Most people who care for multiple sclerosis (MS) patients are happy to be caregivers, but they admit that their own emotional and physical health — as well as their financial security — suffer as a result.
That’s according to the online vsMS Survey, supported by Sanofi Genzyme, which assesses the physical and emotional impact of MS on patients and caregivers. Its findings were presented at the Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC), held May 24-27 in New Orleans.
In all, 580 caregivers from seven countries completed the 20-minute online survey. Of the total, 48.1 percent were married to patients with MS; 61.1 percent reported being caregivers for more than five years, and nearly 52 percent for more than two years.
Just over half said they spent more than 20 hours per week, and 20.7 percent more than 40 hours, helping the person for whom they care.
Caregivers said they were inspired by the person they care for (89.5%), happy to be part of the patient’s care (94.3%), proud of being a caregiver (92.4%), and relieved to see the person with MS benefitting from their care (93.3%). However, when MS was initially diagnosed, 53.8% of the caregivers did not expect that person to need daily care, and 43.1% worried about financial security.
The survey also revealed that caregivers help MS patients specifically by managing household chores (92.6%), running errands (92.9%), going to the doctor (86%), administering medication (61.7%), and providing emotional support (97.8%).
However, nearly half (46.7%) of those surveyed said their lives had significantly changed since becoming a caregiver, with 44.6% saying that taking care of an MS patient was the greatest challenge of their lives.
Indeed, certain caregivers felt depressed (44.7%), physically tired (50.3%), less ambitious than before caregiving (33.4%), and frustrated that people close to them don’t understand the challenges they face (43.8%). Just over 36% said trying to balance caring with other responsibilities stresses them, and nearly 50% said they have no personal time.
The study also showed that nearly 88% of responders worry about the increasing disability in the MS patient they care for, but 54.8% don’t talk about it for fear of upsetting that patient. Some 57.4% of caregivers also said they were worried about their ability to provide care, while 89.8% said they wished they could do more.