“When people think of ‘dementia,’” the article said, “it is natural to next think ‘memory loss.’ What we may not be prepared for is how other behaviours can change and even become difficult to manage. In fact, it is these difficult behaviours that families report as more troublesome than memory loss.
“Difficult behaviour” the article continued, “includes actions that are unsafe, destructive, highly upsetting or dangerous to self or others.” I get annoyed with care professionals who continue to propagate this kind of misinformation. I left a comment at the bottom of the article:
“I really wish people would stop referring to ‘difficult behaviours that occur with dementia’ and start referring to them for what they really are which is ‘normal behaviours caused by lack of knowledge, unsuitable environments and unhelpful approaches to caring for people with dementia.’”
I was encouraged when researcher, consultant, author, and dementia care advocate Leah Bisiani followed with this piece of wisdom:
“I agree with Susan regarding the unfortunate and outdated terminology used describing some behaviour of people who live with dementia as ‘difficult’ or ‘challenging.’ We all exhibit behaviour that can be perceived as difficult. Who among us hasn’t cried in frustration? Lashed out in anger? Spoken loudly during an argument? Left a room when we’re upset?
People who live with dementia experience the same range of emotions we all do. But their situation is far more complex than ours. Can any of us really understand the reality of those who live with dementia? How hard it must be? How traumatic?
When we describe behaviour and label people as difficult or challenging, we completely miss the mark. What we should be doing is questioning why we, cognitively aware individuals who have the ability to use our imagination, compassion and empathy, continue to disregard the unmet needs of people with a brain disease as they try to cope with a constantly changing and confusing world as well as unfair expectations.
It’s our responsibility to adjust ourselves and understand that our behaviour is more often than not the cause of behavioural expressions of people living with dementia. By truly understanding the specific needs of every individual and then meeting them, ‘problematic’ behavioural expressions can be reduced and even completely prevented.
It’s up to us to enter the reality of those we care for, to go into the world they live in where, without us, they would otherwise be alone. Each of us has the right to make our feelings known, to communicate our love, happiness, anger, displeasure, frustration or whatever else we feel in the best way we can, either verbally or through behavioural expressions.
Anxiety related behaviours that are described as ‘difficult’ or ‘challenging’ are actually efforts to communicate. They frequently occur when caregivers dismiss or neglect the differing reality or unmet needs of the people they care for.
Care partners who understand cognitive restrictions and provide care that respects the preferences of persons living with dementia in ways that least exhaust their capabilities are able to minimize or avert the kinds of behavioural expressions that negatively impact both the lives of care partners and persons living with dementia.”
I couldn’t have said it better myself, Leah Bisiani; thank you for making so much sense. If you need proof of your own, take this three-minute survey on behaviour.
https://myalzheimersstory.com/2017/05/02/wandering-is-not-a-symptom-of-dementia/
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My Alzheimer's Story 
Susan,
I feel very privileged to be quoted on your website/blog/ and thank you for printing out my words.
My entire life work has been focused on trying to change a negative, ageist and stereotypical philosophy and culture of care that is rigid, restrictive and destructive to those we are supposed to be ‘caring’ for.
It’s time to advocate for what is right and true.
Keep up the incredibly inspiring work.
Cheers and smiles always.
Leah.
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“It’s time to advocate for what is right and true.”
You betcha and right back at ya Leah!
And I hope this generates some visits to your site Uplifting Dementia where others can see the innovative work you’re doing.
X Susan
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Great stuff Susan, thank you. Memory loss I have never had a problem with, everyone suffers from memory losses throughout their lives, who hasn’t lost their car keys? I certainly have plenty of times. I admit I had no idea that dementia meant anything else. I love the way Leah has articulated her thoughts which reflect my own which, I guess is why my husband rarely feels frustrated. I always let him do whatever he wants and keep a watchful eye on him to ensure he is safe. He rarely feels that what he is doing is not the way others may behave. To this extent he is relatively happy and content. I admit it is tiring on me but worthwhile to give him as good a quality of life as I can
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Diane,
Thanks. I read absolutely every post on your blog, which is amazing and such a comprehensive and detailed account of the challenges and small victories of amazing daily care.
I can’t recommend your blog highly enough. Here’s the link for others who may wish to follow you: The Journey to Another World.
Thanks for staying connected, and keep up the good work ❤
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Thank you for your kind words Susan.
I appreciate your graciousness in sending people towards my site. When I connect with like minded persons such as yourself it means the brain trust grows. You are an inspiration yourself and I always love how destiny draws those who speak up together.
This then allows us to share what we can with as many people as possible, making a difference to a greater number of persons living with dementia and their caregivers. After all they deserve nothing less than us giving them a voice, proving there is a culture and philosophy of care that defies the old archaic beliefs,
One that is humane, is joyful, and allows life to continue to be lived. One that proves the journey can be another wonderful and positive experience to be embraced. One that dispels the myth.
The louder our voices the more will hear, and start to believe that change is possible.
“Be the change you want to see in the world” – Ghandi – my mantra and my passion.
Cheers and smiles.x
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My pleasure Leah. And you are so right: “The louder our voices the more will hear, and start to believe that change is possible.” It’s why I keep shouting 🙂
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Thank you for continuing to help me and others understand how we must reframe the way we see dementia. ❤
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Thanks Mike! And yes, we all need to keep reframing 🙂
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