrated, or living a life of core despair because those in the supposedly care giving industry lack the empathy and compassion to enter their reality with them and understand how eternally difficult this must be.”
You and I are 100% on the same page Leah!
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As we always are my lovely!!
L.xx
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