Alzheimer’s disease, with age as its primary risk factor, is a growing concern in California, home to more adults aged 65 and over than any other state. Women are particularly impacted by this disease, comprising nearly two-thirds of those diagnosed and over 60% of caregivers. With 11 million women in the U.S. living with Alzheimer’s or caring for someone who has it, the burden is immense. Women diagnosed with Alzheimer’s face social isolation, misdiagnosis, and stigma. At the same time, female caregivers often endure adverse personal, professional, and mental health consequences due to their unpaid caregiving roles. Over a third of U.S. dementia caregivers are daughters and 19% of women Alzheimer’s caregivers have had to quit their jobs due to caregiving duties.
To address these issues, Ethnic Media Services organized a briefing featuring Alzheimer’s practitioners, researchers, advocates, and firsthand storytellers. They discussed how Alzheimer’s disproportionately affects women both as patients and caregivers and explored potential solutions. Among the experts were Dr. Wynnelena C. Canio, a Geriatric Medicine Practitioner and Medical Director of Acute Care for the Elderly at Kaiser Permanente San Rafael, and Dr. Mirella Diaz-Santos, an Assistant Professor in Residence of Neurology and Director of Equity for Latino/Hispanic Healthy Aging Lab at UCLA.
Dr. Canio shared her personal and professional journey, highlighting her dedication to geriatric medicine and Alzheimer’s care, inspired by her experiences with her grandparents, particularly her grandmother who suffered from dementia. She emphasized the importance of addressing Alzheimer’s at both a personal and societal level, noting her involvement with the California Governor’s Task Force on Alzheimer’s Prevention and Preparedness. The task force’s final report included ten major recommendations within the master plan for aging, aiming to change the course of aging in California. A key recommendation was the creation of a multilingual, multicultural, and intergenerational public awareness campaign for Alzheimer’s, developed by the California Department of Public Health to shift public perception and reduce stigma.
With May highlighting significant events for women, including Mother’s Day and National Women’s Health Week, the briefing underscored the need for increased awareness and support for women affected by Alzheimer’s. The campaign aims to educate Californians about the prevalence of Alzheimer’s, provide accessible informational resources, and foster conversations to build understanding around the risk factors for women, reduce stigma, and support women and families in improving brain health.
Dr. Canio stressed the importance of community support and education, encouraging individuals to recognize the signs of Alzheimer’s and engage in conversations about brain health. The goal is to empower all Californians to take an active role in addressing Alzheimer’s, ultimately improving the quality of life for patients and caregivers alike.
Dr. Mirella Diaz-Santos, a neuropsychologist and Assistant Professor in Residence of Neurology at UCLA, directs the Equity for Latino Healthy Aging Lab. She focuses on the health and well-being of Latino populations as they age. As a bilingual specialist in neuropsychological evaluation, particularly in the early detection and diagnosis of cognitive disorders like Alzheimer’s, she conducts coordinated testing that helps interdisciplinary medical teams determine appropriate diagnoses based on symptoms and daily life impacts.
Dr. Diaz-Santos emphasized the importance of understanding the complex factors contributing to cognitive decline, especially among women and ethnic minorities. She highlighted the interplay of genetics, biology, environment, and chronic stressors such as trauma, discrimination, and gender roles, which can influence the risk of developing Alzheimer’s and related dementias. She advocates for community engagement and collaboration between researchers and diverse populations to address these health disparities, emphasizing the need for tailored treatments and interventions that consider the unique experiences and challenges of different communities.
The panel also heard from Annie Chung, President and CEO of Self-Help for the Elderly, who discussed the impact of Alzheimer’s on Chinese families, particularly women, and the importance of increasing public conversations about the disease. Ms. Chung explained her long tenure with Self-Help for the Elderly, starting as Executive Director in 1983. She highlighted the stigma surrounding Alzheimer’s in Chinese culture due to the derogatory translation of the disease. To address this, Self-Help for the Elderly changed the translation of Alzheimer’s to reduce stigma and encourage families to seek assistance.
Ms. Chung emphasized the importance of training and supporting caregivers, noting that taking care of an Alzheimer’s patient is a 24/7 responsibility. Self-Help for the Elderly offers bi-weekly support groups for family caregivers, providing training, resources, and a platform to share experiences. The organization also organizes outings for caregivers to help them manage stress and avoid burnout. She stressed the need for ongoing awareness-building to eliminate derogatory terms for Alzheimer’s in all languages and provide supportive services for both family and professional caregivers. She mentioned the potential use of AI to lower anxiety and tailor care for patients and the importance of community resources for respite care to support families needing temporary relief.
Marianna Icanoveri, who founded and runs an agency primarily serving Fijian and Pacific Islander caregivers in Marin County and Sonoma, expressed gratitude for the opportunity to discuss caregiving issues faced by Pacific Islanders, particularly Fijian caregivers in California. She introduced herself as the owner and operator of Prestige In-Home Care, a non-medical, California-registered caregiving agency based in Petaluma. Ms. Icanoveri, trained as a nurse in California, ventured into the caregiving business 20 years ago with the aim of promoting Fijian caregivers.
Ms. Icanoveri highlighted that due to their multi-generational and communal way of living, Fijians are accustomed to taking care of their elderly and loved ones from a young age, making caregiving a natural part of their culture. Her agency provides professional training and certification to enable Fijians to work as caregivers in California. She emphasized the importance of Pacific Islander caregivers, noting that approximately 90% of Fijians in California are involved in caregiving. At Prestige In-Home Care, 65% of her caregivers look after clients with Alzheimer’s.
Ms. Icanoveri discussed the critical role of training and supporting caregivers to prevent burnout and depression. Her agency encourages caregivers to take breaks, go on vacations, and participate in social and religious activities to manage stress. The Fijian community’s strong networking through church groups and regular meetings provides a platform to share caregiving concerns and solutions. She underscored the importance of understanding the stages of Alzheimer’s to prepare caregivers for the challenges they will face and emphasized the need to ensure caregivers are physically, emotionally, and mentally capable of handling clients with various ailments, including Alzheimer’s. Prestige In-Home Care strives to provide the best possible care to clients, ensuring their loved ones continue to enjoy quality service.
Through these discussions, it is clear that addressing the heavy toll of Alzheimer’s on women requires comprehensive strategies, including public awareness campaigns, tailored training for caregivers, community support, and culturally sensitive approaches to reduce stigma and provide effective care.
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