Are We Really ‘Dementia Aware?’

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Dementia Aware. What does that mean? I read this all the time. Dementia aware restaurants, public places, even dementia aware cities.

So, what is this "Dementia Aware" all about? I ask myself. Don't get me wrong, I am all for anything that brings awareness to this disease. And I applaud anyone who is trying to do this.

But the real question is, what does bring attention to this disease, and what does one have to do, say in a restaurant, to be dementia aware?

I have to assume it entails some sort of training program. Some sort of guidelines when new employees are hired, as well as training the ones already there.

I like to analyze things. I know for a fact there thousands of people here that are dementia aware. How do I know that?

'Cause they deal with it every day, day in and day out.

You have to figure that there are at least five people around each member here that are also "dementia aware." That figure is large and perhaps impressive but, in the grand scheme of things, it's but a drop in the bucket.

But still, what is it? Dementia Aware. Is it a training course? If so, who teaches it? Is there a manual? If so, where does one get them?

And how would you ever get a "dementia aware" city? The truth is we are way behind the eight ball when it comes to bringing awareness to this disease.

Whether you call it "dementia awareness," just plain awareness, or bringing awareness, we are in fact losing the battle.

I hear almost daily that someone's loved one was diagnosed with dementia, and they say "Thank God they don't have Alzheimer's."

Believe me, it's true. Some don't even know that Alzheimer's a form of dementia. And they are dealing with it.

I have been a proponent of awareness since I was diagnosed. There are those who do more, I suppose. But when I say "we" I mean all of us are losing this battle called "dementia awareness," awareness or bringing awareness.

The people I deal with daily know this disease, of course. That's because I surround myself with people who do. But go outside you inner circle.

You will see we are not winning this awareness thing; matter of fact we are losing, terribly.

I can tell you, you will never get one Taco Bell, one Burger King, or one Wal-Mart to be totally dementia aware. Let alone the whole chain of these businesses.

To be dementia aware you have to be "dementia aware." It's not something you can show someone in a 30-minute video or in some hand-outs.

It is indeed a constant learning process. Ever-changing, every day. In my opinion, you cannot make any one person, or any one place "dementia aware." It's the people who run these businesses and the ones who work there.

And for whatever reason this is constantly changing. Employees find another job, the business is bought out by another company, whatever.

If there were the time and resources, you could teach some of these places to be dementia aware. But you cannot label them "dementia aware" just because.

There are people right here that don't get it. And that's fine. Half the time I don't get it either. It is like I said, it's constantly changing and it's a constant learning process.

"Dementia Aware" cities? What a good concept. But ask yourself, "How realistic is this, really?"

I have a dementia service dog, Sam. Have had him now going on two years. You would not believe the people who stop and ask me, "What's the dog for?"

On his red vest in big white letters "Service/Working Dog. Do Not Pet."

But that, most times, is ignored. When asked what he does I always reply "I have dementia and Sam is a dementia service dog. He helps me with things that I can no longer do."

Nine out of ten people stand there like I just told them the world was coming to an end. They have no idea what dementia is, what a dementia service dog does, what any service dog does for that matter.

And like I said, that's fine. But it's these occasions that show me without any doubt that we are not anywhere close to being "dementia aware" or whatever one wants to call it.

It sounds good. Dementia Aware. But what it gives you is a false sense of security. Makes you think as a caregiver that everyone in whatever establishment you are in indeed knows about dementia.

It just isn't so. We don't sugar coat anything here and there may be many people who disagree with me. And that's fine. Difference of opinions makes the world go round.

But, as a patient who has traveled this beautiful country of ours, I can tell you wherever I have been, from Washington State, to California, to New York City, to Florida, people talk about dementia awareness.

But it takes a lot more than just talk to implement a dementia awareness location. I can tell you without hesitation and with certainty that even the hospitals that you take your loved one to are not dementia aware.

They just aren't. There are dozens of people who come in contact with your loved one if they would have to spend time in the hospital. They are not always doctors, and nurses.

You have the janitorial crew, the STNA's, the volunteers who come and get you loved one and take them down three floors for an X-ray. I can tell you that if anyone in the X-ray department knows about dementia it's only because they are dealing with it personally.

So let's be dementia aware, of course. But those of us who are fanning the flames for lack of a better term and claiming all this dementia awareness is going on, is it?

Well, don't tell me, show me. I applaud your endeavors. No one works any harder than me to bring awareness to this disease. But let's keep it within the realm of possibility.

Espousing to have everyone you have contacted or talked to or dealt with be dementia aware is a false sense of security to those who go there with dementia, and their caregivers.

Perhaps the business does work with dementia patients that come in. If that were true, what about the ones who come in to an establishment and no one knows they are even a dementia patient?

I just can't see an eighteen-year-old waitress knowing how to converse with a dementia patient. Some don't have the ability to do their job in the first place, let alone add dementia into the equation.

Let's think about dementia awareness before announcing that any certain business is dementia aware, just ‘cause someone said it is. Again, I am not pointing fingers at any one person or organization.

We like to talk about dementia awareness. I just like to say, in my humble opinion that we are far from being dementia aware. We just are…

Editor's note: Rick's journey with Early-Onset Alzheimer's disease was chronicled in "Fade to Blank: Life Inside Alzheimer's," an in-depth look at the real lives of families impacted by the Alzheimer's epidemic. His story continues on his personal blog on AgingCare.com.

Rick Phelps became an advocate for dementia awareness after being diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at the age of 57. He was forced into early retirement and created Memory People, an online dementia and memory impairment group which supports over 7,000 individuals, all touched in some way by dementia.

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8 Comments

I agree with what you say, Rick. Something else I've seen is that most people don't seem to want to become dementia aware. They aren't interested in things that they generally think of as being diseases of the elderly. I've found I can post a cute picture of a puppy dog on Facebook and get a page of comments. If I post something on dementia or stroke or anything really important, I'm lucky if I even get one like, much less a lot of comments. People want to think of cute pups, while turning their eyes away from a disease that lowers the quality of life for millions.

I watched Bill Gates the other day talking about the probability of an epidemic being the next huge spike in worldwide mortality. Of course, he is probably right. His attention is focused on the young and working class, which is fine with what the Gates Foundation is trying to accomplish. The truth for the older people and those "blessed" with early-onset genes is the epidemic already seems to be here. Since it occurs in later years, it doesn't pull at people's heart strings and fears. The caregivers are younger, but I rarely even see them mentioned. They are an invisible force.

About dementia aware when it comes to restaurants and cities, I don't know. I believe if there was a lot of money coming in because of dementia awareness or if the government mandated changes, then places would become more dementia aware. Many people with dementia don't go out much, so I don't know if businesses would invest too many resources. I'd like to learn more about what dementia awareness would entail.
Since I have been diagnosed with "forgetfulness" possibly dementia, I find this article somewhat interesting. I talk quite freely with anyone about my forgetfulness, even using the word dementia quite freely. I find that most people offer their services, or just a hand or point down the clinic hallway to help out. They seem to know at least what the word means. Just my opinion.
No one in my family of grandparents, aunts and uncles or even my parents had/have dementia. Therefore I never paid any attention to this. It wasn't until I started working at a new company where the owner's wife had Alzheimer's..... then and only then I was learning daily the trials and tribulations of caring for someone with major memory issues as my boss would share his experiences.

We won't get more attention until more well known or famous Hollywood types find themselves experiencing a diagnosis of dementia... and allowing the public to follow them through their journey. Usually we hear when an actor passes on that he/she had memory issues.... like singer Perry Como and actor Charles Bronson. President Ronald Reagan had Alzheimer's but it was kept pretty silent from the public.