Grant-funded program assists care partners of people with progressed MS
April 07, 2020
By Leilana McKindra
Judy Markwardt-Oberheu knows caregiver burnout is real. As the executive director of the Multiple Sclerosis Achievement Center at the University of Kansas Medical Center in Kansas City, she sees firsthand the commitment and dedication of those who take care of loved ones with the chronic condition. It's a labor of love that can take a serious toll.
"The potential for burnout is extremely high among care partners of people with progressed MS," she said. "Caregiver burnout is among the top reasons someone ends up in long-term care."
Recognizing a critical need to help the helpers, Markwardt-Oberheu spearheaded the development and launch of Navigating Progressed MS. Free and open to the public, the program features a mix of education and activities designed to support care partners and, beyond that, delay the need for long-term care.
"Our goal is to provide the support care partners need to continue caring for loved ones in their homes," she said.
A one-of-a-kind program
MS is a central nervous system disorder that causes difficulty or inability to move the upper or lower extremities. It affects nearly 1 million people over the age of 18, according to the National Multiple Sclerosis Society.
The MS Achievement Center provides weekly physical and occupational therapy, cognitive stimulation activities and emotional wellness programming to its members, who pay a month fee to access those services. As one of only six of its kind in the nation, the center is already a unique resource for people living with the disease. Navigating Progressed MS only adds to that distinctiveness.
Designed to extend to the community the same education and support available to center members,
Navigating Progressed MS includes monthly practical skills workshops during which program participants interact with experts in a small group setting to learn and practice a variety of skills for managing life with MS. To date, workshop topics have included transfer techniques, communication strategies and estate planning for long-term financial security.
Another element of the program is the MS Care Partner Club, a monthly professionally led support group that delves into topics such as coping skills, stress reduction, depression management, communication skills and strategies for living with chronic disease. Also, beginning this spring, yoga and meditation will be offered to care partners weekly for eight weeks.
Navigating Progressed MS was created with a one-year, nonrenewable $25,000 grant from the Christopher and Dana Reeve Foundation, which helps fund research into spinal cord injury and advocates for people living with paralysis.
Although paralysis isn't typically considered part of MS, that is, in effect, what happens in many cases. In fact, according to the foundation, MS is the third-leading cause of paralysis, behind stroke and spinal cord injury. Currently, 65% of the MS Achievement Center's members use a wheelchair for mobility and all require some level of assistance with activities of daily living.
Filling a need
Navigating Progressed MS has been overwhelmingly well-received, with the care partner support group receiving especially high marks.
"While the response to the program overall has been very positive, the biggest reaction has been to the care partner support group," Markwardt-Oberheu said. "This is a huge gap in the community that has been needed for a really long time."
Ultimately, Navigating Progressed MS is expected to connect more than 200 people to necessary resources, knowledge and support.
"At the MS Achievement Center, we have successfully improved the quality of life for a segment of the population with MS, who are significantly underserved. We believe we can have equal success in supporting their care partners," Markwardt-Oberheu said. "By tapping into the expertise we have gained in working with individuals living with progressed MS, we can help care partners navigate this disease feeling supported and knowing where to go for help."
Since the existing grant for Navigating Progressed MS ends in June, the MS Achievement Center is already exploring other funding options to continue the program. In the meantime, Navigating Progressed MS is fulfilling an important need and positively impacting people with MS in the community.
"Our members would not be where they are without dedicated family members supporting them. Navigating Progressed MS complements everything we already do at the MS Achievement Center by supporting the people who support our members," Markwardt-Oberheu said. "It's the next logical step in enhancing quality of life for individuals with progressed MS."
The MS Achievement Center is part of the Department of Neurology at KU Medical Center. For more information about the Navigating Progressed MS program or how to become a member of the MS Achievement Center, visit the KU Center for MS Care website.