Public Release: 

Women with Parkinson's disease less likely than men to have caregivers

Penn Medicine study highlights a general need for more support of elderly women with disabilities

University of Pennsylvania School of Medicine

PHILADELPHIA--Female Parkinson's disease patients are much less likely than male patients to have caregivers, despite the fact that caregivers report greater strain in caring for male patients.

The findings come from a large study reported today in Neurology by researchers at the Perelman School of Medicine at the University of Pennsylvania. According to the researchers, the disparity between female and male patients probably derives in part from the fact that women tend to outlive their most likely potential caregivers: their husbands.

"Care provided by family and friends to people with Parkinson's disease is an important source of support, and our findings show that women living with Parkinson's are less likely to receive this support than men," said study lead author Nabila Dahodwala, MD, associate professor of Neurology at Penn Medicine. "We need strategies to improve women's access to this support."

Dahodwala and colleagues' analysis was part of a larger study of Parkinson's patients, funded by the National Parkinson's Foundation (NPF), that has been ongoing since 2009 at Penn Medicine and 20 other centers in the U.S., Canada, the Netherlands, and Israel. The analysis covered 7,209 patients enrolled during 2009-2014.

The researchers found that 88.4 percent of male patients reported having a caregiver at the time they were enrolled in the NPF study, compared to just 79.4 percent of female patients. Male patients also were more likely to have a caregiver accompany them on their first visit to a study center (61.0 percent vs 56.8 percent). This was despite the fact that caregivers of female patients reported experiencing significantly less psychological strain than caregivers of male patients.

These support-related disparities between male and female patients remained obvious even when the researchers adjusted the analysis to account for small differences between the patient groups in average age, disease duration and other variables.

The study was not designed to determine the underlying reasons for disparities in caregiver support, but as Dahodwala noted, "prior studies across multiple disabling conditions have found that women are less likely than men to have caregiver support."

Women on average live a few years longer than men, and so are more likely when elderly to be living alone rather than with a spouse/caregiver, she added. Moreover, women generally are much more likely than men to be caregivers, hinting that even married female patients whose husbands are still living are less likely to receive care from them, compared to vice-versa. Consistent with these possibilities, Dahodwala and colleagues found in the study that 84 percent of the male patients reported having their spouse as caregiver, compared to just 67 percent of the female patients. The female patients also were more than twice as likely (3.0 percent vs. 1.3 percent) to have a paid caregiver.

"Changes in health policy to better support older women with disabilities are urgently needed," Dahodwala concluded.

She and her colleagues are now following up with a study designed to identify more precisely the causes of sex disparities in caregiver support for Parkinson's patients, and to find ways to correct those disparities. "Our overall goal is to develop tailored interventions to support caregivers and, in particular, to design innovative programs to improve outcomes for women with Parkinson's disease," she said.

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The study co-authors were Krunal Shah, Ying He, Samuel S. Wu, Peter Schmidt, Fernando Cubillos, and Allison W. Willis.

The research was supported by the National Parkinson's Foundation (PF-UP201).

Penn Medicine is one of the world's leading academic medical centers, dedicated to the related missions of medical education, biomedical research, and excellence in patient care. Penn Medicine consists of the Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania (founded in 1765 as the nation's first medical school) and the University of Pennsylvania Health System, which together form a $6.7 billion enterprise.

The Perelman School of Medicine has been ranked among the top five medical schools in the United States for the past 20 years, according to U.S. News & World Report's survey of research-oriented medical schools. The School is consistently among the nation's top recipients of funding from the National Institutes of Health, with $392 million awarded in the 2016 fiscal year.

The University of Pennsylvania Health System's patient care facilities include: The Hospital of the University of Pennsylvania and Penn Presbyterian Medical Center -- which are recognized as one of the nation's top "Honor Roll" hospitals by U.S. News & World Report -- Chester County Hospital; Lancaster General Health; Penn Wissahickon Hospice; and Pennsylvania Hospital -- the nation's first hospital, founded in 1751. Additional affiliated inpatient care facilities and services throughout the Philadelphia region include Good Shepherd Penn Partners, a partnership between Good Shepherd Rehabilitation Network and Penn Medicine.

Penn Medicine is committed to improving lives and health through a variety of community-based programs and activities. In fiscal year 2016, Penn Medicine provided $393 million to benefit our community.

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