JOAN’S MON/TUE. BLOG– March 30/31, 2009 - ALZHEIMER’S DISEASE – PAST, PRESENT, AND FUTURE- OPINION FROM THE DC FORUM

I have listed links to the important reports and videos from the Alzheimer’s Public Policy Forum above the Daily News. But now it is time for me to give you the heart and soul of my Washington experience. When I strip away celebrity speeches, the excitement, and the whirlwind of activity, I have what I feel are the three main issues of the trip – Why Alzheimer’s Disease has been on the political back burner,  why it is now on the political front burner, and what we can do to keep it up front.

Whenever Alzheimer’s Disease is discussed in a political, medical, or scientific context, the first theme one hears is – OLD.  Most of the speeches I hear start with the words- “One in 7 people who reach 80 years old will develop AD, and that number increases to one in four people when a person reaches 85.” It is my opinion, and remember, this is just my own opinion, that as soon as a listener hears the age “80”, and even worse, “85”, they tune out. Shut down. The thinking, whether one is willing to admit it or not, is – “Well, they’re 80. They’re old. They’re going to die soon anyway.” Those who hold the purse strings are not going to open them up and distribute serious money to a disease that only touches “old” people whom they believe are going to die soon anyway.

I believe that attitude of dismissing an “elderly” disease has been at the heart of the “back burner” policy for Alzheimer’s Disease. So what has changed? Why is AD suddenly receiving so much media attention? Why did a high powered bipartisan commission, consisting of Newt Gingrich, Hilary Clinton(before she became Secretary of State), and Sandra Day O’Connor, to name just a few  ( click here for complete list of participants) spend a year and a half studying Alzheimer’s Disease? Why did they release a report at the March 25, 2009 Senate Hearing that was a scathing rebuke of the current funding for research, care delivery, and caregiver support for Alzheimer’s Disease?

The answer lies in the numbers – age and monetary. Due in no small part to the advocacy of all of us caregivers affected by Alzheimer’s Disease, and especially to the advocacy of those with AD in the early stages who are able to speak for themselves, the Baby Boomer legislators woke up to a staggering fact – “Uh oh. It’s not just my 85 year old grandmother. IT COULD BE ME at age 50, or 55, or 60!” We caregivers, and our early stage loved ones with Alzheimer’s Disease HAVE BEEN HEARD. In every town, in every city, in every district, in every state in the country, you who have told a neighbor, given a speech, written an editorial – YOU HAVE MADE A DIFFERENCE. Those legislators who are still not understanding the nature and importance of Alzheimer’s Disease and its devastating effects on patients and families, are getting it thrown in their faces by the authors of the Alzheimer’s Study Group report, and what an impressive group of authors they are.

Now, if the fear of developing Alzheimer’s Disease themselves at a “younger” age of 50-65, did not get the attention of the legislators, the staggering monetary cost of the disease and its potential to break the bank of the United State’s healthcare system, surely is making them sit up and take notice. I will not go into all the facts and figures here. You can read all the information in depth, by reading the ASG study report, and the 2009 Alzheimer’s Disease Facts and Figures Report.

This year, the legislators, their aides, and their assistants listened to us. The atmosphere and attitude on Capitol Hill was different than last year. Please click this link to read the blog that states the 2009 Alzheimer’s Association’s legislative priorities, and know that they are backed 100% by the ASG report.

And finally, what can we do to make sure that our cause stays on the front burner? I was not simply trying to “rally the troops” when I said in previous blogs that OUR STORIES COUNT. Speaking and writing from the heart make a difference. A huge difference. We Florida delegates were paired up when we went to our “face to face” legislative appointments. There was always a “veteran” delegate who was adept at presenting the Alzheimer’s Association’s legislative agenda, and one or more junior delegates who could present the emotional stories. I was lucky enough to be paired up with our chapter’s CEO, who expertly presented the Alzheimer’s Association’s priorities, and then turned to me for the emotional stories. In the short amount of time allotted, I told my story and yours, concisely, but poignantly. All across the Capitol, this scenario was played out in every legislative office with delegates from every state. We did our part, and I believe we did it well. I urge you to continue our work by telling your stories to every group, political and non-political in every community. We can make a difference.

I would be remiss if I did not acknowledge the contribution of our member, Tony Pesare, whose speech at the Candlelight Vigil at the Lincoln Memorial touched thousands. Tony told of his young wife’s diagnosis at age 39, and death at 43 to the audible gasps of the crowd. Tony spoke to his congressman; he spoke to Newt Gingrich; he continues to advocate for Alzheimer’s Disease funding throughout his community. CLICK HERE to read the full text of Tony’s speech.

MESSAGE BOARD TOPIC: Important Ideas and Opinions from the DC Forum  

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