The research would seek to identify genes that increase the risk of Alzheimer's disease, develop tests for those considered at highest risk, and create better assessments of how cognitive impairment and dementia burden the nation.
Nick Zullo, director of programs and advocacy for the Utah Alzheimer's Association, said research is critical. But he's just as interested in the promise of $26 million for caregivers.
More than 80 percent of all people with Alzheimer's, including those at the middle and late stages of the disease, reside at home or in a family setting, Zullo said.
"To have additionally, compassionately, $26 million to support the burden of unpaid caregivers, that's significant," he said. "That's new."
Salt Lake City resident Bonnie Shepherd cared for her husband, Ned, who died in August. He was diagnosed with frontotemporal degeneration in January 2007 but had begun having speech and behavioral problems five years earlier.
If it were up to her, Shepherd said, she'd make sure some of that $26 million went to helping caregivers pay for respite care.
Taking care of a loved one with dementia is "24-7," she said. "They're up at night, escaping, whatever. You don't have a full night's sleep. A caregiver becomes so exhausted. "
Shepherd received a grant from Jewish Family Services to hire professionals to care for her husband so she could get away every once in a while. The more respite a caregiver gets, "statistically, the patient, your loved one, can stay home an extra year or more," she said.
A 2011 report from the Alzheimer's Association shows that 5.4 million Americans live with the disease, including more than 32,000 in Utah. The report says there are more than 132,000 Alzheimer's and dementia caregivers in the Beehive State, who in 2010 provided more than 151 million hours of unpaid care, valued at $1.8 billion.
By 2050, nearly 16 million Americans will have Alzheimer's. The report says 10 million baby boomers will either die with or from the disease, which is projected to cost the nation $20 trillion.
USAgainstAlzheimer's, a national advocacy network and campaign organization, calculates that the current $450 million in funding amounts to about $90 per person living with the disease.
Three recently published studies have used new techniques to detect the disease and examine how it spreads in the brain. "This was major," Foster said. But it would be a mistake to just allocate extra research money for a couple of years, he said. "These investments in medical research and medical care have to be sustained over time."
In 2011, one of the most important advances was changing the criteria for diagnosing Alzheimer's, which Zullo said was the first such change in two decades. That means doctors now have tools for pre-symptomatic testing.
"Physicians are going to need training," he said. "It has to get to primary care practice. That's going to take some time."
The national Alzheimer's Association supports a congressional bill called the Breakthrough Act that would immediately boost Alzheimer's research to $2 billion per year. Zullo said that a decade ago, federal funding was on track to reach that amount but was cut as the nation's economy crashed and two wars raged. Passage of the act "would get us back to where we need to be," he said.
Federal funds for Alzheimer's
The Obama administration on Tuesday committed an additional $50 million to the National Institutes of Health for Alzheimer's research and $26 million for caregiver support, provider education and public awareness. The administration said its 2013 budget would add $80 million for research.
The funding follows President Barack Obama's signing of last year's National Alzheimer's Project Act, which called for an aggressive and coordinated national plan to counter the fatal disease's devastating effect on patients, families and health care spending.