I’ve always found the term “awareness” as in “cancer awareness” to be interesting. It is one of those catch-all phrases that gets used whenever we are talking about some problem or another. What does it really mean?
I suppose there are issues that are pervasive and unseen. Raising awareness could have real impact on survival. For example, raising awareness of the high rate of breast cancer, and promoting regular breast exams, saves countless lives.
Other times “awareness” is a covert way of tooting one’s own horn (with the mid-term elections upon us, I’m sure you are nauseatingly familiar with this brand of “awareness”). But whatever the intention, awareness campaigns follow a pretty simple, logical progression.
- Explicit: Here is a little known problem. Now you know.
- Implicit: Now that you know, do something about it. Donate money, change your behavior, etc.
When we consider dementia, something closer to The Eden Alternative’s line of work, raising awareness follows the same logical progression. After I finish “raising awareness,” I am going to ask you to do something. So, hopefully, now that we are totally honest with each other, let’s get to it.
First, let me ask what does dementia awareness mean? Does it mean raising awareness about the disease itself, a cure, treatment, or what?
Most people know what dementia is, or at least have a mental image of what they think it is. Unfortunately, the terms I most hear associated with Alzheimer’s and dementia are “horrific” and “tragic.”
Often dementia is referred to as “the long goodbye” where someone isforced to watch a loved one slowly “disappear.” Here is the problem, whatever kind of awareness we can raise is ultimately not good enough. Those living with dementia are already clouded by such a thick stigma that simply telling someone about the condition really isn’t going to change the way they feel. Until we move past the mentality of “the long goodbye,” progress will be difficult.
We need a paradigm shift.
Progress can only be made when a radical shift in perspective has been made. Instead of “the long goodbye” people need to see that loving and cherishing the memory of the person they remember is healthy and appropriate, but even more important is embracing the loved one as they are now.
It is important to realize that much of the stigma stems from inadequate care, not from the person themselves. Next time you hear someone discussing “awareness” ask yourself what they are making people “aware” of. If it is anything less than a paradigm shift they are proposing, they are doing a disservice to those living with dementia.
- Explicit: A radical paradigm shift is needed to improve the lives of those living with dementia
- (Not so)Implicit: Now that you know, set your sights on that old paradigm and fire away. Change the world.