Here I am back from my DC Advocacy Forum adventure and a good night’s sleep in my own bed. The experience was exhilarating and exhausting; serious and funny; intense and lighthearted; inspiring and sobering; and one not to be missed if you ever get the chance to participate.

Do not worry – I will not bore you with the legislation details and statistics. I will provide links for those of you who wish to read the nitty gritty facts and figures.

The bottom line is that real people living with Alzheimer’s Disease and their caregivers – close to 600 delegates from almost every State, descended upon Capitol Hill to take OUR message to the Senators and Legislators that we need HELP and we need it NOW. Let me assure you that either I, personally, or someone else from your State delivered your messages with clarity, brutal honesty, and compassion. The delegation consisted of young children, teenagers, young adults, spouses, parents, grandparents, and those living with Alzheimer’s Disease. Young and old, Republican, Democrat, Independent, Unaffiliated, conservative, liberal, moderate, Southerners, Northerners, Easterners, Westerners – a completely diverse, NON PARTISAN group came together for one cause – Alzheimer’s Disease.

The pace in Washington DC can wear out the heartiest, most athletic soul. This was my third year, so I knew what to expect, but the first timers were obvious to spot. They were the ones with the “deer in the headlights”  look, who exclaimed in shock, “You’ve GOT to be KIDDING!”, every time they realized they had 15 minutes to walk miles, map in hand, to get to the next appointment. Being just a bit more savvy this year, although no less worn out, I knew I could grab a bite to eat between my noon and 1:30 appointment, because there is a corridor connecting the two different buildings in which the appointments were scheduled. A very LOOOONG corridor, with a lot of equally long corridors at the end of turns, but at least I did not have to go outside and go through security again.

As I have mentioned before, the National Alzheimer’s Association makes the decision as to which legislation the delegates are lobbying for. However, we are allowed and encouraged to present our personal stories and how the passage of the legislation will affect us. So here is what we said on your behalf:

• Alzheimer’s Breakthrough Act (S.1492) (H.R. 3286) – Click the link to read the bill, but cutting through the pages of legalese, it simply means that we are asking for $2 billion for Alzheimer’s Disease research at the NIH. Sound like a lot of money? Hardly. Currently, out of every $25,000 spent on CARE for an Alzheimer’s patient, $100, that is ONE HUNDRED DOLLARS, is spent on research. There is a direct correlation between research money and deaths from diseases. Between 2000 and 2006, deaths from heart disease decreased 11.1% because of the research; deaths from HIV decreased 16.3%, and deaths from Alzheimer’s Disease INCREASED 46.1%.  

• Alzheimer’s Detection, Diagnosis, Care, and Planning Act (ADDCAP)– will increase detection and diagnosis of Alzheimer’s Disease and other dementias, and provide, access, information, and support for newly diagnosed patients and their families. This is not even a bill yet. We are looking for co-sponsors to present it as a bill. I wanted to speak up about this one. It is important to note that we spoke with senior aides to our representatives and senators. “Senior” means “experience”. It does not refer to age. Most of these people are 25 years old. So I went to work on educating them:                    

• AD is misunderstood by the public, patients, caregivers, and most of all – DOCTORS, particularly Primary Doctors
• Because of this misunderstanding, it is dismissed, ignored, and misdiagnosed, causing the afflicted and their families undue stress, financial setbacks, and precious loss of treatment when it could be beneficial and increase quality of life.
• It is NOT NORMAL AGING – My 92 year old father is as cognitively sharp as a 40 year old.
• It is NOT exclusive to the elderly – 52 year old Jay Jones, who was diagnosed at age 46, was sitting right in front of them. Tony Pesare told them about his wife who was diagnosed at 39, and died at 43. I told about my husband who started showing signs at 59.

Since legislators are all about $$$$$$$$, I explained the monetary value of early detection and treatment. If my husband had been PROPERLY diagnosed early enough, and stabilized with the appropriate medication, he possibly could have worked a year or two longer. Multiply that by the hundreds of thousands of EOAD afflicted who have to leave the work force early, and you have millions of dollars in SSDI payments saved.

Laura Jones emphasized how much money she and her husband paid INTO the system when Jay was head of a million dollar business, and how they are now what she called a “drain on the system”, because they collect money from the government rather than contribute.

There was Diane, who told how she and her husband had met at age 14, and had been together for over 60 years, and what AD has done to them emotionally. There was Roni, who told of the pain of caring for a mother with Alzheimer’s Disease. We were 13 from the Florida delegation. Stories like ours and yours were repeated by every delegate from every state to each Senator and Representative and/or their senior aides.  We emphasized the need for caregiver help IN THE HOME. Your voices were heard.

• National Alzheimer’s Project Act (NAPA)  (S. 3036)  ( H.R. 4689) – will establish a National Alzheimer’s Project Office and inter-agency Advisory Council responsible for creating a national plan to overcome the Alzheimer’s Disease Crisis.  This is a direct recommendation to come from the Alzheimer’s Study Group that gave its report in a Senate Hearing last year. It was a totally BI-PARTISAN commission – members included Newt Gingrich(R) and former Senator Bob Kerrey(D), as well as former Supreme Court Justice Sandra Day O’Connor.  

For those of you who are into facts, figures, and graphs, you can find them in the 2010 Alzheimer’s Disease Facts and Figures.

It wasn’t all serious business. We had fun, laughs, and enjoyed meeting up with old friends and making new ones. The cafeterias in the House Office buildings are jam packed, and you find a seat wherever you can, which means sitting with people you do not know. It provides an opportunity to educate and inform about Alzheimer’s Disease. One of the men with whom I was sitting, had an elderly next door neighbor with AD. He was surprised to learn from me that his 80ish neighbor shares the disease with 40 and 50 year olds.

I shared a shuttle to the airport with four women – two were African American, and we discussed the problem of reaching the African American community with AD information, resources, and services. Another of the women was a speech/language therapist as I had been.

I have one little amusing story for you, and then some pictures below. The senior Aide to my congressman (Rooney – 16th District Florida) told me that she was familiar with Alzheimer’s Disease and the devastation it brought to patients and caregivers because she did an internship during college at an Alzheimer’s Facility. She was the average aide age of about 24 or 25. Maybe she was older, but they all looked 12  to me. Anyway, I told her that I bet the people she worked with were quite elderly – in their 80’s – to which she concurred. I took the opportunity to tell her about EOAD, and mentioned my own husband, who was barely 60 when his symptoms first occurred. I thought I did a fine job.

When my long day on Capitol Hill was over, I was discussing this incident with our Advocacy and Public Policy Coordinator, who is in her early 50’s, I think. She said to me, “Joan, did it ever occur to you that from her perspective, YOU are elderly?”  Hmmm, well, now if she put it that way……………..I guess to a 20 something, 61 is ELDERLY.

600 of us did our part. If you would like to help, you can look up the bills mentioned above, and write to your congressmen/women and senators asking for their support. If you know who your delegates to the Forum were, mention that you are following up on their visit. If you do not know who they are, mention this website, and that you are following up on my visit. And tell your OWN stories.

My thanks to everyone who e-mailed me with their stories and concerns. I tried to do justice to them.

I have mentioned only a few of the highlights of the Forum. For a slide show of pictures and information, click this link.  

My thanks to the Alzheimer's Association for providing me with a scholarship that made the trip possible.

Joan and Tony Pesare – the new beard is the result of losing a Super Bowl bet with his sons.

Harry Johns, President and CEO of the Alzheimer’s Association, presenting the Humanitarian Award to SS Commissioner Michael Astrue “in recognition of his exceptional leadership in creating the Compassionate Allowances Initiative and the decision to include early-onset Alzheimer's disease and other dementias in that initiative.”

Florida Delegation

Florida Delegation on their way to Capitol Hill appointments

Tony Pesare in front of the Capitol

Please give your opinions and ideas on the bills on the MESSAGE BOARD TOPIC: I Delivered Your Message to Capitol Hill

Feedback to joan@thealzheimerspouse.com

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The Alzheimer Spouse LLC
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