Barriers to Alzheimer’s Care for Rural Californians

With Alzheimer’s now the second-leading cause of death for people in California, barriers to treatment are more harmful than ever.

Although the number of Californians living with Alzheimer’s will nearly double to 1.1 million within twenty years, those in rural and remote areas face major challenges to accessing care.

Compared to urban communities, these rural Californians struggle to access preventative services, including screenings, diagnostic care, clinical visits, and appointments with specialists. Long wait times and a lack of public transportation are also common issues.

Alzheimer’s access in remote California

Dr. Rita Nguyen, Assistant Health Officer for the State of California and Director of Population Health, California Department of Public Health, discusses the barriers to health faced by disadvantaged ethnic and geographic communities and the role of public health in removing those barriers.

With Alzheimer’s now the second-leading cause of death for people in California—home to more adults aged 65 and over than any other state—barriers to treatment are more harmful than ever, said Dr. Rita Nguyen, assistant health officer for the state of California and population health director for the California Department of Public Health (CDPH).

There were 660,000 Californians living with Alzheimer’s in 2019; that number is expected to more than double to nearly 1.5 million in 2040.

While rural California is home to just 6%—2.3 million residents—of the state’s overall population, residents in these areas are also older than their urban counterparts; more geographically isolated from clinics, caregivers and specialists; and more prone to Alzheimer’s risk factors like heart disease, hypertension and diabetes.

“The Surgeon General has highlighted the immense impact that loneliness has on health outcomes,” noted Nguyen, adding that stigma around Alzheimer’s adds to the isolation many experience, despite the fact that most Californians are “connected by one or two degrees” to someone with the disease.

In response, CDPH has launched Take on Alzheimer’s, the first-ever statewide campaign to reduce stigma around the disease and teach Californians how to detect it and what to do after a diagnosis.

“Our own research on access barriers to Medicaid, the largest payer of long-term U.S. care access, has involved over 40 focus groups and over 100 individual interviews,” said Hagar Dickman, senior attorney at Justice in Aging. “We found, statewide, that low-income individuals with mid-to-late Alzheimer’s and dementia, particularly in rural areas, generally have no options to access community or personal care programs.”

For instance, California’s largest program for low-income adult home care—In-Home Support Services, serving 700,000 individuals—“is essential for keeping adults in the community and out of nursing homes, but it’s self-directed. Users apply for, find, hire, supervise and fire their caregivers, and 70% of users have a family caregiver,” she explained. “But it doesn’t work for those who can’t direct their own care,” she added, suggesting an agency option, and integration of caregiving with social services like housing.

Other Medicaid programs like Assisted Living Waivers, available in only 15 of California’s 58 counties, can have 3,000-person waitlists. (Medi-Cal is California’s version of the federal Medicaid program.) Community-Based Adult Services, an adult day health program available in about 22 counties, closed many centers during the pandemic in rural counties which already have less alternatives like nursing homes, caregivers and specialty clinics.

“We found that those with neglected needs go into institutional care or die at home as providers … social workers and community organizations struggle to find support for those who come to them for help,” Dickman said. “Once the Alzheimer’s is mid-to-late, often in despair, they call Adult Protective Services, even though it can’t really assist.”

“What became clear from talking to rural participants is that many policy solutions that may work in urban areas really are not appropriate for rural areas, because of low density, lack of providers and lack of infrastructure,” she continued. “Any solution, to help individuals with Alzheimer’s who don’t have family caregivers, needs to address these issues.”

Alzheimer’s outreach in rural SoCal

Hagar Dickman, Senior Attorney, Justice in Aging, shares data from a research project on the accessibility of Alzheimer’s care in rural California.

“Our population is growing. In the Inland Empire alone, there’s a projected 685% increase in people 65 and over by 2060,” said Carmen Estrada, executive director of the Inland Caregiver Resource Center, a network of 11 free caregiver service centers in the San Bernardino, Riverside, Inyo and Monroe counties of Southern California. “Our infrastructure is definitely not ready for that, but we’re hopeful we can implement what we found about reaching people.”

“First of all, we use word of mouth,” she continued. “It’s not just about dropping off brochures at a community center or church … individuals in rural communities are close-knit, and to foster trust we encourage current clients to tell others about how we can help them care for loved ones with Alzheimer’s” through services like counseling, caregiver referrals, caregiving training and respite care.

“Most importantly, we learn what the community needs,” Estrada continued, through listening sessions and focus groups, as well as what the best channels are for delivering information, whether it’s “flyers, TV, radio?” Language accessibility is also critical.

One caregiver’s story

“I’ve been caring for my brother three years since he got diagnosed with frontal temporal dementia, and it’s been challenging,” said Maria Cortez, a Glenn County-based 66-year-old caregiver for Jerry, her 62 year old brother with Alzheimer’s.

She lived in Texas when he first showed abnormal symptoms, including losing his job, drinking frequently, being verbally abusive to siblings who’d visit him and blacking out while driving, totaling his car on one occasion.

“He was then living alone in our parents’ home and had four friends who saw what was going on, moved in, and took over the home and his bank account,” Cortez said. “They had him living worse than a dog, so I took him to Texas. He was upset, so after a few months we went back to remove his friends. It took three to four months to evict one … If we hadn’t intervened, my brother would be dead by now.”

“Since he had no money left, I spent a month and a half struggling with paperwork to get him on Medi-Cal,” she explained. Unable to get a neurologist in Chico, 10 minutes away, “he got one in Sacramento, early appointments two hours each way.”

“The symptoms progressed so fast, about every two months,” said Cortez. “It was memory loss, then anxiety, hallucinations, depression, losing empathy, personal hygiene and the ability to feed or dress himself. In the last month or two he can no longer bathe himself, which has been difficult for me, being his sister.”

She added that her brother has been able to join the Peg Taylor Center for Adult Day Health Care in nearby Chico, where he goes two to three times a week for up to four hours per visit, “They’re wonderful,” she said. “He’s now like a three year old in an adult body, and this is the only program I know of here that gives me time to catch up, go out, do what I want for a bit.”

Cortez said the most fulfilling part of caring for her brother despite these challenges “is that I helped him be alive, for however many years he’s got left. But we didn’t know what was happening for a few years, and that could have helped him … If you’re facing similar issues, learn the signs.”