September 13, 2011

Families urge action as U.S. drafts Alzheimer's plan

Dementia is poised to be the defining disease of aging baby boomers, and to be costly for everyone.

By LAURAN NEERGAARD The Associated Press

(Continued from page 1)

Shou-Mei Li, Hsien-Wen Li
click image to enlarge

Shou-Mei Li cares for her husband, Hsien-Wen Li, an Alzheimer’s patient, in their San Francisco home. About 5.4 million Americans have Alzheimer’s or similar dementia.

The Associated Press

Shou-Mei Li, Hsien-Wen Li
click image to enlarge

Shou-Mei Li holds the hand of her husband, Hsien-Wen Li, an Alzheimer’s patient. By 2050, 13 million to 16 million Americans are projected to have Alzheimer’s, costing $1 trillion in medical expenses.

The Associated Press

Federal health officials, who promise a first draft of the national plan by December, say they're getting the message.

"Folks desperately, desperately want to be able to provide the care themselves," said Donald Moulds, a deputy assistant secretary at the Department of Health and Human Services who oversees the project. "It's very, very hard work. Figuring out better mechanisms for supporting people who are trying to do that work is, one, the right thing to do."

It also may be cheaper for taxpayers. Nursing homes not only are pricier than at-home care, but many families can afford them only through Medicaid, the health care program for the poor. Another key, Moulds said, is better care coordination as Alzheimer's complicates the many other health problems of aging.

But given the budget crisis, the big question is whether any anti-Alzheimer's strategy can come with enough dollars and other incentives attached to spur true change.

"That's a concern, a very real one," said Mayo's Petersen.

The law that requires a national Alzheimer's plan didn't set funding. Almost complete is an inventory of all Alzheimer's-related research and care reimbursement paid for by the U.S. government, to look for gaps that need filling and possible savings to help pay for them.

Other countries, including England and Australia -- and 25 U.S. states, by Moulds' count -- have developed their own Alzheimer's plans.

But the United States is taking a special look at France, where President Nicolas Sarkozy in 2008 pledged to invest about $2.2 billion over five years for better diagnosis, research and caregiver support and training.

Sarkozy told an international Alzheimer's Association meeting in July that he wants to guarantee "that no French family is left without support."

Moulds said U.S. families are telling him that any Alzheimer's plan must bring better understanding of a disease too often suffered in isolation.

"What I want to see is mainly awareness, awareness of this disease and what it does, not only to the individual but also to the network of family and friends that are going to care for the person," said Alfaro, of Aptos, Calif.

"It should be as understood as diabetes, and as treatable," said Audrey Wiggins of Triangle, Va., whose father has Alzheimer's and whose grandmother died from the disease.

 

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