The Challenges of Caregiving in Multiple Sclerosis, Alzheimer Disease

Rear view of woman caressing ill man in hospital ward
Researchers surveyed caregivers for people diagnosed with multiple sclerosis and/or Alzheimer disease about key stressors, access to caregiving resources, and their interactions with health care providers.
The following article is part of conference coverage from the 2021 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC), held October 25-28 2021, in Orlando, Florida. Neurology Advisor’s staff will be reporting breaking news associated with research conducted by leading experts in neurology. Check back for the latest news from the 2021 CMSC Annual Meeting.

Only 22% of caregiving family members of patients with multiple sclerosis (MS) or Alzheimer disease (AD) say they frequently or always have access to support, according to a study presented at the 2021 Annual Meeting of the Consortium of Multiple Sclerosis Centers (CMSC), held October 25-28, 2021 in Orlando, Florida.

Caregiving, especially for a family member with MS or AD can be simultaneously fulfilling and challenging. Health care providers and other sources can help caregivers by addressing common challenges that can lead to burnout by providing information and support. National nonprofits Accelerated Cure Project for MS (ACP) and UsAgainstAlzheimer’s are working together to learn about and help address caregiver burdens in MS and AD.

In a joint study, both organizations conducted 2 surveys of participants in ACP’s iConquerMS virtual research community and USAgainstAlzheimer’s A-LIST online registry. One survey analyzed caregivers’ predominant stressors (n=568; 73% AD, 21% MS, and 7% other caregivers), and the other assessed interactions with health care providers (n=683; 69% AD; 23% MS; and 8% other caregivers).

Self-reported stressors experienced frequently or constantly by caregivers included uncertainty about the future (54%), feeling stressed (46%), and not having time for oneself (42%). Seventy-eight percent of participants said they did not frequently or constantly have access to sources of support.

Lack of any training to prepare them as a caregiver was another challenge they reported (83% MS, 69% AD caregivers). The majority of caregivers who said they needed language accommodations at a visit with a health care provider did not receive them.

“Respondents also indicated that HCPs [health care providers] for the MS/AD patient rarely ask caregivers how they are coping and whether the cared-for person wants them in the examination room, and do not always ask the caregiver’s name or relationship to the patient,” the researchers stated. “MS and AD caregivers face a common set of burdens, and often must face these challenges without the benefit of formal training or reliable support.”

The researchers said health care providers can aid caregivers by asking about the challenges they experience and helping them locate information and resources.

Visit Neurology Advisor’s meetings section for complete coverage of CMSC 2021.



Schmidt H, Loud S, Frangiosa T, et al. Caregiving challenges in multiple sclerosis and Alzheimer’s disease: results from a caregiver survey study in two virtual communities. Presented at: CMSC 2021 Annual Meeting; October 25-28, 2021; Orlando, Florida. Abstract FAM03.