W.Va. ups Alzheimer's efforts for doctors, patients
MORGANTOWN, W.Va. -- A new outreach program targeting West Virginia physicians could help lead to earlier diagnosis, better treatment and more support for tens of thousands of people who suffer with Alzheimer's disease, organizers announced Monday.
The West Virginia Alzheimer's Outreach and Registry Program will offer continuing medical education for doctors, starting with five courses this fall and Web access for those who want to participate online.
"Registry and outreach are antiseptic words with all of humankind behind those words,'' said Sen. Jay Rockefeller, D-W.Va., who announced the program at the Blanchette Rockefeller Neurosciences Institute. The research center at West Virginia University is named for his mother, who died in 1992 after her own battle with the memory-stealing disease.
"It's really putting a moving train on a solid track all over the state,'' Rockefeller said, "starting with education.''
The program will help educate physicians about resources that could help their patients and their patients' families, including state-funded respite services for exhausted caregivers.
"Sometimes the opportunity to take a shower, take a walk, take a nap is so critical,'' said Sandra Vanin, commissioner of the Bureau of Senior Services, whose agency is a partner in the initiative along with the West Virginia Medical Foundation, the state Alzheimer's Association and the West Virginia Cable Telecommunications Association.
The registry, meanwhile, is a secure database allowing doctors to share information about demographics, diagnosis and treatment, with password-encrypted access and other measures to protect patients' privacy.
The registry may help researchers, policy makers and legislators better understand the scope of the problem and what financial resources are needed to address it, said Dr. Bernard Schreurs, program director for the outreach project.
Experts estimate more than 40,000 West Virginians suffer from the disease, but Schreurs said the figure could be much higher.
MORGANTOWN, W.Va. -- A new outreach program targeting West Virginia physicians could help lead to earlier diagnosis, better treatment and more support for tens of thousands of people who suffer with Alzheimer's disease, organizers announced Monday.
The West Virginia Alzheimer's Outreach and Registry Program will offer continuing medical education for doctors, starting with five courses this fall and Web access for those who want to participate online.
"Registry and outreach are antiseptic words with all of humankind behind those words,'' said Sen. Jay Rockefeller, D-W.Va., who announced the program at the Blanchette Rockefeller Neurosciences Institute. The research center at West Virginia University is named for his mother, who died in 1992 after her own battle with the memory-stealing disease.
"It's really putting a moving train on a solid track all over the state,'' Rockefeller said, "starting with education.''
The program will help educate physicians about resources that could help their patients and their patients' families, including state-funded respite services for exhausted caregivers.
"Sometimes the opportunity to take a shower, take a walk, take a nap is so critical,'' said Sandra Vanin, commissioner of the Bureau of Senior Services, whose agency is a partner in the initiative along with the West Virginia Medical Foundation, the state Alzheimer's Association and the West Virginia Cable Telecommunications Association.
The registry, meanwhile, is a secure database allowing doctors to share information about demographics, diagnosis and treatment, with password-encrypted access and other measures to protect patients' privacy.
The registry may help researchers, policy makers and legislators better understand the scope of the problem and what financial resources are needed to address it, said Dr. Bernard Schreurs, program director for the outreach project.
Experts estimate more than 40,000 West Virginians suffer from the disease, but Schreurs said the figure could be much higher.
West Virginians tend to keep health care matters private, he said, and many patients may go unrecognized far longer than necessary. The sooner doctors learn to quickly test a patient's cognitive abilities, the sooner they can spot early signs of dementia and administer treatment to slow the progression.
West Virginia is the third state to set up an Alzheimer's registry, behind South Carolina and New York. Legislators approved $1 million to help launch the outreach program and $100,000 to create the registry.
Rockefeller said his mother's generation never talked about dementia, and he praised a patient who attended the announcement for having the courage to be a face of the disease.
Debbie Thrall, a 57-year-old former schoolteacher from Parkersburg, was diagnosed with early onset Alzheimer's more than three years ago after she started to misplace pencils and other items on her desk.
"Then one day I had a little pop in my head,'' she said, and her ability to remember or process anything involving numbers vanished. She was frightened, and soon found herself feeling paranoid and overwhelmed by simple tasks.
"When you are doing something that is hard for you, it's like you're walking into a Wal-Mart and everything is just blowing around you,'' she said.
Jerry Kent, chief executive of Suddenlink Communications, said his company wanted to do more than write a check to help people like Thrall, so it will lead production of an educational video for doctors.
Kent said he realized how widespread the problem was when a driver listening to a conversation about the initiative shared his own story about a relative: The woman, in her 90s, died of starvation because she couldn't remember to feed herself.
"If you're working on Alzheimer's,'' Rockefeller observed, "you're working to improve the lives of people everywhere.''
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