Perceptions of persons with multiple sclerosis on cognitive changes and their impact on daily life

Abstract

Purpose: Cognitive changes occur in over 50% of persons diagnosed with multiple sclerosis (MS). Although previous research has provided information of the nature and severity of cognitive changes among persons with MS, it has offered relatively limited insight on the impact of these changes on levels of functioning and disability. The purpose of this study was to explore the impact of cognitive changes on the lives of four individuals with MS with different life roles (worker, parent, retired older adult).

Method: Qualitative methodologies were used in the study and included multiple open-ended interviews with the study participants and the completion of Cognitive Experience Forms in between interviews. In addition, the Perceived Deficits Questionnaire and a demographics form were administered. Thematic analysis was used to analyse the study data.

Results: Participants described the types of cognitive changes they are experiencing and how these changes affect their ability to participate and engage in desired activities and maintain their primary roles. Participants also talked about how cognitive changes affect their quality of life.

Conclusions: This study points to the complexity of cognitive changes and highlight the importance of addressing these changes in rehabilitation.