Longitudinal effect of dementia carers' sense of coherence on burden.

BACKGROUND: A sense of coherence (SOC) could help us better understand why there are individuals who cope better than others in similar situations. The study aimed to assess the effect of SOC on the course of burden reports in relatives of persons with dementia. METHODS: This was a prospective cohort study of 156 dementia carers. The SOC was assessed by the Orientation to Life Questionnaire (OLQ-13), burden by Burden Interview, and personal and contextual characteristics were collected via ad hoc questions. The main dementia symptoms, including functional difficulties (Disability Assessment for Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), and cognitive impairment (Mini-Mental State Examination), were also assessed. A general linear model was adjusted to determine the effect of SOC and other covariates on burden throughout the follow-up. Burden differences between baseline and 12 and 24 months were analysed, and the baseline OLQ-13 score was grouped by quartiles. RESULTS: The global burden reported increased after 24 months (F = 9.98; df = 2; p < 0.001), but not equally for all carers; daughters reported the greatest increase. SOC, functional disability, and neuropsychiatric disorders showed a significant effect on burden, but time did not. Carers with higher SOC at baseline tend to remain with lower burden levels, whereas carers with low SOC reported higher burden at each visit. CONCLUSIONS: This study reports evidence of the effect of SOC on burden at baseline, 12 and 24 months of follow-up. Burden scores differ by carers' SOC; those with higher SOC showed lower burden levels, whereas the low-SOC group reported a greater burden at each visit.

Kinship and cohabitation in relation to caregiver burden in the context of Alzheimer's disease: a 24-month longitudinal study.

OBJECTIVES: The aims of the study were to identify the clinical characteristics of three groups of caregivers: spouses, live-in adult-child or non-live-in adult-child, and their relation to the degree of perceived burden (Caregiver Burden Interview). METHODS: The sample comprised 275 Alzheimer's disease primary caregivers, with a follow-up of 24 months. Cognitive, functional and behavioural characteristics were evaluated in persons with dementia, whilst sociodemographic data, use of socio-medical resources, physical and mental health and self-perceived burden were assessed in caregivers. Generalized estimating equations were used for longitudinal data analysis. RESULTS: Spouse caregivers were 45.0% men, sole caregivers (>80%), used few external resources and had worse physical health. The number of female adult-child caregivers was higher (>75%). The live-in adult-child group, compared with the non-live-in adult-child group, was less likely to be married, had a lower level of education, was more commonly the sole caregiver and used fewer external resources. The greatest burden was observed in live-in adult-child caregivers, and the lowest in the non-live-in adult-child group, with no significant variation in the follow-up for both groups. Spouses had an intermediate level of perceived burden, which rose significantly during follow-up (p < 0.001). CONCLUSIONS: Kinship and cohabitation with the persons with dementia were associated with different scores and evolution of the burden, with an increase in the follow-up of the spouses, and with more or less burden, depending on cohabitation, in the adult-child groups. Interventions to reduce the level of burden on caregivers should consider these differences. Copyright © 2017 John Wiley & Sons, Ltd.

Effects of anosognosia and neuropsychiatric symptoms on the quality of life of patients with Alzheimer's disease: a 24-month follow-up study.

OBJECTIVES: Neuropsychiatric symptoms and anosognosia are known to influence the perceived quality of life of patients (QoL-p) with Alzheimer's disease (AD). This study analysed their impact on patient and caregiver ratings of QoL-p and how these ratings changed in relation to the severity of dementia. METHODS: A baseline sample of 221 patients and caregivers was followed up over 24 months. Instruments: Neuropsychiatric Inventory (NPI), Anosognosia Questionnaire-Dementia (AQ-D), Quality of life-Alzheimer's Disease (QoL-AD) and the Global Deterioration Scale (GDS). Longitudinal data were analysed using generalized linear models. RESULTS: In the multivariate analysis, greater anosognosia was always associated with higher ratings of QoL-p among patients, especially at 24 months (p < 0.001), and with more negative ratings among caregivers, especially at baseline (p < 0.001). A higher total NPI score was associated with a more negative rating of QoL-p among caregivers (p < 0.001), and it also had a smaller negative effect on patients' self-ratings (p = 0.001). The neuropsychiatric symptoms (NPI) associated with a more negative view of QoL-p were depression, for patients' self-ratings, and apathy and agitation for caregiver ratings. The discrepancy between patient and caregiver ratings increased in line with the severity of dementia. CONCLUSION: Neuropsychiatric symptoms had a similarly negative effect on the QoL-p ratings of both patients and caregivers, whereas the effect of anosognosia differed according to the rater (positive for patients, negative for caregivers).

Factors associated with the variability in caregiver assessments of the capacities of patients with Alzheimer disease.

BACKGROUND: Several studies have identified certain caregiver factors that can produce variability in their assessments of the capacities of patients with Alzheimer disease (AD). OBJECTIVES: To identify the caregiver variables associated with variability in their ratings of patients' capacities. METHODS: Consecutive sample of 221 outpatients with AD and their family caregivers. The capacities evaluated by caregivers were the degree of functional disability, using the Disability Assessment for Dementia (DAD); psychological and behavioral symptoms, via the Neuropsychiatric Inventory (NPI); anosognosia, with the Anosognosia Questionnaire-Dementia (AQ-D); and quality of life, using the Quality of Life in AD (QOL-AD). The relationship between these measures and caregiver's gender, burden, depression, and health was analyzed by means of a bivariate analysis, calculating the effect size (Cohen d) and subsequently by a regression analysis, calculating the contribution coefficient (CC). RESULTS: The greatest variability in caregiver assessments was observed in relation to patients with early-stage dementia, where caregiver's burden was the main factor associated with a more negative evaluation (d = 1.02-1.25). Depression in the caregiver was associated with less variability and only in the assessments of patients with moderate dementia (d = 0.38-0.69). In the regression analysis, caregiver factors were associated with greater variance in scores on the NPI (CC = 37.4%) and QOL-AD (CC = 27.2%), and lower variance in AQ-D (CC = 21.6%) and DAD (CC = 10.3%) scores. CONCLUSIONS: Caregiver's burden and depression were associated with more negative assessments of patients' psychological and behavioral symptoms and quality of life.

Caregivers' Sense of Coherence: Implications on Direct and Indirect Costs of Dementia Care.

BACKGROUND: Dementia care is associated with physical, emotional, and monetary impact on the informal carers providing unpaid care. Differences in the personal characteristics of caregivers may help explain the variations in the costs of dementia care. OBJECTIVE: The aim of this study was to analyze the effect of caregivers' sense of coherence (SOC) on direct and indirect costs in dementia care. METHODS: A cross-sectional study was conducted in community dwelling caregivers of patients with Alzheimer's disease. Data of healthcare services were obtained from clinical registries, and information was collected from caregivers regarding their use of social care resources and time spent caregiving. The transformation of all costs into Euros was made assigning a fixed cost of 10.29 € /h and 16.24 € /h for assisting in instrumental and basic activities of daily living, respectively. Caregivers' SOC was assessed using the Orientation to Life Questionnaire (OLQ-13). Adjusted regression models were developed, with different types of costs as dependent variables. RESULTS: A sample of 147 caregivers was recruited. The mean OLQ-13 score was 73.3 points (SD = 11.6). The regression models showed a small association between caregivers' SOC and direct costs, mainly linked to the use of social care resources (r2 = 0.429; ß= -15.6 € /month), and a greater association between SOC and indirect costs (r2 = 0.562; ß= -222.3 € /month). CONCLUSION: Increasing caregivers' SOC could reduce dementia care costs by decreasing the use of social care resources and caregiving time.

Locus coeruleus connectivity alterations in late-life major depressive disorder during a visual oddball task.

The Locus Coeruleus (LC) is the major source of noradrenergic neurotransmission. Structural alterations in the LC have been observed in neurodegenerative disorders and at-risk individuals, although functional connectivity studies between the LC and other brain areas have not been yet performed in these populations. Patients with late-life major depressive disorder (MDD) are indeed at increased risk for neurodegenerative disorders, and here we investigated LC connectivity in late-life MDD in comparison to individuals with amnestic type mild cognitive impairment (aMCI) and healthy controls (HCs). We assessed 20 patients with late-life MDD, 16 patients with aMCI, and 26 HCs, who underwent a functional magnetic resonance scan while performing a visual oddball task. We assessed task-related modulations of LC connectivity (i.e., Psychophysiological Interactions, PPI) with other brain areas. A T1-weighted fast spin-echo sequence for LC localization was also obtained. Patients with late-life MDD showed lower global connectivity during target detection in a cluster encompassing the right caudal LC. Specifically, we observed lower LC connectivity with the left anterior cingulate cortex (ACC), the right fusiform gyrus, and different cerebellar clusters. Moreover, alterations in LC-ACC connectivity correlated negatively with depression severity (i.e., Geriatric Depression Scale and number of recurrences). Reduced connectivity of the LC during oddball performance seems to specifically characterize patients with late-life MDD, but not other populations of aged individuals with cognitive alterations. Such alteration is associated with different measures of disease severity, such as the current presence of symptoms and the burden of disease (number of recurrences).

Self-Perceived Quality of Life Among Patients with Alzheimer's Disease: Two Longitudinal Models of Analysis.

The objective was to analyze the factors that influence self-perceived quality of life (QoL) in patients with Alzheimer's disease (AD), contrasting two different longitudinal models. A total of 127 patients were followed up over 24 months. The instruments applied were: Quality of Life in Alzheimer's Disease scale (QoL-AD), Geriatric Depression Scale-15, Anosognosia Questionnaire-Dementia, Disability Assessment in Dementia, Neuropsychiatric Inventory, and the Mini-Mental State Examination. Two models for grouping patients were tested: 1) Baseline score on the QoL-AD (QoL-Baseline), and 2) Difference in QoL-AD score between baseline and follow-up (QoL-Change). Generalized estimating equations were used to analyze longitudinal data, and multinomial regression analyses were performed. Over the follow-up period the QoL-Baseline model showed greater variability between groups (Wald χ2 = 172.3, p < 0.001) than did the QoL-Change model (Wald χ2  = 1.7, p = 0.427). In the QoL-Baseline model the predictive factors were greater depression (odds ratio [OR] = 1.20; 95% CI: 1.00- 1.45) and lower functional ability (OR = 0.92; 95% CI: 0.85- 0.99) for the Low QoL group (< 33 QoL-AD), and less depression (OR = 0.68; 95% CI: 0.52- 0.88), more anosognosia (OR = 1.07; 95% CI: 1.01- 1.13), and fewer neuropsychiatric symptoms (OR = 0.95; 95% CI: 0.91- 0.99) for the High-QoL group (>37 QoL-AD). The model based on baseline scores (QoL-Baseline) was better than the QoL-Change model in terms of identifying trajectories and predictors of QoL in AD.

Síntomas depresivos y sobrecarga en los familiares cuidadores en la enfermedad de Alzheimer: un modelo de ecuaciones estructurales / Depressive symptoms and burden in family caregivers in Alzheimer’s disease: a model of structural equations

Introducción. El cuidado de los pacientes con enfermedad de Alzheimer incrementa la sobrecarga y la depresión del cuidador principal, aunque la relación entre ambas no está claramente definida. Objetivos. Explorar los factores asociados a la sintomatología depresiva y la sobrecarga en el cuidador principal y aplicar un modelo de ecuaciones estructurales para identificar la relación entre ellas. Sujetos y métodos. La muestra estuvo formada por 127 cuidadores familiares de personas con enfermedad de Alzheimer, con un seguimiento de 24 meses. Se realizaron análisis de regresión multivariante para identificar las características de pacientes y cuidadores asociadas a la sobrecarga y la depresión del cuidador principal, y se diseñó un modelo de ecuaciones estructurales para analizar la relación entre las variables. Resultados. En el modelo de ecuaciones estructurales, la sobrecarga tuvo un efecto directo sobre la depresión, tanto en la evaluación basal como a los 24 meses. Las variables asociadas a la sobrecarga fueron: la escolaridad y la menor salud mental del cuidador principal, y las alteraciones conductuales y la dependencia funcional del paciente. El menor nivel cognitivo del paciente y la menor salud mental del cuidador principal estuvieron asociados a la depresión. La correlación entre sobrecarga y depresión aumentó desde la evaluación basal hasta los dos años (r = 0,47 frente a r = 0,613). Conclusiones. El deterioro del paciente y la sobrecarga son factores de riesgo para la depresión en el cuidador principal. Serían necesarias intervenciones para reducir la carga y poder prevenir la depresión relacionada

Introduction. The care of patients with Alzheimer’s disease increases the burden and depression of the main caregiver, although the relationship between the two is not clearly defined. Aims. To explore the factors associated with depressive symptomatology and burden in the main caregiver and to apply a model of structural equations to identify the relationship between them. Subjects and methods. The sample consisted of 127 family caregivers of people with Alzheimer’s disease, with a follow-up of 24 months. Multivariate regression analyses were performed to identify the characteristics of patients and caregivers associated with burden and depression of the main caregiver, and a model of structural equations was designed to analyse the relationship between the variables. Results. In the model of structural equations, the burden had a direct effect on depression, both in the baseline assessment and at 24 months. The variables associated with burden were: schooling and the lower mental health of the main caregiver; and the behavioral alterations and the functional dependency of the patient. The lower cognitive level of the patient and the lower mental health of the main caregiver were associated with depression. The correlation between burden and depression increased from baseline to two years (r = 0.470 vs. r = 0.613). Conclusions. The deterioration of the patient and caregiver burden are risk factors for depression in the main caregiver. Interventions would be necessary to reduce the burden and prevent related depression

[The influence of anosognosia and depression on the perceived quality of life of patients with Alzheimer's disease: a 12 months follow-up]. / Anosognosia y depresión en la percepción de la calidad de vida de los pacientes con enfermedad de Alzheimer. Evolución a los 12 meses.

INTRODUCTION: Anosognosia and depression can influence perceptions of the patient's quality of life (QoL-p) in Alzheimer's disease (AD). AIM: To explore changes in perceived QoL-p in AD and the influence that depression and anosognosia can have on both patient and caregiver ratings. PATIENTS AND METHODS: Observational, analytical and longitudinal study over 12 months of a consecutive sample of 221 outpatients. Mean age was 77.8 ± 7.3 years and there were 140 women (63.3%). Instruments: Quality of Life in AD, Anosognosia Questionnaire-Dementia, Geriatric Depression Scale, Disability Assessment for Dementia, Neuropsychiatric Inventory, Mini-Mental State Examination and Global Deterioration Scale. Effect size of the differences between two means was calculated, and a linear regression analysis involving the factors associated with perceived QoL-p was performed. RESULTS: Patients with anosognosia had less depression and higher scores on the Quality of Life in AD, as compared with patients without anosognosia, and regardless of antidepressant drug treatment. Caregiver ratings of QoL-p were more negative. In the linear regression the largest discrepancies between patient and caregiver ratings of QoL-p were associated with anosognosia, depression, and functional status, factors that explained 35.3, 7.9 and 11.3% of the variance, respectively. CONCLUSIONS: Anosognosia was associated with less depression and better perceived quality of life in patients.

TITLE: Anosognosia y depresion en la percepcion de la calidad de vida de los pacientes con enfermedad de Alzheimer. Evolucion a los 12 meses.Introduccion. La anosognosia y la depresion pueden influir en la valoracion sobre la calidad de vida del paciente con enfermedad de Alzheimer. Objetivo. Explorar la evolucion de la calidad de vida del paciente con enfermedad de Alzheimer y la influencia de la anosognosia y la depresion en la percepcion de la calidad de vida de los pacientes y sus cuidadores. Pacientes y metodos. Estudio observacional, analitico y longitudinal de 12 meses. Muestra consecutiva de 221 pacientes atendidos ambulatoriamente. La media de edad fue de 77,8 ± 7,3 años y 140 fueron mujeres (63,3%). Instrumentos: Quality of Life in Alzheimer Disease, Anosognosia Questionnaire-Dementia, Geriatric Depression Scale, Disability Assessment for Dementia, Neuropsychiatric Inventory, Minimental State Examination y Global Deterioration Scale. Se calculo el tamaño del efecto en las diferencias entre dos medias y se realizo un analisis de regresion lineal con los factores asociados a la percepcion de la calidad de vida de los pacientes. Resultados. Los pacientes con anosognosia presentaron puntuaciones menores en depresion y mayores en la Quality of Life in Alzheimer Disease, al contrario que los pacientes sin anosognosia, e independientemente del tratamiento farmacologico antidepresivo. Los cuidadores puntuaron mas negativamente la calidad de vida de los pacientes. En la regresion lineal, las mayores discrepancias entre pacientes y cuidadores respecto a la calidad de vida se asociaron a la anosognosia, la depresion y la capacidad funcional (ß = ­0,21; p < 0,001), que explicaban el 35,3, 7,9 y 11,3%, respectivamente, de la varianza. Conclusion. La anosognosia se asociaba a una menor depresion y mejor percepcion de la calidad de vida en los pacientes.

Clinical differences in patients with Alzheimer's disease according to the presence or absence of anosognosia: implications for perceived quality of life.

This study aimed to determine the factors that predict anosognosia in patients with Alzheimer's disease (AD) and to examine the effect of anosognosia on patient and caregiver perceptions of the patient's quality of life (QoL-p), using a cross-sectional design with 164 patients and their caregivers. Instruments of measurement included Anosognosia Questionnaire-Dementia, Geriatric Depression Scale, Quality of Life in AD (QoL-AD), Disability Assessment for Dementia, Neuropsychiatric Inventory, and the Global Deterioration Scale (GDS). A binary logistic regression analysis was performed to identify the factors that predict anosognosia, while a linear regression analysis was conducted to determine the factors associated with QoL-AD. The degree of anosognosia increased in line with GDS stage (F (2,161) = 41.3, p < 0.001). In the binary regression analysis, the variables that predicted anosognosia were more neuropsychiatric symptoms (OR = 1.11, 95% CI: 1.06-1.17, p < 0.001), deficits in ADL (OR = 0.88, 95% CI: 0.83-0.94, p < 0.001), less depression (OR = 0.66, 95% CI: 0.54-0.82, p < 0.001), and older age (OR = 1.08, 95% CI: 1.00-1.15, p = 0.027). With regards to QoL-p, the multiple linear regression analysis for patients (r2 = 0.486) showed that less depression (ß = -0.52, p < 0.001) and greater anosognosia (ß = 0.40, p < 0.001) explained 33% and 10% of the variance in QoL-AD, respectively. Greater anosognosia was associated with better perceived QoL-p, especially in advanced GDS stages. Anosognosia was associated with greater caregiver burden and a greater discrepancy between patient and caregiver ratings of QoL-p.

Anosognosia y depresión en la percepción de la calidad de vida de los pacientes con enfermedad de Alzheimer. Evolución a los 12 meses / The influence of anosognosia and depression on the perceived quality of life of patients with Alzheimer’s disease: a 12 months follow-up

Introducción. La anosognosia y la depresión pueden influir en la valoración sobre la calidad de vida del paciente con enfermedad de Alzheimer. Objetivo. Explorar la evolución de la calidad de vida del paciente con enfermedad de Alzheimer y la influencia de la anosognosia y la depresión en la percepción de la calidad de vida de los pacientes y sus cuidadores. Pacientes y métodos. Estudio observacional, analítico y longitudinal de 12 meses. Muestra consecutiva de 221 pacientes atendidos ambulatoriamente. La media de edad fue de 77,8 ± 7,3 años y 140 fueron mujeres (63,3%). Instrumentos: Quality of Life in Alzheimer Disease, Anosognosia Questionnaire-Dementia, Geriatric Depression Scale, Disability Assessment for Dementia, Neuropsychiatric Inventory, Minimental State Examination y Global Deterioration Scale. Se calculó el tamaño del efecto en las diferencias entre dos medias y se realizó un análisis de regresión lineal con los factores asociados a la percepción de la calidad de vida de los pacientes. Resultados. Los pacientes con anosognosia presentaron puntuaciones menores en depresión y mayores en la Quality of Life in Alzheimer Disease, al contrario que los pacientes sin anosognosia, e independientemente del tratamiento farmacológico antidepresivo. Los cuidadores puntuaron más negativamente la calidad de vida de los pacientes. En la regresión lineal, las mayores discrepancias entre pacientes y cuidadores respecto a la calidad de vida se asociaron a la anosognosia, la depresión y la capacidad funcional (β = -0,21; p < 0,001), que explicaban el 35,3, 7,9 y 11,3%, respectivamente, de la varianza (AU)

Introduction. Anosognosia and depression can influence perceptions of the patient’s quality of life (QoL-p) in Alzheimer’s disease (AD). Aim. To explore changes in perceived QoL-p in AD and the influence that depression and anosognosia can have on both patient and caregiver ratings. Patients and methods. Observational, analytical and longitudinal study over 12 months of a consecutive sample of 221 outpatients. Mean age was 77.8 ± 7.3 years and there were 140 women (63.3%). Instruments: Quality of Life in AD, Anosognosia Questionnaire-Dementia, Geriatric Depression Scale, Disability Assessment for Dementia, Neuropsychiatric Inventory, Mini-Mental State Examination and Global Deterioration Scale. Effect size of the differences between two means was calculated, and a linear regression analysis involving the factors associated with perceived QoL-p was performed. Results. Patients with anosognosia had less depression and higher scores on the Quality of Life in AD, as compared with patients without anosognosia, and regardless of antidepressant drug treatment. Caregiver ratings of QoL-p were more negative. In the linear regression the largest discrepancies between patient and caregiver ratings of QoL-p were associatedwith anosognosia, depression, and functional status, factors that explained 35.3, 7.9 and 11.3% of the variance, respectively. Conclusions. Anosognosia was associated with less depression and better perceived quality of life in patients (AU)