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Accessing Care: Challenges for Alzheimer’s Patients in Rural Communities

-Editorial

As more people live longer lives, more Californians will face living with Alzheimer’s disease than ever before. The number of people living with Alzheimer’s disease and related dementias (ADRDs) is projected to double over the next 20 years.

Californians living in rural and remote regions face additional challenges in accessing preventative, screening, diagnostic, and caregiving services, healthcare providers, and resources compared to Californians living in urban communities. There are long wait times to see ADRD specialists who can provide a diagnosis. Lack of public transportation means longer commute times to access these critical healthcare services and resources. This can impact not only the person experiencing signs of Alzheimer’s but their families as well.

In a briefing by Ethnic Media Services, Alzheimer’s healthcare providers, researchers, and advocates discussed how they’re working to address these disparities in access and meet the needs of California’s underserved, rural communities as its population ages and grows.

Dr. Rita Nguyen, Assistant Health Officer for the State of California and Director of Population Health at the California Department of Public Health, has announced a groundbreaking campaign aimed at raising awareness and prevention of Alzheimer’s disease. This initiative marks California’s first-ever statewide effort to tackle the growing public health challenge posed by Alzheimer’s.

Alzheimer’s disease, now the second leading cause of death in California, recently surpassed stroke based on the latest data. Alarmingly, the prevalence of Alzheimer’s is projected to double by 2040. Given these statistics, Dr. Nguyen emphasizes the urgent need for public awareness and proactive health measures.

“Alzheimer’s is not just a personal health issue; it’s a public health crisis that demands our collective attention and action,” said Dr. Nguyen during the campaign’s launch. “Our aim with this campaign is to educate Californians about Alzheimer’s, its risk factors, and preventive strategies, as well as to provide support and resources for those diagnosed with the disease.”

The “Take on Alzheimer’s” campaign, developed by the California Department of Public Health, seeks to shift public perception, reduce stigma, and empower communities through education and support. The initiative underscores the importance of recognizing early signs of Alzheimer’s and encourages proactive engagement with healthcare services.

One of the critical aspects of the campaign is addressing disparities in Alzheimer’s prevalence and care. Women, communities of color, and rural populations are disproportionately affected. Rural residents, who comprise nearly 6% of California’s population, often face significant barriers to healthcare access, exacerbating the impact of Alzheimer’s in these areas.

“Rural communities in California, home to 2.3 million residents, tend to be older and have fewer resources,” Dr. Nguyen highlighted. “Our campaign aims to bridge these gaps by providing accessible information and support to all Californians, regardless of where they live.”

June, recognized as Alzheimer’s and Brain Awareness Month, serves as a timely backdrop for this campaign. It focuses on empowering individuals and families with knowledge about Alzheimer’s, encouraging preventive measures such as healthy eating, regular physical activity, good sleep hygiene, and social engagement.

“The same lifestyle choices that help prevent Alzheimer’s also promote overall health,” Dr. Nguyen explained. “By fostering healthy communities, we can mitigate the risk of Alzheimer’s and other chronic conditions like cardiovascular disease and diabetes.”

As California grapples with the rising prevalence of Alzheimer’s disease, the Inland Caregiver Resource Center (ICRC) in San Bernardino is taking a proactive stance in supporting caregivers, especially in underserved rural communities. Carmen Estrada, Executive Director of ICRC, shares the organization’s initiatives and personal motivations in a recent interview.

“My involvement with caregiving, particularly for someone with Alzheimer’s, began at home,” says Estrada. “My mother was caring for my grandmother who had Alzheimer’s when I started working for ICRC. The desire to support my mom and learn more about the illness sparked my interest in this field. Although this is the work I do, it is also very personal.”

ICRC, a nonprofit organization, has been a cornerstone for informal caregivers and seniors in San Bernardino, Riverside, Inyo, and Mono counties for over 39 years. As part of a network of 11 caregiver resource centers across California, ICRC provides services such as family consultation, counseling, support groups, training, and respite care—all free of charge.

“Our mission is to help families and communities manage the challenges of aging and caregiving,” Estrada explains. “We cover a vast geographic area with diverse rural communities, from the high desert in Victor Valley to the low desert in Palm Springs. Each community has unique needs, requiring us to be innovative and think outside the box.”

Estrada outlines ICRC’s five-pronged approach to outreach in these communities, emphasizing the importance of word of mouth in close-knit rural areas where current clients are encouraged to share information about services. Building trust through ongoing outreach and fostering relationships is essential, moving beyond simply dropping off brochures. Collaboration with various in-home care agencies ensures respite care reaches individuals across service areas. Flexible service delivery methods, including in-person, phone, Zoom, and Telehealth, especially post-pandemic, have expanded their reach. Finally, community engagement is achieved by taking the time to learn each community’s needs through listening sessions and focus groups, which, while time-intensive, are invaluable.

She emphasizes the importance of understanding how communities prefer to receive information about caregiving and Alzheimer’s. “We recently worked on a hospice toolkit for the Latino and Hispanic community, using listening sessions to inform our project. We discovered that misconceptions about how people want to discuss topics like hospice and Alzheimer’s can hinder effective communication.”

One misconception, Estrada notes, is the assumption that translating materials word for word is sufficient. “For example, the word ‘hospice’ is often translated as ‘auspicio,’ which doesn’t convey the same meaning. Effective communication requires more than just translation; it requires cultural sensitivity and understanding.”

Estrada also highlights the importance of varied outreach methods. “Flyers alone are not enough. Communities want information through radio spots, videos, and commercials. We need to be present on the platforms they use.”

ICRC’s efforts align with California’s Master Plan on Aging, which focuses on five goals: housing for all ages, health reimagined, inclusion and equity, caregiving that works, and affording aging. Although Alzheimer’s is not specifically mentioned, Estrada points out that it interrelates with all these goals.

“The state has encouraged local communities to develop their own master plans,” Estrada explains. “ICRC is part of the Inland Coalition on Aging, and we are working on our local master plan, highlighting Alzheimer’s and caregiving as key areas. Through listening sessions, we learned about the lack of information and the fear surrounding these topics.”

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