“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“I agree with Susan regarding the unfortunate and outdated terminology used describing some behaviour of people who live with dementia as ‘difficult’ or ‘challenging.’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.”
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