New funding, goal to empower Parkinson’s caregivers
The success of East Carolina University’s Listen, Breathe, Move study is continuing, specifically to benefit caregivers of adults with Parkinson’s Disease in eastern North Carolina.
ECU’s program, highlighted by a unique mix of music therapy and yoga complementing each other, was one of the selections for funding by the Parkinson’s Foundation’s community programs initiative that supports programs in 38 states. These grants range from $10,000 to $25,000 each with an aim to positively impact people in each community.
Dr. Bhibha Das speaks during the university R1 celebration in April as ECU joined the top 5% of U.S. universities that demonstrate the highest levels of research activity, as designated by Carnegie Classifications of Institutions of Higher Education and the American Council on Education.
(ECU Photo by Rhett Butler)
“In rural communities like eastern North Carolina, caregivers of individuals with Parkinson’s Disease may often face the caregiving journey alone, with limited access to support such health promoting resources for themselves,” said Dr. Bhibha Das, associate professor in the Department of Kinesiology who teams with Dr. Adrienne Steiner-Brett of the School of Music to lead the project. “By investing in caregiver health and well-being through an integrated music therapy and mindful movement virtual program, we hope to empower those caregivers to take charge of their own well-being while simultaneously potentially improving the quality of life for those living with Parkinson’s across rural communities in eastern North Carolina.”
Dr. Adrienne C. Steiner-Brett is an assistant professor of music therapy at ECU.
Steiner-Brett added: “Using music therapeutically in the context of this program allows for a holistic focus on the health and well-being of caregivers. Caregiving is a beautiful and needed thing, but can be stressful, overwhelming and emotional. By providing opportunities for our participants to engage in potentially new modalities and learn skills, this program focuses on encouraging caregivers to use program techniques learned in their daily life to mitigate the burden.”
A new goal is to determine the effectiveness of a virtual music therapy and mindful movement program for caregivers of adults with Parkinson’s Disease in the region.
Das and Steiner-Brett initiated a one-time pilot project for caregivers in the summer of 2023, and received a $10,000 2024-25 Research and Creative Activity Award from the College of Fine Arts and Communication. They also were awarded an ECU Research, Economic Development and Engagement Sponsored Activities and Research Catalyst award, extending the delivery of the intervention to asynchronous.
They have continued to implement and emphasize student success by working with undergraduate student research assistants.
Participants in the prior program reported: “Something really that fits into the daily caregiving role of caring for family and working part time,” and “These programs give you an opportunity to remind yourself that it’s OK for me to take time for myself. I’m important, too, in this role and I must be better physically, mentally, emotionally, so I can be better caregiver.”
Parkinson’s disease is the second-most common neurodegenerative disease in the U.S. Since 2011, the Parkinson’s Foundation has invested more than $12.7 million in 969 community-based programs.
“For the more than 1 million people living with PD in the U.S., access to local programs like support groups, exercise classes or educational courses is truly life-changing,” the Parkinson’s Foundation president and CEO John L. Lehr said in the foundation’s release announcing the recipients of more than $1 million in community grants. “Investments in nation-wide community grant funding represents the foundation’s ongoing dedication to improving the lives of our Parkinson’s community across the country.”
Department of Kinesiology chair Dr. Tony Kulas highlighted the multiple layers in impact made possible by Das, Steiner-Brett and students.
“This award not only contributes to ECU’s mission priority for regional transformation, but it also contributes to student success as it will provide students with rich and impactful community-based research experiences,” Kulas said.