August 21, 2012 | By Diane C. Lade, Staff writer
The National Alzheimer’sProject Act, signed into law last year, authorized millions in new funds to be spent on support for caregivers, training for health-care professionals and research.
But South Florida caregivers and advocates, testifying at a town hall meeting Tuesday in Delray Beach, said local patients and their families are struggling now while the plan’s mechanics are still being worked out in Washington.
Laura Jones, of Lighthouse Point, had a 3-year-old daughter when her husband, Jay, was diagnosed with early-onset Alzheimer’s at age 50, and she eventually was forced to move her husband to a care facility.
In the past year, Jones said, she’s lost her job after recovering from a heart attack, dealt with her husband being hospitalized and temporarily placed in a nursing home, and watched her daughter flounder in school due to the emotional trauma.
Few assistance programs exist for her husband and daughter, she said, as the vast majority of Alzheimer’s patients are age 75 or older. The family has run out of money, she said, and her husband’s care is now paid through the taxpayer-financed Medicaid program, often targeted in state and federal budget cuts.
“It can’t go on like this,” Jones told the panel of policy experts and federal and state legislators. The Alzheimer’s Association has been organizing town hall sessions this summer to gather public comments about the sweeping National Alzheimer’s Plan, created by the act. The Delray Beach event was planned by the association’s Southeast Florida chapter, which covers seven counties, including Broward and Palm Beach.
More than 5 million Americans have the devastating neurological disorder, including a half-million Floridians. And there could be as many as 16 million patients nationwide by 2050, according to the association, with their care costing more than $1 trillion annually if better treatments are not found.
The Obama administration has set aside $50 million for the plan in fiscal year 2012, with much of it going toward research. The initial allocations, released in May, were $16 million for a prevention study on high- risk patients and $7.9 million to further test an insulin nasal spray that appeared to slow memory loss.
Among allocations from the $100 million earmarked in the plan for fiscal year 2013: $80 million for research; $4.2 million for public awareness; $10.5 million for caregiver support; and $4 million to educate and train health-care providers.
States or research organizations must apply to the federal government for the new money, said Linda Balogh, the Southeast Florida chapter’s advocacy and public policy coordinator. The organization hopes some of the 2013 caregiver dollars eventually will be available for Florida families.
Delray Beach neurologist Dr. Mark Brody said better screenings are needed to identify potential Alzheimer’s patients earlier — 10 to 15 years before they’re symptomatic, “if we really want to make a difference in treating them,” he said.
He suggested specialized “centers of excellence,” to handle everything from diagnosis to care needs, might be a better way to serve patients.
Brody is director of Brain Matters Research, a clinical trial facility that was the largest North American test site for the promising Alzheimer’s drug, bapineuzumab. Pfizer Inc. and Johnson & Johnson halted the advanced trials this month after the drug failed to improve brain function.