“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 1.6 billion euros, 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.”
On Tuesday, a report from the advocacy group Alzheimer's Disease International says every country should have a national dementia strategy that stresses earlier diagnosis. Most of the estimated 36 million people worldwide living with dementia, and as many as half of U.S. patients, haven’t been formally diagnosed, the report says. That’s in part because of stigma and the belief that nothing can be done, but the report notes that even today’s imperfect medications can help, a diagnosis lets families plan ahead, and scientists are working to create treatments that one day may slow the disease.
At meetings around the U.S., families say 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.