Alzheimer's: Make the disease a cause
BY JACKIE KOURI
Wednesday, December 12, 2012
12/12/12 at 4:13 AM
Alzheimer's disease will cost the United States $20 trillion over the next 40 years, the equivalent of 10 Hurricane Katrinas every single year. It strikes at all socioeconomic levels, every profession, without regard to race, religion, education or political persuasion.
There is no way to prevent it, cure it or even slow its progression. Alzheimer's is 100 percent fatal, a guaranteed death sentence. And it will attack up to 16 million Americans by mid-century - up from an already-devastating five million living with the disease today - affecting more families than any other disease.
Alzheimer's is on a fast path that threatens to bankrupt America's families, businesses and health-care systems and the fight against the disease must be made a national priority.
With the development of America's first national plan to address the epidemic, 2012 has marked significant progress in the fight against Alzheimer's. Much work lies ahead to achieve the plan's aggressive goal to prevent and effectively treat Alzheimer's by 2025. Congress and the president now have the opportunity to move toward this goal by working with the National Institutes of Health to determine funding strategies that lead to effective treatments and a cure.
This year, two new free resources for Alzheimer's families have been launched by the Alzheimer's Association. Alzheimer's NavigatorTM is an online tool to help caregivers and people with dementia evaluate their needs, identify action steps and connect with local programs and services, creating customized action plans and allowing long-distance caregivers to participate.
ALZConnectedTM is the first social networking tool for people living with Alzheimer's and their caregivers, allowing members any hour of any day to connect and communicate with others who understand their unique challenges, posing questions, offering solutions, contributing to message boards, creating public and private groups organized around Alzheimer's.
These resources may be accessed at www.alzheimersnavigator.org and www.alzconnected.org
Alzheimer's Association chapters nationwide facilitate more than 4,500 support groups and conduct 20,000 education programs annually. The association provides consultation to 250,000 people in need each year through its toll-free 24/7 Helpline (1-800-272-3900). The only one of its kind, the Helpline is staffed by masters-level counselors, providing information and guidance in more than 170 languages and dialects.
The Alzheimer's Association actively works to spark conversations about this crippling disease and make Alzheimer's a public policy priority. None of these efforts supports any individual candidate, but they all seek to continue elevating Alzheimer's as a priority for our country.
A noticeable shift has been triggered in the way Alzheimer's disease is understood, discussed and acted on in America. With more than five million Americans living with Alzheimer's today, their more than 15 million caregivers and the millions more who will be affected, the Alzheimer's Association will continue in an urgent way ensuring that our nation's leaders hear our clear, unified voice demanding the end of Alzheimer's. You can help.
How can you make a difference? First, encourage the president and your members of Congress to make Alzheimer's a national priority, to work aggressively on the goal of the National Alzheimer's Plan (unanimously approved by Congress in 2010 and signed into law by President Obama in 2011), which is to prevent and effectively treat Alzheimer's disease by 2025. Those with Alzheimer's cannot speak for themselves, but we can speak on their behalf. Your legislators need to hear from you; it is your voice that will make a difference.
Second, help those you know who are living with Alzheimer's disease by directing their caregivers and families to the vast array of free services offered by the Alzheimer's Association at www.alz.org or any of the other specific links mentioned in this article or 1-800-272-3900.
Third, become an Alzheimer's Advocate at http://www.alz.org/join_the_cause_advocacy.asp You will stay informed of research advances and policy and legislative issues and be given opportunities to help elevate Alzheimer's from a disease to a cause.
Jackie Kouri of Tulsa is a member of the national board of directors for the Alzheimer's Association, the largest private, nonprofit funder of Alzheimer's research.
Jackie Kouri: Those with Alzheimer's cannot speak for themselves, but we can speak on their behalf