Global, regional, and national minimum estimates of children affected by COVID-19-associated orphanhood and caregiver death, by age and family circumstance up to Oct 31, 2021: an updated modelling study.

BACKGROUND: In the 6 months following our estimates from March 1, 2020, to April 30, 2021, the proliferation of new coronavirus variants, updated mortality data, and disparities in vaccine access increased the amount of children experiencing COVID-19-associated orphanhood. To inform responses, we aimed to model the increases in numbers of children affected by COVID-19-associated orphanhood and caregiver death, as well as the cumulative orphanhood age-group distribution and circumstance (maternal or paternal orphanhood). METHODS: We used updated excess mortality and fertility data to model increases in minimum estimates of COVID-19-associated orphanhood and caregiver deaths from our original study period of March 1, 2020-April 30, 2021, to include the new period of May 1-Oct 31, 2021, for 21 countries. Orphanhood was defined as the death of one or both parents; primary caregiver loss included parental death or the death of one or both custodial grandparents; and secondary caregiver loss included co-residing grandparents or kin. We used logistic regression and further incorporated a fixed effect for western European countries into our previous model to avoid over-predicting caregiver loss in that region. For the entire 20-month period, we grouped children by age (0-4 years, 5-9 years, and 10-17 years) and maternal or paternal orphanhood, using fertility contributions, and we modelled global and regional extrapolations of numbers of orphans. 95% credible intervals (CrIs) are given for all estimates. FINDINGS: The number of children affected by COVID-19-associated orphanhood and caregiver death is estimated to have increased by 90·0% (95% CrI 89·7-90·4) from April 30 to Oct 31, 2021, from 2 737 300 (95% CrI 1 976 100-2 987 000) to 5 200 300 (3 619 400-5 731 400). Between March 1, 2020, and Oct 31, 2021, 491 300 (95% CrI 485 100-497 900) children aged 0-4 years, 736 800 (726 900-746 500) children aged 5-9 years, and 2 146 700 (2 120 900-2 174 200) children aged 10-17 years are estimated to have experienced COVID-19-associated orphanhood. Globally, 76·5% (95% CrI 76·3-76·7) of children were paternal orphans, whereas 23·5% (23·3-23·7) were maternal orphans. In each age group and region, the prevalence of paternal orphanhood exceeded that of maternal orphanhood. INTERPRETATION: Our findings show that numbers of children affected by COVID-19-associated orphanhood and caregiver death almost doubled in 6 months compared with the amount after the first 14 months of the pandemic. Over the entire 20-month period, 5·0 million COVID-19 deaths meant that 5·2 million children lost a parent or caregiver. Our data on children's ages and circumstances should support pandemic response planning for children globally. FUNDING: UK Research and Innovation (Global Challenges Research Fund, Engineering and Physical Sciences Research Council, and Medical Research Council), Oak Foundation, UK National Institute for Health Research, US National Institutes of Health, and Imperial College London.

Global minimum estimates of children affected by COVID-19-associated orphanhood and deaths of caregivers: a modelling study.

BACKGROUND: The COVID-19 pandemic priorities have focused on prevention, detection, and response. Beyond morbidity and mortality, pandemics carry secondary impacts, such as children orphaned or bereft of their caregivers. Such children often face adverse consequences, including poverty, abuse, and institutionalisation. We provide estimates for the magnitude of this problem resulting from COVID-19 and describe the need for resource allocation. METHODS: We used mortality and fertility data to model minimum estimates and rates of COVID-19-associated deaths of primary or secondary caregivers for children younger than 18 years in 21 countries. We considered parents and custodial grandparents as primary caregivers, and co-residing grandparents or older kin (aged 60-84 years) as secondary caregivers. To avoid overcounting, we adjusted for possible clustering of deaths using an estimated secondary attack rate and age-specific infection-fatality ratios for SARS-CoV-2. We used these estimates to model global extrapolations for the number of children who have experienced COVID-19-associated deaths of primary and secondary caregivers. FINDINGS: Globally, from March 1, 2020, to April 30, 2021, we estimate 1 134 000 children (95% credible interval 884 000-1 185 000) experienced the death of primary caregivers, including at least one parent or custodial grandparent. 1 562 000 children (1 299 000-1 683 000) experienced the death of at least one primary or secondary caregiver. Countries in our study set with primary caregiver death rates of at least one per 1000 children included Peru (10·2 per 1000 children), South Africa (5·1), Mexico (3·5), Brazil (2·4), Colombia (2·3), Iran (1·7), the USA (1·5), Argentina (1·1), and Russia (1·0). Numbers of children orphaned exceeded numbers of deaths among those aged 15-50 years. Between two and five times more children had deceased fathers than deceased mothers. INTERPRETATION: Orphanhood and caregiver deaths are a hidden pandemic resulting from COVID-19-associated deaths. Accelerating equitable vaccine delivery is key to prevention. Psychosocial and economic support can help families to nurture children bereft of caregivers and help to ensure that institutionalisation is avoided. These data show the need for an additional pillar of our response: prevent, detect, respond, and care for children. FUNDING: UK Research and Innovation (Global Challenges Research Fund, Engineering and Physical Sciences Research Council, Medical Research Council), UK National Institute for Health Research, US National Institutes of Health, and Imperial College London.

Changes in the balance between formal and informal care supply in England between 2001 and 2011: evidence from census data.

Informal care plays a crucial role in the social care system in England and is increasingly recognised as a cornerstone of future sustainability of the long-term care (LTC) system. This paper explores the variation in informal care provision over time, and in particular, whether the considerable reduction in publicly-funded formal LTC after 2008 had an impact on the provision of informal care. We used small area data from the 2001 and 2011 English censuses to measure the prevalence and intensity (i.e. the number of hours of informal care provided) of informal care in the population. We controlled for changes in age structure, health, deprivation, income, employment and education. The effects of the change in formal social care provision on informal care were analysed through instrumental variable models to account for the well-known endogeneity. We found that informal care provision had increased over the period, particularly among high-intensity carers (20+ hours per week). We also found that the reduction in publicly-funded formal care provision was associated with significant increases in high-intensity (20+ hours per week) informal care provision, suggesting a substitutive relationship between formal and informal care of that intensity in the English system.

Caring for Chronically Ill Older Adults: A View Over the Last 75 Years.

We explore major trends over the last 75 years that affect care provision to chronically ill older adults. We examine shifting demographics that have altered the nature and dynamics of family and formal care systems. Next, we identify changes in clinical health care approaches, including the rising population of chronically ill older persons and concerns about continuity of care. We conclude with an assessment of the growing impact of the technological revolution on both family and professional care.

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.

Developing and Sustaining an Effective and Resilient Oncology Careforce: Opportunities for Action.

Advances in cancer care have led to improved survival, which, coupled with demographic trends, have contributed to rapid growth in the number of patients needing cancer care services. However, with increasing caseload, care complexity, and administrative burden, the current workforce is ill equipped to meet these burgeoning new demands. These trends have contributed to clinician burnout, compounding a widening workforce shortage. Moreover, family caregivers, who have unique knowledge of patient preferences, symptoms, and goals of care, are infrequently appreciated and supported as integral members of the oncology "careforce." A crisis is looming, which will hinder access to timely, high-quality cancer care if left unchecked. Stemming from the proceedings of a 2019 workshop convened by the National Cancer Policy Forum of the National Academies of Sciences, Engineering, and Medicine, this commentary characterizes the factors contributing to an increasingly strained oncology careforce and presents multilevel strategies to improve its efficiency, effectiveness, and resilience. Together, these will enable today's oncology careforce to provide high-quality care to more patients while improving the patient, caregiver, and clinician experience.

Women Caring for Our Aging in Place Seniors Will Lose Out because of U.S. Immigration Policies.

Most older people experiencing chronic health problems, physical disabilities, and memory losses are still able to age in place in their own homes. However, they often need help from others to enjoy healthy, active, and independent lives. They turn mostly to family members, mainly women and usually their daughters, daughters-in-law or wives. But caring for frail elders has become more demanding and complex, and these family members often feel physically and emotionally overwhelmed and burnt out. They concede that they cannot do it alone. Others find it more difficult to hold full-or even part-time jobs. Hiring home (direct) care workers to assist their loved ones can be an effective solution to ease their caregiving responsibilities. However, these personal care aides, home health aides, and nursing assistants are already in short supply. Moreover, going forward the aging of the baby boomer population will result in an even greater demand for their services even as these jobs are often unattractive to American-born workers and turnover is high. This country's immigration policies will make it even more difficult for women caring for older persons to hire these workers. Over 25 percent of home care workers are low-skilled immigrants or foreign-born. However, the Trump administration's policies reduce the number of immigrants entering the U.S. and specifically choke off the various pathways that enable low-skilled persons to be hirable in the home care sector. Female caregivers seeking relief from their caregiving responsibilities will lose out unless we remove these immigration barriers.

Care Configurations and Unmet Care Needs in Older Men and Women.

Older adults frequently experience adverse consequences as the result of unmet care needs, including not getting dressed and going without food when hungry. Previous studies have noted that characteristics of the caregiver network may be associated with unmet needs. Using National Health and Aging Trends Study data, I modeled the association between care configurations and unmet needs for men and women. In generalized linear models, formal care was not associated with unmet need among women or men. Compared with recipients of spousal care, men receiving care from one nonspousal caregiver, and men and women receiving care from any other configuration, had higher odds of unmet needs. The level of difficulty with daily tasks was strongly associated with unmet needs. These findings support monitoring older adults not receiving spousal care, increasing access to formal care, and regularly assessing level of difficulty with daily tasks in clinical and research settings.

Sobrecarga del cuidador informal de adultos mayores internados en el servicio de clínica médica del hospital Geriátrico "Juana Francisca Cabral". Año 2018 / Overload of the informal caregiver of older adults admitted to the medical clinic service of the "Juana Francisca Cabral" Geriatric Hospital. Year 2018

Introducción: El incremento en las tasas de supervivencia a enfermedades crónicas y discapacidades físicas o psíquicas, ha elevado el número de personas dedicadas a cuidar de familiares enfermos. Asistir a una persona envejecida dependiente es una tarea difícil de gran responsabilidad, que demanda actividades para las que no se está preparado, que no siempre son agradables. La carga es percibida por los cuidadores de diferentes maneras, en función al rol del cuidador Objetivo: Describir la existencia de sobrecarga en cuidadores informales de adultos mayores internados en el hospital geriátrico de agudos "Juana Francisca Cabral" entre agosto a octubre de 2018. Material y métodos: Estudio cuantitativo descriptivo, transversal. Se aplico instrumento de recolección de datos, durante agosto, septiembre del 2018, en servicio de internación de agudos. Resultado: En muestra conformada por 67 cuidadores informales. se observó edad promedio de 43 años, predominaba el sexo femenino con el 58%. Prevalecían hijos, parejas que son quienes proporcionan los cuidados. La mayoría de los cuidadores no presentaban capacitación para el cuidado del adulto mayor. Según el nivel de instrucción el 52% había concluido los estudios secundarios. El 43% consideraba como buena su salud. Según el nivel de sobrecarga de los cuidadores informales el 70% de los cuidadores presentaba sobrecarga. Conclusión: Se observa con frecuencia pacientes dependendientes, donde 7 de 10 cuidadores presentan sobrecarga percibiendo su salud como buena a regular y no hay relación entre el tiempo del cuidado y sobrecarga, ya que no se evidencia que a mayor tiempo de cuidado presenten sobrecarga

Abstract: The increase in the rates of survival to chronic diseases and physical or mental disabilities has increased the number of people dedicated to caring for sick family members. Assisting a dependent elderly person is a difficult task of great responsibility, which demands activities for which one is not prepared and which are not always pleasant. Objective: To describe the existence of overload in informal caregivers of elderly people interned in the "Juana Francisca Cabral" geriatric acute care hospital during the period from August to October 2018. Material and methods: This is a quantitative, descriptive, prospective, cross-sectional study. The sample consisted of 67 informal caregivers. Result: an average age of 43 years was observed, 58% of the caregivers were female. In terms of kinship, 39% belonged to the child category. It was found that 99% did not have any training towards the care of the elderly. According to the level of education, 52% had finished secondary school. 43% considered their health "good" According to the level of overload of the informal caregivers, 40% of the caregivers presented slight overload, while 30% of the overloading was intense. Conclusion: A patient with dependence is observed with great frequency, where 7 out of 10 caregivers present overload perceiving their health as good to be regular and we identify that there is no relationship between the time of care and overload, since it is not evident that a longer time of Beware of overload

The effect of informal caregiver support on utilization of acute health services among home care clients: a prospective observational study.

BACKGROUND: Emergency department visits and hospitalizations (EDVH) place a large burden on patients and the health care system. The presence of informal caregivers may be beneficial for reducing EDVH among patients with specific diagnoses. Our objective was to determine whether the presence of an informal caregiver was associated with the occurrence of an EDVH among clients 50 years of age or older. METHODS: Using a database accessed through the Toronto Central Community Care Access Centre (CCAC), we identified 479 adults over 50 years of age who received home care in Toronto, Canada. Exposure variables were extracted from the interRAI health assessment form completed at the time of admission to the CCAC. EDVH data were linked to provincial records through the CCAC database. Data on emergency room visits were included for up to 6 months after time of admission to home care. Multiple logistic regression analysis was used to identify factors associated with the occurrence of an EDVH. RESULTS: Approximately half of all clients had an EDVH within 180 days of admission to CCAC home care. No significant association was found between the presence of an informal caregiver and the occurrence of an EDVH. Significant factors associated with an EDVH included: Participants having a poor perception of their health (adjusted OR = 1.68, 95% CI: 1.11-2.56), severe cardiac disorders (adjusted OR = 1.54, 95% CI: 1.04-2.29), and pulmonary diseases (adjusted OR = 1.99, 95% CI: 1.16-3.47). CONCLUSIONS: The presence of an informal caregiver was not significantly associated with the occurrence of an EDVH. Future research should examine the potential associations between length of hospital stay or quality of life and the presence of an informal caregiver. In general, our work contributes to a growing body of literature that is increasingly concerned with the health of our aging population, and more specifically, health service use by elderly patients, which may have implications for health care providers.

Care for Child Development: an intervention in support of responsive caregiving and early child development.

BACKGROUND: An estimated 43% of children younger than 5 years of age are at elevated risk of failing to achieve their human potential. In response, the World Health Organization and UNICEF developed Care for Child Development (CCD), based on the science of child development, to improve sensitive and responsive caregiving and promote the psychosocial development of young children. METHODS: In 2015, the World Health Organization and UNICEF identified sites where CCD has been implemented and sustained. The sites were surveyed, and responses were followed up by phone interviews. Project reports provided information on additional sites, and a review of published studies was undertaken to document the effectiveness of CCD for improving child and family outcomes, as well as its feasibility for implementation in resource-constrained communities. RESULTS: The inventory found that CCD had been integrated into existing services in diverse sectors in 19 countries and 23 sites, including child survival, health, nutrition, infant day care, early education, family and child protection and services for children with disabilities. Published and unpublished evaluations have found that CCD interventions can improve child development, growth and health, as well as responsive caregiving. It has also been reported to reduce maternal depression, a known risk factor for poor pregnancy outcomes and poor child health, growth and development. Although CCD has expanded beyond initial implementation sites, only three countries reported having national policy support for integrating CCD into health or other services. CONCLUSIONS: Strong interest exists in many countries to move beyond child survival to protect and support optimal child development. The United Nations Sustainable Development Goals depend on children realizing their potential to build healthy and emotionally, cognitively and socially competent future generations. More studies are needed to guide the integration of the CCD approach under different conditions. Nevertheless, the time is right to provide for the scale-up of CCD as part of services for families and children.

Caregiver availability for severe stroke results in improved functional ability at discharge from inpatient rehabilitation.

PURPOSE: To evaluate the predictive capacity of caregiver availability on functional ability at time of discharge from inpatient rehabilitation in individuals with severe first-time stroke. METHODS: A retrospective chart review was conducted of severe stroke inpatients admitted to a stroke rehabilitation unit between April 2005 and December 2009. Follow-up telephone interviews were conducted with patients to determine caregiver availability at time of discharge. Hierarchical linear regression analysis was performed to assess the predictive capacity of caregiver availability on functional ability at discharge from an inpatient rehabilitation unit after controlling for covariates. RESULTS: Data from 180 individuals were included in the analysis. Individuals with a caregiver had significantly higher levels of functional ability at discharge compared to those without (85.8 ± 23.6 versus 72.9 ± 20.3; p < 0.01), although both groups achieved a minimal clinically important difference. After controlling for age, gender, admission Functional Independence Measure, and length of hospital stay, caregiver availability explained 1.3% of additional variance, with the final model explaining 41.3% of total variance for functional ability at discharge (F (5,174) = 26.21, p < 0.001). CONCLUSIONS: The presence of a caregiver at time of discharge from inpatient rehabilitation is predictive of significantly higher functional ability at discharge in individuals with severe stroke. Implications for rehabilitation The availability of a caregiver at time of discharge from inpatient rehabilitation is predictive of improved functional ability at discharge in individuals with severe stroke. The presence of an available caregiver positively influences the functional recovery of individuals with severe stroke and may be an important element to successful rehabilitation.

Development of an optimised key worker framework for people with dementia, their family and caring unit living in the community.

BACKGROUND: In Australia, dementia is a national health priority. With the rising number of people living with dementia and shortage of formal and informal carers predicted in the near future, developing approaches to coordinating services in quality-focused ways is considered an urgent priority. Key worker support models are one approach that have been used to assist people living with dementia and their caring unit coordinate services and navigate service systems; however, there is limited literature outlining comprehensive frameworks for the implementation of community dementia key worker roles in practice. In this paper an optimised key worker framework for people with dementia, their family and caring unit living in the community is developed and presented. METHODS: A number of processes were undertaken to inform the development of a co-designed optimised key worker framework: an expert working and reference group; a systematic review of the literature; and a qualitative evaluation of 14 dementia key worker models operating in Australia involving 14 interviews with organisation managers, 19 with key workers and 15 with people living with dementia and/or their caring unit. Data from the systematic review and evaluation of dementia key worker models were analysed by the researchers and the expert working and reference group using a constant comparative approach to define the essential components of the optimised framework. RESULTS: The developed framework consisted of four main components: overarching philosophies; organisational context; role definition; and key worker competencies. A number of more clearly defined sub-themes sat under each component. Reflected in the framework is the complexity of the dementia journey and the difficulty in trying to develop a 'one size fits all' approach. CONCLUSIONS: This co-designed study led to the development of an evidence based framework which outlines a comprehensive synthesis of components viewed as being essential to the implementation of a dementia key worker model of care in the community. The framework was informed and endorsed by people living with dementia and their caring unit, key workers, managers, Australian industry experts, policy makers and researchers. An evaluation of its effectiveness and relevance for practice within the dementia care space is required.

Dementia prevalence, care arrangement, and access to care in Lebanon: A pilot study.

INTRODUCTION: In North Africa and the Middle East, studies about dementia prevalence are scarce. A pilot study was conducted in Lebanon to assess dementia prevalence, using the Arabic-validated 10/66 Dementia Research Group (DRG) diagnostic assessment for case ascertainment. The study also examined care arrangement and access to care. METHODS: A random sample of 502 persons older than 65 years and their informant were recruited from Beirut and Mount Lebanon governorates through multistage cluster sampling. RESULTS: The crude and age-standardized dementia prevalences were 7.4% and 9.0%, respectively. People with dementia were mainly cared for by relatives at home. Access to formal care was very limited. DISCUSSION: Dementia prevalence in Lebanon ranks high within the global range of estimates. These first evidence-based data about disease burden and barriers to care serve to raise awareness and call for social and health care reform to tackle the dementia epidemic in Lebanon and in North Africa and the Middle East.

Stakeholder Meeting: Integrated Knowledge Translation Approach to Address the Caregiver Support Gap.

Family caregivers are an integral and increasingly overburdened part of the health care system. There is a gap between what research evidence shows is beneficial to caregivers and what is actually provided. Using an integrated knowledge translation approach, a stakeholder meeting was held among researchers, family caregivers, caregiver associations, clinicians, health care administrators, and policy makers. The objectives of the meeting were to review current research evidence and conduct multi-stakeholder dialogue on the potential gaps, facilitators, and barriers to the provision of caregiver supports. A two-day meeting was attended by 123 individuals. Three target populations of family caregivers were identified for discussion: caregivers of seniors with dementia, caregivers in end-of-life care, and caregivers of frail seniors with complex health needs. The results of this meeting can and are being used to inform the development of implementation research endeavours and policies targeted at providing evidence-informed caregiver supports.

Gerontological Social Work Student-Delivered Respite: A Community-University Partnership Pilot Program.

This study describes a community-university partnership to support a gerontological social work student-delivered respite program, the Houseguest Program (Houseguest). Houseguest was designed using a community-engaged scholarship model of integrating research, teaching, and service. Houseguest was piloted with a small group of community-dwelling, coresiding dementia caregivers and care recipients. We examined caregivers' experiences with student-delivered respite using qualitative data analysis. Thematic analysis produced 8 themes: (a) respite from full time caregiving role, (b) information on caregiving strategies, (c) no-cost supportive services, (d) opportunity for care recipients to socialize, (e) tailored activities for care recipients, (f) rapport-building between students and family dyad, (g) reciprocity between students and family dyad, and (h) program continuation. We conclude with a proposed community-engaged scholarship model for dementia caregiving. Through a community-university partnership, Houseguest reduced the impact of caregiver burden and created an opportunity for students to serve families affected by dementia through respite and tailored activities.

Palliative care needs and symptoms of nursing home residents with and without dementia: A cross-sectional study.

AIM: The aims of the present study were: (i) to describe palliative care needs and symptoms of older adults anticipated to be in the last year of their life in Flemish nursing homes (Belgium); and (ii) to evaluate whether these needs differ between residents with and without dementia. METHODS: A cross-sectional study was carried out in 2014. Nurses and nursing assistants in 15 Flemish nursing homes (Belgium) completed the Palliative care Outcome Scale for 109 residents with palliative care needs. RESULTS: Pain, as well as other physical symptoms, was present in more than half of the nursing home residents according to caregivers. The most prominent needs occurred on psychosocial and spiritual domains, such as patient anxiety, support, finding life worth living and self-worth. Caregivers reported that residents with dementia experienced fewer physical symptoms apart from pain than did residents without dementia (coeffficient -0.73, 95% CI -1.18-0.84; P = 0.001. Furthermore, residents with dementia received higher scores on the items "support" (coefficient 0.75; 95% CI 0.15-1.34, P = 0.015), "life worthwhile" (coeffficient 0.58; 95% CI 0.090-1.07, P = 0.020) and "self-worth" (coefficient 0.58, 95% CI 0.13-1.03, P = 0.012). CONCLUSIONS: According to caregivers, residents with dementia experienced fewer other physical symptoms (e.g. nausea) than residents without dementia. This, however, might be a result of an underdetection of other symptoms in nursing home residents with dementia. Furthermore, most challenges in nursing homes lie within the spiritual and psychosocial domains of palliative care, particularly in people with dementia. These aspects should be integrated in the professional education of caregivers. Assessment tools might be of help to improve the identification of needs and symptoms. Geriatr Gerontol Int 2017; 17: 1501-1507.