Alzheimer's patient Felipe Garcia, at right in above photo, is shown with his sons Marco, left, and Oscar, center.Part 1 of 2. Read Part 2
here. MOUNTAIN VIEW, Calif.—Felipe Garcia, 79, looks up with a ready smile as his two-year-old granddaughter, Marina, orbits his shuffling legs—her mother Elena keeping a sharp eye on the toddler to avoid any mishaps around the family’s modest home in Silicon Valley. Elena says Marina doesn’t quite understand yet that her
abuelo (grandpa) has Alzheimer’s disease and can’t concentrate on her for long periods of time.
Felipe, who migrated from Mexico in his youth, is among 5.5 million Americans diagnosed with Alzheimer’s. Of those cases, 588,000 are in California, a number that is expected to double by 2030. The number of Latinos and Asians living with the disease will triple during the same time period, according to a new state
plan jointly released by the Alzheimer’s Association, California’s Health and Human Services Agency and the Alzheimer’s Disease and Related Disorders Advisory Committee.
Yet the plan’s chief recommendation—to meet the projected shortage of caregiving resources by expanding home and community services, thus keeping people out of costly nursing homes—may be in jeopardy. Last Thursday, Gov. Jerry Brown signed into law the latest round of budget cuts to services the Garcias rely on to manage care for both Felipe and his wife Manuela, 65, who has diabetes, heart disease and other ailments.
Three Garcia Households Under One RoofCalifornia’s new Alzheimer’s plan shows that families like the Garcias provide three-quarters of the intensive care for those afflicted with the illness. Only 6 percent of Alzheimer’s patients are in nursing homes, and many families go to great lengths to keep their loved ones out of institutions.
Three households of Garcias—those of Felipe and Manuela, their son Marco and his wife Elena, and their son Oscar—took the unusual step of pooling their resources to purchase the home the elder Garcias had rented for decades. They rebuilt it with six bedrooms and a basement, enough space to house the entire family.
The two sons and daughter-in-law divide daily labors of love, such as preparing meals, managing multiple medications and getting Felipe and Manuela to doctor’s appointments.
“It gets a little hectic,” says Marco, a Mountain View police officer, who works night shifts. “You’re trying to eat dinner, the kids [are] running around—everyone’s on a different schedule.”
Then, he said, there are those Alzheimer’s moments. Sometimes Felipe “wakes up stubborn,” Marco says. For instance, he may insist on going up to the attic, a potentially dangerous climb for the frail older man. “So I spend 10 minutes going back and forth about why he shouldn’t go to the attic.”
A key conclusion of the Alzheimer’s plan for California—one of 26 states to develop a plan so far—is that dedicated families such as the Garcias still need help to manage the labor-intensive challenges of caregiving.
The plan cites one indication of how arduous dementia care is: The cost of nursing home care for Alzheimer’s patients on MediCal (California’s Medicaid program) is 2.5 times greater than that of seniors without the disease.
California Cuts Care, While Other States Expand ItFaced with a fiscal crisis, California has been cutting exactly the kinds of programs the state plan prescribes. Some experts say the cuts actually will drive up costs and unnecessarily force many elders into expensive nursing homes or hospitals.
The new Alzheimer’s plan asserts, “Unless the state takes steps to provide better support in the home and community for those who are affected by this condition, volume [of Alzheimer’s cases] alone will cripple public resources.”
The report emphasizes that programs such as California’s In-Home Supportive Services (IHSS) and Adult Day Health Care (ADHC) help keep elders like Felipe Garcia in the family fold.
However, California lawmakers have cut funding for the state’s 310 ADHCs by more than half, to $85 million. That represents a compromise; in his original budget, Brown called for eliminating the program entirely. The new law also would bring federal matching funds, but only by restructuring the program with federal approval, a process that could take months.
“Nothing good can come from 50-plus percent reductions,” says Marty Lynch, executive director of the nonprofit LifeLong Medical Care in Berkeley. “A lot fewer patients and probably fewer services.”
Lydia Missaelides, who heads the California Association of Adult Day Services, adds that even if the transition to the new funding design is seamless—avoiding family disruption and possible center closures for lack of funds—the strict new eligibility rules and huge cuts will leave many families scrambling.
“These are people who the state already qualified as at-risk for a nursing home,” she explains. But because ADHC patients now must be at high medical risk of being institutionalized, a borderline patient—for example, someone at an earlier stage of the illness—would lose the preventive nursing care provided by the center and end up seeking emergency services.
Among numerous other budget cuts are $1.7 billion slashed from MediCal and $486 million from IHSS. Fortunately, Missaelides says, the reductions in home assistance—which already suffered deep cuts last year—will be partly offset by funds from the federal Community First Choice program, part of the health care reform law. But more cuts are on the way, including $2.5 million expected to be cut from the case management program for seniors.
This year’s program cuts would curtail assistance to 400,000 vulnerable Californians, who will be forced to turn to more costly emergency care.
“By limiting the availability of these services to only people who are already at an acute level of need, we erase the tremendous savings potential of prevention,” says Wendy Peterson, director of the Senior Services Coalition of Alameda County.
In fact, 32 states dealing with budget crises have actually chosen to expand home- and community-based care programs to save money in the long term, according to a 2010 survey by the
Kaiser Family Foundation.
But for H.D. Palmer of the California Department of Finance, “These choices are difficult but necessary.” He insists that the state’s $26.6 billion deficit leaves lawmakers little alternative but to reduce funds for many popular programs.
Meanwhile, according to the new Alzheimer’s plan, by 2030, nearly 1.2 million elders in the Golden State will suffer from the incurable disease—with state costs more than doubling from today’s expenditures to $31.3 billion a year.
Alzheimer’s also costs California businesses up to $1.4 billion a year in lost productivity, according to the report, as caregivers miss work, cut their hours or switch jobs.
The report, “California’s State Plan For Alzheimer’s Disease: An Action Plan for 2011-2021,” was ordered by the Legislature to address the looming public health crisis as people live longer with chronic illnesses.
It was the culmination of a two-year effort involving state agencies, nonprofit organizations, and more than 2,500 people ranging from experts to family caregivers and Alzheimer’s patients themselves. Also supporting the project were the California Endowment and the SCAN, Gilbert and Archstone foundations.
Research included an online survey of 1,320 caregivers in English, Spanish, Korean, Vietnamese and Chinese.
Investment in the Middle ClassOscar Garcia, Felipe and Manuela’s son, is the president and CEO of the Mountain View Chamber of Commerce and a member of the Alzheimer’s Association board in Northern California. He says that working professionals, as well as the poor, need the state’s family caregiving assistance.
“When you look at the medical cost for a facility that specializes in Alzheimer’s, it is prohibitively expensive,” he says.
Like millions of Americans, Oscar found himself “very, very surprised” to learn that Medicare does not cover long-term care services and that affordable private long-term care insurance was not available for his parents.
“IHSS and adult day care essentially fill in the gap for middle-income people,” Oscar says. “What those programs do is bridge the gap and allow middle America to continue to work and be productive and contribute their taxes, which go back into the economy to be able to fund and provide more. Middle America I view as the engine that pulls this economy.”
Sitting in the Garcias’ living room surrounded by framed family photographs, Oscar chuckles when asked about the collection of carved white elephants on a shelf.
“Dad loves them,” Oscar says. Replying to the next question, he laughs, “No, he’s a Democrat. I’m a Republican, but he’s a Democrat.”
