Even when she walked into her first meeting, Debra Johnson wasn't convinced that a support group could help her family.
Her mother, Lucinda Clayton, now 90, was diagnosed with Alzheimer's disease in 2008 – but in the African American community, Johnson said, people generally don't like to share concerns about their elders' dementia. So how could the smiling circle of older white women at the Alzheimer's Association group for caregivers possibly understand?
"I saw these little ladies, and I thought, 'They don't know what I'm going through,' " said Johnson, 55, who lives in Elk Grove and retired from the state to help care for her mother. "But those ladies were so embracing. Love them to death. We became a family.
"They were caregivers, just like I was, and they wanted to be engaged. This is something the black community needs to embrace."
Within two decades' time, Alzheimer's Association research shows, the degenerative brain disease will boom in California's minority populations, with the number of African Americans with Alzheimer's expected to double by 2030 and the number of Latinos and Asian Americans expected to triple.
In large part, that's the result of the state's changing demographic realities, as California's growing minority populations combine with the huge age wave of the baby boom generation.
And experts say that minority groups can face unique challenges in the diagnosis and treatment of dementia.
Values shared by many groups across ethnic lines – reverence for elders and respect for family – can stand in the way of seeking help. In some minority groups, the elderly are less likely to have easy access to health care. Language can prove a barrier to early, accurate diagnosis.
As in the white community, so can fear and stigma.
But the coming Alzheimer's surge creates urgency to overcome obstacles that have traditionally caused some minority communities to be reluctant to plan for the future that millions of their elders will face.
"There absolutely is a need to talk about Alzheimer's in the minority community," said Edie Yau, diversity director for the Alzheimer's Association of Northern California. "But there are also cultural barriers and just pure stigma.
"That's the greatest barrier to overcome. People used to call it senility, and it was accepted as a part of normal aging. So why would you seek a diagnosis for dementia if it's just part of getting older?"
Profound loss of self
To the contrary, researchers know that ordinary memory loss is far different from the profound loss of self that Alzheimer's can involve. People with Alzheimer's can undergo behavioral changes, including agitation and depression. They can lose their ability to walk, even to eat.
Alzheimer's is already the sixth leading cause of death in elderly Californians.
More than 5.4 million people in the United States have Alzheimer's today, and that number is expected to increase to 14 million with the aging of the baby boom generation.
Projected racial and ethnic disparities are pronounced across the nation: Although more than 80 percent of the Alzheimer's cases diagnosed in 2006 occurred in the white population, the American Medical Association says that number is expected to drop to 60 percent by 2050 – because of the proportional rise in the number of minority cases.
Across ethnic and racial lines, the greatest risk factor for Alzheimer's is, simply, old age. Deaths from heart disease and most cancers have consistently decreased, leading to longer lives – and a consequent rise in Alzheimer's and dementia cases.
Aging minority populations can face particular risks.
Heart health tends to support brain health in the later years, for example – yet statistics show that older adults in many minority communities have high rates of hypertension and diabetes, which in turn raise the likelihood of vascular problems and dementia.
And out-of-date cultural standards can prevent families from seeking help.
"In the Asian community, dementia was traditionally a shameful thing," said Dr. William Au, medical director of the Sutter Neuroscience Institute's Memory Clinic. "You hated to admit that grandma had dementia. It was all swept under the carpet as just old age. 'We'll take care of it ourselves. We don't need diagnosis or treatment.' That's the old culture."
It has taken time for family members in some communities to absorb the lesson that respecting elders means seeking a diagnosis, not avoiding one.
"It's a slow, incremental process," said Yau. "Changing the culture takes a long time. Even now, we're going into African American churches and community centers, trying to provide information."
After three years, the Bridge to Healthy Families project – a partnership of the Asian Community Center and the Alzheimer's Association – has brought education sessions on family caregiving to several thousand Sacramentans, said ACC chief executive officer Donna Yee.
"We've gone to every civic and church organization we know of in our community," she said. "And we're finding that's increased the number of family members willing to use our social day respite program and engage their siblings as a team."
But the slow pace of change means that in many communities, elders tend not to be diagnosed until the disease has progressed to mid- or late-stage.
Looking back, 81-year-old Toshiye Kawamura thinks the dementia of her husband, Goro, could have started a decade before his 2007 diagnosis. He is now 82, and his illness has advanced to the point that he can't really talk. First, his sentences disappeared; then, his words.
"All these things happened over a long period of time," she said.
For the past four months, he has been living in a care facility not far from the couple's Land Park home.
"I get up every morning and think he's still here," she said. "It's difficult, but of course, he's not here even if he is. When I see him, it's not the same."
National Institute on Aging research shows that Latinos tend to experience Alzheimer's symptoms six years earlier than other ethnic groups – at age 67 as opposed to 73 – but are less likely to receive an early diagnosis.
"Our health care system needs to be structured to provide quality care for a growing number of ethnicities," said Dr. Ladson Hinton, geriatric psychiatrist at UC Davis' Alzheimer's Disease Center. "Often, the symptoms of dementia get attached to other things."
Delayed diagnosis often means that the best chance for families to educate themselves and make plans to care for their aging loved ones is delayed, as well.
With early diagnosis, medications such as Aricept can help forestall decline in some patients, giving them time to understand their illness and have a say in planning their own future.
Lucinda Clayton worked for decades as a custodian in state buildings. She raised five children on her own when her husband was overseas in the military. She was strong-willed and smart, independent and churchgoing.
Now Debra Johnson and two of her sisters care for their mother – more than anything else, making sure that Clayton knows she's safe and surrounded with love.
For several years, Johnson tried running a support group for people in her church.
"I might get one or two people at meetings," she said. "People just didn't want to come out and share. It's that denial thing, but I want to reach out to my community.
"I tell people in my church it's important to get a diagnosis. It's important to utilize the services that can help you. As a caregiver, you cannot do this alone. It's too hard."