Outreach and Registry Program to help combat and treat Alzheimer's disease

Sep 15 2009

Today Senator Jay Rockefeller announced an unprecedented and powerful partnership to help combat and treat Alzheimer's disease in West Virginia. The Alzheimer's Outreach and Registry Program (AORP) at the Blanchette Rockefeller Neurosciences Institute (BRNI) at West Virginia University, brings together some of West Virginia's most important leaders in the fight against Alzheimer's disease. In addition to BRNI, the partners include the West Virginia Medical Foundation; the Alzheimer's Association, West Virginia Chapter; and the West Virginia Bureau of Senior Services. The launch of AORP is made possible through the sponsorship of the West Virginia Cable Telecommunications Association (WVCTA), led by Suddenlink, Comcast and Time Warner Cable. The statewide program has been in development for nearly two years thanks to funding by the state of West Virginia and the Claude Worthington Benedum Foundation.

For the more than 44,000 West Virginians (age 65 and over) who have Alzheimer's disease and the approximately 85,000 caregivers who care for them every day -- sometimes for more than a decade -- diagnosis, treatment and care during the progression of the disease is uncertain, confusing and catastrophically expensive. To meet these needs, BRNI has designed a unique program to intensify education and data collection aimed at physicians and other healthcare providers across West Virginia. The goal is to help physicians improve diagnosis and to insure their access to the latest in treatment of the disease. The program will also make certain that physicians and providers know how to connect families and caregivers to vital support networks in communities across the state.

"To help those battling memory disorders, we need to arm our entire network of health care providers and caregivers with the tools they need to diagnose, treat and care for them," said Senator Jay Rockefeller, founder of the Blanchette Rockefeller Neurosciences Institute at West Virginia University. "Through strong support of key groups in West Virginia, we will now be able to offer them education and information essential to carrying out this crucial mission. And I'd like to thank the West Virginia Cable Telecommunications Association and everyone involved for making it possible."

AORP will host live programs for physicians and other providers across the state beginning in October consisting of:

1. A continuing medical education program to help keep physicians informed and proactive in the latest diagnostic techniques and treatment;
2. A continuing medical education program to help physicians and other healthcare providers connect caregivers to local resources, education and support and ensure a better link between treatment and care; and
3. The first ever West Virginia Alzheimer's Disease Registry to collect data on the disease across the state.

These live continuing medical education programs, led by the West Virginia Medical Foundation and presented in cities around the state by WVCTA, will intensify the education effort targeting physicians.

"We are proud to bring the Alzheimer's Outreach and Registry Program at the Blanchette Rockefeller Neurosciences Institute to physicians and other healthcare providers across West Virginia as a component of our long-standing commitment to the people of this state," said Jerry Kent, Chairman and CEO of Suddenlink Communications on behalf of the West Virginia Cable Telecommunications Association. "We applaud Senator Rockefeller and others for their leadership to improve Alzheimer's research, education, and outreach."

West Virginia is only the third state in the country to create an Alzheimer's Disease Registry. The registry will allow physicians to input data on individuals and the disease that in turn will help better allocate state resources and support research.

"Today, there is no reliable early diagnosis for Alzheimer's disease, and there is no cure or consistently reliable treatment," said William Neal, M.D., pediatric cardiologist and board member of the West Virginia Medical Foundation. "This puts a special burden on physicians to stay up on the latest advancement in care, and to understand community resources available that can help caregivers."

The Alzheimer's Association, West Virginia Chapter and West Virginia Bureau of Senior Services will provide critical educational and support resources and services for the outreach program.

"It is imperative that physicians and families recognize the early warning signs of Alzheimer's. Early diagnosis is critical," said Jane Marks, Executive Director of the Alzheimer's Association, West Virginia Chapter. "In addition, physicians can play a key role in empowering individuals with the disease and their caregivers by connecting them to available support and education resources. Until we find the cure, knowledge and support will enable those facing the challenge of Alzheimer's to navigate this difficult journey knowing they are not alone."

"As the state's population continues to age, the impact of Alzheimer's disease becomes more profound," said Dr. Sandra Vanin, Commissioner of the West Virginia Bureau of Senior Services. "These initiatives will help those of us at the state level to better understand the needs of Alzheimer's families and to allocate our resources as effectively and efficiently as possible."

The Alzheimer's Association estimates that the disease costs West Virginia families and caregivers who care for those with Alzheimer's disease more than $800 million in direct costs and lost wages annually (2009 Facts and Figures report).

Governor Joe Manchin III has signed laws passed by the West Virginia Legislature to contribute $1 million toward the outreach program and $100,000 to create the Alzheimer's Disease Registry. The Benedum Foundation has contributed $200,000 to further Alzheimer's research and outreach at the Blanchette Rockefeller Neurosciences Institute at West Virginia University.

WVCTA will lead the production of an education video, in coordination with all of the partners, that will tell the stories of Alzheimer's families and caregivers through their individual experiences, in ways that address the urgent gap in understanding between physicians, patients and caregivers. These will be made available to every physician in West Virginia.