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).

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 (β = -0.52, p < 0.001) and greater anosognosia (β = 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.

Kinship and cohabitation in caregiver burden 1 Viñas-Diez V, Turró-Garriga O, Portellano-Ortiz C, Gascón-Bayarri J, Reñé Ramírez R, Garre-Olmo J, Conde-Sala JL. Kinship and cohabitation in relation to caregiver burden in the context of Alzheimer's disease: a 24-month longitudinal study. Key points• The results of the longitudinal analysis established a greater burden (ZBI) on live-in adult-child caregivers, and a smaller burden on non-live-in adult-child caregivers, with stable scores on the follow-up for both groups. Spouses had a low burden in the early stages, with a significant increase during the follow-up.• Variations between spouses and adult-child caregivers are attributable to the different nature of the marital and child-parent relationship, and to the cohabitation factor.• The different types of caregivers have relevant socio-demographic and clinical features which help to characterize them: gender, cohabitation with persons with dementia, education, marital status, sole caregiver or not sole caregiver, and the use of external resources. Generalized estimating equations (GEE) 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, were less likely to be married, had a lower level of education, were 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 PwD 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.

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.

Abstract.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 (QoLBaseline), 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 χ 2 = 172.3, p < 0.001) than did the QoLChange model (Wald χ 2 = 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.

Graphical abstract

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.

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; β= –15.6 € /month), and a greater association between SOC and indirect costs (r2 = 0.562; β= –222.3 € /month). Conclusion: Increasing caregivers’ SOC could reduce dementia care costs by decreasing the use of social care resources and caregiving time.