Women with Parkinson’s Need Better Care, Researchers Say
An international team of scientists is calling for more research about how to better care for women with Parkinson’s disease (PD).
“Given the millions of women affected worldwide with PD, and the known differences in this disease’s manifestations and effects between genders, remarkably very little has been done to understand those differences or tailor management to consider the unique needs of women,” researchers wrote.
“Women with PD need to be educated and empowered on how to communicate their symptoms and needs, get engaged in research, get organized as a community, and support one another,” they added.
The scientists — among them three women who themselves live with Parkinson’s — published their paper, “Unmet Needs of Women Living with Parkinson’s Disease: Gaps and Controversies,” in the journal Movement Disorders.
The team highlighted an accumulating body of research indicating there are sex and gender differences that are common among Parkinson’s patients. (Of note, sex refers to biological differences, whereas gender refers to psychological and sociological identity.)
As an example, the most common symptoms of Parkinson’s are different for women. Compared to men, women are more likely to experience a tremor-dominant disease, and they tend to have a slower progression of motor symptoms. Women are more likely than men to experience pain, restless leg syndrome, or depression, but less likely to have hallucinations. Gastrointestinal (digestive) problems are more common in men, whereas problems related to urination and the genital tract are more common in women.
Hormone fluctuations related to the menstrual cycle can have an impact on Parkinson’s symptoms and often is under-discussed. It is common for symptoms to worsen in the days prior to a period, and in the time before menopause.
The researchers also noted that, as the number of people with early-onset Parkinson’s is increasing, it’s likely that more and more people with Parkinson’s will choose to become pregnant. “There are no evidence-based guidelines on the management of PD during pregnancy, and literature on maternal safety … and fetal outcomes, is scarce,” the researchers wrote.
The scientists stressed that the majority of research on sex and gender in Parkinson’s has focused on sex-related differences in biology, but this ignores the impact of sociological gender roles on the disease. Because of the social role that women occupy, they experience unique barriers and challenges in receiving medical care.
“Women with PD can feel like they are not being heard or that what matters to them most is not considered … They may downplay their symptoms and may not realize the association of these symptoms with their PD and therefore do not receive treatment,” the researchers wrote.
As an example, pelvic floor problems are more common in women with Parkinson’s than in those without the disease, but these issues often are not discussed with clinicians. As a consequence, these problems are not treated. The team recommended screening women for pelvic floor problems, and referring them to physical therapy when needed.
It usually takes longer for women with Parkinson’s to be diagnosed and referred for specialist treatment, and communication barriers likely contribute to these delays. The perception among clinicians that Parkinson’s is mainly a disease of older white men likely also contributes to these delays. The researchers noted these inequities tend to be exacerbated in historically marginalized communities.
Beyond healthcare, living with Parkinson’s as a woman can have an effect on one’s identity.
“When women are diagnosed with PD, their perceptions of their own womanhood can change,” the researchers wrote. “How they view their own bodies and their perception of what others think of them can be very negative … Women with PD can feel unattractive and may express a feeling a loss of femininity resulting in a destructive self-image.”
The team also noted that women tend to take on more caregiving responsibilities than men, which further affects how living with a disabling disease impacts their lives.
Overall, the researchers stressed a need for better care strategies to address the challenges faced by women with Parkinson’s.
“Multidisciplinary care should be tailored according to not only sex-related symptoms and comorbidities but also sex- and gender-specific psychosocial issues,” they wrote. To support this kind of care, the team called for more research into how sex and gender affect the experience of Parkinson’s.