MS caregivers play an indispensable role in their loved ones’ lives. ACP recently partnered with UsAgainstAlzheimer’s on two surveys to learn more about the challenges that caregivers face and their relationships with healthcare providers.
- The top three stressors experienced by caregivers are uncertainty about the future, stress and not having time for oneself.
- Caregivers shared helpful ways of dealing with these issues, including exercise, massage, listening to music, or taking their loved one for a ride in the car.
- 77.5% of caregivers do not have sufficient access to the help and support that they need. 72% have not received training or information to better prepare them for their role.
- Almost all caregivers responding to the survey had accompanied their loved one to a doctor’s visit. For the most part, healthcare providers (HCPs) are respectful, make eye contact and give clear information in understandable language.
- According to the survey, most patients and caregivers don’t have a language barrier. However, more than half who need language accommodations don’t receive them.
- HCPs rarely discuss mood changes or treatment effects with caregivers, ask caregivers how they are coping or provide information about research studies.
Want to be part of the movement to put patients and their caregivers at the center of MS Research?
Caregivers play a pivotal role in MS research. ACP will be more intentionally expanding iConquerMS enrollment to include care partners. Through this effort, caregivers will be able to participate in iConquerMS both as an observer and partner to the person living with MS, and as a person with their own needs and priorities. To stay up to date on ACP’s caregiver initiatives, enter your contact information here and join iConquerMS today!
