By Andy Evangelista
Bill and Susan Long sometimes bicker playfully when he can't recall simple things, like where he left his keys just a minute ago. But their real fight is for time.
Bill Long, 70, was diagnosed two years ago with early stages of Alzheimer's disease, and some days he can't remember the names of his grandchildren. Still able to work two days a week at Home Depot, Bill keeps a tight grip on the independence he has left, knowing full well that the disease can eventually rob him of all his mental and physical abilities.
Facts on Alzheimer's
Key findings from UCSF's Institute for Health and Aging report for the Alzheimer's Association:
• The number of people in California with Alzheimer's will nearly double from 588,000 today to nearly 1.1 million by 2030.
• One-tenth of the nation's Alzheimer's patients reside in this state.
• The number of California's Latinos and Asians living with the disease will triple by 2030, and the number of African Americans will double.
• The annual cost for caring for Californians with the disease could soar to nearly $100 billion in the next 20 years.
• Some 1.1 million Californians today take care of people with Alzheimer's. Three-fourths of these caregivers are family members.
• Alzheimer's is now the sixth leading cause of death in the state.
He admits that his wife may be the tougher of the two. It was her "pit bull mentality," he said, that cleared health care hurdles to get her husband properly diagnosed after his forgetfulness and changes in behavior were more serious than "just getting old." She also got him referred last year to the UC Davis Alzheimer's Disease Research Center and into a clinical trial of a drug which they hope will slow the disease and extend Bill's good and healthy years.
Although tenacious, Susan Long is the worrier. She frets about someday not being able to provide the 24/7 attention that her husband may need, that he will end up in a nursing home and they will lose their entire savings to pay for his care, or that someday her husband of 48 years will not even recognize her.
"But I'm hopeful that the drug, or another that will be discovered, will work," she said. "I want to be with the Bill I know and love for a long, long time more, and in our home."
The clinicians, researchers and advocates battling Alzheimer's disease know that the clock is ticking for the Longs and hundreds of thousands of others like them. A UC report earlier this year sounded the alarm with projections of a dramatic rise in the number of Alzheimer's cases in California. A state task force was formed recently to develop a plan on how California can best respond to an impending Alzheimer's epidemic.
"As the baby boomer generation ages and as people live longer, Alzheimer's disease has become an urgent issue," said Patrick Fox, co-director of the UCSF Institute for Health and Aging and an author of the report.
He noted that among California's baby boomers age 55 and older, one in eight will develop Alzheimer's.
"The data indicate the economic and human costs of Alzheimer's disease will be insurmountable for our state if we don't act now," said state Sen. Elaine Alquist when the state task force was announced in late September.
The UCSF report, partly funded by the California Department of Public Health, offered several recommendations, including building a comprehensive health and long-term care service network for Alzheimer's patients, improving access to care for diverse racial and ethnic groups, developing policies and services to support family caregivers, increasing the number of workers trained in geriatrics, and more funding for research.
California ramping up a plan
The report also urged the state to speed up a plan for dealing with the burgeoning number of Alzheimer's cases.
"The state has not conducted a thorough review of its policies and practices related to Alzheimer's since 1987," said Fox. "Certainly, a lot has changed, and not just the numbers. We know a lot more about the disease than we did 20 years ago."
But Fox acknowledges a much-too-familiar conundrum — so much need, not enough money. The state, with its budget crisis this year, made severe funding cuts to Alzheimer's research centers, caregiver resources and adult day health care. It even eliminated some Alzheimer's day care centers.
"The state forecast shows the perfect storm," said Joshua Chodosh, a UCLA geriatrician who researches dementia and health services utilization. "We have the anticipated increase in the numbers of cases of Alzheimer's and other types of dementia and at the same time a drastic state budget situation."
Chodosh was named co-chair of the state's Alzheimer's disease plan task force, which will present its findings to the state in early 2011.
"We have a medical system and societal infrastructure that's not at all prepared to deal with this problem," said Chodosh. "At the same time, we have a chance to be creative in finding solutions and using the limited amount of dollars for some critical needs. California needs to be at the forefront in tackling Alzheimer's disease."
Chodosh believes that many segments of the community — not just those in health care — have an interest in tackling the Alzheimer's issues, especially businesses. The UCSF study found that California employers lose $1.4 billion in productivity because many employees miss work, reduce their hours or change jobs when a family member is stricken with Alzheimer's.
"Accelerating state research funding will hasten the day when people will be able to delay the debilitating symptoms of Alzheimer's," noted the UCSF report. "A delay of just five years could cut prevalence rates in half."
Throughout the UC system, hundreds of researchers are studying Alzheimer's disease. Scientists seek what triggers the excess protein production that forms plaques and tangles that jam brain signaling and eat away at the brain. Imaging experts develop tools to detect the disease at its earliest stages, clinical researchers test drugs that may stave off the disease, and social scientists and policy experts study the impact of the disease on communities.
"UC people and researchers throughout the state have been invaluable leaders and partners in raising awareness of the disease," said Debra Cherry, associate executive director of the Alzheimer's Association in Southern California.
Cherry cites the leading work at the Alzheimer's Disease Research Centers of California, established by the state in 1984 to provide comprehensive care to sufferers of Alzheimer's and related disorders and to aid in ultimately discovering the cause and cure of the disease. Of the 10 centers in the state, UC directs seven.
The UC Davis Alzheimer's Disease Center serves not only as top referral center for the Alzheimer's patients, it trains health professionals and advocates for nation and statewide changes in health policy and practice that will improve diagnosis and management of the disease. The center was founded with state funds some 25 years ago, but blossomed into a national center, too, attracting key federal funds to conduct more than 30 research projects and clinical trials. For many of its studies, it collaborates with its sister UC centers and other research institutions.
Increases projected for blacks, Latinos
One of the center's priorities is reaching out to various ethnic groups, said director Charles DeCarli. One major federally funded study has recruited some 430 white, black and Latino patients with some cognitive impairment to be studied until they die.
Researchers may determine unique factors in development of Alzheimer's in these ethnic and racial groups, particularly African Americans, faced with a projected doubling in the number of cases in 20 years, and Latinos, whose rates will triple. These long-term studies may also be able to answer questions about risk factors such as: "Is there a link between levels of education and Alzheimer's?" "Are diabetes and vascular disease, prevalent in African Americans and Latinos, linked to Alzheimer's?" "Do language and cultural differences create barriers to care and affect how and if a patient is tested and diagnosed?
To involve Latinos, however, researchers have to travel widely. "We've learned over the years that we must go to them, because they will not come naturally to a research center," said Esther Lara, a clinical social worker and research administrator at the UC Davis center.
She speaks at churches and senior centers, educating members about Alzheimer's and dementia. They in turn learn about early warning signs and services for patients and caregivers.
"For many Latinos and in other cultures, caring for an aging parent or grandparent is something you automatically do when the time comes," said Lara. "Often when they see senility or what may even be Alzheimer's, they think it's part of the process and they never seek outside care for the elder or themselves."
Early recognition of the disease is crucial, says Lara. Treatment and medications are available for those with early symptoms. Also, family caregivers — mostly women — burn themselves out without seeking services that may be readily available.
Lara, who has been conducting outreach and studies in predominantly minority communities for some 14 years, sees firsthand the soaring number of Alzheimer's cases. She's also saddened that many aren't getting the proper care because primary care doctors and clinics are not prepared to handle them.
In the center, she is also seeing an increasing number of people who are only in their early 50s with early stages of dementia or Alzheimer's. "They are still working, paying a mortgage and supporting their families," she said.
Still, she's heartened by those who volunteer for the research. They travel far to the center for periodical cognitive and physical tests. "They're very proud to be part of important research."
Bill Long, the UC Davis Alzheimer's Center patient and clinical trial participant, gives his time and even his blood for the sake of science. "I'm willing to be a human guinea pig if it helps find a cure for this disease."Andy Evangelista is research communications coordinator in the UC Office of the President's Integrated Communications group.