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Discrepancies Between Alzheimer’s Disease Patients’ and Caregivers’ Ratings About Patients’ Quality of Life: A 1-year Observation Study in Brazil

Sousa, Maria F.B., PhD*; Santos, Raquel L., PhD*; Simões, Pedro, PhD; Conde-Sala, Josep L., PhD; Dourado, Marcia C.N., PhD*

Alzheimer Disease & Associated Disorders: July-September 2018 - Volume 32 - Issue 3 - p 240–246
doi: 10.1097/WAD.0000000000000232
Original Articles

Objectives: We investigated the factors associated with discrepancies between patients’ and caregivers’ ratings about patients’ general quality of life (QoL) and about the domains of Quality of Life in Alzheimer’s disease (QoL-AD) Scale at baseline and 12 months.

Methods: This was a longitudinal study that comprised 114 outpatients with AD and their caregivers. Patients were assessed with the QoL-AD, Mini-mental State Examination, Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia, Cornell Scale for Depression, Functional Activities Questionnaire, and Neuropsychiatric Inventory, and Clinical Dementia Rating Scale. Caregivers answered the QoL-AD, Zarit Burden Interview and Sociodemographic Questionnaire.

Results: Linear regression analyses indicated that the factors associated with discrepancies of patients’ and caregivers’ ratings of patients’ QoL-AD were impaired awareness and caregiver burden at baseline and impaired awareness at 12 months. Moreover, the factor associated with discrepancies in the domain memory was impaired awareness and in the domain ability to do chores, impaired awareness and functional deficit.

Conclusions: The discrepancies between patients and caregivers were related to awareness and caregiver burden at baseline and to awareness at 12 months. These results raise questions regarding the subjective nature of QoL and the validity of patients’ evaluation of their own QoL.

*Center for Alzheimer’s Disease, Institute of Psychiatry, Universidade Federal do Rio de Janeiro, Rio de Janeiro

Department of Political Sociology, Universidade Federal de Santa Catarina, Florianópolis, Brazil

Faculty of Psychology, University of Barcelona, Barcelona, Spain

This research in Brazil was supported by the Conselho Nacional de Pesquisa (CNPq) and Fundação Carlos Chagas Filho de Apoio a Pesquisa do Estado do Rio de Janeiro (FAPERJ, grant number 201.777/2017). The research in Spain was supported by Spain’s Ministry of Economy and Competitiveness (reference PSI2010-19014) and formed part of the SIDEA research project (Seguimiento Integral de la Enfermedad de Alzheimer/Comprehensive Follow-Up of Alzheimer’s Disease, 2003 to 2012).

The authors declare no conflicts of interest.

Reprints: Maria F.B. Sousa, PhD, Center for Alzheimer’s Disease, Institute of Psychiatry of the Federal University of Rio de Janeiro Avenida Venceslau Brás, 71 fundos, Botafogo, Rio de Janeiro 22290-140, Brazil (e-mail: maria_fernandabs@yahoo.com.br).

Received June 1, 2017

Accepted November 11, 2017

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