Informal caregiving in multiple sclerosis patients: data from the Madrid demyelinating disease group study

Abstract

Purpose: To describe the profile of Multiple Sclerosis (MS) patient caregivers and assess their caregiving burden. Methods: A total of 91 MS patients, recruited from a Spanish longitudinal survey, and their corresponding caregivers were studied. Caregivers were administered a questionnaire that collected social and demographic data, and a generic caregiver burden interview (the Zarit scale). Furthermore, MS patients were administered a specific health-related quality of life (HRQoL) instrument (the modified Spanish version of the Functional Assessment of Multiple Sclerosis). Results: 24.5% of the sample required caregivers to perform activities of daily life. Caregiver profile was as follows: 67% female; mean age, 51.5 ± 14.1 years; and mean daily time devoted to care, 11.5 ± 8.2 h. Most caregivers had some type of support, 67% informal and 31.9% formal. The amount of time spent in caring for relatives was the main item determining the burden of MS-patient caregivers. Moreover, MS patient’s HRQoL showed a moderate inverse correlation with caregiver burden. Conclusions: In contrast to previous studies, most Spanish MS patient caregivers are female, and there is a considerable percentage of parent caregivers. A greater degree of formal support and an improvement in MS patients' HRQoL may serve to reduce caregiver burden.