California is poised to see a significant increase in its Alzheimer’s population, with numbers expected to nearly double to 1.1 million in the next two decades. This surge presents particular challenges for those in rural and remote regions, where access to care is limited.

In a media briefing on June 13, hosted by Ethnic Media Services, a panel of experts discussed how residents in rural areas face significant barriers to accessing essential preventive services, such as screenings, diagnostic care, and specialist consultations. These issues are compounded by long wait times and a scarcity of public transportation.

Speakers

  • Dr. Rita Nguyen, Assistant Health Officer for the State of California and Director of Population Health, California Department of Public Health
  • Carmen Estrada, Executive Director, Inland Caregiver Resource Center (San Bernardino)
  • Maria Cortez, caregiver for family member with Alzheimer’s, resident of Glenn County and client of The Peg Taylor Center for Adult Day Health Care in Butte County 
  • Hagar Dickman, Senior Attorney, Justice in Aging

Rural Barriers to Alzheimer’s Care in California

Alzheimer’s is now the second-leading cause of death in California, a state with the largest population of adults aged 65 and over. According to Dr. Rita Nguyen the obstacles to treatment in rural areas have become more critical than ever.

In 2019, there were 660,000 Californians living with Alzheimer’s. A number is projected to more than double, reaching nearly 1.5 million by 2040.

Only 6% of California’s population (about 2.3 million people) live in rural areas, these residents are typically older, more geographically isolated, and have higher rates of Alzheimer’s risk factors such as heart disease, hypertension, and diabetes compared to those in urban areas.

Dr. Nguyen also noted that loneliness significantly impacts health outcomes, and the stigma surrounding Alzheimer’s can intensify feelings of isolation. Despite the widespread connection to the disease—most Californians are only one or two degrees of separation from someone with Alzheimer’s—many affected individuals face social isolation.

To combat this, the CDPH has launched “Take on Alzheimer’s,” California’s first statewide initiative aimed at reducing stigma, educating the public on early detection, and providing guidance on what to do following a diagnosis.

Addressing the Care Access Gap

Hagar Dickman highlighted findings from extensive research on barriers to Medicaid access, the largest payer of long-term care in the U.S. This research, involving over 40 focus groups and 100 individual interviews, revealed that low-income individuals with mid-to-late-stage Alzheimer’s and dementia, especially in rural areas, have limited options for accessing community or personal care programs.

California’s largest low-income home care program, In-Home Support Services (IHSS), serves 700,000 individuals and is crucial for keeping adults out of nursing homes. However, it requires users to manage their own care by applying for, hiring, supervising, and potentially firing their caregivers. Seventy percent of users rely on family caregivers, which is not feasible for those who cannot manage their own care. Dickman suggested the introduction of an agency option and the integration of caregiving with social services like housing.

Other Medicaid programs, such as Assisted Living Waivers, are only available in 15 of California’s 58 counties and often have long waitlists, with some reaching up to 3,000 people. Community-Based Adult Services, an adult day health program available in about 22 counties, saw many centers close during the pandemic, particularly in rural counties where alternatives like nursing homes, caregivers, and specialty clinics are already limited.

Dickman noted that unmet needs often lead individuals to enter institutional care or remain unsupported at home. Social workers and community organizations frequently struggle to find necessary resources for those seeking help. As Alzheimer’s progresses to more severe stages, individuals or their caregivers often resort to calling Adult Protective Services, which may not provide the needed support.

Dickman emphasized that policy solutions effective in urban settings are often unsuitable for rural areas due to lower population density, a lack of providers, and insufficient infrastructure. She stressed that any effective solution for helping individuals with Alzheimer’s in rural regions, especially those without family caregivers, must address these unique challenges.

Alzheimer’s Outreach in Rural Southern California

“Our population is growing. In the Inland Empire alone, there’s a projected 685% increase in people 65 and over by 2060,” stated Carmen Estrada. “Our infrastructure is definitely not ready for that, but we’re hopeful we can implement what we found about reaching people.”

Estrada emphasized the importance of community trust in rural areas. “We use word of mouth,” she explained. “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.”

Understanding and addressing the specific needs of the community is crucial, according to Estrada. This involves conducting listening sessions and focus groups to identify the most effective ways to disseminate information, whether through flyers, TV, or radio. Language accessibility is also a key consideration.

A 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,” shared Maria Cortez, a 66-year-old caregiver from Glenn County, who looks after her 62-year-old brother Jerry, who has Alzheimer’s.

Initially living in Texas when Jerry first exhibited unusual symptoms—such as job loss, frequent drinking, verbal aggression towards siblings, and blackouts while driving, resulting in a car accident—Cortez faced numerous challenges.

“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,” she recounted. “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.”

With Jerry left penniless, Cortez spent a month and a half navigating the bureaucratic maze to secure Medi-Cal for him. Unable to get a neurologist nearby in Chico, just 10 minutes away, she had to arrange early morning appointments in Sacramento, a two-hour drive each way.

“The symptoms progressed so fast, about every two months,” Cortez explained. “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.”

Fortunately, Jerry has been able to attend the Peg Taylor Center for Adult Day Health Care in Chico, where he spends two to three days a week, up to four hours each visit. “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.”

Despite the challenges, Cortez finds fulfillment in caring for her brother. “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.”