Health Care Barriers Hinder Parkinson’s Care for Latinos
DENVER, Colo.–Aside from dealing with an illness that has so many unanswered questions, Latino elders suffering from Parkinson’s disease also carry the burden of tackling barriers that hinder their healthcare and treatment.
“My Mom is proficient with her English – when she wants to. But she doesn’t read very well– she only has an eighth grade education — so one of us always has to sit in with her on doctor visits and make sure the doctor understands what’s going on with her and so that Mom understands the doctor’s orders,” said West Denver resident Allende, who asked to be identified by last name only because of her immigration status.
Allende, the primary caregiver for her elderly mother, who suffers from Parkinson’s, added, “The fact that she can’t read and understand things like her prescriptions makes it more difficult for all of us.”
Medical Culture Clash
Cultural barriers for Latinos are vaguely acknowledged, if at all, by doctors practicing Western medicine.
Many Latino elders were raised with homeopathic healing methods, Curanderismo, or Santeria, all cultural forms of healing connecting the mind, body and spirit. This different conception of healing often creates a lack of understanding and problems in communicating medical issues and treatment options between doctors and patients.
“Right now, we are struggling with helping my Mom understand that her sickness and bouts of dementia are actually medical issues and unfortunately are not going away. She is convinced that someone has placed a curse on her,” explained Allende.
“To make things worse,” she went on, “some lady told my Mom she could remove the curse for $800. We have even brought her doctor in to help explain, but he wasn’t very helpful — he just attributed her claims to her dementia and basically wrote off the situation.”
Double Parkinson’s Rate for Latinos
Studies show that among the estimated 1 million people with Parkinson’s in the United States (with about 60,000 new patients diagnosed each year) Latinos and whites have nearly double the rate of developing the condition over Asians and African Americans.
However, because there is still so little known about the cause of Parkinson’s, scientists don’t exactly understand why Latinos have a greater risk of developing this incurable, degenerative disease marked by such symptoms as tremors or shaking, slowed movement, rigid muscles, impaired balance and difficulty speaking.
Parkinson’s was once considered mainly a genetic disorder. But research in recent years has shown environmental factors appear to play a key role for increased risk of developing the ailment.
For instance, the largest Parkinson’s study — conducted to date–based on data from 36 million Medicare recipients–concluded that genetics play a relatively small role. The study by researchers at the Washington University School of Medicine in St. Louis, instead pointed to environmental factors, such as long-term exposure to pesticides, herbicides and farming metals (particularly copper and manganese), which might explain the disproportionate rates of Latinos afflicted with the disease. The study called for further research to confirm these suspicions.
Poverty Complicates Disease
According to UCLA’s Center for Health Policy Research, data from 2009 shows Latino elders age 65 and older rank the highest (29 percent) of those living below 200 percent of the federal poverty level, or about $24,000 a year and struggle to make financial ends meet.
Also, higher poverty levels among Latinos may intensify the impact of Parkinson’s. For example, low income tends to limit access to much-needed healthcare and medications.
Poverty stricken elders also face the risk of malnutrition because they lack healthy food options. Diet can be particularly important for managing Parkinson’s symptoms, as well.
The UCLA Health Policy Research Center, using 2009 data, showed that Latinos ages 65 and older have the lowest level of educational attainment among ethnic minorities in the U.S., with an astonishing 57.9 percent having less than a high school education.
“Studies have shown that people who have lower levels of education struggle more with complex things like financial and health literacy,” stated Steven P. Wallace, associate director of UCLA’s center.
He explained that lower literacy directly affects the capacity of patients and family members to understand such things as even simple medication directions to being able to navigate complex healthcare systems, such as Medicare and Medicaid.
Adding language barriers to the mix impacts elders’ ability to understand such things as how diet and exercise affect on health, and may exacerbate effects of the disease.
Eliminating Health Disparities
The need for cultural competence among health care professionals was emphasized in a 2012 article entitled “Social Justice, Health Disparities, and Culture in the Care of the Elderly,” published in the Journal of Law, Medicine and Ethics., by gerontologists at the University of North Carolina, Chapel Hill.
In the report, Peggye Dilworth-Anderson and colleagues stated, “By understanding a group’s values, belief systems, and ways of thinking and behaving, researchers, care providers, and policymakers can be better equipped to identify the cultural influences that serve as barriers and facilitators to eliminating health disparities.”
Other hurdles Latino elders often must overcome may be geographical barriers, and access to technology. Geographical barriers, such as living in rural areas or living with limited transportation options, often restrict elders’ access to getting adequate medical treatment. This scenario is worsened if their Parkinson’s is creating physical limitations, both making a simple trip to the doctor’s office nearly impossible.
A common hurdle for Latinos is the barrier of being undocumented, which stigmatizes this population into a life of living in the shadows, which is fraught with fear of being deported and detained. This fear keeps people from seeking medical assistance unless it is a life-or-death situation. Combinations of language, immigration status and cultural barriers push Latinos further away from seeking medical advice; understanding proper and affective treatment; and willingness to adhere with medical treatment.
“It’s hard to care for my Mom because we are both undocumented, and she doesn’t qualify for things like Medicare or Medicaid, and going to the doctor regularly isn’t something my family can afford to do,” said Allende.
This article is adapted from a series by Cristina Frésquez for The Weekly Issue/El Semanario written through the MetLife Foundation Journalists in Aging Fellows program, a collaboration of New America Media and the Gerontological Society of America.