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Caregiving experiences and knowledge about dementia in Portuguese clinical outpatient settings

Published online by Cambridge University Press:  06 November 2009

Manuel Gonçalves-Pereira*
CEDOC, Department of Mental Health, Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal
Isabel Carmo
Neurology Service, Hospital Egas Moniz, CHLO, Portugal
Joaquim Alves da Silva
CEDOC, Department of Mental Health, Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal Department of Psychiatry and Mental Health, Hospital San Francisco Xavier, CHLO, Portugal
Ana L. Papoila
Department of Biostatistics and Informatics, Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, and CEAUL, Portugal
Raimundo Mateos
Department of Psychiatry (USC) and CHUS University Hospital, Santiago de Compostela, Spain
Steven H. Zarit
Department of Human Development and Family Studies, Penn State University, Pennsylvania, U.S.A.
Correspondence should be addressed to: Manuel Gonçalves-Pereira, Departamento de Saúde Mental, Faculdade de Ciências Médicas, UNL, Campo dos Mártires da Pátria, 130; 1169-056 Lisboa, Portugal. Phone: +351-218803046; Fax: +351-218803079. Email address:


Background: Important public health and clinical issues remain unanswered concerning disease-related knowledge and caregiving experiences in dementia. The aim of this study is to describe these dimensions in Portuguese clinical settings and analyze the link between knowledge and burden, and also between knowledge and positive caregiving experiences.

Methods: We studied a non-randomized sample of 116 caregivers of outpatients with ICD10-DCR diagnosis of dementia. Comprehensive assessments included Dementia Knowledge Questionnaire (DKQ), Zarit Burden Interview (ZBI), Caregiving Activity Survey (CAS), Positive Aspects of Caregiving (PAC) and General Health Questionnaire-12 (GHQ). Portuguese translations for DKQ, ZBI and PAC scales had been developed; validity aspects were documented, as well as test-retest reliability coefficients for ZBI (ICC = 0.93) and PAC (ICC = 0.85).

Results: Most caregivers were close relatives, female and living with the patient. Although positive aspects of care were reported, burden and distress levels were moderate to high. Knowledge needs were not striking. Distress was moderately correlated to burden, but no associations were found between caregivers' knowledge and ZBI, PAC or GHQ. DKQ scores did not predict PAC nor ZBI scores. A relationship was found between ZBI, as dependent variable, and PAC, GHQ and CAS.

Conclusions: A large proportion of caregivers in this sample, albeit informed about dementia, were at risk of high burden and distress. Knowledge about dementia may not be protective of burden per se, nor did it influence positive aspects of caregiving.

Research Article
Copyright © International Psychogeriatric Association 2009

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