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Advancing Alzheimer's Research

Web site aims at increased communication, not competition.

In an effort to increase communication between medical professionals researching Alzheimer's disease, a "center without walls" has been created.

Initiated by Virginia's Alzheimer's Disease and Related Disorders Commission, the virtual center, which began as the brainchild of Dr. Zaven Khachaturian, was put online at the start of 2005.

"Long term, we hope to have the Web site set up so citizens themselves can use it," said Bill Peterson, deputy commissioner Virginia Department for the Aging. "Or family members will be able to go to the Web site and get information for Virginia."

Created at the request of the commission, which is comprised of 15 medical professionals from across the state, the mission behind the site was to "establish a much needed organizational structure for coordinating purposeful activities and initiatives on Alzheimer's and other dementing illnesses within the Commonwealth," according to the commission's August 2004 report to Jane Woods, Virginia's secretary of health and human resources.

In addition, another hope for the Web site — called AlzPossible [www.alzpossible.org] — was that it would stop competition between medical professionals studying the disease.

"The notion was to get us all working together," said Doctor James L. Olds, neuroscientist and professor at George Mason University. "My scientists often don't have access to what scientists are doing at other labs at UVA or a lab at Virginia Tech or at William & Mary."

The hope is that when doctors and scientists at universities and other medical research facilities discover something about the disease, they will be able to share that information through the Web site.

"There may be a built-in reluctance to share discoveries out of the fear that someone else might get credit for it," said Peterson. "We want to build trust and camaraderie throughout the state so people realize we're all working for the same thing."

Since information gathered in Washington, D.C. and southern Maryland can impact Virginia as well, Peterson said that they hope to increase communication across state lines as well.

"Virginia is the first state to pursue a virtual approach," said Olds, former chairman of the commission and current member. "As a neuroscientist, I think this is wonderful because we can get information from across the state."

AN ESTIMATED 4.5 million Americans have Alzheimer's disease; a number that has more than doubled since 1980, according to the Alzheimer's Association.

Statewide, it was estimated that in 2004 more than 100,000 Virginians had been diagnosed with the disease according to the commission's report.

"About 95 percent of what we know about Alzheimer's was learned in the last 15 years," said Ian Kremer, chairman of the commission. "The number of people with Alzheimer's is only going to get bigger if we don't make medical discoveries. A failure to prepare is only going to make it worse."

Kremer, who was appointed to the commission by Gov. Mark Warner (D), said currently 13 percent of the state's population 65 years and older has been diagnosed with Alzheimer's disease.

In 2010, it is estimated that 145,019 Virginians will be diagnosed with the disease and that number will increase to 240,305 by 2030, according to Kremer.

"It's terrifying, it's really awful that Virginia already has well over 105,000 people with Alzheimer's," said Kremer. "It's incomprehensible and yet it's there, so we really have no choice but to change the landscape."

According to the AlzPossible Web site, Alzheimer's disease is the most prevalent form of dementia and currently costs almost $100 billion a year for medical charges, institutionalization and informal care costs.

The annual average cost of care is estimated to be between $40,000 to $60,000 per patient, per year.

According to the Alzheimer's Association, the average lifetime cost of care for an individual with Alzheimer's is $170,000.

Nationally, it is estimated that 500,000 new patients are diagnosed with the disease every year.

"It will bankrupt the state, it will bankrupt localities, it will bankrupt families," said Kremer of the projected increase of patients with Alzheimer's and cost of care.

Kremer said one hope of the virtual Alzheimer's site is that it will generate national interest and allow for the commission to apply for grants to further research.

In addition, the hope is that once it is fully established the AlzPossible site will integrate all relevant programs, services and other activities discovered with current information and care practices.

According to the Web site, the goal of the virtual center is to "develop effective interventions to maintain and/or extend the independent functioning of people with the disease."

"VIRGINIA HAS too many people with dementia — either Alzheimer's or dementia," said Olds. "As Baby Boomers get older and we live longer, more of us are going to be susceptible ... this is a big burden and it will be an even bigger burden if something isn't done."

According to the commission's 2004 report, the risk of Alzheimer's disease at birth is 15 percent, but a person's risk increases to 30 percent if he or she has a parent that has the disease.

If still alive at 85 years old, that risk rises to almost 50 percent.

The commission also wants to reach into communities to further educate law enforcement officials about how to work with people with dementia as well as extend research results.

"Ideally, what we'd also like to see is some way to go from what researchers have discovered directly to the families," said Peterson. "It is absolutely no good to have all this research if you can't get it out to the families who need it."

On the virtual center site, the commission also outlined generic challenges, problems and opportunities that the state needed to address and created seven work groups to address some of those issues.

"We need a lot of patients to study," said Olds about research practices. "We'd like to be able to do large-scale studies across the state, gather information from assisted living facilities and pool data from all over."

He said the next step for the Web site will be to reach out to additional medical professionals to increase awareness about the sharing of information and to continue with research.

"We want Virginia to be a leader in managing dementia and making the lives of people with the disease easier and longer," said Kremer. "I'd love for [a solution] to come from Virginia, but regardless, one has to come."