Combining informal care and paid work: The use of work arrangements by working adult‐child caregivers in the Netherlands

An increasing number of people combine paid work with the provision of informal care for a loved one. This combination of work and care may cause difficulties, necessitating adaptations at work, i.e. work arrangements. The present study explores what types of work arrangements are used by working caregivers, and which caregiver, care and work characteristics are associated with the use of these work arrangements. Within the Lifelines Informal Care Add‐on Study (Lifelines ICAS), data on 965 Dutch informal caregivers in the North of the Netherlands were collected between May 2013 and July 2014 (response rate 48%), and data on 333 working adult‐child caregivers (aged 26–68 years, 82% female) were used in this study. A small majority (56%) of the working caregivers used one or more work arrangement(s): taking time off (41%), individual agreements with supervisor (30%), formal care leave arrangement (13%), and reduction in paid work hours (6%). Logistic regression analyses showed that long working hours (OR 1.06, 95% CI 1.01–1.08), and the experience of more health problems (OR 2.54, 95% CI 1.56–4.05) or a disrupted schedule due to caregiving (OR 2.50, 95% CI 1.66–3.78) increased the chance to have used one or more work arrangements. Lower educated working caregivers were less likely to have used a formal care leave arrangement (tertiary vs. primary education OR 2.75, 95% CI 1.13–6.67; tertiary vs. secondary education OR 1.27, 95% CI 1.27–5.09). Policy makers should inform working caregivers about the availability of the different work arrangements, with specific attention for low educated working caregivers. Employers need to consider a more caregiver‐friendly policy, as almost half of the working adult‐child caregivers did not use any work arrangement.     

Differential impacts of care‐giving across three caregiver groups in Canada: end‐of‐life care,long‐term care and short‐term care

Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care‐giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end‐of‐life (EOL) care (n = 471); (ii) those providing long‐term care (more than 2 years) for someone with a chronic condition or long‐term illness (n = 2722); and (iii) those providing short‐term care (less than 2 years) for someone with a chronic condition or long‐term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care‐giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of ‘fair or poor’ self‐assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care‐giving, more so than both short‐term and long‐term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care‐giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long‐term or short‐term caregivers. This provides the evidence for the assertion that EOL care‐giving is the most intense type of care‐giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short‐term and long‐term caregivers.     

Predictors of caregiver burden across the home‐based palliative care trajectory in Ontario,Canada

Family caregivers of patients enrolled in home‐based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non‐modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home‐based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi‐weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home‐care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non‐linear fashion from study admission to patient death. Increased monthly unpaid care‐giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non‐modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care‐giving demands, thereby potentially allowing for longer patient care in the home setting.     

Entry and re‐entry into informal care‐giving over a 3‐year prospective study among older people in Nairobi slums,Kenya

This paper analyses data from a 3‐year prospective study to understand the factors associated with becoming a caregiver to a person with a chronic illness and examines the dynamics among caregivers over time. A total of 1485 participants were drawn from a study conducted in the slums of Nairobi, Kenya. Two waves of data collected in 2006 for the baseline and a follow‐up in 2009 were used. Information on the demographic, self‐reported health and socioeconomic characteristics such as education, sources of livelihood and employment status was used. Age was a significant factor in becoming a caregiver, but there were no significant differences by gender or marital status. New caregivers and those with more than one care‐giving episode had a higher socioeconomic position than non‐caregivers. Caregivers also had poorer health compared with non‐caregivers, highlighting the association between being a caregiver and negative health outcomes. Additionally, having cared for someone with a HIV‐related illness compared with other chronic conditions increased the likelihood of subsequently caring for another person in need of long‐term care. This may be due to the heterosexual mode of HIV transmission in sub‐Saharan Africa, hence clustering of infection within family or married couples. This finding draws attention to the need to provide timely interventions to caregivers for people with HIV‐related illness who are likely to end up providing care to multiple care recipients. Furthermore, there is a need to enhance the indispensable contribution of informal caregivers through incorporating their role within the continuum of care for effective HIV and AIDS management. Overall, informal caregivers to persons with chronic illnesses perform the tasks of care‐giving without any formal support from health or social services. Therefore, it is crucial to initiate policies and programmes to ease the burden of care that is borne by informal caregivers.     

Burden of Providing Informal Care for Patients with Atrial Fibrillation

ObjectivesPatients with atrial fibrillation (AF) have rapid and irregular heart rates, increasing the risk of comorbidities and mortality. Next to formal medical care, many patients receive informal care from their social environment. The objective of this study was to examine the well-being and economic burden of providing informal care to patients with AF in the UK, Italy, and Germany.MethodsCaregivers of patients with AF completed an online survey based on the iMTA Valuation of Informal Care Questionnaire, with questions about their caregiving situation, perceived burden of caregiving, and absence from work due to health problems resulting from caregiving. Care-related quality-of-life utilities were calculated using the Care-related Quality of Life instrument and associated tariffs. Societal costs of caregiving were calculated based on the proxy good method.ResultsA total of 585 caregivers participated in this study. On average, caregivers provided 33 hours of informal care per week to patients (SD 29 hours). On a scale from 0 to 10, their self-rated burden was 5.4. The average Care-related Quality of Life utility was 72. Caregivers primarily indicated problems with daily activities, mental health, and physical health. Still, the vast majority of caregivers (87%) derived fulfillment from providing care. Weekly societal costs of caregiving were on average €636. Comorbidities contributed substantially to the caregiver time and burden.ConclusionsCaring for a patient with AF is associated with substantial objective and subjective burden, but also provides fulfillment from being able to care for a loved one.     

Factors Associated With Family Caregiver Burden of Home-Dwelling Patients With Advanced Dementia

ObjectivesTo realize patients’ preferences for home death, this study aimed to identify factors associated with family caregiver burden of home-dwelling patients with advanced dementia and examine its relationship with end-of-life care treatment decisions.DesignA prospective cohort study.Setting and ParticipantsPatient-family caregiver dyads enrolled in a home-based palliative care program for patients with advanced dementia, with family caregiver burden assessed using the Zarit Burden Interview (ZBI) on enrolment, were included.MethodsIndependent variables included sociodemographic data, patients’ clinical phase, symptom severity, quality of life, informal paid help availability, and community resources utilized. Dependent variable was continuous ZBI scores and ZBI scores dichotomized into <24 and ≥24 for predicting depression risk. Place of death and interventions received 2 weeks before death were also collected. Data were analyzed using multivariate linear and logistic regression.ResultsFrom October 2014 to December 2020, a total of 377 family caregivers were assessed with ZBI. Median score was 25 (IQR 15-36), and 54.4% of them were at risk of depression. Younger family caregivers had higher ZBI scores (β = ?0.22, 95% CI –0.38, ?0.07), with the depression risk doubling for family caregivers aged <60 years (OR 2.13, 95% CI 1.33, 3.43). Absence of informal paid help also increased the ZBI scores (β = ?9.04, 95% CI –14.86, ?3.22) and depression risk (OR 2.50, 95% CI 1.03, 6.09). In addition, caregivers’ ZBI scores increased with patients’ neuropsychiatric symptom severity (β = 0.49, 95% CI 0.08, 0.89), and caregivers of clinically unstable patients had a higher depression risk (OR 1.80, 95% CI 1.03, 3.12). Baseline caregiver burden was not associated with treatment decisions made at the end of life.Conclusions and ImplicationsYounger family caregivers caring for clinically unstable patients with severe neuropsychiatric symptoms experienced greater burden without informal paid help. For end-of-life care at home in advanced dementia to be tenable, relevant national agencies and stakeholders are recommended to work collectively to support family caregivers holistically.     

Informal caregivers of people with an intellectual disability in England: health,quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well‐being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population‐representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio‐demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care‐giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar‐sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well‐being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population‐representative data. Poverty and long care‐giving hours may make caregivers more susceptible to negative well‐being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.     

A qualitative exploration of how Canadian informal caregivers in medical tourism use experiential resources to cope with providing transnational care

Canadians travelling abroad for privately arranged surgeries paid for out‐of‐pocket are engaging in what has come to be known as medical tourism. They are often accompanied by friends or family members, who we call caregiver‐companions. Caregiver‐companions provide care in and across a variety of formal and informal settings, such as in hotels, airplanes and at home. This qualitative study examines the experiences of informal caregivers in medical tourism to learn more about the lived experiences or ‘experiential resources’ they draw upon to cope with providing care and avoiding caregiver burden. The care‐giving literature has demonstrated that such burden can negatively impact caregivers’ well‐being. The unique, transnational context of care‐giving in medical tourism and recent growth in popularity of this practice means that there are few supports or resources currently in place to assist informal caregivers. In this article, we report on an analysis that sought to detail how caregiver‐companions draw upon their previous lived experiences to cope with providing transnational care and to minimise or avoid the onset of caregiver burden. We conducted semi‐structured telephone interviews with 20 Canadians who had accompanied their friends or family members abroad for surgery between September 2013 and January 2014. Thematic analysis revealed the ways that participants had developed practical strategies to deal with the challenges they faced in medical tourism. The interviews revealed three important experiential resources drawn upon by participants: (i) previous experiences of international travel; (ii) previous experiences of informal care‐giving; and (iii) dimensions of the existing relationship with the care recipient. Differences in access to and use of these experiential resources related to participants’ perspectives on medical tourism and the outcomes of the trip. By identifying the experiential resources drawn upon by informal caregivers in medical tourism, we can more effectively identify supportive interventions.     

The physical functioning and mental health of informal carers: evidence of care‐giving impacts from an Australian population‐based cohort

Informal carers represent a substantial proportion of the population in many countries and health is an important factor in their capacity to continue care‐giving. This study investigated the impact of care‐giving on the mental and physical health of informal carers, taking account of contextual factors, including family and work. We examined health changes from before care‐giving commenced to 2 and 4 years after, using longitudinal data from the Household Income and Labour Dynamics in Australia survey. The sample comprised 424 carers and 424 propensity score‐matched non‐carers. Health was self‐assessed, measured with the SF‐36 Health Survey Mental Health (MH) and Physical Functioning (PF) scales. Care‐giving was classified as non‐carer, low (<5 hours/week), moderate (5–19 hours/week) and high (20 or more hours/week). PF and MH change scores were regressed on baseline scores, care‐giving, covariates (including work, family and socio‐demographic characteristics) and interactions to identify impacts for subgroups. The physical and mental health impacts differed by gender, and care‐giving hours and carer work hours were important contextual factors. Deterioration in both PF and MH was worse for females after 2 years and deterioration in MH was worse for males after 4 years. Among carers aged 40–64 years, there was a 17‐point decline in PF (P = 0.009) and a 14‐point decline in MH (P < 0.0001) after 2 years for female high caregivers working full‐time and 9.3 point improvement (P = 0.02) for non‐working male high caregivers. Change was not significant for non‐carers. The study found that not all carers suffer adverse health impacts; however, the combination of high levels of care‐giving with workforce participation can increase the risk of negative physical and mental health effects (particularly in female carers). Working carers providing high levels of care represent a vulnerable subgroup where supportive and preventive services might be focused.     

Caregiver perceptions associated with risk of nursing home admission for people with multiple sclerosis

BackgroundAbout one quarter of people with multiple sclerosis (MS) will need long term care during their disease, with about 5% to 10% requiring extended nursing home care. The study objective was to identify perceptions of informal caregivers associated with the possibility of future nursing home admission for people with MS.MethodsData were collected in a national survey of informal caregivers (78% were spouses) to people with MS. An ordered logistic regression model analyzed contributions that characteristics of the person with MS and caregiver made to the perceived probability of future nursing home admission.ResultsAging, bowel dysfunction, poorer health, and functional decline in the person with MS, as well as caregiver burden, were associated with increased probability of future admission. Higher family income and greater satisfaction with access to MS-focused care were associated with lower risk of nursing home admission.ConclusionsThe rehabilitative, therapeutic, supportive, and maintenance services that contribute to MS-focused care could assist the person with MS and the caregiver adapt to the symptoms that interfere with the ability of the person with MS to function independently in daily life. Informal caregivers provided insights into factors associated with the perceived probability of future nursing home admission, gaining a better understanding of people with MS at risk for institutional care.     

Formal and informal care for community‐dwelling frail elderly people over time: A comparison of integrated and usual care in the Netherlands

While integration has become a central tenet of community‐based care for frail elderly people, little is known about its impact on formal and informal care and their dynamics over time. The aim of this study was therefore to examine how an integrated care intervention for community‐dwelling frail elderly people affects the amount and type of formal and informal care over 12 months as compared to usual care. A quasi‐experimental design with a control group was used. Data regarding formal and informal care were collected from frail elderly patients (n = 207) and informal caregivers (n = 74) with pre/post‐questionnaires. Within‐ and between‐group comparisons and multiple linear regression analyses were performed. The results showed marginal changes over time in the amount of formal and informal care in both integrated care and usual care. However, different associations between changes in formal and informal care were found in integrated and usual care. Most notably, informal caregivers provided more instrumental assistance over time if formal caregivers provided less personal care (and vice versa) in integrated care but not in usual care. These results suggest that integrated care does not necessarily change the contribution of formal or informal care, but changes the interaction between formal (personal care) and informal (instrumental) activities. Implications and recommendations for research and practice are discussed. Trial registration: Current Controlled Trials ISRNT05748494.     

Monetising the provision of informal long‐term care by elderly people: estimates for European out‐of‐home caregivers based on the well‐being valuation method

Providing informal care can be both a burden and a source of satisfaction. To understand the welfare effect on caregivers, we need an estimate of the ‘shadow value’ of informal care, an imputed value for the non‐market activity. We use data from the 2006–2007 Survey of Health Ageing and Retirement in Europe which offers the needed details on 29,471 individuals in Austria, Belgium, the Czech Republic, Denmark, France, Germany, Italy, the Netherlands, Poland, Spain, Sweden and Switzerland. Of these, 9768 are unpaid non‐co‐resident caregivers. To estimate net costs, we follow the subjective well‐being valuation method, modelling respondents' life satisfaction as a product of informal care provision, income and personal characteristics, then expressing the relation between satisfaction and care as a monetary amount. We estimate a positive net effect of providing mode rate amounts of informal care, equivalent to €93 for an hour of care/week provided by a caregiver at the median income. The net effect appears to turn negative for greater high care burdens (over 30 hours/week). Interestingly, the effects of differences in care situation are at least an order of magnitude larger. We find that carers providing personal care are significantly more satisfied than those primarily giving help with housework, a difference equivalent to €811 a year at the median income. The article makes two unique contributions to knowledge. The first is its quantifying a net benefit to moderately time‐intensive out‐of‐home caregivers. The second is its clear demonstration of the importance of heterogeneity of care burden on different subgroups. Care‐giving context and specific activities matter greatly, pointing to the need for further work on targeting interventions at those caregivers most in need of them.     

Impacts of care‐giving and sources of support: a comparison of end‐of‐life and non‐end‐of‐life caregivers in Canada

This is the second in a series of papers that deal with care‐giving in Canada, as based on data available from the Canadian General Social Survey (2007). Building on the first paper, which reviewed the differences between short‐term, long‐term and end‐of‐life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non‐EOL caregivers (short‐term and long‐term caregivers combined). Both papers employ data from Statistics Canada's General Social Survey (GSS Cycle 21: 2007). The GSS includes three modules, where respondents were asked questions about the unpaid home care assistance that they had provided in the last 12 months to someone at EOL or with either a long‐term health condition or a physical limitation. The objective of this research paper was to investigate the link between the impact of the care‐giving experience and the caregiver supports received, while also examining the differences in these across EOL and non‐EOL caregivers. By way of factor analysis and regression modelling, we examine differences between two types of caregivers: (i) EOL and (ii) non‐EOL caregivers. The study revealed that with respect to socio‐demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non‐EOL caregivers are experiencing negative impacts from their care‐giving role, comparatively greater supports are needed for EOL caregivers.     

Mixed care networks of community‐dwelling older adults with physical health impairments in the Netherlands

As part of long‐term care reforms, home‐care organisations in the Netherlands are required to strengthen the linkage between formal and informal caregivers of home‐dwelling older adults. Information on the variety in mixed care networks may help home‐care organisations to develop network type‐dependent strategies to connect with informal caregivers. This study first explores how structural (size, composition) and functional features (contact and task overlap between formal and informal caregivers) contribute to different types of mixed care networks. Second, it examines to what degree these network types are associated with the care recipients' characteristics. Through home‐care organisations in Amsterdam, the Netherlands, we selected 74 frail home‐dwelling clients who were receiving care in 2011–2012 from both informal and formal caregivers. The care networks of these older adults were identified by listing all persons providing help with five different types of tasks. This resulted in care networks comprising an average of 9.7 caregivers, of whom 67% were formal caregivers. On average, there was contact between caregivers within 34% of the formal–informal dyads, and both caregivers carried out at least one similar type of task in 29% of these dyads. A principal component analysis of size, composition, contact and task overlap showed two distinct network dimensions from which four network types were constructed: a small mixed care network, a small formal network, a large mixed network and a large formal network. Bivariate analyses showed that the care recipients’ activities of daily living level, memory problems, social network, perceived control of care and level of mastery differed significantly between these four types. The results imply that different network types require different actions from formal home‐care organisations, such as mobilising the social network in small formal networks, decreasing task differentiation in large formal networks and assigning co‐ordination tasks to specific dyads in large mixed care networks.     

Individual determinants of task division in older adults' mixed care networks

Older adults in need of long‐term care often receive help from both informal and formal caregivers. The division of tasks between these different types of caregivers may vary among such mixed care networks. Traditional models of task division suggest that formal and informal caregivers may either supplement each other or specialise in the care activities performed. Our study explores the determinants of various forms of task division in the Netherlands, using data collected in 2007 on 458 mixed care situations. Four types of task divisions of informal and formal care are distinguished: the complementation model [neither Activities of Daily Living (ADL) nor instrumental ADL (IADL) tasks shared, 14%], the supplementation model (both ADL and IADL tasks shared, 39%) and informal and formal specialisation (one type of task shared, one type of task not shared, 27% and 20% respectively). Marginal effects calculated with multinomial regression analyses show that the intensity of care provision, the informal caregivers' motives and the presence of privately paid help – more than care receiver's health – are related to type of task division with formal care. For example, when the informal caregiver provides more hours of help and out of a strong personal bond, the likelihood of informal specialisation increases, whereas the likelihood of formal specialisation decreases. When privately paid help is present, the complementation model is more likely, whereas the supplementation model is less likely to be found. Results are discussed regarding the differential consequences for co‐ordination and co‐operation in mixed care networks.     

Societal costs of home and hospital end‐of‐life care for palliative care patients in Ontario,Canada

In Canada, health system restructuring has led to a greater focus on home‐based palliative care as an alternative to institutionalised palliative care. However, little is known about the effect of this change on end‐of‐life care costs and the extent to which the financial burden of care has shifted from the acute care public sector to families. The purpose of this study was to assess the societal costs of end‐of‐life care associated with two places of death (hospital and home) using a prospective cohort design in a home‐based palliative care programme. Societal cost includes all costs incurred during the course of palliative care irrespective of payer (e.g. health system, out‐of‐pocket, informal care‐giving costs, etc.). Primary caregivers of terminal cancer patients were recruited from the Temmy Latner Centre for Palliative Care in Toronto, Canada. Demographic, service utilisation, care‐giving time, health and functional status, and death data were collected by telephone interviews with primary caregivers over the course of patients' palliative trajectory. Logistic regression was conducted to model an individual's propensity for home death. Total societal costs of end‐of‐life care and component costs were compared between home and hospital death using propensity score stratification. Costs were presented in 2012 Canadian dollars ($1.00CDN = $1.00USD). The estimated total societal cost of end‐of‐life care was $34,197.73 per patient over the entire palliative trajectory (4 months on average). Results showed no significant difference (P > 0.05) in total societal costs between home and hospital death patients. Higher hospitalisation costs for hospital death patients were replaced by higher unpaid caregiver time and outpatient service costs for home death patients. Thus, from a societal cost perspective, alternative sites of death, while not associated with a significant change in total societal cost of end‐of‐life care, resulted in changes in the distribution of costs borne by different stakeholders.     

Conspiracy mentality among informal caregivers as a risk factor for caregiver burden,mental health,perceived loneliness and social isolation during the COVID-19 pandemic: findings of a representative online study from Germany

Quality of Life Research - This study aims to analyze if and how conspiracy mentality is associated with mental health, burden and perceived social isolation and loneliness of informal caregivers...