Impact of Cognitive Impairment on Adults with Multiple Sclerosis and Their Family Caregivers

Abstract

Background: Cognitive impairment is a prominent feature of multiple sclerosis (MS). However, the impact that cognitive symptoms have on daily life, and the effect this has on persons with MS and their relationships with spouses/partners, remains unclear. This qualitative study sought information on the nature of cognitive impairments experienced and the impact of cognitive impairments on the daily lives of adults with MS and their partners to gain further insights into how health care professionals can best support families.

Methods: Fifteen persons with MS and their spouses/partners participated in separate semistructured telephone interviews.

Results: Six themes and several subthemes were identified: the social impact of cognitive impairments in MS, changes to daily living, relationship quality, communication, ways of coping with MS, and the desire for help in managing MS.

Conclusions: These results identified types of support that couples needed and wanted; ways that MS affects couples' social lives; that there are difficulties negotiating changes in roles due to cognitive challenges; that there are difficulties coping with the impact of cognitive challenges on daily living; that couples often have difficulty communicating about the impact of cognitive changes on daily living and related issues, which also contributes to relationship strain; and finally, that most participants felt that they did not understand enough about the cognitive symptoms of MS. We outline key areas to address these identified needs.

Keywords: Caregiver; Cognitive impairment; Multiple sclerosis (MS); Relationship; Well-being.