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Families urge action as US drafts Alzheimer's plan

Associated Press | 9/13/2011, 11:42 p.m.

“We just have to muddle through, but we don’t know how long we can,” Rexrode says.

And while Medicare will pay for doctor bills and medications, even getting to the doctor can be a hurdle. When her 89-year-old mother with advanced Alzheimer’s developed a urinary tract infection, Susan Lynch couldn’t find a doctor willing to come to her parents’ home in Fall River, Mass.

Lynch flew there from her Gaithersburg, Md., home but couldn’t carry her mother down the stairs. A private ambulance service didn’t have an opening for weeks. Lynch wound up calling the town ambulance for a costly but Medicare-covered trip to the emergency room.

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,” says 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 only can afford them through Medicaid, the health care program for the poor. Another key, Moulds says, 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,” says Mayo’s Petersen.

The law that requires a national Alzheimer’s plan didn’t set funding, and Moulds is mum on a possible price tag. 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 U.S. 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 says it’s too early to know what’s working in France. But 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,” says Alfaro, of Aptos, Calif.

“It should be as understood as diabetes, and as treatable,” adds Audrey Wiggins of Triangle, Va., whose father has and grandmother died of Alzheimer’s.

Associated Press