The new survey comes after the initial results from a Merck study showed that the highest number of MS care partners are aged 18-34, and that caregivers feel that outsiders really don’t understand the challenges of caring for someone with the disease. The study also showed that Americans have a higher percentage of care partners in the 18-34 age bracket than do Europeans, and that family members caring for a mother with MS generated the most social media chats related to MS caregiving.
Depression, anxiety, pain, insomnia and financial worries also burden young caregivers, the survey found.
“We know that for many, providing care and support for someone with MS can be an overwhelming prospect – and this is particularly true for young people in the prime of their lives, building careers or families for example,” said Rick Greene, executive advisor of the Washington-based IACO, in a news release.
“The findings from the research highlight the stark reality that faces many care partners in MS – anxiety, depression and pain being just a few,” Greene added. “Therefore, in collaboration with Merck, we are announcing a large-scale survey that will help us to build a comprehensive picture of the problems facing MS care partners and, importantly, look to develop solutions to address these needs.”
The new global survey to be fielded in the coming months aims to better understand these unmet needs with an ultimate goal to develop better resources and ways to help U.S., Canadian and European MS care partners. Results are expected in the next 12 months, along with support resources to help MS care partners.
Peer Baneke, CEO of the MS International Federation, noted that more than 2.3 million people have MS worldwide, including 350,000 to 500,000 in the United States alone. “MS affects their quality of life and that of caregivers, family and friends. This year’s World MS Day campaign encourages anyone affected by MS to share their tips for managing the challenges of #LifeWithMS,” he said.
Added Joseph Leveque, chief medical officer at EMD Serono, which is based in Rockland, Massachusetts: “We are committed to improving understanding of the needs of MS patients and care partners to help inform our programs and initiatives. The global survey will help us identify new ways to support those affected by MS, including the families and friends of those with this overwhelming condition.”