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Dementia is associated with cognitive decline. Becoming an informal caregiver raises questions, requiring information and support from health professionals to guide home care. A multicenter, longitudinal study was carried out to validate the Spanish version of the double scale of expected and received knowledge for informal caregivers of people with dementia (KESO-DEM/RKSO-DEM), the analysis of the dimensional structure of the instrument, its validity and reliability, and temporary stability was carried out. An analysis of criterion and construct validity, internal consistency, and test−retest stability was performed. The evaluation of the interrelation between dimensions was statistically significant. Regarding internal consistency, the scale values were good both for the scale totals and for each dimension of knowledge, with Cronbach’s alpha coefficients of 0.97. For criterion validity, all items showed temporal stability for both questionnaires (p < 0.05). The availability of a valid, reliable tool for the measurement of expected and received knowledge in caregivers of people with dementia allows an approach based on the real needs of the family and the patient. It is important to design care protocols for people with dementia that are adapted to their needs and expectations and to their non-curative treatment, to improve the emotional well-being of patients and informal caregivers.

Aim: Of the few instruments available to measure the important, positive aspects of caring, the Caregiver Reaction Assessment is regarded as the most suitable, but there is no validated Spanish version. The aim of this study was to translate the Caregiver Reaction Assessment into Spanish and assess its psychometric properties., Methods: The Caregiver Reaction Assessment was translated into Spanish and then back translated. Validation included construct validity, criterion validity and reliability: 287 interviews were conducted with informal caregivers of patients with dementia between November 2010 and April 2012., Results: Principal component analysis confirmed the original instrument's five subscales. Criterion validity showed a moderate negative correlation between the impact on health and the EQ-5D (r = -.43), that is, a greater impact on health correlated with lower health-related quality of life. The Caregiver Reaction Assessment showed good internal consistency, with a Cronbach alpha of .804, and good temporal stability for the distinct subscales, with intraclass correlation coefficients varying from .683 to .729 (p < .001)., Conclusion: The Caregiver Reaction Assessment is a reliable, valid instrument for the measurement of the reactions of informal caregivers of patients with dementia, with good psychometric properties., (© 2020 John Wiley & Sons Australia, Ltd.)

Aims: We analyzed indirect costs related to loss of labor productivity (LLP) in informal caregivers (ICs) of people with dementia (PwD) and the associated caregiver burden and patients' clinical variables., Methods: Multicenter cohort study of PwD and their ICs (n = 287) focused on two groups: (1) home care and (2) institutional long-term care. The costs of LLP were assessed using the Resource Utilization Dementia instrument and a human capital approach., Results: The cost for LLP was 378&OV0556;/month or 4.536&OV0556;/year. Greater disease severity increased the likelihood of reducing working hours and missing a working day. There was a significant association between partial absenteeism and burden in employed informal caregiver in both the home and institutional setting., Conclusion: Cognitive impairment contributes to the cost of LLP in IC especially in home-care. LLP has a negative impact on IC burden.

An experimental study was carried out in a geriatric hospital unit (pre-discharge at home) with repeated observations taken at baseline, on study completion and six months post-intervention to analyze the impact of a psychoeducational intervention INFOSA addressed to caregivers who support dependent elderly people, on burden, psychological distress and perceived support. Univariate regression models showed that the participants in the experimental group had less burden (OR 35, IC 95% 7.47-163.99) and emotional distress (OR 149.5, IC 95% 15. 57-1435.52) than participants in the control group. Odds ratios effect were statistically significant at post-test and six-month follow-up. The INFOSA intervention reduced burden and emotional distress and enhanced caregivers' perceived social support in the short-term, suggesting that applying the intervention for an extended period could maintain the positive effect in the long-term., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Background: Informal (dementia) care has economic consequences throughout the health care system. Whilst the health and wellbeing of the care recipient might improve, the health of the caregiver might also change, typically for the worse. Therefore, this analysis aims to examine the association between caregiving intensity and caregivers' health and health care utilization., Data and Methods: The empirical analysis is based on cross-sectional survey data generated by the European Project "RightTimePlaceCare" (RTPC). RTPC was a prospective cohort study conducted in eight European countries (Estonia, Finland, France, Germany, Netherlands, Sweden, Spain and the United Kingdom). The health status of 1029 informal caregivers was assessed by measures of psychological wellbeing (GHQ-12) and self-rated overall health (EQ-VAS). Health care utilization was measured by (i) the self-stated proportion of health care use influenced by caregiving and (ii) the probability of at least one visit to a general practitioner within in the last 30 days. The association between caregiving intensity and caregivers' health and health care utilization was assessed by descriptive analysis and multivariate OLS- and probit-models., Results: A higher amount of informal care was significantly related to negative health outcomes for informal caregivers. On average, one additional hour of informal caregiving per day was associated with a decrease of psychological wellbeing and self-rated overall health by 0.16 and 0.42 index points respectively. Furthermore, one more hour of informal caregiving corresponded with increased self-stated proportion of health care use by 0.56 percentage points. However, the claim of increased health care demand due to caregiving as measured by GP visits was only partly confirmed., Conclusion: When evaluating the full economic effect of informal care, the impact of providing care on caregivers' health and health care utilization has to be taken into account., (Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.)

Aim: To describe the associations between positive and negative reactions of informal caregivers of people with dementia and health outcomes across eight European Countries., Background: Caring for someone with dementia may have implications for the caregiver's own health and for the care recipient. These consequences could be associated with caregivers' reactions to the process of care., Design: Association study based on cross-sectional data., Methods: Participants were people with dementia and their informal caregivers living at home or in long-term care institutions. Data were collected between November 2010-April 2012 using the Caregiver Reaction Assessment (with dimensions of self-esteem, lack of family support, financial problems, disrupted schedule and health problems) and associations were sought with informal caregiver burden, quality of life and psychological well-being and with dementia sufferers' neuropsychiatric symptoms, comorbidity and dependency in activities of daily living using correlation coefficients., Results: Data from 2014 participants were used. Variability across countries was noted, as well as differences between care at home and in long-term care institutions. In general, self-esteem and lack of family support correlated with caregiver burden and psychological well-being. Associations were also found between disrupted schedule and caregiver burden, psychological well-being and quality of life. Health problems were clearly associated with caregiver burden, psychological well-being and quality of life., Conclusion: Study results support links between the reactions of informal caregivers of people with dementia and health outcomes. These may have implications in terms of how services are addressed., (© 2014 John Wiley & Sons Ltd.)

Objective: To identify effective interventions which improve quality of care for people with dementia (PwD) living at home., Methods: MEDLINE-(via PubMed), CINAHL, PsycINFO and ISI Web of Science databases were searched., Inclusion Criteria: (1) randomized controlled trials; (2) published in English-language, peer-reviewed journals between 1990 and 2012; (3) evaluated strategies to improve quality of care for PwD cared at home; and (4) participants older than 65., Results: 23 studies met inclusion criteria. All the studies aimed to improve PwD quality of care and most of them focused on PwD caregivers. Psychoeducational programs are the most frequently assessed interventions and multicomponent interventions produced the most promising results., Conclusion: Due to the great variety of interventions describing specific samples and contexts, comparison of practice effectiveness is difficult. However, cognitive rehabilitation in PwD is effective when applied at an early stage of the disease. Case managers have demonstrated to reduce PwD institutionalization and the use of other community services. The studies were limited by sample heterogeneity, short follow-up or insufficiently detailed description., Practice Implications: To improve PwD homecare, health professionals should educate and support caregivers. Before specific interventional recommendations can be made, further research addressing the limitations of current studies is needed., (Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.)

Objectives: To explore reasons for institutionalization of people with dementia according to informal caregivers as well as variation in reasons between countries., Design: An explorative cross-sectional study was conducted in 8 European countries., Setting: Per country, a minimum of 3 long term care facilities, offering care and accommodation as a package, participated in this study. Participating countries were selected to represent different geographic areas in Europe., Participants: Of the 791 informal caregivers involved in the RightTimePlaceCare project of people with dementia who were recently admitted to a long term care facility, 786 were included for this study., Measurements: As part of a semistructured interview, informal caregivers were asked the main reason for institutionalization in an open-ended question. Answers were categorized according to a conventional coding approach. All reasons were then quantified and tested., Results: Mainly patient-related reasons were stated, such as neuropsychiatric symptoms (25%), care dependency (24%), and cognition (19%). Neuropsychiatric symptoms were among the most often mentioned reasons in most countries. Besides patient-related reasons, caregiver burden and the inability of the informal caregiver to care for the patient were stated as reasons (both 15%). Further analyses showed countries differ significantly in reasons according to informal caregivers. Additionally, reasons were analyzed for spouses and child-caregivers, showing that spouses more often stated reasons related to themselves compared with child-caregivers., Conclusion: Multiple reasons contribute to the institutionalization for people with dementia, with several factors that may influence why there were country differences. Variation in the organization of dementia care and cultural aspects, or the relationship between the informal caregiver and person with dementia may be factors influencing the reasons. Because of a wide variation in reasons between countries, no one-size-fits-all approach can be offered to guide informal caregivers when facing the possibility of institutionalization of the person with dementia., (Copyright © 2014 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.)

With the increasing population of persons over the age of 65 who need daily assistance in Spain, there is considerable need to better understand informal caregivers' views, particularly about the resources that are available to them, or should be available to them. With that purpose in mind, a grounded theory method was used with focus groups in Barcelona, Malaga, Seville, and Tenerife. All of the participants were caring for family members with dementia, cancer, or other neurodegenerative conditions. The findings generated 86 codes, which were grouped into two categories: understanding the experience of caregiving, and caregiving resources. The first category was the need for caregivers to talk about their experiences and to be listened to. The second category included the presence of resources and support requirements. The caregivers said that their ability as caregivers was limited; many did not know what resources were available or how to locate new resources. Many caregivers are carrying out their role dutifully, but feel isolated, suggesting that there is a lack of social understanding and policies about informal caregivers in Spain.

The constantly changing process of caring for a person with dementia affects the informal caregivers' role due to its psychosocial impact. This cross-sectional study aimed to analyze the impact of the Person with Dementia informal caregiver's role caregiver to a person with dementia on the self-perceived quality of life (QoL) of the caregiver. In total, 160 informal caregivers were recruited between January and December 2019. Informal caregivers' quality of life was assessed using the European Quality of Life 5-Dimension scale, burden with the Zarit Burden Scale, emotional wellbeing using the General Health Questionnaire, and caregiver reactions using Caregiver Reaction Aspects. Patients' cognitive impairment was assessed with the Mini-Mental State Examination, their quality of life using Quality of Life in Alzheimer's Disease, and neuropsychiatric symptoms using the Neuropsychiatric Inventory. Outcomes were studied using the Pearson correlation coefficient and ANOVA test. Most informal caregivers' outcomes were significantly associated with their quality of life. Male informal caregivers have a slightly better quality of life than female caregivers (p < 0.001). Caregiver burden (p < 0.001), psychological wellbeing (p < 0.001) and negative aspects of caregiving on health (p < 0.001) correlated moderately with informal caregivers' quality of life. Factors associated with dementia, including the course of the illness and its severity with the presence of neuropsychiatric symptoms can negatively affect the informal caregiver's role and produce a low self-perception of quality of life; thus, social and professional support for informal caregivers is essential. [ABSTRACT FROM AUTHOR]