Parkinson’s caregivers are under strain, need more support: Report
Average caregiver spends more than 30 hours a week providing care
The average caregiver for someone with Parkinson’s disease spends more than 30 hours per week doing unpaid work to provide care, and many report substantial emotional and physical strain.
That’s according to a new report from the National Alliance for Caregiving (NAC), with support from The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and Arcadia University, in Pennsylvania.
“This new research coupled with powerful caregiver stories, shines a light on the important role that family caregivers play in supporting people living with Parkinson’s disease,” Jason Resendez, president and CEO of the NAC, said in a press release. “Parkinson’s caregivers are navigating one of the most complex care journeys imaginable, often at a great personal cost, yet they do so without the support they need and the recognition they deserve.”
The symptoms of Parkinson’s disease can make day-to-day activities difficult or impossible to do independently, so many people with Parkinson’s rely on a caregiver to help them. Often the caregiver is a friend or family member, such as a spouse or child.
In this report, researchers analyzed data from a survey of 72 Parkinson’s caregivers, as well as interviews from a handful of caregivers.
Report shines ‘critical spotlight’ on experiences of caregivers
“This report shines a critical spotlight on the experiences of caregivers, offering an evidence-based roadmap to better equip, acknowledge, and empower them as essential partners in Parkinson’s care,” said Margaret Longacre, a professor of public health and dean of the College of Health Sciences at Arcadia University.
The average age among the caregivers was 61, and most identified as female. Most caregivers had been providing care for more than a year, with more than a third having acted as caregivers for five years or more. Most of the caregivers were married, with nearly 40% providing care for their spouse. Nearly two-thirds of the caregivers said they felt they didn’t have a choice in giving care.
More than 60% of the caregivers said they needed to give help with getting dressed and getting in and out of bed or chairs, and nearly half of the caregivers said they needed to give help with using the toilet or bathing. Most caregivers also reported helping with housework and finances, preparing meals, and giving medications.
The report notes that these rates are markedly higher among caregivers for Parkinson’s than for other broader conditions. Overall, caregivers were spending on average 31 hours per week doing unpaid labor to help their charge.
“These data suggest that caregivers provide substantial time commitment and extensive care needs,” the report states.
Caregiving has substantial impact on employment
Half of the caregivers reported they were working while acting as caregiver, spending an average of 37 hours per week at their jobs. But caregiving had a substantial impact on employment, with many caregivers saying they missed work or had to cut back to meet their caregiving responsibilities. Most also said they’d had to dip into savings to help manage financial obligations.
Nearly half of the Parkinson’s caregivers reported high emotional strain, and nearly a third reported substantial physical strain — rates that are markedly higher than among caregivers of people with other conditions, the report notes.
Despite the substantial burden of caregiving, caregivers often reported lacking resources, with many citing a need for additional resources to help manage their own health and the safety of their charge. The report concludes with recommendations to provide more support to Parkinson’s caregivers.
“We are proud to partner with NAC to underscore the urgent need for greater support, resources and recognition of the indispensable partnership that caregivers provide for people living with Parkinson’s,” said Dustin Watson, vice president and head of federal government relations at MJFF. “This research also builds a strong case for increased study of the caregiver role, as well as meaningful policy changes — like caregiver tax credits and better access to home and community-based services for patients — which we encourage our nation’s elected officials to prioritize.”
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