What We Know About Parkinson’s Disease in Women

Differences of Parkinson’s Disease in Women

Parkinson’s disease (PD) impacts millions of people around the world, and it does not discriminate based on gender. But while PD affects men and women with some similarities, the manifestation, progression, and even treatment responses can differ significantly between genders, in addition to important discrepancies related to healthcare access and psychosocial factors that can impact quality of life.

Gaining a better understanding of PD in women is essential to providing them the best possible care and support, and many efforts to do so have been made and continue to take place. Initiatives like the Women’s Parkinson’s Project and “Women and PD Teams to Advance Learning and Knowledge” (“Women and PD TALK”) – which APDA’s president and CEO Leslie A. Chambers participated in – are committed to understanding and addressing the gender disparities in Parkinson’s research and care to provide better treatment and resources tailored specifically for women.

In addition, research studies and medical articles – like the 2022 “Unmet Needs of Women Living with Parkinson’s Disease: Gaps and Controversies,” published in Movement Disorders by the International Parkinson and Movement Disorder Society and referenced as the primary source for this blog post – have shed light on some of the differences in how PD presents for women, the unique needs of women who are living with PD, and the remaining gaps in our understanding and lack of attention given to these important variations.

Understanding PD Risks Between Men and Women

Research has shown that women are at lower risk for developing PD than men, but it is not completely clear why this is.
Women may have lower risks be due to:

• Genetics
• Biological differences like environmental exposures
• Lifestyle habits
• Various other factors

This is why it can be complicated to know the risks, and why findings conflict somewhat across studies.

For instance, while caffeine consumption appears to decrease the risk of PD for men, it doesn’t seem to have the same effect for women, especially for those who are postmenopausal and on hormone replacement therapy, for whom it seems to increase risk. Recent research also suggests that men who smoke have a lower risk compared to women who smoke the same amount. Conversely, alcohol consumption seems to decrease the risk of PD for women more than for men. Additionally, while associations between pesticide exposure and Parkinson’s have been made, studies have only found this connection in men, not women.

Understanding these differences could lead to better treatments tailored for both genders, but it is clear that additional clarifying research is needed.

Hormonal Issues, Estrogen, and Parkinson’s

Research has also indicated that hormones, like estrogen – which is more prevalent in women – might play a role in lowering the risk of PD for women. In lab settings, estrogen has shown potential in preventing brain cell death, reducing damage, and inhibiting alpha-synuclein clumping, which is a PD hallmark.  In this realm, APDA has funded research exploring the contribution of menopause transition (peri-menopause) on the onset and progression of PD in terms of pathology (alpha-synuclein accumulation, substantia nigra neurodegeneration, chronic inflammation) and motor dysfunction.

Some studies have suggested that women who are exposed to estrogen more throughout their lives tend to have a decreased likelihood of developing PD. However, the timing and type of estrogen exposure could be important for multiple reasons, and research has seen mixed results related to hormone replacement therapy (HRT) and PD risk. For example, it has been shown that estrogen-only treatment after menopause might increase the risk of PD compared to combined estrogen and progesterone treatment. But additional research is needed because some studies in this area have been inconclusive.

And while one study found that using HRT for a longer time might lower Parkinson’s risk, another showed that using HRT for more than five years after natural menopause could increase the risk. One reason for this confusion could be that the timing and duration of HRT interacts with genetic and environmental factors differently for each person. Understanding how reproductive factors, HRT, and birth control use affect PD could unveil preventive measures. But uncertainty persists, demanding further investigation.

Differences Between Men and Women With Parkinson’s

Stereotypically, Parkinson’s disease has been thought of as primarily affecting elderly white men. This misconception has led to delays in diagnoses for women, younger people, and people of color. For women, a difference in symptoms when compared to men can also exacerbate this problem, as the disease may not be as easily recognized by doctors. Some diagnosed women also feel that their concerns may be more difficult to discuss and/or are not taken as seriously, especially when related to mental health struggles or sensitive physical symptoms. All of this leads to additional delays and gaps in the treatment of the disease.

Possible differences in motor symptoms for women when compared to men:

• More pronounced tremor, facial masking, and restless leg syndrome
• Slower disease progression

Possible differences in non-motor symptoms for women when compared to men:

• More mood and sleep disturbances, anxiety and depression, fatigue and apathy, pain, and urogenital symptoms
• Less cognitive impairment, hallucinations, gastrointestinal symptoms, and sexual dysfunction

Possible differences in psychosocial issues for women when compared to men:

• More psychological distress, self-reported disability, negative self-image, loss of femininity, impaired sexual intimacy, feelings of not being heard, and downplaying of symptoms
• Less social support and quality of life

Treatment of PD can also differ for women, possibly because women’s bodies process certain medication differently than men’s bodies do. For example, women may experience more levodopa-induced dyskinesia (involuntary movement as a side effect of taking levodopa). Women with PD are also less likely to receive advanced treatments like deep brain stimulation (DBS), primarily due to opting out, even though those who opt in often experience an improved quality of life. Additional studies are needed to understand this discrepancy.

In PD care for women, recognizing hormonal influences on symptoms is crucial, and including gynecologists in treatment conversations could make a difference. Many women experience worsening symptoms during pre-menstruation and pre-menopause, possibly due to declining estrogen during these times. In addition, younger women with PD, though rare, face unique challenges, such as managing symptoms and medication usage during pregnancy.

Role as mother and wife

It is essential that PD management takes into consideration the unique challenges women face because of their gender and societal roles.

Women, particularly those in middle age, often face the complex challenge of balancing multiple roles, including parenting and caregiving for family members alongside work and other obligations. This dynamic is especially pronounced for women with PD, who often find themselves maintaining their familial and household responsibilities despite the disease’s challenges. Research indicates that women with PD tend to sustain their usual activities more effectively than men, possibly due to their adeptness at managing various roles within their families and communities.

However, this resilience can come at a cost. Women who assume caregiving roles tend to:

• Experience poorer health outcomes
• Encounter difficulties accessing medical care
• Grapple with increased rates of depression

And – compared to their male counterparts – women with PD typically:

• Receive less social support
• Report lower quality of life
• Endure heightened emotional distress

Furthermore, women with PD are more likely to outlive their spouses and receive less support from family members, increasing their reliance on paid caregivers and elevating their likelihood of spending time in nursing homes. All of this underscores the need for finding better ways to support women with PD.

What can Women With PD do to Combat Challenges?

Despite the difficulties that many women with PD face, there are numerous ways to strengthen your resilience, empower yourself, and defy the norms.

For example:

• Allow yourself the space to acknowledge your struggles and remind yourself that they are valid.
• Seek out a support group, ideally one specifically for women with PD.
• Advocate for yourself within your healthcare team. If you feel you are not being heard or taken seriously, seek a second opinion and/or consider changing physicians.
• Ask for help if you need it. If it’s available to you, periodically lean on friends, family, or outside services to help with things like babysitting, house cleaning, or errands. If someone asks how they can help, give them a specific task that will lighten your load, even if only temporarily.
• If possible, work with a credentialed mental health professional, particularly one with expertise in supporting those with chronic diseases.

What’s next?

Understanding Parkinson’s disease in women goes beyond mere awareness. We must look closely at the intersection between gender, biology, and societal roles. Empowering women with PD to advocate for themselves, supported by caregivers and families, is paramount. Addressing the research gap and complexities surrounding PD in women requires a comprehensive approach, including tailored interventions and support from multidisciplinary teams, ensuring equitable care and meaningful advancements in gender-specific disease management.

Tips & Takeaways

• While PD affects both men and women, research indicates that women are at lower risk for developing PD than men. But with many potential contributing factors, the reason why is not fully known. It is possible that the hormone estrogen – which is more prevalent in women – might play an important role.
• PD symptoms, progression, and treatment response can differ significantly between men and women. There are also discrepancies related to healthcare access and psychosocial factors that can disproportionately impact the quality of life of women with PD.
• Women with PD can combat challenges by advocating for themselves and seeking support in various forms.
• Some progress has been made to better understand how PD differs across genders, but further research is essential so that we can provide women with PD the best possible care and support.