If we want to declare war on Alzheimer’s, advocates and researchers form the frontlines. What’s at stake in this war? The lives of 5.4 million Americans living with Alzheimer’s disease will be lost. Who lies within the danger zone? One American in eight over age 65 has Alzheimer’s and those who live to be 85 and older have a 50% chance of developing the disease.
The war against Alzheimer’s begins with a battle called the Alzheimer’s Advocacy Forum. Our mission is to carry a strong message to our legislators to implement the National Alzheimer’s Project Act (NAPA) and co-sponsor the HOPE for Alzheimer’s Act. We are the faces and the stories of a heartbreaking disease that currently has no effective treatment or cure.
My sister Roberta and I traveled to Washington DC to join more than 700 advocates to speak with the VOICE of hope and reason. This was my twelfth consecutive trip, and you would think by now, I would just leave it to others. My reminder of why this is so important to me was reinforced by a side trip to the Veteran’s Cemetery on the way to the airport. I placed flowers in front of the columbarium to mark the seventh anniversary of Jim’s passing. I paused to reflect on the Alzheimer’s type of dementia that robbed Jim of not only his life, but also ten years leading up to his death.
Kathy and Sarah at Candlelight Rally 2012
Each year I see familiar faces, especially my good friends Kathy and Sarah, who have run the Alzheimer’s gauntlet from beginning to end. Then there are new faces of caregivers and people with Alzheimer’s who are reeling from the diagnosis and trying to cope with the drastic changes Alzheimer’s has made in their lives.
One of the early events each year is the candlelight rally to remember. The event was scheduled to be at the Capitol Building, but weather forced it indoors. After stirring music and testimonials from former Congressman Moore and other advocates, we lit up glow sticks and held them high in remembrance of our loved ones and to honor the caregivers and persons living with Alzheimer’s.
The roll call of the states was filled with exciting progress made in all fifty states. After a full day packed with research updates, advocacy training, and discussion of our federal priorities, we finished the day with the National Alzheimer’s Dinner where Meridith Viera served as Master of Ceremonies. The Profile in Dignity Award was given to Pat Summitt, University of Tennessee Women’s Basketball Head Coach Emeritus, and her son Tyler. After a humorous film showing Pat motivating her team, she invited us to join a giant team to fight Alzheimer’s, and, of course, losing is not an option.
On Wednesday, we donned our purple sashes and armed with facts, figures, and personal stories, we headed out to storm Capitol Hill with our message. We asked for the resources to support NAPA. For the plan to be successful, we need a two-pronged approach. (1) The plan needs to include benchmarks that allow legislators to evaluate progress, and (2) resources of $100 million annually for Alzheimer’s research, education, and caregiver support.
In addition to NAPA, we asked for co-sponsors for the HOPE for Alzheimer’s Act. The Hope Act focuses on three key areas: diagnosis, care planning services, and medical record documentation.
I know from personal experience, the vital importance of these three areas. Because Jim was so young, it was hard to get a diagnosis. Once we knew he had dementia, care planning for him and support for me were key factors to consider. This Act allows the caregiver to discuss options with or without the person with dementia present. I kept record of Jim’s treatments, other medical conditions, and test results and provided the document to every specialist that treated him. For those who don’t have someone to do this, medical documentation would ensure the entire medical team was aware of all health issues.
After our visits, we entered the Capitol Building to see the House in action. As we went through security, the guard handed me my purple Alzheimer’s Association bag, and leaned close to whisper, “Thank you for doing such a good job.” As I smiled at him, I realized he knew the pain of having a loved one with Alzheimer’s.
Seven hundred Advocates made a commitment give a VOICE to Alzheimer’s research and care. In this war against Alzheimer’s, our VOICEs are indeed mightier than the sword.