The CUIDEME Study: Determinants of Burden in Chilean Primary Caregivers of Patients with Dementia

Article type: Research Article

Authors: Slachevsky, Andrea^{a; b; c; d; *} | Budinich, Marilu^e | Miranda-Castillo, Claudia^f | Núñez-Huasaf, Javier^{a; c} | Silva, Jaime R.^g | Muñoz-Neira, Carlos^a | Gloger, Sergio^h | Jimenez, Oscarⁱ | Martorell, Bernardo^j | Delgado, Carolina^k

Affiliations: [a] Unidad de Neurología Cognitiva y Demencias, Servicio de Neurología, Hospital del Salvador, Santiago, Región Metropolitana, Chile | [b] Physiopathology Program, ICBM and Neurological Sciences Department, Faculty of Medicine, Universidad de Chile, Chile | [c] Centro de Investigación Avanzada en Educación, Universidad de Chile, Chile | [d] Servicio de Neurología, Clínica Alemana, Santiago, Chile | [e] Servicio de Geriatría, Hospital Clínico Universidad de Chile, Santiago, Chile | [f] Escuela de Psicología, Facultad de Medicina, Universidad de Valparaíso, Valparaíso, Chile | [g] Departamento de Salud Mental y Psiquiatría, Facultad de Medicina, Universidad de La Frontera, Chile | [h] Psicomédica, Santiago, Chile | [i] Universidad de la Frontera, Temuco, Chile | [j] Escuela de Salud Pública, Universidad de Chile, Santiago, Chile | [k] Unidad de Neurología Cognitiva y Demencias, Departamento de Neurología, Hospital Clínico Universidad de Chile, Santiago, Chile

Correspondence: [*] Correspondence to: Andrea Slachevsky, Centre of Advanced Research in Education, Universidad de Chile, Periodista José Carrasco Tapia N° 75, Santiago, Chile. Tel.: +56 9 89008262; Fax: +56 2 5754021; E-mail: [email protected].

Abstract: Background:Caring for a person with dementia is associated with well-documented increases in burden and distress and decreases in mental health and wellbeing. Studies assessing burden in caregivers of patients with dementia and its determinants are scarce in Latin America. Objective:The main objective of this study was to assess the extent and the determinants of burden in informal primary caregivers of patients with dementia in Chile. Methods:A descriptive study was conducted using clinically validated scales to assess dementia characteristics and to measure caregiver variables. Family socio-demographic characteristics and functional status, patient functional dependency and behavioral disturbances, and caregiver psychiatric morbidity were analyzed as independent variables to determine caregiver burden. Results:Two hundred and ninety-two informal caregivers were included. There were more female (80%) than male caregivers, consisting mainly of daughters and spouses of the patients. Severe burden was reported in 63% of the caregivers, and 47% exhibited psychiatric morbidity. Burden was associated with caregiver psychiatric distress, family dysfunction, severity of neuropsychiatric symptoms and functional disability, but neither patient age, gender, nor socioeconomic status impacted burden. Conclusion:Our results underscore the importance of assessing the consequences of dementia in both caregivers and patients in order to evaluate the real biopsychosocial impact of dementia, as well as the importance of planning appropriate and effective public health interventions in Latin American countries. In addition, interventions targeting caregiver psychological distress, caregiver familial dysfunction, patient neuropsychiatric disorders, and patient functional disability could potentially diminish caregiver burden.

Keywords: Alzheimer's disease, caregiver, dementia, dependency, dependency burden, general health questionnaire, mental health, neuropsychiatric inventory, psychological distress, Zarit burden interview

DOI: 10.3233/JAD-122086

Journal: Journal of Alzheimer's Disease, vol. 35, no. 2, pp. 297-306, 2013