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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. SUMMARY STATEMENT: What is already known about this topic? The Caregiver Reaction Assessment is one of the few instruments that measures positive reactions in caregivers.A validated Spanish version of the instrument is required for Spain and other Spanish‐speaking countries. What this paper adds? The Caregiver Reaction Assessment was shown to be a reliable, valid instrument for the measurement of the reactions of informal caregivers of people with dementia in Spain and has good psychometric properties. The implications of this paper: Once validation is complete, the Caregiver Reaction Assessment may be used in all Spanish‐speaking informal caregivers and is suitable for home care and long‐term care institutions.The Caregiver Reaction Assessment subscales allow healthcare professionals to identify and focus on the areas that could bring about the greatest improvements in the care of people with dementia.The Caregiver Reaction Assessment permits the caregiver's state to be viewed at any stage of dementia and offers healthcare professionals the opportunity to act to avoid physical and emotional overload in caregivers. [ABSTRACT FROM AUTHOR]

Risk factors associated with admission of people with dementia to long-term care institutions need to be identified to support health-care professionals in dementia care at home. An explorative study, combining quantitative and qualitative data collection methods, was performed in people with dementia in Spain. The sample, consisting of people with dementia receiving formal care from health-care professionals but at risk of institutionalisation, and their informal care-givers; and people with dementia recently admitted to a long-term care institution, and their informal care-givers, was interviewed between November 2010 and April 2012. Perceived reasons for admission were determined through an open-ended question put to both groups. Presumed risk factors were collected with validated questionnaires and analysed using bivariate analysis. A total of 287 people with dementia and informal care-givers were studied. Reasons given by the institutionalised group were mostly related to the level of dependency of the person with dementia. People recently admitted to a long-term care institution had more cognitive impairment, a greater degree of dependency and poorer quality of life than those still living at home. Home-care services in Spain need to develop or improve interventions based on the risk factors identified in this study: informal care-giver profile, high cognitive impairment, high level of dependency and the poor quality of life of the person with dementia. [ABSTRACT FROM AUTHOR]

Background: Dementia is a progressive neurological disorder that causes a high degree of dependency. This dependency has been defined as an increased need for assistance due to deterioration in cognition and physical functioning, and changes in behavior. Highly dependent people with dementia are more likely to be institutionalized. Objectives: To investigate the association between specific categories of physical dependency and the presence of neuropsychiatric symptoms in people with dementia admitted to a long-term care institution. Design: A prospective observational cohort study. Settings: Home care and long-term care institutions in eight European countries. Participants: People with dementia living at home but at risk of institutionalization and recently institutionalized people with dementia. Method: Baseline and 3-month follow-up interviews were performed between November, 2010 and April, 2012. The sample consisted of 116 recently institutionalized dementia sufferers and 949 people with dementia still living at home. Physical dependency was measured using the Katz Activity of Daily Living index, and neuropsychiatric symptoms were assessed through The Neuropsychiatric Inventory. Specific categories of dependency were analyzed by performing a logistic regression analysis. This followed examination of baseline characteristics to define the degree of physical dependency, as factors associated with institutionalization, and evaluation of the same characteristics at 3-month follow-up to detect changes in the degree of physical dependency and neuropsychiatric symptoms associated with recent admission to a long-term care institution. Results: Toileting, dressing and continence dependency was higher in institutionalized people than in those receiving home-care. Delusion, hallucination, agitation, anxiety, apathy, motor-disturbances, night-time behavior and eating disorders were also worse in the institutionalized. Logistic regression analysis showed that independent factors significantly associated with being recently institutionalized were toileting (odds ratio = 2.3; 95% confidence interval31.43-3.71) and motor disturbances (odds ratio = 1.81; 95% confidence interval = 1.15-2.87). Conclusions: This study supports the association between type and degree of physical dependency in people with dementia and long-term institutionalization. Institutionalization is associated with physical dependency and the presence of neuropsychiatric symptoms. [ABSTRACT FROM AUTHOR]

Objective: To assess a genetic counseling intervention measuring the distress, cancer risk perception, anxiety, worry and level of knowledge in people with familial history of breast cancer. Methods: One group pre- and post-test design. A total of 212 individuals completed a baseline questionnaire, 88.6% completed a second questionnaire one month later and 75.4% six months later. Results: Counseling intervention significantly increased the knowledge level of the individuals who received genetic education and significantly decreased the cancer worry levels. Persons with low perception of their cancer risk also had low worry levels. There were no significant changes over time in cancer risk perception or in quality of life. Conclusion: Counseling in a high risk population seems to decrease cancer worry and to increase cancer knowledge thus enabling a counselee to take well-informed decisions. Furthermore, according to our results, such interventions do not increase anxiety and do not modify the quality of life, but do not adjust their cancer risk perception. Practice implications: Providing individuals at increased risk of breast cancer genetic services seem to enhance their understanding of breast cancer without causing adverse psychological effects or changes in their quality of life, and it could improve their preventive behaviours. [Copyright &y& Elsevier]

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]

Abstract: Aim: To describe and compare knowledge expectations and received knowledge in elective orthopaedic surgery patients. Background: Population aging, increasing incidence of osteoarthritis, the growing number of surgical procedures, and reduced clinical stays underline the need for a new approach to patient education. Design: This study has a descriptive, comparative design. Methods: Data were collected from 263 patients who had total hip and knee replacement elective surgery during 3 years (2009‐2012) in 5 public hospitals in Spain. The Knowledge Expectation of Hospital Patients and the Received Knowledge of Hospital Patients Scales were used to collect data. The questionnaires were filled before hospital admission, at discharge and at follow‐up 6 to 7 months later. Results: Surgical patients received less knowledge than they expected. Patients' expectations were only met in the functional dimension. At follow‐up, patients reported that they perceived having acquired more knowledge during their hospital stay than they reported at the time of discharge. Knowledge expectations and knowledge received were related to employment status, gender, and previous contact experience with the hospital. Conclusion: Knowledge expectations were not met, and results showed the need to improve education for orthopaedic patients throughout the perioperative process, not only during hospitalization. [ABSTRACT FROM AUTHOR]

PURPOSE Total joint arthroplasty is accompanied by significant costs. In nursing, patient education on financial issues is considered important. Our purpose was to examine the possible association between the arthroplasty patients' financial knowledge and their out-of-pocket costs. METHODS Descriptive correlational study in five European countries. Patient data were collected preoperatively and at 6 months postoperatively, with structured, self-administered instruments, regarding their expected and received financial knowledge and out-of-pocket costs. FINDINGS There were 1,288 patients preoperatively, and 352 at 6 months. Patients' financial knowledge expectations were higher than knowledge received. Patients with high financial knowledge expectations and lack of fulfillment of these expectations had lowest costs. CONCLUSION There is need to establish programs for improving the financial knowledge of patients. Patients with fulfilled expectations reported higher costs and may have followed and reported their costs in a more precise way. In the future, this association needs multimethod research. [ABSTRACT FROM AUTHOR]

The purpose of the study was to examine received and expected knowledge of patients with knee/hip arthroplasty in seven European countries. The goal was to obtain information for developing empowering patient education. The data were collected (during 2009-2012) from patients (n = 943) with hip/knee arthroplasty prior to scheduled preoperative education and before discharge with the Received Knowledge of hospital patient scale (RKhp) and Expected Knowledge of hospital patient scale (EKhp). Patients’ knowledge expectations were high but the level of received knowledge did not correspond to expectations. The difference between received and expected knowledge was higher in Greece and Sweden compared with Finland (p < .0001, p < .0001), Spain (p < .0001, p = .001), and Lithuania (p = .005, p = .003), respectively. Patients’ knowledge expectations are important in tailoring patient education. To achieve high standards in the future, scientific research collaboration on empowering patient education is needed between European countries. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Ageing population entails a growing international problem of osteoarthritis. Best practices for education of these patients are lacking. This study focused on empowering education in Northern ( Finland, Iceland, Lithuania and Sweden) and Southern Europe ( Cyprus, Greece and Spain). The aim was to analyse associations between expected knowledge and background factors. The data were collected from European arthroplasty patients with the Knowledge Expectations of hospital patients- scale, (KEhp- scale), including bio-physiological, functional, experiential, ethical, social and financial dimensions. Patients had essential bio-physiological and functional knowledge expectations. Women expected more than men, employed less than retired, unemployed or who worked at home. Generally, patients in Northern countries expected more than in Southern countries. However, highest expectations were found in Sweden and Greece, lowest in Spain and Cyprus. There are differences in knowledge expectations based on patients' backgrounds. Development of common standards in European patient education needs further research. [ABSTRACT FROM AUTHOR]

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€/month or 4.536€/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. [ABSTRACT FROM AUTHOR]

Purpose To describe available and utilized formal care and service at home for persons with dementia, from diagnosis to end-of-life stage, in eight European countries. Design A descriptive cross-country design concerning eight European countries as a part of the European research project RightTimePlaceCare. Methods The research team in each country used a mapping system to collect country-specific information concerning dementia care and service system. The mapping system consists of 50 types of care and service activities. Sixteen of the 50 predefined activities concerning care and service at home were selected for this study and subdivided into three categories, following the stages of dementia. Findings Availability was reported to be higher than utilization, and the findings indicated more similarities than differences among the eight countries involved. Even though there were several available activities of 'basic care and services' and 'healthcare interventions,' they were utilized by few in most countries. Furthermore, 'specialized dementia care and services' were sparsely available and even more sparsely utilized in the participating countries. Conclusions The findings indicated that persons with dementia in Europe received formal care and service on a general, basic level but seldom adjusted to their specific needs. Clinical Relevance This study describes the gap between service provision and utilization enabling nurses to develop individually adjusted care plans for persons with dementia during the progress of the disease. The findings do not include matters of quality of care or how to best organize effective care and services. However, the activities of care and services presented here should shed light on what room there is for improvement when it comes to enabling persons with dementia to go on living at home. [ABSTRACT FROM AUTHOR]

Abstract: 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 &y& Elsevier]

Abstract: 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 &y& Elsevier]

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. [ABSTRACT FROM AUTHOR]

Objectives To explore the extent to which client characteristics, decision-maker attributes, and country influence judgments of institutional long-term care (ILTC) appropriateness for people with dementia. Design, setting, and participants A total of 161 experts in dementia care from 8 European countries reviewed a series of 14 vignettes representing people with dementia on the cusp of ILTC admission and indicated the most appropriate setting in which to support each case in a simple discrete choice exercise: own home, very sheltered housing, residential home, or nursing home. At least 16 experts participated in each country (Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden, and the United Kingdom). Measurements Descriptive statistics were used to characterize the experts and their placement preferences. Logistic regression modeling was used to explore the extent to which the sociodemographic and clinical characteristics of people with dementia, and the profession, workplace, and country of decision-makers were associated with ILTC recommendation. Results Client characteristics, decision-maker attributes, and country all seemed to play a part in influencing professionals' perceptions of the appropriateness of ILTC for people with dementia. Expert decision-makers were more likely to recommend ILTC for individuals who required help with mobility or had multiple care needs, and appeared to give more weight to carers' than clients’ wishes. Community-based social workers were less likely than other professional groups to favor ILTC placement. Experts in Finland, Germany, and the United Kingdom were less likely to recommend ILTC than experts in France, the Netherlands, and Estonia; experts in Sweden and Spain took an intermediate position. Conclusion This study provides new understanding of the factors that shape professionals' perceptions of ILTC appropriateness and highlights the need to construct multifaceted models of institutionalization when planning services for people with dementia. It also has several important clinical implications (including flagging interventions that could decrease the need for ILTC), and provides a basis for enhancing professionals’ decision-making capabilities (including the greater involvement of clients themselves). [ABSTRACT FROM AUTHOR]