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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 ,
Isabel Carmo ,
Joaquim Alves da Silva ,
Ana L. Papoila ,
Raimundo Mateos  and
Steven H. Zarit
Manuel Gonçalves-Pereira*
Affiliation:
CEDOC, Department of Mental Health, Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, Portugal
Isabel Carmo
Affiliation:
Neurology Service, Hospital Egas Moniz, CHLO, Portugal
Joaquim Alves da Silva
Affiliation:
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
Affiliation:
Department of Biostatistics and Informatics, Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Lisbon, and CEAUL, Portugal
Raimundo Mateos
Affiliation:
Department of Psychiatry (USC) and CHUS University Hospital, Santiago de Compostela, Spain
Steven H. Zarit
Affiliation:
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: gpereira.sm@fcm.unl.pt.
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Abstract

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.

Keywords

Alzheimer diseasecarerscaregiverspsychological stresshealth knowledge
Type
Research Article
Information
International Psychogeriatrics , Volume 22 , Issue 2 , March 2010 , pp. 270 - 280
Copyright
Copyright © International Psychogeriatric Association 2009

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References

Boerner, K., Schulz, R. and Horowitz, A. (2004). Positive aspects of caregiving and adaptation to bereavement. Psychology and Aging, 19, 668–675.CrossRefGoogle ScholarPubMed
Brito, L. (2002). A saúde mental dos prestadores de cuidados a familiares idosos. Coimbra: Quarteto.Google Scholar
Brodaty, H. (2007). Meaning and measurement of caregiver outcomes. International Psychogeriatrics, 19, 363–381. doi:10.1017/S1041610207005182.Google Scholar
Campbell, P. et al. (2008). Determinants of burden in those who care for someone with dementia. International Journal of Geriatric Psychiatry, 23, 1078–1085. doi: 10.1002/gps.2071.CrossRefGoogle ScholarPubMed
Davis, K. L. et al. (1997). The Caregiver Activity Survey (CAS): development and validation of a new measure for caregivers of persons with Alzheimer's disease. International Journal of Geriatric Psychiatry, 12, 978–988. doi: 0.1002/(SICI)1099-1166(199710)12:10<978::AID-GPS659>3.0.CO;2–1.3.0.CO;2-1>CrossRefGoogle ScholarPubMed
Fernandes, L. et al. (2009). Validation study of the Camberwell Assessment of Need for the Elderly (CANE) in Portugal. International Psychogeriatrics, 21, 94–102. doi:10.1017/S1041610208008041CrossRefGoogle ScholarPubMed
Figueiredo, D. and Sousa, L. (2008). Perceived health status and burden in family carers of demented and non-demented dependent elderly. Revista Portuguesa de Saúde Pública, 26, 15–24.Google Scholar
GEECD (2008). Escalas e Testes na Demência. Lisbon: Grupo de Estudos de Envelhecimento Cerebral e Demências.Google Scholar
Goldberg, D. and Williams, P. (1988). A User's Guide to the General Health Questionnaire. Windsor: NFER-NELSON.Google Scholar
Goldberg, D. P. et al. (1997). The validity of two versions of the GHQ in the WHO study of mental illness in general health care. Psychological Medicine, 27, 191–197.CrossRefGoogle ScholarPubMed
Gonçalves Pereira, M., Papoila, A. and Mateos, R. (2008). Knowledge about dementia, psychological distress and caregiving experiences in families of elderly demented people. Available at: http://www.psiquiatria.com/psiquiatria/revista/217/35053/?++interactivo (last accessed: 23 April 2009).Google Scholar
Graham, C., Ballard, C. and Sham, P. (1997a). Carers’ knowledge of dementia and their expressed concerns. International Journal of Geriatric Psychiatry, 12, 470–473. doi: 10.1002/(SICI)1099-1166(199704)12:4<470::AID-GPS503>3.0.CO;2-N.3.0.CO;2-N>CrossRefGoogle ScholarPubMed
Graham, C, Ballard, C. and Sham, P. (1997b). Carers’ knowledge of dementia, their coping strategies and morbidity. International Journal of Geriatric Psychiatry, 12, 931–936. doi: 10.1002/(SICI)1099-1166(199709)12:9<931::AID-GPS666>3.0.CO;2–8.Google Scholar
Hébert, R., Bravo, G. and Préville, M. (2000). Reliability, validity and reference values of the Zarit Burden Interview for assessing informal caregivers of community-dwelling older persons with dementia. Canadian Journal on Aging, 19, 494–507.CrossRefGoogle Scholar
López, M. P. S. and Dresch, V. (2008). The 12-item General Health Questionnaire (GHQ-12): Reliability, external validity and factor structure in the Spanish population. Psicothema, 20, 839–843.Google Scholar
McNaughton, M., Patterson, T., Smith, T. and Grant, I. (1995). The relationship among stress, depression, locus of control, irrational belief and health in Alzheimer's disease caregivers. Journal of Nervous and Mental Disease, 183, 78–85.Google Scholar
Molloy, D. W., McIllroy, W. E., Guyatt, G. H. and Lever, J. A. (1991). Validity and reliability of the Dysfunctional Behaviour Rating Instrument. Acta Psychiatrica Scandinavia, 84, 103–106. doi: 10.1111/j.1600–0447.1991.tb01429.x.Google Scholar
Molyneux, C. G., McCarthy, G. M., McEniff, S., Cryan, M. and Conroy, R. M. (2008). Prevalence and predictors of carer burden and depression in carers of patients referred to an old age psychiatric service. International Psychogeriatrics, 20, 1193–1202. doi:10.1017/S1041610208007515.CrossRefGoogle Scholar
Nolan, M., Keady, J. and Grant, G. (1995). CAMI – A basis for assessment and support with family carers. British Journal of Adult/Elderly Care Nursing, 4, 822–826.CrossRefGoogle Scholar
Orrell, M. and Hancock, G. (2004). CANE, Camberwell Assessment of Need for the Elderly. London: Gaskell.Google Scholar
Proctor, R., Martin, C. and Hewison, J. (2002). When a little knowledge is a dangerous thing . . .: a study of carer’ knowledge about dementia, preferred coping style and psychological distress. International Journal of Geriatric Psychiatry, 17, 1133–1139. doi:10.1002/gps.762.CrossRefGoogle Scholar
Sequeira, C. (2007). Cuidar de idosos dependentes. Coimbra: Quarteto.Google Scholar
Selwood, A., Johston, K., Katona, C., Lyketsos, C. and Livingston, G. (2007). Systematic review of the effect of psychological interventions on family caregivers of people with dementia. Journal of Affective Disorders, 101, 75–89. doi:10.1016/j.jad.2006.10.025.CrossRefGoogle ScholarPubMed
Shaji, K. S., Smitha, K., Praveen Lal, K. and Prince, M. (2003). Caregivers of people with Alzheimer's disease: a qualitative study from the Indian 10/66 Dementia Research Network. International Journal of Geriatric Psychiatry, 18, 1–6. doi: 10.1002/gps.649.Google Scholar
Tarlow, B. J., Wisniewski, S. R., Belle, S. H., Rubert, M., Ory, M.G. and Gallagher-Thomson, D. (2004). Positive aspects of caregiving: contribution of the REACH project to the development of new measures for Alzheimer's caregiving. Research on Aging, 26, 429–453. doi: 10.1177/0164027504264493.CrossRefGoogle Scholar
Thompson, C. A., Spilsbury, K., Hall, J., Birks, Y., Barnes, C. and Adamson, A. (2007). Systematic review of information and support interventions for caregivers of people with dementia. BMC Geriatrics, 7, 18. doi:10.1186/1471-2318-7-18.CrossRefGoogle ScholarPubMed
Werner, P. (2001). Correlates of family caregivers' knowledge about Alzheimer's disease. International Journal of Geriatric Psychiatry, 16, 32–38. doi: 10.1002/1099–1166(200101)16:1<32::AID-GPS268>3.0.CO;2–2.3.0.CO;2-2>CrossRefGoogle ScholarPubMed
Werner, P. (2003). Knowledge about symptoms of Alzheimer's disease: correlates and relationship to help-seeking behaviour. International Journal of Geriatric Psychiatry, 18, 1029–1036. doi:10.1002/gps.1011.CrossRefGoogle Scholar
Zarit, S. H., Reever, K. E. and Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feeling of burden. The Gerontologist, 20, 649–655. doi:10.1093/geront/20.6.649.CrossRefGoogle Scholar
Zarit, S. H., Todd, P.A. and Zarit, J.M. (1986). Subjective burden of husbands and wives as caregivers: a longitudinal study. The Gerontologist, 20, 260–266. doi:10.1093/geront/26.3.260.CrossRefGoogle Scholar