Caregiving Challenges in Multiple Sclerosis and Alzheimer’s Disease: Results from a Caregiver Survey Study in Two Virtual Communities

Background: Being a caregiver for a family member with a chronic neurological disease is a role that is often simultaneously fulfilling and challenging. Information and support from healthcare providers (HCPs) and other sources can help ease these challenges, but these resources may not always be available or offered to caregivers. Two national nonprofits, Accelerated Cure Project for MS (ACP) and UsAgainstAlzheimer’s, are partnering on efforts to learn about and help address caregiver burdens in multiple sclerosis (MS) and Alzheimer’s Disease (AD). The organizations conducted a joint study to inform development of caregiving resources. Objectives: The objective of this study was to survey caregivers for people diagnosed with MS and/or AD about key stressors, access to caregiving resources, and interactions with healthcare providers. Methods: Two surveys were developed to explore caregiver burdens and interactions between caregivers and HCPs. The survey was sent to members of two virtual research communities, ACP’s iConquerMS network and UsAgainstAlzheimer’s A-LIST® registry. Results: 568 caregivers (73% AD, 21% MS, 7% other) participated in the survey about burdens, and 683 caregivers (69% AD, 23% MS, 8% other) participated in the survey about HCP relationships. Stressors that were indicated as being experienced on a frequent or constant basis included uncertainty about the future (54%), feeling stressed (46%), and not having time for oneself (42%). Only 22% of respondents indicated that they frequently/always had access to sources of help or support. 83% of MS caregivers and 69% of AD caregivers said they had not received any training to prepare them as a caregiver. Respondents also indicated that HCPs 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 don’t always ask the caregiver’s name or relationship to the patient. More than half of the caregivers who needed language accommodations at an HCP visit did not receive them. Conclusions: 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. Healthcare providers can help by inquiring about challenges faced by their patients’ caregivers and providing information and referrals to available resources.

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