Caregiver involvement in MS: Duty or disruption?

The uncertainties and challenges of MS affect not only people living with the condition, but also their families and caregivers. Families and caregivers undoubtedly need to be involved in certain decisions involving MS care, and can have both a positive and negative influence. This article, first published in November 2021, summarizes a debate held at the European Charcot Foundation Conference in November 2019, between members of the MS in the 21^st Century Advisory Group and an audience of healthcare professionals (HCPs), people living with MS (PwMS) and caregivers.

The panel discussed the involvement of families and caregivers during consultations between PwMS and their HCPs, and in overall MS management, highlighting both the benefits and the difficulties of their involvement and the impact this has on the overall management of PwMS care. The panel also suggested ways in which the participation of families/caregivers in MS care can be improved, in the PwMS’ best interests.