Clinical progression of moderate-to-severe Alzheimer's disease and caregiver burden: a 12-month multicenter prospective observational study

2010 ◽  
Vol 22 (8) ◽  
pp. 1265-1279 ◽  
Author(s):  
Luis Agüera-Ortiz ◽  
Ana Frank-García ◽  
Pedro Gil ◽  
Alfonso Moreno

ABSTRACTBackground: Prospective studies on the clinical progression of Alzheimer's disease (AD) and its relationship to caregiver burden are needed to improve illness management and use of resources.Methods: This national, multicenter, observational study evaluated 1235 moderate to severe AD patients under routine care in Spain. Baseline cross-sectional sociodemographic and clinical data, and changes from baseline to month 12 of various neuropsychological tests and clinical ratings, including Blessed Dementia Scale, Mini-mental State Examination (MMSE), Hughes Clinical Dementia Rating sum-of-boxes (CDR-SB), Clinical Global Impression of Change (CGIC) and Zarit Caregiver Burden scales, were recorded and comprehensively analyzed.Results: Baseline data were in accordance with characteristics consistently reported to influence AD risk regarding anthropometrics, sociocultural features and comorbidities. Significant progressive functional impairments (i.e. in routine activities and essential daily tasks) and cognitive (i.e. MMSE and CDR-SB) impairments were found at month 12. However, patients' behavior and caregivers' burden improved slightly, but significantly, corroborating the major influence of behavioral symptoms on caregivers' distress. Caregivers showed significantly lower burden with patients with higher levels of education and, to a lesser extent, when patients received AD-specific medication. Physicians accurately detected AD clinical evolution as their CGIC ratings significantly correlated with all tests.Conclusions: These findings reinforce previous AD knowledge and add data on the clinical course of advanced stages of AD. Caregiver burden depended more on patients' behavioral alterations than on their functional or cognitive declines; and it was diminished by their patients having higher levels of education and being treated with AD-specific medications. Research into unexplored factors that might reduce caregiver burden, ultimately benefiting both patients and caregivers, is encouraged.

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Manee Pinyopornpanish ◽  
Kanokporn Pinyopornpanish ◽  
Atiwat Soontornpun ◽  
Surat Tanprawate ◽  
Angkana Nadsasarn ◽  
...  

Abstract Background Caregiver burden affects the caregiver’s health and is related to the quality of care received by patients. This study aimed to determine the extent to which caregivers feel burdened when caring for patients with Alzheimer’s Disease (AD) and to investigate the predictors for caregiving burden. Methods A cross-sectional study was conducted. One hundred two caregivers of patients with AD at Maharaj Nakorn Chiang Mai Hospital, a tertiary care hospital, were recruited. Assessment tools included the perceived stress scale (stress), PHQ-9 (depressive symptoms), Zarit Burden Interview-12 (burden), Clinical Dementia Rating (disease severity), Neuropsychiatric Inventory Questionnaires (neuropsychiatric symptoms), and Barthel Activities Daily Living Index (dependency). The mediation analysis model was used to determine any associations. Results A higher level of severity of neuropsychiatric symptoms (r = 0.37, p < 0.01), higher level of perceived stress (r = 0.57, p < 0.01), and higher level of depressive symptoms (r = 0.54, p < 0.01) were related to a higher level of caregiver burden. The direct effect of neuropsychiatric symptoms on caregiver burden was fully mediated by perceived stress and depressive symptoms (r = 0.13, p = 0.177), rendering an increase of 46% of variance in caregiver burden by this parallel mediation model. The significant indirect effect of neuropsychiatric symptoms by these two mediators was (r = 0.21, p = 0.001). Conclusion Caregiver burden is associated with patients’ neuropsychiatric symptoms indirectly through the caregiver’s depressive symptoms and perception of stress. Early detection and provision of appropriate interventions and skills to manage stress and depression could be useful in reducing and preventing caregiver burden.


2013 ◽  
Vol 7 (2) ◽  
pp. 171-175
Author(s):  
Gustavo Henrique de Oliveira Caldas ◽  
Sueli Luciano Pires ◽  
Milton Luiz Gorzoni

ABSTRACT Neuropsychiatric symptoms (NPS) cause distress, disabilitiy and reduced quality of life for both the patient and their families Objective: To evaluate the prevalence of NPS as a specific stage of dementia status. Methods: A cross-sectional study in patients attending an outpatient clinic for dementia was performed. We applied the Neuropsychiatric Inventory and Clinical Dementia Rating (CDR) scale. Statistical analysis was carried out with SPSS 17 software. Results: The 124 subjects (mean age of 80.4±7.0 years), 88 women (70.9%) had average duration of dementia of 7.1±3.2 years, most common dementias of Alzheimer's disease (35.5%) and mixed (31.5%) and most prevalent NPS of apathy (75%) and irritability (66.9%). Correlation between apathy and a CDR 1 had a PR (prevalence ratio) = 0.289 and p<0.001 while between apathy and CDR 4-5 (PR=8.333, p<0.005). A similar result was found between aberrant motor behavior (AMB) and CDR 1 (PR=0.352, p<0.003) and between AMB and CDR4-5 (PR=2.929, p<0.006). Conclusion: Alzheimer's disease and mixed dementia were predominant, while apathy and AMB were detected in association with the progressive stages of dementia.


2019 ◽  
Vol 9 (9) ◽  
pp. 212 ◽  
Author(s):  
Lawrence Fulton ◽  
Diane Dolezel ◽  
Jordan Harrop ◽  
Yan Yan ◽  
Christopher Fulton

Background. Alzheimer’s is a disease for which there is no cure. Diagnosing Alzheimer’s disease (AD) early facilitates family planning and cost control. The purpose of this study is to predict the presence of AD using socio-demographic, clinical, and magnetic resonance imaging (MRI) data. Early detection of AD enables family planning and may reduce costs by delaying long-term care. Accurate, non-imagery methods also reduce patient costs. The Open Access Series of Imaging Studies (OASIS-1) cross-sectional MRI data were analyzed. A gradient boosted machine (GBM) predicted the presence of AD as a function of gender, age, education, socioeconomic status (SES), and a mini-mental state exam (MMSE). A residual network with 50 layers (ResNet-50) predicted the clinical dementia rating (CDR) presence and severity from MRI’s (multi-class classification). The GBM achieved a mean 91.3% prediction accuracy (10-fold stratified cross validation) for dichotomous CDR using socio-demographic and MMSE variables. MMSE was the most important feature. ResNet-50 using image generation techniques based on an 80% training set resulted in 98.99% three class prediction accuracy on 4139 images (20% validation set) at Epoch 133 and nearly perfect multi-class predication accuracy on the training set (99.34%). Machine learning methods classify AD with high accuracy. GBM models may help provide initial detection based on non-imagery analysis, while ResNet-50 network models might help identify AD patients automatically prior to provider review.


2010 ◽  
Vol 23 (1) ◽  
pp. 73-85 ◽  
Author(s):  
Niklas Bergvall ◽  
Per Brinck ◽  
Daniel Eek ◽  
Anders Gustavsson ◽  
Anders Wimo ◽  
...  

ABSTRACTBackground: Cognition, abilities in activities of daily living (ADL), and behavioral disturbances in patients with Alzheimer's disease (AD) all influence the number of hours informal caregivers spend caring for their patients, and the burden caregivers experience. However, the direct effect and relative importance of each disease severity measure remains unclear.Methods: Cross-sectional interviews were conducted with 1,222 AD patients and primary caregivers in Spain, Sweden, the U.K. and the U.S.A. Assessments included informal care hours, caregiver burden (Zarit Burden Inventory; ZBI), cognition (Mini-mental State Examination; MMSE), ADL-abilities (Disability Assessment for Dementia scale; DAD), and behavioral symptoms (Neuropsychiatric Inventory Questionnaire; NPI-severity).Results: Multivariate analyses of 866 community-dwelling patients revealed that ADL-ability was the strongest predictor of informal care hours (36% decrease in informal care hours per standard deviation (SD) increase in DAD scores). Severity of behavioral disturbances was the strongest predictor of caregiver burden (0.35 SD increase in ZBI score per SD increase in NPI-Q severity score). In addition, the effect of ADL-abilities was, although attenuated, not negligible (0.28 SD increase in ZBI score per SD increase in DAD score). Decreasing cognition (MMSE) was associated with more informal care hours and increased caregiver burden in univariate, but not in adjusted analyses.Conclusions: For patients residing in community dwellings, the direct influence of patients’ cognition on caregiver burden is limited and rather mediated by other disease indicators. Instead, the patients’ ADL-abilities are the main predictor of informal care hours, and both ADL-abilities and behavioral disturbances are important predictors of perceived caregiver burden, where the latter has the strongest effect. These results were consistent across Sweden, U.K. and the U.S.A.


2016 ◽  
Vol 16 (1) ◽  
Author(s):  
Jeremie Lebrec ◽  
Haya Ascher-Svanum ◽  
Yun-Fei Chen ◽  
Catherine Reed ◽  
Kristin Kahle-Wrobleski ◽  
...  

2015 ◽  
Vol 40 (5-6) ◽  
pp. 268-275 ◽  
Author(s):  
Thais Bento Lima-Silva ◽  
Valéria Santoro Bahia ◽  
Viviane Amaral Carvalho ◽  
Henrique Cerqueira Guimarães ◽  
Paulo Caramelli ◽  
...  

Background/Aims: We aimed to compare caregiver burden and distress in behavioral-variant frontotemporal dementia (bvFTD) and Alzheimer's disease (AD) and to investigate which factors contribute to caregivers' burden and distress. Methods: Fifty patients and their caregivers were invited to participate. Among the patients, 20 had a diagnosis of bvFTD and 30 had AD. Caregivers and patients were statistically equivalent for age, sex, education and dementia severity according to Clinical Dementia Rating. The protocol included the Short Zarit Burden Inventory, the Neuropsychiatric Inventory (NPI), Disability Assessment for Dementia (DAD), the Cornell Scale for Depression in Dementia (CSDD), Addenbrooke's Cognitive Examination-Revised, the Executive Interview with 25 Items, Direct Assessment of Functional Status and the Geriatric Anxiety Inventory (GAI). Results: In the NPI, caregivers of bvFTD patients reported a higher presence and severity of neuropsychiatric symptoms and caregiver distress compared to caregivers of AD patients. There was no significant difference in the perceived burden. In bvFTD, DAD and GAI scores were significantly correlated with burden, whereas in AD, burden was correlated with CSDD and NPI scores. Psychiatric symptoms were associated with distress in both groups. Conclusions: Caregivers of bvFTD patients experienced higher levels of distress than caregivers of AD patients. Patients' functional limitations were associated with burden of caregivers of bvFTD patients, whereas neuropsychiatric symptoms were associated with caregiver strain in both groups.


2015 ◽  
Vol 28 (2) ◽  
pp. 247-259 ◽  
Author(s):  
Catherine Reed ◽  
Mark Belger ◽  
Bruno Vellas ◽  
Jeffrey Scott Andrews ◽  
Josep M. Argimon ◽  
...  

ABSTRACTBackground:We aimed to obtain a better understanding of how different aspects of patient functioning affect key cost and caregiver outcomes in Alzheimer's disease (AD).Methods:Baseline data from a prospective observational study of community-living AD patients (GERAS) were used. Functioning was assessed using the Alzheimer's Disease Cooperative Study – Activities of Daily Living Scale. Generalized linear models were conducted to analyze the relationship between scores for total activities of daily living (ADL), basic ADL (BADL), instrumental ADL (IADL), ADL subdomains (confirmed through factor analysis) and individual ADL questions, and total societal costs, patient healthcare and social care costs, total and supervision caregiver time, and caregiver burden.Results:Four distinct ADL subdomains were confirmed: basic activities, domestic/household activities, communication, and outside activities. Higher total societal costs were associated with impairments in all aspects of ADL, including all subdomains; patient costs were associated with total ADL and BADL, and basic activities subdomain scores. Both total and supervision caregiver hours were associated with total ADL and IADL scores, and domestic/household and outside activities subdomain scores (greater hours associated with greater functional impairments). There was no association between caregiver burden and BADL or basic activities subdomain scores. The relationship between total ADL, IADL, and the outside activities subdomain and outcomes differed between patients with mild and moderate-to-severe AD.Conclusions:Identification of ADL subdomains may lead to a better understanding of the association between patient function and costs and caregiver outcomes at different stages of AD, in particular the outside activities subdomain within mild AD.


2015 ◽  
Vol 44 (3) ◽  
pp. 907-916 ◽  
Author(s):  
Virginie Dauphinot ◽  
Floriane Delphin-Combe ◽  
Christelle Mouchoux ◽  
Aline Dorey ◽  
Anthony Bathsavanis ◽  
...  

2016 ◽  
Vol 28 (7) ◽  
pp. 1133-1141 ◽  
Author(s):  
J. Garre-Olmo ◽  
J. Vilalta-Franch ◽  
L. Calvó-Perxas ◽  
O. Turró-Garriga ◽  
L. Conde-Sala ◽  
...  

ABSTRACTBackground:The concept of dependence has been proposed as an integrative measure to assess the progression of Alzheimer's disease (AD).This study aimed to investigate the association of patient's dependence level with the caregiver burden within a general theoretical model that includes other well-established determinants.Methods:Observational and cross-sectional multicenter study. The sample consisted of patients with AD recruited in outpatient consultation offices by a convenience sampling procedure stratified by dementia severity. Cognitive and functional status, behavioral disturbances, dependence level, medical comorbidities, and caregiver burden were assessed by using standardized instruments. A path analysis was used to test the hypothesized relationships between the caregiver burden and its determinants, including the level of dependence.Results:The sample consisted of 306 patients (33.3% mild, 35.9% moderate, 30.7% severe), the mean age was 78.5 years (SD = 7.8), and 66.2% were women. The model fit was acceptable and explained 29% of the caregiver burden variance. Primary stressors were the level of dependence and the distress related to behavioral disturbances. Caregiver's age, gender, and co-residence with the patient were the contextual factors related to caregiver burden. The job status of the caregiver was a significant secondary stressor, functional disability was indirectly associated with caregiver burden via dependence, and frequency of behavioral disturbances was indirectly associated with the caregiver burden via distress.Conclusions:Dependence was, apart from behavioral disturbances, the most important primary stressor directly related to caregiver burden irrespective of the disease severity.


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