Quality of Life in Alzheimer Disease A Comparison of Patients' and Caregivers' Points of View

被引:44
作者
Zucchella, Chiara [1 ,2 ]
Bartolo, Michelangelo [3 ]
Bernini, Sara [1 ]
Picascia, Marta [1 ]
Sinforiani, Elena [1 ]
机构
[1] IRCCS Neurol Natl Inst C Mondino Fdn, Alzheimer Assessment Unit, Lab Neuropsychol, I-27100 Pavia, Italy
[2] Univ Pavia, Dept Publ Hlth Neurosci Expt & Forens Med, I-27100 Pavia, Italy
[3] IRCCS NEUROMED, Neurorehabil Unit, Pozzilli, Isernia, Italy
关键词
Alzheimer disease; quality of life; ICF; caregivers; proxies; DEMENTIA PATIENTS; PEOPLE; BURDEN; PERSPECTIVES; INVENTORY; SYMPTOMS; QOL;
D O I
10.1097/WAD.0000000000000050
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
Unlike in other chronic diseases, the Quality of Life (QoL) of patients affected by Alzheimer Disease (AD) has not been well established, primarily because of the difficulties stemming from the study of patients with cognitive disorders. Because no cure is currently available for AD, the optimization of QoL represents the best possible outcome attainable in all stages of disease, making QoL assessment mandatory. This study identified variables related to patients' QoL and examined the agreement between patients' and caregivers' QoL ratings. A total of 135 dyads (patient and principal caregiver) were enrolled in the study. Patients' QoL evaluations showed a negative relationship with depressive mood and a positive relationship with Activities of Daily Living (ADL), whereas caregivers' QoL ratings showed a negative relationship with patients' depressive mood and behavioral disturbances. Caregivers tended to underestimate patients' QoL compared with the patients' own self-evaluations, with patients' dependency in performing ADL and behavioral disorders as well as caregivers' burdens and depression being the main factors associated with the discrepancy in these evaluations. These findings suggest that the use of proxies as a substitute for the self-report of QoL data should be treated with caution, always accounting for the presence of potential bias.
引用
收藏
页码:50 / 54
页数:5
相关论文
共 39 条
[1]   The disability paradox: high quality of life against all odds [J].
Albrecht, GL ;
Devlieger, PJ .
SOCIAL SCIENCE & MEDICINE, 1999, 48 (08) :977-988
[2]   Ability to perform activities of daily living is the main factor affecting quality of life in patients with dementia [J].
Andersen C.K. ;
Wittrup-Jensen K.U. ;
Lolk A. ;
Andersen K. ;
Kragh-Sørensen P. .
Health and Quality of Life Outcomes, 2 (1)
[3]   Quality of life in dementia: a study on proxy bias [J].
Arons, Alexander M. M. ;
Krabbe, Paul F. M. ;
Scholzel-Dorenbos, Carla J. M. ;
van der Wilt, Gert Jan ;
Rikkert, Marcel G. M. Olde .
BMC MEDICAL RESEARCH METHODOLOGY, 2013, 13
[4]   What do we know about quality of life in dementia? A review of the emerging evidence on the predictive and explanatory value of disease specific measures of health related quality of life in people with dementia [J].
Banerjee, Sube ;
Samsi, Kritika ;
Petrie, Charles D. ;
Alvir, Jose ;
Treglia, Michael ;
Schwam, Ellias M. ;
del Valle, Megan .
INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY, 2009, 24 (01) :15-24
[5]   CAREGIVER BURDEN AND NEEDS IN COMMUNITY NEUROREHABILITATION [J].
Bartolo, Michelangelo ;
De Luca, Danila ;
Serrao, Mariano ;
Sinforiani, Elena ;
Zucchella, Chiara ;
Sandrini, Giorgio .
JOURNAL OF REHABILITATION MEDICINE, 2010, 42 (09) :818-822
[6]   AN INVENTORY FOR MEASURING DEPRESSION [J].
BECK, AT ;
ERBAUGH, J ;
WARD, CH ;
MOCK, J ;
MENDELSOHN, M .
ARCHIVES OF GENERAL PSYCHIATRY, 1961, 4 (06) :561-&
[7]   Factors Associated With the Variability in Caregiver Assessments of the Capacities of Patients With Alzheimer Disease [J].
Conde-Sala, Josep L. ;
Rene-Ramirez, Ramon ;
Turro-Garriga, Oriol ;
Gascon-Bayarri, Jordi ;
Juncadella-Puig, Montserrat ;
Moreno-Cordon, Laura ;
Vinas-Diez, Vanesa ;
Vilalta-Franch, Joan ;
Garre-Olmo, Josep .
JOURNAL OF GERIATRIC PSYCHIATRY AND NEUROLOGY, 2013, 26 (02) :86-94
[8]   THE NEUROPSYCHIATRIC INVENTORY - COMPREHENSIVE ASSESSMENT OF PSYCHOPATHOLOGY IN DEMENTIA [J].
CUMMINGS, JL ;
MEGA, M ;
GRAY, K ;
ROSENBERGTHOMPSON, S ;
CARUSI, DA ;
GORNBEIN, J .
NEUROLOGY, 1994, 44 (12) :2308-2314
[9]  
D'Aoust RF, 2014, INT J OLDER PEOPLE N, DOI [10.1111/opn.12043, DOI 10.1111/0PN.12043.]
[10]   A comparison of three methods of measuring dementia-specific quality of life: Perspectives of residents, staff, and observers [J].
Edelman, P ;
Fulton, BR ;
Kuhn, D ;
Chang, CH .
GERONTOLOGIST, 2005, 45 :27-36