DBS is an established therapy for Parkinson’s disease that shows substantial and sustained improvement in both motor and non-motor symptoms, as well as quality of life, with lower complication rates. (1)
Parkinson’s disease is a condition in which certain brain cells gradually deteriorate and die, leading to signaling problems in the brain. This results in a characteristic set of motor symptoms, including slow movements, tremors, rigidity, and balance issues, along with non-motor symptoms.
It also involves emotional complications, sleep disturbances, and difficulties with cognition and memory.
It is estimated that around 10 million people worldwide have Parkinson’s disease. The disease was named after British physician James Parkinson, who published a report on it in 1817.
Parkinson’s disease typically develops later in life. Around 10 to 20% of cases are diagnosed before the age of 50, and approximately 1% of adults over the age of 60 are affected.
Parkinson’s disease is more common in men than in women, though there is no definitive evidence explaining the reason for this difference. (2)
The disease is caused by the progressive dysfunction and death of dopaminergic neurons, which are brain cells responsible for producing dopamine.
Dopamine is a neurotransmitter and signaling molecule that helps nerve cells communicate with each other and the rest of the body.
The loss of dopamine-producing cells is a defining feature of Parkinson’s disease, leading to disrupted nerve signaling and the emergence of symptoms.
The exact cause of cell death in dopamine-producing neurons is not well understood. (2)
DBS involves implanting a device that delivers electrical stimulation to specific regions of the brain, helping to control motor symptoms. Women make up approximately 23% to 30% of DBS recipients.
Factors contributing to the lower use of DBS among women include:
Limited access to specialty care, leading to fewer referrals
Clinician bias
Less social support
Greater caregiving responsibilities
Gender differences in preferences and decision-making
Previous studies have shown that women are more likely than men to decline DBS surgery due to a greater fear of complications.
Quantitative studies have explored DBS decision-making, categorizing participants into three groups:
Those who take the initiative
Those who agree when the treatment is offered
Those who hesitate and wait
The majority of women fall into the “hesitating and waiting” category, expressing a strong fear of brain damage. The other two groups were able to overcome their fear by placing complete trust in the surgeon, whereas those in the “hesitating and waiting” category struggled to do so.
It is suspected that women are generally more apprehensive about surgery, making them more likely to refuse the procedure.
Mollie Lombardi, in an article for Parkinson’s News Today, shared her observations from working with Parkinson’s patients for over 10 years.
Based on her experience, she noted that while men and women are equally affected by Parkinson’s disease, women often prioritize caregiving for others over their own healthcare needs.
Women frequently see themselves as caregivers rather than as burdens. Few women have undergone DBS surgery. When Mollie was preparing for her own surgery, she did not speak to a single woman who had already undergone the procedure.
Women also lack adequate support when making decisions before and after surgery, as noted in the article. Mollie emphasized the importance of having better and more supportive caregivers. (3)
DBS involves implanting a device that delivers electrical stimulation to specific regions of the brain to help control motor symptoms. Women make up approximately 23% to 30% of DBS recipients, a disparity that cannot be fully explained by differences in Parkinson’s disease incidence.
The article identified four key themes:
Information sources are similar for both men and women, with a strong preference for hearing personal experiences.
Motivations for DBS surgery vary and are often personal.
The decision-making process takes time—sometimes even years.
Concerns about surgery influence decision-making.
Similarities:
The way participants gathered information about DBS was similar between men and women, including those who did and did not undergo surgery. Most conducted online research, watched YouTube videos, read websites, and attended interviews with neurologists. They also sought information through Parkinson’s disease organizations, webinars, and emails.
Most participants also spoke with individuals who had previously undergone DBS surgery. Many felt they had sufficient information to make a decision.
Differences:
Women discussed concerns about the appearance of their hair after surgery, as part of the procedure involves shaving the head. While most participants were not overly bothered by this, they were often unprepared for how they would look post-surgery.
Both men and women wanted to talk to individuals who had already undergone DBS, but women generally showed more concern than men.
Similarities:
The primary motivation for surgery was better symptom control and reduced medication use. Most participants overcame their fear of surgery by placing their trust in their doctors.
Differences:
Participants reported overall improvements in symptoms and quality of life after surgery. Some women specifically mentioned not wanting to become burdens to their families, while others expressed a desire to spend quality time with loved ones post-surgery.
Similarities:
Many participants were aware of DBS but did not consider it an initial treatment option. Instead, it was seen as a last resort when medications could no longer control symptoms effectively.
Most participants expressed interest in undergoing DBS when increasing medication doses became problematic and affected motor function.
Differences:
Women faced greater challenges in decision-making, often feeling a lack of support before and after surgery. In contrast, men—particularly those who were married—often involved their spouses in the decision-making process, as they could rely on them for post-surgical care.
Similarities:
Most participants identified infection, hemorrhage, and anesthesia risks as their main concerns. Some acknowledged the risks of brain surgery but noted that overall, the risks were relatively low. Many expressed confidence in their surgical teams.
Differences:
Some men wanted precise numerical data on the risks and benefits of DBS, whereas women placed more value on hearing personal experiences and building confidence in their surgeons. Women who moved forward with surgery tended to focus on trust in the medical team rather than dwelling on the risks.
Overall, gender differences exist in the decision-making process for DBS surgery. Women tend to hesitate more, have greater concerns about complications, and face additional social and caregiving barriers. These factors contribute to the lower number of women undergoing DBS. (1)
References
Fullard, Michelle E., Ashley Dafoe, Erika Shelton, Drew S. Kern, Dan D. Matlock, and Megan A. Morris. "How Women and Men with Parkinson's Disease Approach Decision-Making for Deep Brain Stimulation Surgery." Movement Disorders Clinical Practice. Accessed February 5, 2025. https://doi.org/10.1002/mdc3.14284.
Wexler, Marisa. "Parkinson Disease Overview." Parkinson’s News Today, October 16, 2023. https://parkinsonsnewstoday.com/what-is-parkinsons-disease/.
Lombardi, Mollie. "Women, Men, and Undergoing DBS Surgery for Parkinson’s." Parkinson’s News Today, February 3, 2025. https://parkinsonsnewstoday.com/columns/women-men-undergoing-dbs-surgery-parkinsons/.
(Input from various sources)
(Rehash/Dr. Lakshmisahithi Tanneru/MSM)