The urgent need for advocacy coincides with the growing number of people impacted by Alzheimer's disease (AD) and expectations that this number will continue to increase across race and ethnic groups in the United States. Latinos will face a disproportionate burden given their increased risk and challenges.
Caregiver support services can make a real difference in the daily lives of people with dementia and their family caregivers. We need to ensure that AD support services exist and are accessible to Latino families.
Visit the Illinois Cognitive Resource Network (ICRN) website to learn more about opportunities to advocate for individuals with Alzheimer’s disease and their families. ICRN is a national leader in the development and implementation of effective community-based models for adults to access research, education, training, and support services to promote cognitive health and quality of life.
The number of diagnosed cases of AD among Latinos is only expected to rise, reaching an estimated 1.3 million Latino seniors by 2050 (Alzheimer’s Association, 2010).
Latinos are underrepresented in medical research in general and this holds true for AD research. Current AD research studies may not be readily accessible to Latinos for a variety of reasons, including distrust of research, lack of knowledge about research opportunities, and language barriers. The body of research that does exist shows a significant disparity and alarming trends.
We must view these statistics all the more critically given the significant gaps on the AD research focused on Latinos. For example, most studies previously mentioned look at “the Latino community” as a homogeneous group and tend to concentrate in the northeast and southwest regions of the United States. Consequently, AD research is needed across different subgroups and it should account for immigration status and place of residence in the US. More studies are also needed to document the experiences of Latino AD caregivers.
According to the Alzheimer’s Association, Latinos are 1.5 times more likely than non-Latino Whites to develop AD or a related dementia (Alzheimer’s Association, 2010).This increased risk may be attributed to Latinos’ high rates of cardiovascular diseases and risk factors (e.g., hypertension, diabetes and heart disease), which are also known risk factors for AD. Second, Latinos have a longer life expectancy and age is the greatest known risk factor for this disease (Alzheimer’s Association, 2010).
Some studies suggest that older Latino adults present with symptoms of AD four to seven years younger than their non-Latino white counterparts, e.g., 67 years versus 74 years, respectively (University of Pennsylvania, School of Medicine, Christopher M. Clark, M.D., Presented in ICAD; Younger age of dementia diagnosis in a Hispanic population in southern California, International Journal of Geriatric Psychiatry, Jun 2014).
Latinos lack or have limited access to information about Alzheimer’s disease (AD) and related dementias. This lack of information ranges from ways to protect your brain health to accurate knowledge about AD itself.
In the event of a diagnosis, the lack of information about AD itself and its progression results in lack of planning for the future (health care, legal, and financial issues). This in turn has serious implications for the quality of life of the person with AD and their caregiver. Consequently, Latino caregivers may be ill equipped to handle caregiving issues including issues of safety, communication, and challenging behaviors when caring for someone at home.
Latino seniors and their caregivers lack awareness about the risk factors for brain health, how to recognize the warning signs of AD or dementia, and information about its diagnosis and treatment (NHCOA, 2013). Lack of knowledge about the warning signs of AD may result in delayed diagnosis, delayed medical care, and limited treatment options. Although Latinos may associate AD with memory loss, many have no other information about complications or available treatment.
Although the number of online educational resources on Alzheimer’s disease and caregiving available in Spanish is growing (e.g., ADEAR brochures on AD and the caregiver manual, Alzheimer’s Association Spanish Portal), the availability of such resources lag in comparison to what is available for English caregivers. This overall gap in knowledge and information is detrimental to the health of Latino older adults and their caregivers and the entire community. Moreover, AD related health education is critical to tackling the stigma and misconception that AD is a mental illness, a stigma that exacerbate barriers to receiving a diagnosis and care.
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