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

December 1, 2017, Perelman School of Medicine at the University of Pennsylvania

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 probably derives in part from the fact that 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 . 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 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 support for Parkinson's patients, and to find ways to correct those disparities. "Our overall goal is to develop tailored interventions to caregivers and, in particular, to design innovative programs to improve outcomes for women with Parkinson's disease," she said.

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