Partner Care Arrangements and Well-Being in Mid- and Later Life: The Role of Gender Across Care Contexts.

OBJECTIVES: We assess gender moderation in the association between partner care arrangements and individuals' well-being, and the extent to which gender differences vary across European care contexts. METHODS: We use 2015 data from the Survey of Health, Ageing and Retirement in Europe for 3,465 couples aged 50+, where at least 1 partner receives care. We assess gender differences in individuals' life satisfaction and depressive symptoms across 5 partner care arrangements: solo-; shared formal; shared informal; outsourced formal; and outsourced informal care. We explore heterogeneity in the gendered associations across 4 care contexts: Northern, Western, Southern, and Eastern Europe. RESULTS: Sharing care with formal providers is associated with lower well-being among women than men, with a significant well-being "penalty" among Southern European women with partners in shared formal care. Outsourcing partner care to informal providers is associated with higher well-being than other care arrangements for men across care contexts, but with lower well-being for women in Southern Europe. DISCUSSION: Policies to support caregivers' well-being need to be sensitive to the coordination of formal and informal caregiving support for men and women in their respective care contexts.

Effect of an Educational Support Programme on Caregiver Burden Among the Family Members of Patients Undergoing Coronary Artery Bypass Graft Surgery.

OBJECTIVES: The family caregivers of patients undergoing coronary artery bypass graft (CABG) surgery experience considerable physical and emotional distress. This study aimed to investigate the effect of an educational support programme on caregiver burden among the family caregivers of patients undergoing CABG surgery in Iran. METHODS: This non-randomised controlled clinical trial was conducted from January to April 2017 at a cardiovascular centre in Tehran, Iran. A total of 80 family caregivers of patients undergoing CABG surgery were sequentially selected and non-randomly assigned to intervention and control groups. The control group received routine care, whereas the intervention group received additional education sessions at baseline, prior to surgery, the day after surgery and before discharge. Caregiver burden was compared at baseline and six weeks post-discharge using the Persian-language versions of the Caregiver Burden Inventory (CBI) and Katz Index of Independence in Activities of Daily Living (IADL). RESULTS: A significant difference was observed between family caregivers in the control and intervention groups with regards to pre-post differences in mean CBI scores (+1.67 ± 19.23 versus +17.45 ± 9.83; P <0.001), with an effect size of -1.14. In addition, there was a significant increase in mean post-discharge IADL scores among CABG patients in the intervention group compared to the control group (4.42 ± 1.05 versus 3.07 ± 1.09; P <0.001). CONCLUSION: An educational support programme significantly reduced caregiver burden among the family members of patients undergoing CABG surgery in Iran. As such, in addition to routine care, healthcare providers should provide educational support to this population to help mitigate caregiver burden.

Supporting families to protect child health: Parenting quality and household needs during the COVID-19 pandemic.

BACKGROUND: Supportive parenting is critical for promoting healthy child development in the face of stressors, such as those occurring during COVID-19. Here, we address a knowledge gap regarding specific household risk factors associated with parenting quality during the pandemic and incorporate first-person accounts of family challenges and needs. METHODS: Mixed methods were applied to data collected between April 14th - 28th, 2020 from the "Parenting During the Pandemic" survey. Participants included 656 primary caregivers (e.g., mothers, fathers, foster parents) of least one child age 1.5-8 years of which 555 (84.6%) responded to at least one parenting questionnaire. Parenting quality was assessed across stressful, negative, and positive parenting dimensions. Household risk was examined across pandemic- linked (e.g., caregiver depression, unmet childcare needs) and stable factors (i.e., annual income, mental illness history). Significant correlates were examined with regressions in Mplus. Thematic analysis identified caregiver challenges and unmet needs from open-ended questions. FINDINGS: Caregiver depression, higher child parity, unmet childcare needs, and relationship distress predicted lower-quality parenting. Caregiver depression was the most significant predictor across every parenting dimension, with analyses indicating medium effect sizes, ds = .39 - .73. Qualitative findings highlighted severe strains on parent capacities including managing psychological distress, limited social supports, and too much unstructured time. INTERPRETATIONS: Lower quality parenting during COVID-19 is associated with multiple household and pandemic risk factors, with caregiver depression consistently linked to parent- child relationship disruptions. Focused efforts are needed to address caregiver mental health to protect child health as part of the pandemic response.

CE: Providing Care for Caregivers During COVID-19.

ABSTRACT: Care for the Caregiver is a peer-to-peer program that provides support and guidance to clinicians who have experienced an unexpected and emotionally distressing event. Its development was preceded by communication and resolution programs that were endorsed by the Joint Commission in 2001, subsequently introduced at several U.S. medical centers, and in 2009 were incorporated within demonstration projects funded by the Agency for Healthcare Research and Quality. In August 2014, the authors introduced the Care for the Caregiver program across the MedStar Health System, which includes seven hospitals in Maryland and three in the District of Columbia. Here, they describe how the program was initially conceived and structured-and how it evolved in response to the current pandemic.

Mirabegron Alleviates the Degree of Burden Experienced by Caregivers of Older Females with Mixed or Urge Incontinence: A Prospective Study.

PURPOSE: Older people, especially women, have the highest known prevalence of urinary incontinence (UI) of any other age-group. Continual care provision for elderly incontinent females is an incredibly arduous process, yet only very few studies have investigated the issue. Aim of the study was to evaluate the impact of mirabegron's treatment on the degree of burden experienced by caregivers of elderly female patients with UI. PATIENTS AND METHODS: A hundred and eighty-six caregivers of older females with mixed or urgency UI besides various conditions (strokes, post-operative recovery after major surgery, etc.) were included in the study. Group A comprised 91 patients that did not want to receive any treatment for UI. Group B consisted of 95 elderly females treated for UI with mirabegron 50 mg/daily for three months. All caregivers completed the Zarit Burden Scale (ZBS) questionnaire at the outset and after the three months. All patients completed a bladder diary at the beginning and at the end of the observation/medication period. RESULTS: Patients receiving mirabegron presented a statistically significant improvement in UI parameters. Their caregivers showed a statistically significant decrease in the ZBS total score as well as separate domains. CONCLUSION: This pilot study confirms that mirabegron administration can improve the quality of life of older females suffering from UI while substantially relieving caregiver burden. Recognizing the physical and emotional reactions of caregivers may help health providers deliver better support and resources to meet the needs of caregivers and patients alike.

Remotely delivered information, training and support for informal caregivers of people with dementia.

BACKGROUND: Many people with dementia are cared for at home by unpaid informal caregivers, usually family members. Caregivers may experience a range of physical, emotional, financial and social harms, which are often described collectively as caregiver burden. The degree of burden experienced is associated with characteristics of the caregiver, such as gender, and characteristics of the person with dementia, such as dementia stage, and the presence of behavioural problems or neuropsychiatric disturbances. It is a strong predictor of admission to residential care for people with dementia. Psychoeducational interventions might prevent or reduce caregiver burden. Overall, they are intended to improve caregivers' knowledge about the disease and its care; to increase caregivers' sense of competence and their ability to cope with difficult situations; to relieve feelings of isolation and allow caregivers to attend to their own emotional and physical needs. These interventions are heterogeneous, varying in their theoretical framework, components, and delivery formats. Interventions that are delivered remotely, using printed materials, telephone or video technologies, may be particularly suitable for caregivers who have difficulty accessing face-to-face services because of their own health problems, poor access to transport, or absence of substitute care. During the COVID-19 pandemic, containment measures in many countries required people to be isolated in their homes, including people with dementia and their family carers. In such circumstances, there is no alternative to remote delivery of interventions. OBJECTIVES: To assess the efficacy and acceptability of remotely delivered interventions aiming to reduce burden and improve mood and quality of life of informal caregivers of people with dementia. SEARCH METHODS: We searched the Specialised Register of the Cochrane Dementia and Cognitive Improvement Group, MEDLINE, Embase and four other databases, as well as two international trials registries, on 10 April 2020. We also examined the bibliographies of relevant review papers and published trials. SELECTION CRITERIA: We included only randomised controlled trials that assessed the remote delivery of structured interventions for informal caregivers who were providing care for people with dementia living at home. Caregivers had to be unpaid adults (relatives or members of the person's community). The interventions could be delivered using printed materials, the telephone, the Internet or a mixture of these, but could not involve any face-to-face contact with professionals. We categorised intervention components as information, training or support. Information interventions included two key elements: (i) they provided standardised information, and (ii) the caregiver played a passive role. Support interventions promoted interaction with other people (professionals or peers). Training interventions trained caregivers in practical skills to manage care. We excluded interventions that were primarily individual psychotherapy. Our primary outcomes were caregiver burden, mood, health-related quality of life and dropout for any reason. Secondary outcomes were caregiver knowledge and skills, use of health and social care resources, admission of the person with dementia to institutional care, and quality of life of the person with dementia. DATA COLLECTION AND ANALYSIS: Study selection, data extraction and assessment of the risk of bias in included studies were done independently by two review authors. We used the Template for Intervention Description and Replication (TIDieR) to describe the interventions. We conducted meta-analyses using a random-effects model to derive estimates of effect size. We used GRADE methods to describe our degree of certainty about effect estimates. MAIN RESULTS: We included 26 studies in this review (2367 participants). We compared (1) interventions involving training, support or both, with or without information (experimental interventions) with usual treatment, waiting list or attention control (12 studies, 944 participants); and (2) the same experimental interventions with provision of information alone (14 studies, 1423 participants). We downgraded evidence for study limitations and, for some outcomes, for inconsistency between studies. There was a frequent risk of bias from self-rating of subjective outcomes by participants who were not blind to the intervention. Randomisation methods were not always well-reported and there was potential for attrition bias in some studies. Therefore, all evidence was of moderate or low certainty. In the comparison of experimental interventions with usual treatment, waiting list or attention control, we found that the experimental interventions probably have little or no effect on caregiver burden (nine studies, 597 participants; standardised mean difference (SMD) -0.06, 95% confidence interval (CI) -0.35 to 0.23); depressive symptoms (eight studies, 638 participants; SMD -0.05, 95% CI -0.22 to 0.12); or health-related quality of life (two studies, 311 participants; SMD 0.10, 95% CI -0.13 to 0.32). The experimental interventions probably result in little or no difference in dropout for any reason (eight studies, 661 participants; risk ratio (RR) 1.15, 95% CI 0.87 to 1.53). In the comparison of experimental interventions with a control condition of information alone, we found that experimental interventions may result in a slight reduction in caregiver burden (nine studies, 650 participants; SMD -0.24, 95% CI -0.51 to 0.04); probably result in a slight improvement in depressive symptoms (11 studies, 1100 participants; SMD -0.25, 95% CI -0.43 to -0.06); may result in little or no difference in caregiver health-related quality of life (two studies, 257 participants; SMD -0.03, 95% CI -0.28 to 0.21); and probably result in an increase in dropouts for any reason (12 studies, 1266 participants; RR 1.51, 95% CI 1.04 to 2.20). AUTHORS' CONCLUSIONS: Remotely delivered interventions including support, training or both, with or without information, may slightly reduce caregiver burden and improve caregiver depressive symptoms when compared with provision of information alone, but not when compared with usual treatment, waiting list or attention control. They seem to make little or no difference to health-related quality of life. Caregivers receiving training or support were more likely than those receiving information alone to drop out of the studies, which might limit applicability. The efficacy of these interventions may depend on the nature and availability of usual services in the study settings.

ANTECEDENTES: Muchas personas con demencia son atendidas en casa por cuidadores informales no remunerados, generalmente miembros de la familia. Los cuidadores pueden sufrir una serie de efectos perjudiciales físicos, emocionales, económicos y sociales, que a menudo se describen colectivamente como una carga para el cuidador. El grado de carga que se experimenta está asociado con las características del cuidador, como el género, y con las características de la persona con demencia, como la etapa de la demencia, y la presencia de problemas de comportamiento o trastornos neuropsiquiátricos. Es un fuerte predictor del ingreso en una residencia para personas con demencia. Las intervenciones psicoeducativas pueden prevenir o reducir la carga del cuidador. En general, tienen como objetivo mejorar los conocimientos de los cuidadores sobre la enfermedad y su cuidado; aumentar el sentido de competencia de los cuidadores y su capacidad para afrontar situaciones difíciles; aliviar los sentimientos de aislamiento y permitir que los cuidadores atiendan sus propias necesidades emocionales y físicas. Estas intervenciones son heterogéneas y varían en su marco teórico, sus componentes y sus formatos de administración. Las intervenciones que se realizan a distancia, utilizando material impreso, el teléfono o las tecnologías de vídeo, pueden ser particularmente adecuadas para los cuidadores que tienen dificultades para acceder a los servicios de forma presencial debido a sus propios problemas de salud, al escaso acceso al transporte o a la falta de un cuidado alternativo. Durante la pandemia de covid­19, las medidas de contención en muchos países exigían que las personas estuvieran aisladas en sus hogares, incluidas las personas con demencia y sus familiares cuidadores. En tales circunstancias, no hay alternativa a la realización de intervenciones a distancia. OBJETIVOS: Evaluar la eficacia y la aceptabilidad de las intervenciones realizadas a distancia con el fin de reducir la carga y mejorar el estado de ánimo y la calidad de vida de los cuidadores informales de personas con demencia. MÉTODOS DE BÚSQUEDA: El 10 de abril de 2020 se realizaron búsquedas en el Registro especializado del Grupo Cochrane de Demencia y trastornos cognitivos (Cochrane Dementia and Cognitive Improvement Group), MEDLINE, Embase y otras cuatro bases de datos, así como en dos registros internacionales de ensayos. También se examinaron las bibliografías de documentos de revisión pertinentes y de ensayos publicados. CRITERIOS DE SELECCIÓN: Sólo se incluyeron los ensayos controlados aleatorizados que evaluaron la administración a distancia de intervenciones estructuradas para los cuidadores informales que atendían a personas con demencia que vivían en el domicilio. Los cuidadores debían ser adultos no remunerados (parientes o miembros de la comunidad de la persona). Las intervenciones se podían realizar utilizando materiales impresos, el teléfono, la internet o una mezcla de estos, pero no podían implicar un contacto presencial con profesionales. Los componentes de la intervención se clasificaron como información, formación o apoyo. Las intervenciones de información incluyeron dos elementos clave: i) proporcionaron información estandarizada, y ii) el cuidador desempeñaba un papel pasivo. Las intervenciones de apoyo promovieron la interacción con otras personas (profesionales o iguales). Las intervenciones de formación entrenaron a los cuidadores en habilidades prácticas para proporcionar la atención. Se excluyeron las intervenciones que consistieron principalmente en psicoterapia individual. Los desenlaces principales fueron la carga del cuidador, el estado de ánimo, la calidad de vida relacionada con la salud y el abandono por cualquier motivo. Los desenlaces secundarios fueron los conocimientos y aptitudes de los cuidadores, la utilización de los recursos de atención sanitaria y social, el ingreso de la persona con demencia en una institución y la calidad de vida de la persona con demencia. OBTENCIÓN Y ANÁLISIS DE LOS DATOS: Dos autores de la revisión realizaron de forma independiente la selección de los estudios, la extracción de los datos y la evaluación del riesgo de sesgo de los estudios incluidos. Se utilizó la Template for Intervention Description and Replication (TIDieR) para describir las intervenciones. Los metanálisis se realizaron mediante un modelo de efectos aleatorios para obtener las estimaciones del tamaño del efecto. Se utilizaron los métodos GRADE para describir el grado de certeza sobre las estimaciones del efecto. RESULTADOS PRINCIPALES: En esta revisión se incluyeron 26 estudios (2367 participantes). Se compararon (1) las intervenciones que incluyeron formación, apoyo o ambos, con o sin información (intervenciones experimentales) con el tratamiento habitual, una lista de espera o el control de la atención (12 estudios, 944 participantes); y (2) las mismas intervenciones experimentales con el suministro de información solamente (14 estudios, 1423 participantes). La calidad de la evidencia se redujo por las limitaciones de los estudios y, en el caso de algunos desenlaces, por la falta de consistencia entre los estudios. Hubo un riesgo frecuente de sesgo debido a la autocalificación de los desenlaces subjetivos por parte de participantes que no estaban cegados a la intervención. Los métodos de asignación al azar no siempre se informaron bien y hubo un posible sesgo de desgaste en algunos estudios. Por lo tanto, toda la evidencia fue de certeza moderada o baja. En la comparación de las intervenciones experimentales con el tratamiento habitual, una lista de espera o el control de la atención, se encontró que las intervenciones experimentales probablemente tienen poco o ningún efecto sobre la carga del cuidador (nueve estudios, 597 participantes; diferencia de medias estandarizada [DME] ­0,06; intervalo de confianza [IC] del 95%: ­0,35 a 0,23); los síntomas depresivos (ocho estudios, 638 participantes; DME ­0,05; IC del 95%: ­0,22 a 0,12) o la calidad de vida relacionada con la salud (dos estudios, 311 participantes; DME 0,10; IC del 95%: ­0,13 a 0,32). Las intervenciones experimentales probablemente dan lugar a poca o ninguna diferencia en el abandono por cualquier motivo (ocho estudios, 661 participantes; razón de riesgos [RR] 1,15; IC del 95%: 0,87 a 1,53). En la comparación de las intervenciones experimentales con una condición control de información sola, se encontró que las intervenciones experimentales pueden dar lugar a una leve reducción de la carga del cuidador (nueve estudios, 650 participantes; DME ­0,24; IC del 95%: ­0,51 a 0,04); probablemente dan lugar a una leve mejoría de los síntomas depresivos (11 estudios, 1100 participantes; DME ­0,25; IC del 95%: ­0,43 a ­0,06); podrían dar lugar a poca o ninguna diferencia en la calidad de vida relacionada con la salud de los cuidadores (dos estudios, 257 participantes; DME ­0,03; IC del 95%: ­0,28 a 0,21); y probablemente dé lugar a un aumento de los abandonos por cualquier motivo (12 estudios, 1266 participantes; RR 1,51; IC del 95%: 1,04 a 2,20). CONCLUSIONES DE LOS AUTORES: Las intervenciones realizadas a distancia, como el apoyo, la formación o ambas, con o sin información, podrían reducir ligeramente la carga del cuidador y mejorar los síntomas depresivos del cuidador en comparación con el suministro de información únicamente, pero no en comparación con el tratamiento habitual, una lista de espera o el control de la atención. Parecen dar lugar a poca o ninguna diferencia en la calidad de vida relacionada con la salud. Los cuidadores que recibieron formación o apoyo tuvieron más probabilidades de abandonar los estudios que los que recibieron sólo información, lo que podría limitar la aplicabilidad. La eficacia de esas intervenciones puede depender de la naturaleza y la disponibilidad de los servicios habituales en los ámbitos de estudio.

Co-design of an mHealth application for family caregivers of people with dementia to address functional disability care needs.

The co-design of a mobile health (mHealth) application for family caregivers of people with dementia to address functional disability care needs is presented. Participants included family caregivers of people with dementia, aged care nurses, physicians, occupational therapists, and information technology (IT) experts. The co-design process involved two phases: (1) needs assessment phase (an online survey and in-depth interviews with family caregivers and expert consultation); and (2) development of an mHealth application (content and prototype development). Data triangulation from phase one informed the content of the application. Data triangulation resulted in three content modules: "an overview of dementia and care," "management of daily living activities," and "caregivers' health and well-being." The content was based on contemporary literature, and care guidelines with input from family caregivers and dementia care experts. IT engineers developed the mHealth application. In this study, an Android-based mHealth application was designed to address the functional care needs of family caregivers and the co-design process ensured the incorporation of end-users' real-world experiences and the opinions and expertise of key stakeholders in the development of the application prototype.It is to be noted that before releasing the application into the app store, testing its feasibility and effectiveness is essential.

Burdensome Transitions of Care for Patients with End-Stage Liver Disease and Their Caregivers.

BACKGROUND: Patients with end-stage liver disease (ESLD) experience frequent readmissions; however, studies focused on patients' and caregivers' perceptions of their transitional care experiences to identify root causes of burdensome transitions of care are lacking. AIM: To explore the transitional care experiences of patients with ESLD and their caregivers in order to identify their supportive care needs. METHODS: We conducted interviews with 15 patients with ESLD and 14 informal caregivers. We used semi-structured interview guides to explore their experiences since the diagnosis of ESLD including their care transitions. Two raters coded interviews independently (κ = 0.95) using template analysis. RESULTS: Participants reported feeling unprepared to manage their informational, psychosocial, and practical care needs as they transitioned from hospital to home after the diagnosis of ESLD. Delay in the timely receipt of supportive care services addressing these care needs resulted in hospital readmissions, emotional distress, caregiver burnout, reduced work capacity, and financial hardship. Participants shared the following resources that they perceived would improve their quality of care: (1) discharge checklist, (2) online resources, (3) mental health support, (4) caregiver support and training, and (5) financial navigation. CONCLUSION: Transitional care models that attend to the informational, psychosocial, and practical domains of care are needed to better support patients with ESLD and their caregivers at the time of diagnosis and beyond. Without attending to the multidimensional care needs of newly diagnosed patients with ESLD and their caregivers, they are at risk of burdensome transitions of care, high healthcare utilization, and poor health-related quality of life.

Heart failure with preserved ejection fraction: disease burden for patients, caregivers, and the health-care system.

Heart failure with preserved ejection fraction (HFpEF) will soon become the most prevalent form of HF because of an aging population and an accompanying increase in the number of risk factors for this disease. The high frequency of comorbidities typical of this population contributes to an increased risk for hospitalization and death. It is also partially responsible for the symptomatic deterioration that results in hospitalization and impaired quality of life and functional capacity in patients. The effects of HFpEF are felt by patients and their caregivers, who might experience detriment to their own health and their social and working lives. Financial burden is associated with HFpEF, stemming from hospitalization and long-term care costs, as well as absenteeism from work in the case of caregivers. Early identification of patients at risk and aggressive management are key to preventing this disease and its progression.

Efficacy of cognitive-behavioural therapy interventions on reducing burden for caregivers of older adults with a neurocognitive disorder: a systematic review and meta-analysis.

By 2025, 34 million people worldwide will be living with Alzheimer's disease or another form of dementia (i.e., neurocognitive disorders). Symptoms of neurocognitive disorders have functional repercussions on daily activities. People with neurocognitive disorders often rely on a caregiver to alleviate the impact of their symptoms, but this help has consequences for the caregiver. Indeed, caregivers report subjective burden, depressive symptoms, stress, anxiety and a lower quality of life than non-caregivers. Multiple cognitive-behavioral therapy (CBT) trials have been conducted to reduce these symptoms for caregivers. No meta-analysis has been conducted to evaluate the efficacy of this type of intervention on reducing subjective burden. Articles were selected from PsycNet, MEDLINE, AgeLine and ProQuest Dissertation and Theses for the period from 2000 to 2017. Article selection, data extraction and bias analysis for individual studies were completed by two independent authors who used a consensus procedure when discrepancies occurred. A total of 20 articles were included in the systematic review. Ten studies evaluated the efficacy of CBT in reducing subjective burden, and the meta-analysis suggested a significant reduction in subjective burden following CBT. Additionally, 17 studies evaluated the efficacy in reducing depressive symptoms, and the meta-analysis revealed a significant reduction for these caregivers following CBT. CBT for caregivers of individuals with a neurocognitive disorder had no impact on stress, anxiety, or quality of life.

Quality of Life of Informal Caregivers behind the Scene of the COVID-19 Epidemic in Serbia.

Background and objectives: The COVID-19 pandemic has had an unprecedented reliance on informal caregivers as one of the pillars of healthcare systems. The aim of this study was to assess the quality of life of informal caregivers during the COVID-19 epidemic in Serbia. Materials and Methods: A cross-sectional study was conducted among informal caregivers during the COVID-19 epidemic in Serbia. Physical and mental quality of life was measured by the 36-Item Short-Form Health Survey. Additional data included sociodemographic characteristics, caregiver and care recipient characteristics, and COVID-19 related concerns. The qualitative component was performed using focus groups and individual in-depth interviews. Results: Out of 112 informal caregivers enrolled, most were female (80%), and the average age was 51.1 ± 12.3 years. The majority was delivering care to one person, who was a family member, on a daily basis (86.4%, 92%, and 91.1%, respectively). In multiple regression models, significant predictors of caregivers' physical health were delivering care to a family member and a higher level of care complexity, while significant predictors of caregivers' mental health were a higher level of care complexity and increased concerns about self-health and the health of the person being cared for due to the COVID-19 epidemic. Conclusions: Informal caregivers are experiencing negative physical and mental health outcomes during the COVID-19 epidemic in Serbia.

Psychoeducational intervention on burden and emotional well-being addressed to informal caregivers of people with dementia.

BACKGROUND: In dementia it is necessary that a family member become an informal caregiver. This labour has social, physical and emotional repercussions on the caregiver's health. The objective was to assesses the impact of the INFOSA-DEM intervention on burden and emotional well-being among caregivers of people with dementia, evaluating the effects at 3 and 6 months. METHOD: We adopted an experimental, non-randomised design with an intervention group and a control group. The intervention group received the intervention and the control group received usual care. The study was carried out in the catchment areas of three centres specialising in the care of people with cognitive impairment in the province of Barcelona. RESULTS: At 3 months, there was an improvement with respect to burden in the intervention group with a significant worsening (P < 0.012) in the control group. Similarly, a positive effect on emotional well-being was observed in the intervention group compared with a small negative effect among controls. CONCLUSIONS: Programs addressed to informal caregivers based on psychoeducational and cognitive-behavioural therapies are effective in improving quality of life and emotional well-being, and in reducing burden, with a positive effect on the quality of care provided at home.

Psychological Well-Being Among Informal Caregivers in the Canadian Longitudinal Study on Aging: Why the Location of Care Matters.

OBJECTIVES: A caregiving stress perspective suggests that caregiving harms psychological well-being in informal caregivers, whereas a caregiving rewards perspective suggests that provision of care benefits psychological well-being. This research examines whether both perspectives apply to caregiving experiences, but differently by the primary location of caregiving (i.e., in-home, other residence, and institution), as well as by gender. METHODS: We analyzed depression and life satisfaction in the nationally representative Canadian Longitudinal Study on Aging (N = 48,648), first comparing noncaregivers (N = 27,699) to a combined caregiver group (N = 20,949) and then stratifying caregivers by the primary location of care. RESULTS: When considered as a single group, caregivers suffered relative to noncaregivers in terms of life satisfaction and depression. When stratified by the location of care, only in-home caregivers reported both greater depression and lower life satisfaction. Nonresidential caregivers did not differ significantly in levels of depression from noncaregivers and reported higher life satisfaction. Institutional caregivers reported greater depression than noncaregivers, but did not differ significantly in life satisfaction. These patterns were stronger among women than men. DISCUSSION: Both the caregiving stress and caregiving rewards perspectives are applicable to the caregiving experience, with the stress perspective more applicable to in-home caregivers and the rewards perspective more relevant to nonresidential caregivers. Recommendations include targeted practice focused on the location of care as well as the gender of the caregiver. Given that nonresidential caregivers actually benefit from providing care, interventions need to focus on identifying and bolstering positive aspects of the caregiving experience.

Effects of a Psychoeducational Program on Caregivers of Patients with Dementia.

BACKGROUND: The number of demented patients has increased significantly in recent years. The many challenges that dementia causes increase the stress of their caregivers and lead to shortening the time to institutionalization compared to the general population. A psychoeducational program for these accompanying persons was set up in Brussels. This type of program resulted in a 557-day delay in institutionalization in New York City. The objective of our study was to check whether our program also has such an impact, but also to see its potential effect on the psychobehavioral disorders of patients and the burden of caregivers. METHODS: We recruited two groups without randomization: psychoeducated caregivers and caregivers interested in the program and contacted regularly (every 6 months) without having participated. They were all contacted by telephone and responded to the NCPI and Zarit Burden Scale (ZBS) questionnaires. RESULTS: We could not demonstrate any significant impact, either on the institutionalization delay (p = 0.960), on the frequency of psychobehavioral disorders in demented patients (p > 0.05), or on the burden of caregivers (p = 0.403). However, the survival rate among the demented patients with psychoeducated caregivers was significantly higher than that among the demented patients with nonpsychoeducated caregivers (p < 0.001). CONCLUSIONS: Our small-sample, nonrandomized study did not reveal any differences in institutionalization delay, caregiver burden, or perception of psychobehavioral disorders related to our psychoeducational program. A new study should be carried out on the impact of psychoeducation on the survival of demented patients, in view of our preliminary analyses.

TALKING TIME: A pilot randomized controlled trial investigating social support for informal caregivers via the telephone.

BACKGROUND: Caring for people with dementia at home requires considerable time, organization and commitment. Therefore, informal caregivers of people with dementia are often overburdened. This study examined the effects of the telephone-based Talking Time intervention, which is an approach used to strengthen the psychological health-related quality of life (HRQoL) and social support of informal caregivers of people with dementia living at home. METHODS: This study was a Medical Research Council framework phase two randomized controlled trial. The intervention consisted of a preliminary talk, information booklet, six structured telephone-based support group meetings and a structured written self-evaluation of each support group meeting. The control participants performed their usual individual self-organized care. After completing the data collection, the control group received the Talking Time intervention for fidelity reasons. The primary outcome was the self-rated psychological HRQoL of the informal caregivers, which was measured with the mental component summary of the General Health Survey Questionnaire Short Form 12 (SF-12). RESULTS: Thirty-eight informal caregivers and their relatives were included and allocated to the intervention or control groups (n = 19 each). After 3 months, the Talking Time intervention group demonstrated an increase in the self-rated psychological HRQoL scores, whereas the scores decreased in the control group. However, the standardized effect size of 1.65 (95% Confidence Interval, - 0.44 - 3.75) was not significant. Additionally, the secondary outcomes demonstrated no significant results. The differences between the groups in most outcomes were in the expected direction. No adverse effects were identified due to the intervention. CONCLUSIONS: The Talking Time intervention is feasible and shows nonsignificant promising results with regard to the self-rated psychological HRQoL. After further adjustment, the intervention needs to be evaluated in a full trial. TRIAL REGISTRATION: Clinical Trials: NCT02806583 , June 9, 2016 (retrospectively registered).

Family Caregiving for Individuals With Heart Failure: A Scientific Statement From the American Heart Association.

Many individuals living with heart failure (HF) rely on unpaid support from their partners, family members, friends, or neighbors as caregivers to help manage their chronic disease. Given the advancements in treatments and devices for patients with HF, caregiving responsibilities have expanded in recent decades to include more intensive care for increasingly precarious patients with HF-tasks that would previously have been undertaken by healthcare professionals in clinical settings. The specific tasks of caregivers of patients with HF vary widely based on the patient's symptoms and comorbidities, the relationship between patient and caregiver, and the complexity of the treatment regimen. Effects of caregiving on the caregiver and patient range from physical and psychological to financial. Therefore, it is critically important to understand the needs of caregivers to support the increasingly complex medical care they provide to patients living with HF. This scientific statement synthesizes the evidence pertaining to caregiving of adult individuals with HF in order to (1) characterize the HF caregiving role and how it changes with illness trajectory; (2) describe the financial, health, and well-being implications of caregiving in HF; (3) evaluate HF caregiving interventions to support caregiver and patient outcomes; (4) summarize existing policies and resources that support HF caregivers; and (5) identify knowledge gaps and future directions for providers, investigators, health systems, and policymakers.