Last summer I enjoyed the honor and great privilege of presenting a poster session with my former colleague Anderson Torres, PhD, LCSW-R, at the 34th Annual Conference of the National Association of Hispanic Nurses (NAHN). The conference was held in San Antonio, Texas—a city known for good Southwestern food, intoxicating Mariachi and Tex-Mex music and warm, engaging Texan hospitality.
NAHN, founded by Dr. Ildaura Murillo-Rohde in 1975, is a professional nursing association committed to improving the health of Hispanic patients and communities and to increasing educational, professional and economic opportunities for Hispanic nurses. Although he is a social worker, not a nurse, Anderson was one of the core group members who helped in revitalizing and expanding our local NAHN chapter here in New York City.
The subject of our poster presentation was the correlation between diabetes and Alzheimer’s disease in the Hispanic community. Alzheimer’s is a topic close to Anderson’s heart, since his abuela (grandmother) suffered from this heartbreaking condition. The Alzheimer’s Association defines it as an irreversible, progressive disease that slowly destroys memory, reasoning skills and, eventually, the ability to carry out the simplest tasks of daily living. Our presentation focused on the effects of diabetes and Alzheimer’s disease among Hispanics and on the role diabetes plays in increasing the risk of dementia in this vulnerable populations. We also presented culturally competent, patient-centered strategies that our Hispanic community can implement in real-life settings to promote healthy behavior change and encourage patients to take control of their health.
Before I describe our presentation in detail, let me explain that for nearly 40 years I have served as a home care nurse with the Visiting Nurse Service of New York (VNSNY), which was founded by Lillian D. Wald in 1893. We VNSNY nurses collaborate with teammates in other disciplines, such as medicine and social work, to offer home health services—ranging from infant care and acute care to long-term rehabilitation and hospice care—to a highly diverse patient population throughout New York City and two suburban counties.
About a quarter of VNSNY patients are non-English-speaking, including the many Spanish-speaking patients that I care for in the Washington Heights neighborhood of Northern Manhattan. To offer a broader perspective, I am one of about 4,500 Hispanic nurses in a city estimated to have more than 2.5 million Hispanic residents. Working for VNSNY makes me a member of the largest group of Spanish-speaking Hispanic health care providers in our metropolitan area. For the record, VNSNY defines Hispanics as persons who come from Mexican, Puerto Rican, Cuban, Central or South American, or other Spanish cultures. The term “Latino” encompasses people from Brazilian, Asian and African cultures as well.
In 2008, VNSNY was honored with the NAHN New York City Chapter’s first-ever Institutional Award, recognizing our agency for its efforts to “raise awareness of and address health care disparities and increase diversity in nursing” and for being a true champion and outspoken advocate for Hispanic communities in New York City.
Anderson began his portion of our presentation by noting that the number of U.S. residents aged 65 or older is projected to increase to 12.5 million by 2050, while those aged 85 or older are expected to number 2.6 million at mid century. As the average age rises, the risk of contracting Alzheimer’s disease rises concomitantly. Furthermore, Anderson pointed out, the Alzheimer’s Association reports that the number of Hispanics/Latinos in the U.S. with Alzheimer’s disease and related dementias could increase by more than sixfold by mid century—to as many as 1.3 million.
“The lack of Alzheimer’s resource information in the Spanish language has become a serious barrier to meeting diagnostic and cultural needs and obtaining appropriate services for Hispanic patients suffering from this disease in New York City,” said Anderson, who co-founded the Latino Alzheimer’s Coalition of New York, Inc. (LAC-NY) to address issues related to access, information, advocacy and research.
“Alzheimer’s disease exerts a direct impact on the emotions and behaviors of both diagnosed individuals and their [family] caregivers,” Anderson continued, adding that Alzheimer’s disease is a shared family experience that can have a devastating effect on Hispanic patients’ extended family systems. He noted that studies of Alzheimer’s caregivers have identified increased depression, anxiety, use of psychotropic medications and a negative impact on their work and social lives.
While research is only beginning to uncover the impact of Alzheimer’s disease among Hispanics, the Alzheimer’s Association suggests that this population may be at greater risk for dementia than other ethnic or racial groups, Anderson said. In 2005 the association reported that cardiovascular risk factors such as diabetes and hypertension—which contribute to higher rates of cognitive decline with aging—are also more prevalent among Hispanics.
Patients with Alzheimer’s disease deteriorate and debilitate, requiring supervision and controlled environments to help them remain safe. “Many Hispanic families include working adults who are unable to provide Alzheimer’s patients with the level of care needed in a traditional home setting,” Anderson said. “In spite of their cultural viewpoint that nursing homes are uncaring environments [and that it is the family’s responsibility to care for elders], more Hispanic families find themselves facing the difficult choice of whether to institutionalize their parents in nursing homes.
Therefore, he added, nursing home facilities need to address the needs of Hispanic residents with Alzheimer’s disease and develop a model for providing culturally sensitive living environments and culturally and linguistically competent care. Anderson noted that knowledge and understanding of Hispanic cultural concepts, such as traditional perceptions of illness and intervention, is the key to providing a culturally sensitive approach to care delivery. In addition, health care providers who serve these patients must be trained in cultural nuances, cultural competency, symptom reduction, caregiver receptiveness, engagement in outreach programs and psycho-educational services.
Anderson concluded by presenting a successful best-practice model he developed, which focuses on providing empowerment and improving the quality of life for Hispanic Alzheimer’s patients and their families. His model combines culturally relevant videos and Spanish-language content with a multidisciplinary approach to care delivery that brings together teams of la familia (family), physicians, nurses, social workers, caregivers and informal networks.
As a supplement to this model, Anderson provides cultural competence training to health care providers who serve Hispanic/Latino patients living with Alzheimer’s disease and its clinical co-morbidities, including diabetes. He will soon begin working with the American Diabetes Association as the New York City chair for the ADA’s Por Tu Familia (For your Family) initiative, which will target boroughs with a high percentage of Hispanics/Latinos with diabetes.
Hispanics also suffer one of the highest rates of diabetes in the United States. In New York City, the prevalence of diabetes among Hispanics is more than 50% higher than average. According to the findings of a recent study conducted by the National Institute on Aging (NIA) under the auspices of the National Institutes of Health’s Intramural Research Program, diabetes can impair a patient’s cognitive health. The study demonstrated that poorly controlled diabetes with high cortisol production causes high levels of stress.
Furthermore, the Alzheimer’s Association has published findings that support the correlation between diabetes, hypertension, obesity and Alzheimer’s disease. When we look at the Hispanic/Latino community, we find a high incidence of these conditions along with high rates of cardiovascular disease. This all contributes to a high risk factor for Alzheimer’s in the Hispanic population.
My portion of our poster presentation was intended to raise awareness of these research findings—and of the importance of controlling diabetes. As a New Yorker whose family emigrated from the mountains of Puerto Rico, I sometimes share with patients that my own mother and father died very young, and that their diet played a role in their heart disease and diabetes.
We VNSNY nurses help diabetes patients with every aspect of managing their disease, so that they can feel better and reduce the risks of long-term health consequences. One patient education tool we have found helpful is our agency’s Diabetes and Meal Planning Guide, which teaches diabetics to incorporate healthy lifestyle modifications, like meal planning and portion control, to help control their blood sugar.
One of my VNSNY colleagues, clinical nurse specialist and diabetes educator Margery Kirsch, MS, RN, CDE, describes the history of our agency’s success in using this tool. “It all started with [the late] Elaine Edelstein, MSN, RN, CDE, who was the VNSNY’s first diabetes clinical nurse specialist,” she explains. “Recognizing the need for a specialized nutrition teaching tool for Spanish-speaking patients in the five boroughs of New York City, in 1996 Elaine developed a guide that showed pictures of correctly portioned, commonly eaten foods, labeling them in both English and Spanish.
“Initially, the tool consisted of food-portion pictures on 4” x 6” laminated cards, attached to a key ring. This format, called Meals on Cards, proved very popular with staff and patients alike,” Margery goes on to say. “Two years later, Elaine expanded the format to a full-size 8 x 11-inch spiral bound book that also included the Food Pyramid and [sample low-calorie meal plans]. This book, which is still one of the most widely used teaching tools at VNSNY, received the prestigious Nutrition Education Award from the American Association of Diabetes Educators. We fondly remember Elaine, who passed away in 2005. Her patient teaching guide makes a fitting memorial to her meaningful work to improve the lives of patients with diabetes.”
Editor’s Note: Anderson Torres, PhD, LCSW-R, director of health initiatives at Bon Secours New York Health System, also contributed to this article.