Thursday, November 5, 2015

Dementia " Expert "

If you have car trouble who do you go to? If you have furnace issues, who do you call? If your computer just stops for no apparent reason, who would you take it to?
The answer to these are, or should be obvious. If you car needs repaired, you take it to a reputable car repair garage. If you furnace is on the blink, you call a heating and cooling specialists. If your computer isn't working, you take it to someone who repairs computers.
Keeping this in mind, why is it so many individuals rely on what some "expert" has to say when it comes to dementia? And the only thing that makes these individuals experts is their status. Not what they actually know about dementia. 
I never have, and never will understand this. Take Seth Rogan for example. He's a comedian, an actor, the son-in-law of a dementia patient. But since he is who he, everyone thinks what he has to say is gospel when it comes to dementia. 
He did himself and the disease a disservice when he spoke in front of the Senate a year or so ago. He chose this time to make jokes about dementia and his marijuana usage..There is time and place for this behavior and that certainly was not it. There were four Senator's present. That in itself should have told you something. 
There are many stigmas's that go along with dementia. One of them being but is always overlooked is the fact that there are so many "experts" that are in the dementia world, yet they don't have the disease.
Think about the commercials on tv that reference cancer, or stroke victims, heat attack victims, etc.These commercials talk to cancer patient, or a person with that has had a heart attack, or stroke. Some granted are actors, but most have had the disease that the commercial is about.
When you see a commercial on tv about dementia, you see a person portraying that they have dementia,or you see someone who is walking to cure dementia, you don't see and I never have seen an actual dementia patient in these commercials. 
Why is that? This is the only disease that I know of that many rely on the "expertise" of people who don't have the disease.
When we were invited to Washington DC for a conference there on dementia and to meet with members of Congress and the Senate, the key speakers there were Kathleen Sabillus, and Newt Gingrich. Along with them there were three other speakers.
None of them had dementia, obviously. There was not one person on the stage that had this horrible disease, yet there were plenty of "experts" there to tell the audience all about the disease. Does anyone really believe that Newt Gingrich, who was the very next day announcing his candidacy to run for President of the Untied States, really know what it takes to care for a dementia patient?
After Speaker Gingrich spoke they opened the room up for questions. It was about this time that the representatives of the Alzheimer Association realized that they made a mistake inviting me.
I was the third one called on in a room of over 400 people. I stood up, introduced myself and went on the explain my disbelief that there was not one dementia patient being represented on the stage to tell what they go through dealing with dementia day in and day out.
Even then, know one really understood what I was saying. It certainly didn't have to be me up on that stage telling my story, it could have been any patient. The problem was there wasn't any patient there to talk about what it is like to have this disease.
This is where the AA and many other organizations are missing the boat. They pick these poster boys out each year, and every year it's some new celebrity who either has a loved one with dementia or knows someone who has dementia.
With their celebrity status alone people just take for granted they know what they are talking about. This is a misnomer.
Belive me when I tell you that Kim Campbell will never know what the common person deals with who cares for a dementia patient. Anyone who has made millions of dollars will not know what it is like to care or provide for a dementia patient, simply because they can provide a level of care that is second to none at the blink of an eye.
And there is nothing wrong with this. The issue comes when they get on national tv, or are interviewed in some magazine and tell how difficult they have it.
They don't. And anyone who thinks for a minute that Mr. Rogan, or Kim Campbell, or Pat Summit know what it is truly like being in the trenches of this disease, is simply misguided by their celebrity status.
Pat Summit came out when she was diagnosed and said on national tv that even though she was diagnosed wth Early On-Set Alzheimers, nothing was going to change. She actually said nothing was going to change. And the media ate it up.
She would continue to coach, and she would beat this thing. She wasn't a quitter and will not start now. Well, she did quit coaching women's basketball the very next year. And she has found out that no amount of money will provide or allow her to live the life she once did.
Pat Summit in one interview set back the awareness of dementia. She should have never have given that interview, and she should have at least been questioned on how she came to the conclusion that nothing was going to change.
But, again, her celebrity status affords her to say stupid things like nothing will change, and not be challenged on it.
So, if your transmission is going out on your car, don't take it to a place that works on motorcycles.
Someone standing in a garage does not them make them a mechanic. In other words, look at the source of some of these claims from the "experts" of dementia.
Like I have said for years now, you want to know about dementia, ask a patient. You want to know about caregiving for a dementia patient, ask someone who does it.
They are the experts....period.
© Rick Phelps 2015