Saturday, November 14, 2015

November Is Alzheimer's Awareness Month

Linda Fisher and Janna Worsham at Coffee with Congress
The month of November is a month of pumpkins, fall décor, thanksgiving, and the onslaught of the Christmas season. It is also Alzheimer’s Awareness Month.

I recently attended a “Coffee with Congress” at Provision Living Center in Columbia. I consider this as a “kickoff” to Alzheimer’s Awareness month.

It probably should have been called Coffee with Congress(ional) staff. Newbies to advocacy often become irate when they think they are going to talk to a member of Congress and instead talk to a staff member. I’ve seen perfectly capable advocates waste an opportunity to wholeheartedly share their message. Staff members are focused on what you have to say and they will share the relevant information with their boss.

In this instance, we met with three staff members. I had a great visit with Janna Worsham with Congresswoman Vicky Hartzler’s office, Sarah Barfield Graff with Senator Roy Blunt’s office, and Kyle Klemp with Senator Claire McCaskill’s office. We talked about funding for Alzheimer’s research and thanked them for their support.

We are proud of our Missouri group. Senator Blunt has requested $350 million additional funds for Alzheimer’s research. That is $50 million more than our ask. Senator McCaskill is the top ranking democrat on the special committee on aging. We saw her in action at the Alzheimer’s Public policy forum when she joined Chairman Susan Collins (R-Maine) to head a bipartisan hearing focusing on the financial, economic, and emotional challenges facing those with Alzheimer’s disease and their families.

In addition, I wanted to thank Congresswoman Vicky Hartzler for her unwavering support for Alzheimer’s research. One year when we brought a letter asking for a modest increase in Alzheimer’s research, she had already sent a request for $1 billion. She also uses Facebook, Twitter, and her newsletter to create her own storm of Alzheimer’s awareness. She and I connect on a personal level because we know the heartbreak of losing a loved one to dementia.

We also discussed the HOPE for Alzheimer’s Act and the asset the Act would be for families dealing with the disease. The Act is a common sense approach to providing Medicare coverage for comprehensive care planning services for newly diagnosed individuals and his or her caregiver, ensure that a diagnosis and care planning are included in medical records, and to require the Department of Health and Human Services to educate providers about the benefits.

As a caregiver, I kept track of Jim’s medical conditions—symptoms, diagnosis, tests run, side effects of prescription medications, and any information relative to his health. I took prints of the spreadsheet to every appointment. This kept him from being prescribed medications that he couldn’t take, duplication of tests, and helped me fill out all those darned forms. What happens to the people who don’t have someone to tell every specialist what others have done? The HOPE Act doesn’t have a “Score” which is an indication of what it would cost the government. Somehow, I think that instead of a cost to the government, it would save patients and the government by reducing duplication of services or writing prescriptions for medicine that has already created problems.

We heard caregiver stories including a care partner who was there with his lovely wife. He told of their problems with getting a diagnosis of early-onset Alzheimer’s. I shared some of my caregiving experiences. Several Greater Missouri Chapter staff and Board members were present to tell their stories and share their passion.

The meeting was informative, encouraging, and relevant. Those of us attending the Coffee with Congress left with a conviction to do everything within our power to end this horrible disease. We look forward to the day that Alzheimer’s becomes a manageable disorder, or better yet, when researchers find a cure.


Copyright © November 2015 by L.S. Fisher

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