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Challenging the Stigma of Alzheimer’s in Ethnic Communities

-Editorial

Caregivers and health experts say the stigma of Alzheimer’s in many communities prevents effective care. In this briefing by Ethnic Media Services, people on the front lines of Alzheimer’s — both medical researchers and on the ground level — share what they’ve learned about addressing cultural taboos around Alzheimer’s and other forms of dementia among older adults and people with disabilities, in communities ranging from Latino, Black, AAPI, and LGBT+.

Dr. Lucía Abascal, CDPH California Public Health said Alzheimer’s disease now ranks as the second leading cause of death for older adults in the region.

The report underscores the gravity of the situation, predicting a doubling of these numbers by 2040 as the population ages. Particularly concerning are the disparities evident within Alzheimer’s, with women and communities of color bearing a disproportionately higher risk. California, being home to the largest concentration of older adults in any state in the United States, faces an imminent challenge in addressing this growing crisis. Recognizing the urgent need for action, the CDPH has launched the “Take On Alzheimer’s” campaign, marking the first-ever statewide initiative aimed at combating the disease.

“The primary goal of the campaign, developed by CDPH, is twofold: to reshape perceptions and reduce the stigma surrounding Alzheimer’s disease. By fostering open conversations and raising awareness, the campaign aims to encourage early diagnosis and prompt medical intervention,” Abascal said. “Fear and stigma associated with Alzheimer’s often deter individuals and their families from seeking essential healthcare services. However, early diagnosis not only unlocks treatment options but also provides crucial support for caregivers and families navigating the complexities of the disease.”

Acknowledging the multifaceted impact of Alzheimer’s, the campaign emphasizes the importance of community engagement and partnership. Efforts are underway to collaborate with local leaders and organizations to address the specific needs and challenges faced by diverse communities across California. Personal testimonies underscore the urgency of the campaign, with many individuals sharing their experiences of witnessing loved ones struggle with Alzheimer’s. 

By empowering Californians to recognize the signs and symptoms of the disease, the campaign aims to foster a collective commitment to tackling Alzheimer’s at every level. Addressing brain health remains a key focus, both as a preventive measure and as part of comprehensive care strategies post-diagnosis. While there may be various remedies and lifestyle choices advocated within different communities, the campaign prioritizes evidence-based approaches to promote brain health and well-being.

There is optimism that through collective action and community involvement, the impact and stigma associated with Alzheimer’s disease can be effectively addressed. By initiating crucial conversations and advocating for early intervention, Californians can unite in the fight against Alzheimer’s, ensuring a brighter future for individuals and families affected by the disease.

With over 30 years of experience working closely with diverse populations, Dr. Dolores Gallagher Thompson sheds light on the nuanced challenges faced by Chinese and Vietnamese caregivers in California. In the vast landscape of caregiving, Chinese and Vietnamese caregivers stand out not only for their sheer numbers but also for the unique set of stressors they navigate. Despite their significant presence in the population, these communities have been largely overlooked in research conducted within the United States. 

Gallagher Thompson’s underscored the heavy burden shouldered by caregivers, predominantly women in the 40 to 60 age range, who find themselves in the challenging position of caring for both elderly parents or in-laws and their children. This delicate balance often leaves caregivers feeling overwhelmed, with stress levels soaring and depression looming as a common companion. Central to the struggle is the concept of filial piety, deeply ingrained in Chinese culture for millennia. 

However, as societal dynamics shift, the younger generation of caregivers finds themselves torn between tradition and the practicalities of modern life, leading to familial discord and heightened tensions. Addressing these complex dynamics requires a holistic approach that recognizes the family unit as a whole. Gallagher Thompson advocated for intervention programs that not only support the individual with dementia but also provide essential tools and resources for caregivers. Education emerges as a cornerstone of effective intervention, with a focus on dispelling misconceptions and stigma surrounding dementia within these communities. 

Language barriers and cultural nuances further underscore the need for culturally sensitive approaches to caregiving support. Beyond education, practical skills training forms another vital component of caregiver interventions. From communication strategies tailored to the unique needs of individuals with dementia to stress management techniques, empowering caregivers with practical tools is important. 

Crucially, Gallagher Thompson emphasized the importance of caregiver self-care, a concept often overlooked in Asian communities where familial obligations reign supreme. By reframing self-care as essential caregiver skills, interventions aim to promote caregiver well-being while fostering a sense of inclusivity and support within families. In the quest for cultural relevance, community engagement emerges as a guiding principle, with input from community advisory boards shaping the development of intervention programs. Through a collaborative approach rooted in cultural understanding, these initiatives strive to bridge the gap between tradition and modernity, offering hope and support to caregivers grappling with the complexities of dementia care.

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