June Stevens knew something was wrong four years ago when her husband, a retired math teacher, could not balance his checkbook. And she needed help to know how to help him.
Stevens turned to the UCSF Alzheimer's & Memory Center in Fresno, where doctors diagnosed Haig Shekerjian with the disease that leads to memory loss and dementia -- and eventually death.
The center staff taught her "how to deal with him and how to help him," said Stevens, 76, of Fresno. "I don't know if I would have made it if I hadn't had that support and that kind of help."
But advocates for Alzheimer's patients and families say state budget cuts have reduced the Fresno center's ability to provide diagnosis, research and education about the disease and support services. Patients now wait three months for an appointment for a diagnosis; research has stopped; outreach to rural communities has been curtailed and training of community physicians limited. And the budget limitations come at a time when baby boomers are aging and demand for services will increase, the advocates say.
The Fresno center -- connected to the University of California at San Francisco -- is one of 10 in the state that's had its budget cut by more than 50% in the past five years.
At the Fresno center, an annual budget of $585,000 was cut to $281,800 beginning in 2009 and has not been raised since, said Marcy L. Johnson, psychologist/administrator at the center.
Statewide, funds for all 10 centers were cut from $6.3 million in fiscal year 2008-09 to $3.1 million in 2009-10, and this year's budget is projected to be about the same as in 2009-10. No additional funding has been proposed in the budget for 2014-15, according to the state Department of Finance.
California Department of Public Health spokesman Matt Conens said in an email that the department, which has contracts with the 10 centers, is managing the program "within its legislatively appropriated means" by using the state general fund to support the Alzheimer's centers.
The department also administers the Alzheimer's Disease and Related Disorders Research Fund, which is supported by contributions people make through state income tax returns, Conens said. Since 1988, contributions have totaled more than $10.6 million and funded more than 112 research projects, he said.
Johnson said the cuts have strained the UCSF Fresno center's overall operations. "Our budget definitely changed as to what we could produce," she said.
The Alzheimer's Association of Northern California and Northern Nevada said the state needs to restore funding to the centers and has planned a March 4 advocacy day in Sacramento.
Cases could double
Christine Toy of Visalia, an association volunteer, said she will be among advocates asking lawmakers for money to fight Alzheimer's disease.
Alzheimer's sapped memories, joy and vitality from Toy's mother before she died.
Toy, 45, wishes she had gone to the Fresno center for help caring for her mother, Clara Toy. "It would have made it so much easier on us as a family," she said. But she learned of the center only after her mother's death three years ago.
She's advocating for the center so other families can get help. The need for help is only going to increase, she said. "With the baby boomers growing older, we're starting to see more and more Alzheimer's disease and I think the system is going to be overrun if we don't get a handle on this soon."
By 2030, the number of people 65 and older with Alzheimer's could more than double in the central San Joaquin Valley, according to the Alzheimer's Association. The disease is the sixth-leading cause of death in California.
The state's Alzheimer's centers set the standard for diagnosis of the disease, said Ruth Gay, director of public policy and advocacy for the Alzheimer's Association. The centers also connect families with resources and support, she said.
"We'd like to restore the funding that allows them to serve families in their communities in ways that no one else is able," Gay said. And the help for families "has got to be expanded in the next five to 10 years just to meet the growing need."
With California's budget bouncing back, Gay said, the association hopes to get one-time money for the 10 centers to share and collaborate on ways to serve communities in the future. The association has yet to target a funding amount it will ask legislators to restore.
It's been about five years since researchers at the 10 centers have gathered to meet, said Dr. Alex Sherriffs, a principal investigator and co-medical director at the UCSF Fresno center. And there are no ongoing research projects.
The centers continue to offer day-to-day clinical services, Sherriffs said, but "research is critical to doing a better job."
The centers also educate doctors in their communities about Alzheimer's, but the cutbacks have put limits on physician training. "We really are a hub for educating local physicians," Johnson said. "Unfortunately, those pieces have been downsized."
Sherriffs, a family doctor with specialized training in geriatrics, continues to train medical residents through the UCSF-Fresno medical education program, but he's had to scale back sessions for doctors and staff at long-term care institutions.
Community education and outreach to underserved rural populations in the Valley also have been affected by the budget reduction. If money were restored, Johnson said she would provide more education and diagnostic services in communities outside Fresno.
But first on the list would be to hire more clinical staff to reduce wait times and increase the number of patients seen. Last year, the center saw about 128 patients, Johnson said. Sherriffs and Dr. Loren Alving, a neurologist and a center director, work part time at the center.
Reducing wait times is a priority, Sherriffs said. "People tend to be in crisis when they call for an appointment." Patients may have become a threat to themselves or family members, or families simply no longer are able to take care of loved ones at home and are considering institutional care, he said.
The center provides education, support and referrals that can help families navigate through problems, Sherriffs said. "Functionally for the patient and the families, things can be much better."
Legislators need to know about the centers and their value to thousands of families in the Valley and state, Toy said, and that's why she plans to join about 250 people with the Alzheimer's Association to lobby for funds in Sacramento next month.
Toy, who sells table grapes to customers for a Delano grower, said the group faces a challenge getting money.
"I understand there's budgetary issues and people are in need and people are out of work and everybody is asking for help," she said. "But I see this as an epidemic that is heading at us and that maybe we can head off."