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.

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.

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.

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.

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.

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.

Caregiver Shortage Reaches Critical Stage.

Stronger economy and shifting demographics put providers in bind in search for workers.

Alzheimer's and other dementias in Canada, 2011 to 2031: a microsimulation Population Health Modeling (POHEM) study of projected prevalence, health burden, health services, and caregiving use.

BACKGROUND: Worldwide, there is concern that increases in the prevalence of dementia will result in large demands for caregivers and supportive services that will be challenging to address. Previous dementia projections have either been simple extrapolations of prevalence or macrosimulations based on dementia incidence. METHODS: A population-based microsimulation model of Alzheimer's and related dementias (POHEM:Neurological) was created using Canadian demographic data, estimates of dementia incidence, health status (health-related quality of life and mortality risk), health care costs and informal caregiving use. Dementia prevalence and 12 other measures were projected to 2031. RESULTS: Between 2011 and 2031, there was a projected two-fold increase in the number of people living with dementia in Canada (1.6-fold increase in prevalence rate). By 2031, the projected informal (unpaid) caregiving for dementia in Canada was two billion hours per year, or 100 h per year per Canadian of working age. CONCLUSIONS: The projected increase in dementia prevalence was largely related to the expected increase in older Canadians, with projections sensitive to changes in the age of dementia onset.

HOLD study (Home care Obstructive Lung Disease): natural history of patients with advanced COPD.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is the fourth cause of death in western countries. Its final stage has clearly been forgotten by medical research in recent years. There exists consensus regarding the need to integrate palliative care in assisting these patients, but the difficulty in establishing a prognosis for the disease, establishing limits for life support measures, the lack of information about the disease's natural course and ignorance as to the most effective health-care structure for these patients' palliative treatment may be responsible for their late inclusion or non-inclusion in specific programmes. The main purpose of this work is to find out the natural background of patients with stage IV COPD and the main prognostic factors that influence these patients' survival. METHODS/DESIGN: Prospective observational study of a home patient cohort with stage IV COPD sent from Neumology consultations and Palliative Care Unit in La Paz Hospital in Madrid and Primary Care Health Centres in the area to the palliative care home support team. The goal is to study socio-demographic variables, prognosis, nutritional status, use of health resources, perceived quality of life, functionality, main symptomatology, use and effectiveness of opioids, adherence to treatment, prognostic information regarding the disease, information given by professionals, advance directives, social backup requirements and overburden level of the main caregiver. DISCUSSION: The HOLD study is a project aimed at finding out the prognostic factors and evolution of the disease COPD in its most advanced stage. The final goal is to improve the health and quality of life, in a personalised, integral way up to end of life and explore and foster communication with patients, as well as their participation and collaboration in decision-taking. The HOLD study can help us better understand what these patients' real palliative and care needs are, in order to more efficiently organise their treatment at end of life.

Long-term Care Insurance and Carers' Labor Supply - A Structural Model.

In Germany, individuals in need of long-term care receive support through benefits of the long-term care insurance. A central goal of the insurance is to support informal care provided by family members. Care recipients can choose between benefits in kind (formal home care services) and benefits in cash. From a budgetary perspective, family care is often considered a cost-saving alternative to formal home care and to stationary nursing care. However, the opportunity costs resulting from reduced labor supply of the carer are often overlooked. We focus on the labor supply decision of family carers and the incentives set by the long-term care insurance. We estimate a structural model of labor supply and the choice of benefits of family carers. We find that benefits in kind have small positive effects on labor supply. Labor supply elasticities of cash benefits are larger and negative. If both types of benefits increase, negative labor supply effects are offset to a large extent. However, the average effect is significantly negative.

[Home after a stroke; 'that's when it really begins'. A qualitative study into the needs for aftercare of stroke patients after being discharged home]. / Thuis na een CVA: 'Dan begint het pas'. Een kwalitatief onderzoek naar de behoefte aan nazorg van CVA-patiënten na terugkeer naar huis.

AIM: To explore stroke patients needs of care after discharge from hospital or rehabilitation facility. METHOD: Semi-structured interviews with twenty stroke patients and their partners in the region Midden-Kennemerland in the Netherlands. RESULTS: 'That's when it really begins'; at home it becomes clear what the real consequences of the stroke are on daily life. After returning home patients would have liked to (1) have had more information/support and they have a need for support for a long time after their stroke; (2) have had the possibility to get support later on (after having said 'no' in the first place). On the other hand there are (3) patients who are inclined to search for solutions by themselves. CONCLUSION: Only after returning home stroke patients and their partners can really assess what their need for care is. Therefore the need for care of stroke patients should be assessed after a period of time after the patients return home. The care should be available for a long time after the stroke. Because patients don't realize that they can get help for the neuropsychological consequences, it is important that the initiative to organize the care lies in the hands of the caregivers.

An apocalyptic vision of ageing in China: Old age care for the largest elderly population in the world.

According to the National Bureau of Statistics of China, by 2010 the number of people aged 60 or over had reached 178 million in China or 13% of its population. With the largest elderly population in the world in absolute numbers, China faces a challenge of providing care for the elderly both in the present and the future. Unlike old age pensions and health protection for the elderly, in Chinese society elderly care had never been considered to be a social problem but rather the individual family's responsibility. After the turn of the millennium, as the repercussions of increasingly ageing demographics, the results of the One-Child Policy and drastic changes in traditional family structures gradually became more apparent, this issue of elderly care has increasingly become one of the most pressing concerns for the ageing society. As there is little existing research on this particular topic, this article aims to shed light on elderly care in China, focusing on the care of elderly needing assistance with activities of daily living, since this group of elderly are most in need of care, their numbers having risen to 33 million in 2010. This article argues it is urgent for China to switch from informal family-based elderly care to the state's formal long-term care, illustrates that a model of social insurance (e.g. as in Germany) is advocated by many Chinese scholars and points out the ways in which it is different from both the commercialized models (e.g. as in the USA) and state organized "Beveridge" models (e.g. as in Sweden).

Disability and care needs among older Americans.

CONTEXT: The cost of late-life dependency is projected to grow rapidly as the number of older adults in the United States increases in the coming decades. To provide a context for framing relevant policy discussions, we investigated activity limitations and assistance, care resources, and unmet need for a national sample of older adults. METHODS: We analyzed the 2011 National Health and Aging Trends Study, a new national panel study of more than 8,000 Medicare enrollees. FINDINGS: Nearly one-half of older adults, or 18 million people, had difficulty or received help in the last month with daily activities. Altogether, 1 in 4 older adults receiving help lived in either a supportive care (15%) or a nursing home (10%) setting. Nearly 3 million received assistance with 3 or more self-care or mobility activities in settings other than nursing homes, and a disproportionate share of persons at this level had low incomes. Nearly all older adults in settings other than nursing homes had at least 1 potential informal care network member (family or household member or close friend), and the average number of network members was 4. Levels of informal assistance, primarily from family caregivers, were substantial for older adults receiving help in the community (164 hours/month) and living in supportive care settings (50 hours/month). Nearly all of those getting help received informal care, and about 3 in 10 received paid care. Of those who had difficulty or received help in settings other than nursing homes, 32% had an adverse consequence in the last month related to an unmet need; for community residents with a paid caregiver, the figure was nearly 60%. CONCLUSIONS: The older population-especially those with few economic resources-has substantial late-life care needs. Policies to improve long-term services and supports and reduce unmet need could benefit both older adults and those who care for them.

Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources.

BACKGROUND: Approximately 10% of the UK population have an unpaid caring role for a family member or friend. Many of these carers make a significant contribution to supporting patients at the end of life. Carers can experience poor physical and psychosocial wellbeing, yet they remain largely unsupported by health and social care services. Despite initiatives for general practices to identify carers and their needs, many remain unidentified. Neither are carers self-identifying and requesting support. This study set out to explore the barriers to, and consider strategies for, identifying carers in primary care. METHODS: We integrated findings from three data sources - a review of the caregiving literature; a workshop with researchers who have undertaken research with those caring at the end of life, and focus groups with carers and health professionals. RESULTS: Three categories of barrier emerged. 1) Taking on the care of another person is often a gradual process, carers did not immediately identify with being a 'carer' - preferring to think of themselves in relational terms to the patient e.g. spouse, sibling, son or daughter. Often it was health and social care professionals who encouraged carers to consider themselves as an unpaid carer. 2) As the cared-for person's condition deteriorated, the caring role often became all-encompassing so that carers were managing competing demands, and felt unable to look after their own needs as well as those of the cared-for person. 3) There was ambiguity about the legitimacy of carer needs and about the role of the primary health care team in supporting carers, from both the perspective of the carers and the health professionals. GPs were thought to be reactive rather than proactive which discouraged carers from asking for help. CONCLUSIONS: The needs of carers have to be legitimised to ensure primary care staff are proactive in their approach and carers are empowered to utilise the support available. Strategies to identify carers have to be sensitive to the complex dynamics of a caring relationship as well as the primary care context. Identification is a key factor in improving support for carers themselves and to enable them to support the patient.

Availability of informal caregivers in surviving stroke patients in Belgium.

OBJECTIVE: To quantify the availability of informal caregivers in surviving stroke patients residing at home in Belgium. METHODS: National estimates on the availability of informal caregivers were made using data from a nationwide observational registration of family physicians working in sentinel practices and a nationwide administrative database for reimbursement of hospitals in Belgium. RESULTS: A total of 189 Belgian family physicians (FPs) from 141 practices participated in the study and recorded 326 patients (144 men and 182 women) with stroke. These FPs reach 1.5% of the Belgian population. After 1 month, 71% of the male and 75% of the female stroke survivors received support from family caregivers (p = 0.547). After 6 months, the percentage of male patients who received support from family caregivers decreased to 60% compared with 75% in female (p = 0.038). Of all patients with stroke admitted to Belgian hospitals during the reference year 2009 (n = 16.437), 8.997 returned home. Based on the findings from the sentinel practices, it is estimated that a mean of 73% (n = 6.568) and 67.5% (n = 6.073) of surviving patients with stroke can rely on informal caregivers in their home setting after one and 6 months, respectively. CONCLUSIONS: A vast majority of surviving stroke patients in Belgium can rely on informal caregivers in their home setting, but their availability rapidly decreases 6 months after the event. These findings underline the importance of proactive health policy making in stroke care taking into account the potentially decreasing number of available informal caregivers in the decades to come.

Long-term care for elder women in Spain: advances and limitations.

In Spain, elder women are the largest group in need of long-term care. Significant improvements in this issue took place between 2007 and 2011, thanks to the Dependency Law (2006). But severe limitations showed the difficulty of overcoming the historical backwardness of Spanish social policy. This article describes the situation of Spanish people with dependency in activities of daily living. It analyzes changes driven by this law, especially in their impacts on elder women. It assesses the extent to which those changes can alter the traditional model of care. There are three major findings: First, measures promoted by the law have improved the previous situation but are incapable of developing a new model. Care for elders still relies on family, with lack of professionalism, little socialization, and expanding commodification. Second, the current care model is fundamentally detrimental to older women and women caregivers. Third, this kind of model hinders the overcoming of gender inequalities in intrafamily, generational, and social relations.

[The unmet needs of the elderly living with functional disabilities in Bobo-Dioulasso (Burkina Faso)]. / Les besoins non couverts des personnes âgées en incapacités fonctionnelles à Bobo-Dioulasso (Burkina Faso).

BACKGROUND: In sub-Sahara Africa, the strong involvement of the family in multidimensional cares/supports of elderly is often presented like the family ensures almost everything to these people. Thus, few studies have focused on unmet needs of the elderly in their family or above. This study was conducted in Bobo-Dioulasso to identify those needs. METHODS: This is a longitudinal study including 58 people or 15 elderly and 43 caregivers from 15 families in Bobo-Dioulasso. In addition to regular observations of these families during 1 year, we conducted in-depth individual interview with each participant at the beginning and at the end of the study. The data were analyzed using QSR NVivo 8 software. RESULTS: A priori, respondents let believe that there is no unmet functional needs of the elderly in their family. However, the food, the first and main functional need of the elderly is not qualitatively satisfied by their family as well as other equipments or health needs. The quality of social cares/supports, biomedical cares and community supports are insufficient when these cares/supports are provided. The family demands many free or subsidized services to public or community structures then they are not currently available. DISCUSSION: In a context of widespread poverty, it is difficult for each actor of the social system of maintaining elderly in functional autonomy to provide services/supports of optimal quality. A synergy of action will reduce the unmet needs of the elderly in Bobo-Dioulasso.