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Notables Appeal to Congress for Federal Action to Fight Alzheimer’s

A federal office would oversee a major prevention and care initiative for this devastating disease.

Retired Supreme Court Justice Sandra Day O’Connor—who last year went before Congress to testify publicly about the private heartbreak of watching her husband, John, struggle with Alzheimer’s disease—today returned to Capitol Hill to help present a bold national plan for combating the illness. The plan calls for a federal office to oversee a major Alzheimer’s prevention and care initiative for this devastating disease.

The sweeping proposals unveiled today in testimony before the Senate Special Committee on Aging come from a group of scientists, former politicians and dignitaries like O’Connor, charged by Congress with developing a strategy for dealing with Alzheimer’s.

The degenerative disease of mind and memory affects more than 5 million Americans who are cared for by another 10 million Americans. And yet, O’Connor testified, “our nation has no plans for a federal effort to find a solution or to help manage the costs.”

“Developing more effective care for those afflicted by Alzheimer’s and ultimately preventing and curing the disease are efforts that can, should and must be undertaken,” O’Connor told the committee, whose chairman is Sen. Herb Kohl, D-Wis.

“Without urgent action,” she said, “ultimately one out of every two Americans over age 80 will have Alzheimer’s.”

Key recommendations in the group’s blueprint, “A National Alzheimer’s Strategic Plan,” include a federal office to oversee stepped-up scientific research to detect and prevent the disease and an improved, “reengineered” care system for Alzheimer’s patients, with Medicare payments based on quality of care. The Alzheimer’s Solution Project’s office would be funded by Congress and set up next year to coordinate the prevention and care efforts.

The recommendations come as the country braces for an epidemic of Alzheimer’s, the harrowing form of dementia that people tell pollsters they fear more than heart disease or stroke.

The greatest risk factor for the disease is age—the longer a person lives, the greater the possibility—and in just two years millions of boomers begin to turn 65. One in eight people age 65 and older has Alzheimer’s.

The recommendations require legislation and funding, and while there appears to be bipartisan support for efforts to combat the disease and support caregivers, it remains to be seen whether the report will result in any successful bills this session.

Maria Shriver, former broadcast journalist and the wife of California governor Arnold Schwarzenegger, R, told the committee, “I hope you will do the bold thing, the courageous thing,” and use the group’s report “as a road map for the real legislation we need to stem the tide of what promises to be a horrific epidemic.”

Shriver, whose father, Sargent Shriver, has Alzheimer’s, said when he was first diagnosed in 2003 that she “felt confused, powerless, and alone.” As a caregiver, “no matter who you are, what you’ve accomplished, what your financial situation is, when you’re dealing with a parent with Alzheimer’s you yourself feel helpless,” she said.

O’Connor, the first woman to appointed to the U.S. Supreme Court, stepped down from her position in 2006 to care for her husband. A very private person, she finally opened up about the family’s anguish last year at a hearing on the disease, saying, “My beloved husband, John, suffers from Alzheimer’s.”

“I submit to you that until you have actually stared Alzheimer’s in the face … you cannot truly understand the deep sense of frustration, fear, helplessness and grief that accompany it,” O’Connor said then.

The disease is not only heartbreaking, it is costly. Health care costs for people with Alzheimer’s are three times greater than for people with other diseases, according to a new report by the Alzheimer’s Association.

If current trends continue, Alzheimer’s will cost Medicare and Medicaid a projected $19.89 trillion between 2010 and 2050, Newt Gingrich, former speaker of the House and the co-chair of the Alzheimer’s Study Group presenting the plan, told the committee.

“The Alzheimer’s Solution Project should be seen as both the biggest single humanitarian opportunity and the biggest single entitlement savings opportunity in America today,” he said. It fits the human and fiscal needs of the American people, Gingrich added.

Today, many families depend on original Medicare’s fee-for-service system to cover the costs of care—a system that leads to very poor care for Alzheimer’s patients because it rewards volume, the group reported.

The more patients a health professional can serve and the more services he can offer, the more money he makes, said Bob Kerry, former senator and now president of the New School in New York and co-chair of the study group. But good care for dementia patients involves individual time and attention and a high degree of coordination with other doctors and caregivers.

Kerry told the committee a better care system would develop “value-based” payments for dementia care and include training and support for family caregivers.

The group “has given us a good understanding of where we are today and where we need to go,” Kohl said.

The Alzheimer’s Association said in a statement today that it planned to seek enactment of the core recommendations, with president and CEO Harry Johns saying “There must be an investment in Alzheimer’s proportionate to the current and future impact of the disease.” He called the current funding “grossly inadequate.”

Barbara Basler is a senior editor at AARP Bulletin Today.

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