A New Year’s Revolution to End Alzheimer’s

This is the beginning of a new year, and I think it’s time that we organize a revolution against Alzheimer’s disease. The National Alzheimer’s Plan is to find a prevention or effective cure for Alzheimer’s by 2025. When I woke up this morning, I realized that is exactly 10 years from now!

Ten years may seem like a long time, but it isn’t. It takes an average of 12 years for a drug to traverse the path from research lab to the patient. Ninety percent of the drugs in preclinical testing are never tested on humans. Of the ones that make it to human testing only one in five will ever be approved.

So what can you do to join the revolution? Assuming you are not a researcher, your efforts can be focused in a different way. You can join the battle to End Alzheimer’s!

1. Contact your legislators. Write letters, make phone calls, send emails, or visit them in district or D.C. The government funnels research dollars through the National Institutes of Health (NIH).  NIH annually submits a budget request which after modification is submitted to Congress from the President. Alzheimer’s research is underfunded at $480 million. In June, thanks to advocacy efforts, an additional $100 million was added to the NIH budget. To put this in perspective, NIH spends $6 billion (with a B) on cancer research, $4 billion on heart disease, and $3 billion on HIV/AIDS research annually. Researchers use grants to develop treatments. Do the math.
2. Participate in Walk to End Alzheimer’s. More than 450,000 participants in 600 Walks nationwide raised awareness and funds for Alzheimer’s care, support, and research. The Alzheimer’s Association is the largest nonprofit funder of Alzheimer’s research  and the world’s leading voluntary health organization for Alzheimer’s care.
3. Contact your local chapter. The Alzheimer’s Association has 70 chapters that serve communities across the United States. Chapters are the front lines in the battle against Alzheimer’s. They will help you find the resources you need to navigate through the quagmire of living with Alzheimer’s.
4. Arm yourself! No one goes into battle without equipment, ammunition, and a plan. To prepare yourself, acquire knowledge about the disease and develop a plan that will provide quality of life for the person with the disease and the care partner. Learn how to communicate and alleviate the stress caused by behavior.
5. Build a support system. Surround yourself with friends, family, and loved ones who will support you. You need people that will be on your side even when the going gets rough. Build a medical team for the person with dementia and the care partner—primary physician, neurologist, and specialists in any other illnesses such as diabetes, heart disease, cancer.
6. Keep a log of all medical information. Use pen and paper, a document, spreadsheet—whatever works for you—detailing all treatments, medications, side effects, tests. This will help you fill out medical forms and avoid unnecessary tests or medications that caused side effects.
7. Enjoy life! Watch for moments of joy and don’t stop living. Don’t place everything on hold. Alzheimer’s is a disease that can last for decades. Learn to adapt to each stage and pursue activities that put a smile on your face. Love and patience overcome a lot of barriers.

More than five million people in the United States currently have Alzheimer’s disease and new cases are skyrocketing.  Alzheimer’s is the sixth leading cause of death and the only disease in the top ten without an effective treatment or cure. No cure. A hundred percent fatal.

Where is the outcry? The outrage? This country has never been one to sit on its hands and let a disease wipe out millions of people—but that is exactly what is happening with Alzheimer’s.

That is why it’s time for a revolution. This disease and related dementias—vascular dementia, Lewy body dementia, Frontotemporal degeneration, mixed dementia, Parkinson’s, Creutzfeldt-Jakob, normal pressure hydrocephalus, the rare dementias (including corticobasal degeneration)—has to stop. NOW.  It is time to arm ourselves with passion and knowledge to  eradicate Alzheimer’s disease once and for all. Won’t you become an advocate and join the fight to End Alzheimer’s?

Copyright © January 2015 by L.S. Fisher

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