At a recent Ethnic Media Services (EMS) briefing, experts convened to tackle the pressing issue of Alzheimer’s care in California’s rural communities. As the state’s population ages, the number of individuals living with Alzheimer’s disease and related dementias (ADRDs) is expected to double over the next 20 years, creating significant challenges, particularly for those in rural areas where accessing essential healthcare services is already difficult.
The panel featured prominent figures such as Dr. Rita Nguyen, Assistant Health Officer for the State of California and Director of Population Health at the California Department of Public Health; Carmen Estrada, Executive Director of the Inland Caregiver Resource Center in San Bernardino; Maria Cortez, a caregiver for a family member with Alzheimer’s in Glenn County; and Hagar Dickman, Senior Attorney at Justice in Aging. These speakers shared their insights and efforts to address disparities in Alzheimer’s care access and support for rural communities.
Dr. Nguyen emphasized the urgency of the issue, noting that Alzheimer’s disease has recently become the second leading cause of death in California, surpassing stroke. She stressed the importance of raising awareness about Alzheimer’s, its risk factors, and the need for early diagnosis and care planning. Dr. Nguyen praised the “Take on Alzheimer’s” campaign, developed by the California Department of Public Health, as the first statewide initiative to tackle Alzheimer’s awareness, reduce stigma, and educate the public on prevention and care strategies.
Carmen Estrada shared her firsthand experiences and challenges in providing care for Alzheimer’s patients in rural areas. She discussed the lack of healthcare providers, long wait times for specialists, and the absence of public transportation, which exacerbate the difficulties faced by families in these regions. Estrada emphasized the importance of innovative outreach methods, building trust within communities, and fostering collaborations to support caregivers and patients effectively.
Hagar Dickman from Justice in Aging addressed the legal and advocacy aspects, highlighting the significant barriers to care faced by individuals with Alzheimer’s or dementia, especially those without family caregivers. She called for greater investment in healthcare infrastructure and services tailored to the unique needs of rural populations. Dickman’s research underscored the importance of family caregivers and the severe consequences of unmet care needs, such as institutionalization or death, particularly in rural areas where medical services and caregivers are scarce.
The briefing also highlighted the broader implications of Alzheimer’s disease for California’s rural residents, who tend to be older than their urban counterparts. The speakers emphasized the importance of preventive measures, such as maintaining a healthy diet, staying active, and fostering social connections, which can help reduce the risk of Alzheimer’s and other cognitive disorders.
Overall, the EMS briefing provided a comprehensive overview of the challenges and efforts to improve Alzheimer’s care in rural California. The discussion reinforced the need for continued awareness, education, and policy initiatives to ensure that all Californians, regardless of their geographic location, have access to the care and support they need as the prevalence of Alzheimer’s disease continues to rise.
Carmen Estrada, representing the Inland Valley Caregiver Resource Center (IVCRC) serving the Inland Empire, provided a comprehensive overview of the organization’s efforts to support caregivers and seniors in underserved rural communities. Estrada’s journey into caregiving began at home when her mother cared for her grandmother with Alzheimer’s, sparking her interest in working with the IVCRC.
The IVCRC, a nonprofit organization, has been serving the community for over 39 years, offering a wide range of free services including family consultation, counseling, support groups, training, and respite care across San Bernardino, Riverside, Inyo, and Mono counties. Estrada emphasized the importance of their innovative approaches to outreach in diverse rural communities, highlighting the need for word-of-mouth promotion and ongoing outreach to build trust and foster collaborations.
Estrada detailed the organization’s strategies, which include leveraging local in-home care agencies, providing services through various mediums like in-person, phone, and telehealth, and learning directly from the community through listening sessions and focus groups. She shared insights from a recent project to create a hospice toolkit for the Latino and Hispanic community, which underscored the importance of culturally sensitive communication and diverse outreach methods.
She also discussed the integration of Alzheimer’s and caregiving into California’s Master Plan on Aging, which focuses on housing, health, inclusion, caregiving, and aging. Estrada expressed excitement about ongoing Alzheimer’s research and local master plan initiatives but noted concerns about the rapidly growing aging population and the need for improved infrastructure to support it. She concluded by emphasizing the importance of community-specific approaches and continuous learning to effectively address caregiving and Alzheimer’s challenges.
Hagar Dickman, a senior attorney with Justice in Aging, delivered a compelling presentation on the critical importance of family caregivers for individuals with Alzheimer’s or dementia. She emphasized the significant barriers to care that these individuals face, particularly those who lack family caregivers.
Dickman highlighted her work with California’s long-term services and supports, focusing on the Medi-Cal program, the state’s Medicaid program. She noted that Medi-Cal is the largest payer of long-term care, making access to its services crucial for individuals with long-term care needs.
Her research centered on identifying barriers to personal care services under Medi-Cal, especially for those who cannot direct their own care and do not have family caregivers. This study revealed that having a family caregiver is an invaluable resource, which a segment of the population lacks, resulting in significant care challenges.
California’s largest program for personal care, the In-Home Support Services (IHSS) program, serves 700,000 individuals, helping them live in the community and avoid nursing home care. The IHSS program is self-directed, requiring consumers to manage their caregivers, a task that 70% of users handle with the help of family caregivers. However, individuals with Alzheimer’s or dementia who lack family caregivers struggle significantly with this process.
Dickman and her team also examined other California Medicaid programs, such as the Community-Based Adult Services (CBAS), Assisted Living Waiver (ALW), and Home and Community-Based Alternatives (HCBA) programs. They conducted over 80 focus groups and interviews with more than 100 individuals statewide, finding that low-income individuals with mid to late-stage Alzheimer’s or dementia face substantial barriers to care. This issue is particularly acute in rural areas, where there are fewer medical services, nursing homes, caregivers, and transportation options.
The research underscored the severe consequences of unmet care needs, such as institutionalization or death at home or in hospitals. In rural communities, the scarcity of services and caregivers exacerbates these challenges, forcing individuals to either remain without adequate care or relocate to access necessary services.
Dickman stressed that policy solutions effective in urban areas may not be suitable for rural areas due to these unique challenges. The findings from this research highlight the urgent need for tailored policy interventions to support individuals with Alzheimer’s or dementia, particularly those without family caregivers, ensuring they receive the care they need regardless of their location.
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