Instruments for evaluating the burden of family caregivers of persons with dementia

Abstract

The aging population in developing countries is a reality which has given rise to degenerative diseases, among them dementia. The changes undergone during dementia cause a loss of functions which makes the person affected more dependent on others in performing their activities, and therefore these activities are taken over by the caregiver. The process of becoming a caretaker often means the appearance of overload, referring to the perception that the caregiver has of the influence that caring for that person has on their health, social and personal life and economy. Quantification of the risk of exhaustion should be done using a common procedure. Therefore, this study was intended to review instruments for evaluating the burden on family caregivers of persons with dementia. The method used was systematic review of the Lilacs, ProQuest, PsycArticles and Dialnet Plus databases, after which the primary sources of the instruments used in those studies were found. Six different versions of four different instruments were found in this way. In 34 of 42 studies, the burden evaluation instrument used was the Zarit scale (Zarit Caregiver Burden Interview) or a version or adaptation of it. These results show that the preference for this scale for evaluating burden in caregivers is continuous and without variation since the nineties.

El cuidado de enfermos con demencia: la experiencia de familiares cuidadores en Santa Rosa de Osos, Colombia

“…Pero también se confrontan con la imposibilidad de negar la pérdida, tanto del enfermo como del vínculo, aunque la cotidianidad les muestre que su familiar ya no es el mismo y que, a pesar de su presencia física, su cuerpo, su identidad, los roles y el lazo que los unían han cambiado rotundamente. Como respuesta a esta ambigüedad, los estudios de Córdoba y Poches (2013) y Martos, et al (2015) encuentran que los cuidadores viven permanentes fluctuaciones emocionales y comportamentales en las que pasan del enojo a la alegría, de la impotencia a la eficacia en el cuidado, de la angustia a la calma, de la indecisión a la seguridad en su quehacer. Todas estas fluctuaciones entre la negación y la aceptación de la pérdida, con sus consecuentes oscilaciones anímicas y comportamentales, adquiere el ritmo impreciso y discordante propio de esta enfermedad que suele provocar en el cuidador una experiencia con gran sobrecarga física y afectiva (Moreno et al, 2016;Flores, Rivas y Segel, 2012).…”