It’s the much-feared diagnosis no one wants to hear. But under new state and federal guidelines, more patients could be getting easier and earlier diagnoses of Alzheimer’s disease, which already affects more than 600,000 Californians.
“Alzheimer’s can be challenging to diagnose, especially in a very busy primary care setting,” said Dr. Charles DeCarli, neurologist and director of the Alzheimer’s Disease Center at UC Davis.
The new guidelines, DeCarli said, are a “game changer” in helping address the “ever-increasing need for dementia assessment.”
The efforts run on two fronts: In January, Medicare began reimbursing doctors and medical providers who assess patients for cognitive decline and help them and families with dementia-care planning. This month, the California Department of Public Health also issued new Alzheimer’s guidelines to help primary care physicians, nurse practitioners and physician assistants better diagnose and document the disease, explain it to patients and direct them to community-based programs and services.
Getting diagnosed can lead to earlier treatments, allow families to consider their financial and care-giving needs, and enable them to find support, whether it’s medications to ease symptoms, access to clinical trials or providing caregivers a few hours of respite from the 24-7 demands of caring for someone with the disease.
While no one wants to hear the diagnosis, the “satisfaction of understanding” Alzheimer’s can help patients and family deal with behavior like forgetfulness, as well as start planning for the future. “The consequences will be better health for patients, less hospitalizations … and a healthier, better quality of life for patients and caregivers,” said DeCarli, who heads one of 10 university-based California centers for Alzheimer’s research.
For caregivers, the new tools are hugely welcome.
Mynga Futrell, a former educator and instructional developer, has been an Alzheimer’s caregiver twice: First for her mother in Kentucky in the 1990s, and now in Sacramento for her husband, 85, who was diagnosed seven years ago. “The hardest part is seeing a loved one become a shell of who they were,” she said. “Their life is like a melting ice cube.”
But compared with the limited resources available decades ago with her mother’s disease, Futrell is buoyed by what’s available today to help Alzheimer’s patients and caregivers. Through local support groups, respite daycare and classes on how to handle the day-to-day challenges, “You get a floor on which you can stand and know the things you need to do to get settled,” said Futrell, 72.
That support helped her cope with her husband’s often-frustrating habits, like buttoning his shirt up to his neck and not wanting any brown specks, such as pepper or herbs, in his foods. It gave her respite time, when she needed a few hours to work or even grocery shop on her own. As she assumed all of the family’s day-to-day decision-making, she said she got her “financial ducks in a row” to ensure his long-term care. Now a participant in two Alzheimer’s support groups, Futrell recommends that caregivers “keep trying” until they find the group that fits their needs.
The efforts to better diagnose Alzheimer’s come as the disease continues creeping into the lives of older Americans.
More than 630,000 Californians are living with Alzheimer’s or other types of dementia, including more than 55,000 in the greater Sacramento area, according to Michelle Johnston, Greater Sacramento regional director of the national Alzheimer’s Association. By 2025, if nothing changes in managing the disease, she said, those numbers will jump by an estimated 40 percent. As will the costs: In 2017, the Medicaid cost of caring for Alzheimer’s patients in California will be $3.4 billion, according to the association.
Alzheimer’s, a progressive disease that destroys memory and leads to eventual loss of functioning, accounts for 60 to 80 percent of U.S. dementia cases. Roughly two-thirds of those diagnosed with Alzheimer’s are women.
“Every family needs a plan,” said Barbara Marquez, a Fair Oaks retiree whose 86-year-old mother was diagnosed with Alzheimer’s nine years ago and now lives in a local care facility. “Alzheimer’s is a medical condition that comes with huge family consequences: economic, emotional, financial, as well as the health of the family caregiver. It has many stages and you need to understand how it progresses.”
The new state guidelines, the first update since 2008, are based on changes in science, clinical practice and state and federal laws.
“Overlooking or avoiding diagnosis impedes care and denies access to needed services,” the state Department of Public Health states. “In an era of electronic health records, documenting the diagnosis is critically important in order to deliver person-centered care.”
During annual wellness checks with patients, California primary care doctors are advised to: monitor and reassess changes in cognitive abilities; identify the main caregiver; assess the adequacy of family support; and discuss the disease’s stages and progression.
UC Davis’ DeCarli said it’s also essential that doctors address “communities of color,” since the disease strikes minorities in greater numbers than Caucasians. Older African Americans are twice as likely and Latinos are 1 1/2 times more likely to develop Alzheimer’s compared with older whites, according to the state Department of Public Health.
But it’s easily overlooked or ignored in families, which makes communicating with doctors essential.
“Unless we make a decision to make an appointment to talk with a doctor about what we’re seeing at home with our parents (or loved ones) … the process doesn’t even get started,” said Pablo Espinoza, a consultant in state Assembly Speaker Anthony Rendon’s office.
As the son of Hispanic parents diagnosed with dementia and Alzheimer’s, Espinoza said families like his too often tend to assume that signs of forgetfulness and behavior changes are simply old age, when it’s really something more serious. By talking with family members and sharing information with doctors, “you can identify symptoms that can lead to early diagnosis,” he said. “There’s no cure, but early treatment can make a huge difference.”