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. 2013 Apr 3;33(2):61–67. [Article in Spanish] doi: 10.1016/S0212-6567(04)79352-X

Perfil y sobrecarga de los cuidadores de pacientes con demencia incluidos en el programa ALOIS

Profile and burden of care in caregivers of patients with dementia included in the alois program

A Alonso Babarro a,*, A Garrido Barral a, A Díaz Ponce b, R Casquero Ruiz c, M Riera Pastor c
PMCID: PMC7668908  PMID: 14967121

Abstract

Aim

To study the profile and burden of care in carers of patients with dementia who participated in the ALOIS program. A second objective was to evaluate caregiver satisfaction with the intervention, and changes in caregiver burden after participation in the program

Design

Descriptive study of a specific intervention with no control group. Setting. Primary care centers. Participants. Principal caregivers of patients with dementia

Interventions

Group education sessions led by multidisciplinary teams comprising physicians, nurses and social workers

Measures

Caregiver profile; mean caregiver burden before and 3 months after the intervention (Caregiver Burden Interview, Zarit); caregivers' evaluation of the program

Results

Participants N=245. Profile (N=173): women (83%), mean age 54.6 years (range, 26-83 years), married (82.5%), no formal education or primary school only (70.2%), housewife (54.3%), patient's daughter (58.5%). More than 60% of the caregivers received informal help, and fewer than 5% received formal help. 72.5% of the caregivers were considered overburdened at the start of the intervention, and the burden was greater in older caregivers. No differences were detected in caregiver relation to the patient, marital status or employment status of the caregiver. Participants rated the program very highly, emphasizing the opportunity to share their experiences with other caregivers and to obtain knowledge and skills that helped them provide better care. Pre- and postintervention burden of care was compared in 68 participants (54.76±15.16 points vs 53.02±12.55), and no statistically significant difference was found

Conclusions

The burden of care was high among caregivers, and increased as caregivers aged. Caregivers considered participation in the program to be highly useful. Care for caregivers should form part of care provided for patients with dementia

Key words: Caregiver, Dementia, Health education

El diseño del programa ALOIS, así como los resultados del estudio piloto y los resultados parciales de la intervención educativa, han sido presentados, respectivamente, en el IX Congreso de la SMMFYC celebrado en Madrid en 1999, en la II Conferencia Nacional de Alzheimer que tuvo lugar en Bilbao en 1999, y en la III Conferencia Nacional Alzheimer (18th International Conference of Alzheimer's Disease) que se celebró en Barcelona en 2002

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