“My mother started to have these horrible nightmares,” says Anne, an Asian American woman in Greater Boston. “She would wake up in the middle of the night multiple times … in a panic.”
Anne assumed these ‘night terrors’ were a normal part of her mother’s aging, but then she noticed her mother started to fall a lot more over the next few years, which she took as a sign of something more serious.
“Even after multiple visits to the primary care provider, we couldn’t figure out what was going on until much later when we learned that she had Parkinson’s,” said Anne. “Looking back, my mom probably had Parkinson’s for many years before the falls.”
Ben is also an Asian American living in Greater Boston, and for him, the effects of Parkinson’s disease also began slowly.
“I started to get these hand tremors, which made it hard to do day-to-day things like brushing my teeth. When I went to the doctor, they said I might have Parkinson’s, but they won’t know until they run multiple tests. After taking some medicine, my tremors improved, and I could walk better. The neurologist came back and said I had Parkinson’s. The diagnosis process was very long, and it was all so confusing because Parkinson’s doesn’t have a gold standard for diagnosis like other diseases.”
Anne and Ben are composites based on interviews with people who developed Parkinson’s or provide care for loved ones. The responses are part of an ongoing study conducted by Tufts University and Asian Women for Health, which we’ll discuss further below.
But first, what is Parkinson’s disease, or PD?
The disease is a neurodegenerative disorder that gets worse over time. It affects what are known as dopamine-producing neurons in the brain and impairs parts of the body controlled by nerves. No cure has been found for the disease, but a common treatment, Levodopa, can increase dopamine levels to help different parts of the brain talk to one another and reduce symptoms. Another treatment is “Deep Brain Stimulation,” or DBS surgery, which can help correct neural signals. A wire is surgically implanted inside the brain to fix the signals. The treatment and care for the disease mainly depend on managing many medications, actively monitoring the progression of symptoms, and exercising.
However, those from different cultural backgrounds or who speak English as a second language can face many barriers to accessing care.
Most hospitals have translation services, but the availability of in-person translators or the quality of the digital translations varies. There’s also a cultural aspect for many Asian Americans that works against the services and care the patients receive. Many people may want to keep the diagnosis within the close family members and are hesitant to bring up issues or side effects. Some neurologists we interviewed say that they see a pattern within Asian American patients who want to be perceived as “good patients.” They don’t want to upset the doctor and may think that the changes or side effects are things that they can deal with on their own.
Furthermore, Asian Americans are often underrepresented in clinical research for Parkinson’s. Nearly one million people in the U.S. are living with Parkinson’s disease, but Asian Americans have largely been excluded from PD research. To our knowledge, at Tufts University and Asian Women for Health, no studies to date have examined barriers to PD care, specifically among Asian Americans. In a 2016 systematic review examining racial disparities in PD diagnosis, treatment, and access to care, only five of 12 studies included Asian Americans, and only one study in 2014 included enough Asian Americans to examine the subgroup separately from other racial subgroups.
Tufts University and Asian Women for Health want to change that. Launched in 2022, our collaboration is conducting a two-year study called “ACCESS-PD,” which stands for Advancing Comprehensive Care & Enhancing Service Standards in Parkinson’s Disease among Asian Americans. Funded by the Michael J. Fox Foundation, the study aims to determine the cultural and systemic barriers that Asian Americans face in accessing care and participating in research studies for Parkinson’s disease.
The study is recruiting family care partners for its national online survey, which will examine the experiences of providing care and seeking diagnosis and treatment. To be eligible, the care partner or family member must be of Asian descent.
The study is open to family members who care for an individual with Parkinson’s. This could include a spouse, child, grandchild, sibling, or cousin. Participants must be at least 18 years old, and we ask only one family member to complete the survey. The survey is anonymous and confidential and available in English, Vietnamese, and Chinese-Traditional and Simplified. After verification, we offer a $25 e-gift card.
Through the ACCESS-PD study, we are working to close the knowledge gap that we believe can delay Asian Americans from getting a proper diagnosis and culturally appropriate treatment. We are also working to increase Asian American representation in clinical research, which could lead to better care and treatment of the disease. The insights and findings from the ACCESS-PD research will inform the creation of the “Toolkits,” which will help increase PD literacy among Asian Americans, helping them better identify symptoms of Parkinson’s and motivate them to receive healthcare. The Toolkits will be explicitly catered to patients, care partners, and clinical providers so that Asian Americans can receive culturally appropriate care and resources. ACCESS-PD seeks to be the first step towards understanding barriers to access to care and enhancing service standards for Asian Americans with PD.
For more information about how to be included in this study, please check out asianwomenforhealth.org/accessPD.
Chung is the senior program manager at Asian Women for Health, and leads the Parkinson’s research program partnered with Tufts University. Asian Women for Health is a non-profit organization dedicated to advancing health equity for Asian Women and people from diverse, underrepresented backgrounds through community engagement, education, and representation. (The studies cited here can be found at https://doi.org/10.4236/apd.2016.54011 and https://doi.org/10.1007/s10823-014-9233-x).
