Here I am… extending away! My first activity for the Ontario Extend mOOC has me reflecting on the role of language in dementia care.
“Alzheimer’s Disease” and “Dementia.” These are terms which are often used interchangeably in my discipline. During week one of my Hyflex Dementia course this semester, I asked students what comes to mind when they hear the word “dementia.” My initial intent was to simply begin the conversation around dementia… after all, it seems to be so widely misunderstood. When I look back to week one however, this was partially a diagnostic exercise for me. Upon reflection, what I was really doing was assessing learners’ prior knowledge on the topic.
With January being Alzheimer’s Disease Awareness month, my social media news feeds were being flooded with stories from persons with lived experience and also commentaries from professionals in the field, (many of whom referred to AD and Dementia as if they were the same thing). Here is the truth… They are not.
Dementia refers to a decline in cognitive functioning. It is not a disease on its own. When we talk about dementia, we are usually talking about a group of symptoms. These may include a loss of memory, understanding, or judgement, but it is something usually caused by an underlying condition (such as Alzheimer’s Disease for instance).
The conversation in my classroom during week one was not met with as much silence nor shyness as I had anticipated. Students were actually talking and being quite transparent regarding their own attitudes towards dementia. During that week one class, I heard students describe dementia as being a “mystery” for them; Some students shared that the topic scared them and that it made them feel sad to think about losing all of their memories.
Our week one class took place during a Northern Ontario snowy day in January, however that didn’t prevent me from bringing my umbrella to demonstrate my super cheese-ball analogy (I’m Jenny, that’s what I do). After a good initial classroom discussion about what dementia is, I opened up my umbrella and explained the following: Unlike Alzheimer’s (which is a specific illness) dementia is considered as more of an umbrella term. There are many different forms of dementia (all unique and all with varying impacts to cognitive functioning).
If we think about my opened umbrella, the umbrella itself represents dementia (the group of symptoms caused by changes in brain function). Underneath the umbrella fall some commonly related diseases [such as AD, Lou Gehrig’s (ALS), Multiple Sclerosis, and Parkinson’s Disease]. As a side note: some people with these related diseases do not even experience dementia.
The conversation in my classroom is just getting started. I am so looking forward to sharing the rest of the semester with my incredibly open-minded and transparent students. They are aware that in turn, I am not able to promise a cutback on my cheesiness… so far they seem OK with that.