Dementia Awareness

November 04, 2014
Virgil Thomas,


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.

To recap:

  • 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.


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5 Comments. Leave new

Yes, a paradigm shift. The ‘long goodbye’ is a meme that points to the old paradigm, perhaps more aptly named, The Long Sad Goodbye.’.

A paradigm shift needs to have a similar meme… short, accurate and memorable. I wish I could offer such. Perhaps others might.


There is a rainbow of types of awareness & consciousness. Opening someone’s mind (I think we have to open the heart first though) to the changes that a Dementia may or may not bring is a good first step to alleviate associated issues. It’s painful to hear families say things like, “she’s faking”, “he’s just stubborn”, “she needed to loose weight anyway” or anything that demonstrates denial, anger, etc.
We all change and we all age; as much as there is tremendous push-back about the reality and Dementia often brings big changes. The caregivers are often caught up in “what should be” rather than “what it is in the moment”. Everyone wants it simple, easy and to their satisfaction. Dementia only offers that option if you are willing to let go of the movie in your head about the way a person was & the life that was. It’s a drawn out mourning that gets reignited with every change. We creatures of habit do well with coaching about what we might expect and to help make the best of each moment and each residual skill. I think it always goes back to loving someone enough to go where they are. Sometimes easier said than done. 3AM and ready to go to work— looking for the car & keys that are gone and arguing that the car is not at the shop and it is not Veterens Day. Some times it works & some times it doesn’t. Support systems and alternate plans are a part of being conscious & aware. Protecting, loving and making life as joyful as possible is what I feel called to do.

Neysa M. Peterson
November 8, 2014 1:15 pm

So true. This is what I learned as fact over a 9 year experience caring for my husband, diagnosed after death with Frontotemporal-temporal lobe degeneration, ubiquitin 2. Our last two years together were so mutually nourishing to us because I quit trying to fix things for him, and instead just be with him in a personal supporting way which nourished me tremendously . I would love to help get the word out that people with dementia are not disappearing, but remain capable of relationship till the end, even if they can’t communicate it in the old ways.

Barbara Smullen
November 22, 2014 3:53 pm

So very well said. This helps me discuss the Eden Alternative and dementia in general more effectively with those people, usually highly educated and capable of investing resources and energy in social change, who are accustomed to viewing every problem in tightly crafted intellectual terms. Thank you.


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