JOAN’S WEEKEND BLOG – FEBRUARY 19-21, 2010 – JOAN IN DC – ADVOCATES IN ACTION – HOW YOU CAN PARTICIPATE

In just 16 days, I will be off to my third Alzheimer’s Advocacy Forum in Washington, DC. This year, I have the honor of being one of their featured advocates, and recipient of a partial scholarship to help pay for the trip. For those of you who are unfamiliar with the Forum, I will explain a little about it, and you can click here to read comprehensive information about last year’s experience. I will also explain how you can become an at-home advocate.

The Alzheimer’s Association and their advocates work all year long on lobbying local, State, and Federal officials on behalf of our needs. Before going to the Forum, the National Alzheimer’s Association chooses a certain number (usually two or three) of specific issues on which to focus our lobbying efforts. We meet in DC – last year there were over 500 of us descending on Capitol Hill- for 3 days of meetings, seminars, information, and education. Our visit culminates with a trek to the Senate and House Offices for appointments with Senators, Representatives, and their aides to present our case for raising awareness and funds for Alzheimer’s Disease research and programs.

Except for the fact that I hate freezing weather and snow, which is why I moved to Florida in the first place, no longer own a pair of boots, and have no idea where I stored my gloves, I am looking forward with excitement to the trip.

The following is a reprint of part of a blog from June09 explaining more about advocacy and how you can become involved.

Are you aware of how important you are in the fight against Alzheimer’s Disease? In the fight to raise awareness of the disease, increase funding for research, and in making a difference? If you think you have to spend hours going to committee meetings, help frame policy, and travel to Washington DC or your State Capital to meet with lawmakers, you are mistaken. You certainly can do all of those things if you choose to and have the time, but what caregiving spouse of an Alzheimer’s patient has that kind of time? I am going to tell you what we CAN do to help without ever leaving our homes.  

It is most important to understand that there are two main avenues of advocacy – Following the guidelines of the Alzheimer’s Association is one; going it on your own as a private citizen caregiver is the second. If you choose to get involved in advocacy with the Alzheimer’s Association, you must understand that through intensively difficult, tedious, time consuming work, they set the goals and policy for what issues they are going to advocate. They recruit advocates – everyday folks like you and me who are dealing with the disease on a day to day basis, are veteran graduates of caregiving, or are just interested in the Alzheimer's cause for their own personal reasons – to volunteer to help them do the nitty gritty work of meeting with legislatures, making phone calls, making contacts who can get right to the state or federal legislator who can make things happen. If you choose this route, you are representing the Alzheimer’s Association, and must advocate for whatever legislation they have decided to back. (And believe me, they put a LOT of research and work into which bills they feel are important to the Alzheimer cause). If you are interested in becoming an active Alzheimer’s Association advocate, call your local Alzheimer’s Association office.

OR you can go it alone as a private citizen. My philosophy has always been that we are at our best doing what is comfortable for us. I am NOT comfortable soliciting for money – as evidenced by my dismal performance at our Publix fundraiser.  I am comfortable writing and educating, as evidenced by this website. Identify your cause – what is it you want people to know – what cause is most important to you - match it to your strength, and go with it.

Before our friend and member Tony Pesare, became an Alzheimer’s board member, he took on the cause of raising awareness of EOAD (Early Onset Alzheimer’s Disease) himself. He is a businessman in his community, so he was comfortable speaking to reporters, community groups, business leaders, and through his business contacts, managed to get billboards about the disease made and displayed in his county.

Our member Marsh, is a retired physician, who now knows that when he was practicing, he was not aware of the true stress and burden of caregiving. Now that he sees things from a caregiver's perspective, he speaks to doctor’s groups about the importance of listening to the caregiver and addressing their needs.

Dr. Mary Newport uses her experience as a physician, researcher, and spousal caregiver, to educate caregivers about MCT and coconut oil’s benefit on memory.
You do not have to do public speaking or contact businesses to make difference. The number one most important thing you can do as a caregiver is raise awareness of what Alzheimer’s Disease is and does to the patient and caregiver alike by TELLING YOUR STORY. I have mentioned this before, but it bears repeating – Nothing makes more of an impact on everyone – legislators, reporters, doctors, business leaders, and ordinary people, than your own personal story. If each and every one of you told your story to ONE person, you would be making notable and worthy differences in raising awareness of Alzheimer’s Disease. The greater the awareness, the greater the chance of our pleas for caregiver assistance, respite, and funding will be acted upon.

As I mentioned in the opening paragraph, you don’t even have to leave your house to accomplish this. Telephone, e-mail, letters. Check out this blog for information on what our members do to make a difference.

If you are a political junkie, you can find out what Alzheimer’s legislation is pending, and call and visit your legislators to advocate for its passage.

If you want to sign up to be an advocate, click here.

Feedback to joan@thealzheimerspouse.com

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The Alzheimer Spouse LLC
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