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Carers and employment

The following resources examine the impact of caring on carers’ labour force participation, and implications for employers.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).
 

Covid-19 and the Impact on Family Carers

This paper will examine key rapid surveys and research studies which have been conducted by various researchers and organisations both in a specifically Irish context and internationally.

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The invisible workforce during the COVID-19 pandemic: Family carers at the frontline [version 1; peer review: 2 approved]

This is an open letter to acknowledge the essential and increasingly challenging role unpaid family carers are playing in the COVID-19 pandemic. The letter is written by members of the CAREWELL team, a HRB-funded project that aims to promote health and self-care behaviours among working family carers. Family carers provide care to family and friends in the community who need support due to old-age, disability and chronic illness. In many cases, family carers are supporting those who are considered most at risk in this pandemic meaning carers must reduce their own risk of infection in order to protect their dependent family members. The temporary reduction of some home care services, as well as school and creche closures, means that family carers are providing increased levels of care with little or no support. At a time when both worlds of work and care have been dramatically transformed, we wish to shed light on those who are currently balancing paid employment with a family caregiving role. We argue that there is much to be learned from the recent work restrictions that could benefit employees, including working family carers, beyond this pandemic. We also wish to build on the potential positives of a transformed society and encourage policy makers and employers to focus on what is currently being implemented, and to identify which measures could be used to create a bedrock of policies and practices that would offer robust and effective support to family carers. It is hoped that family carers will receive greater recognition for the significant role they play in society, providing essential care and alleviating the strain on health and social care systems, both during and post the COVID-19 pandemic.

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Intergenerational Relationships, Family Caregiving Policy, and COVID-19 in the United States

Families and intergenerational relationships are important sources of risk for COVID-19 infection, especially for older adults who are at high risk of complications from the disease. If one family member is exposed to the virus they could serve as a source of transmission or, if they fall ill, the resources they provide to others could be severed. These risks may be especially heightened for family members who work outside the home and provide care, or for those family members who care for multiple generations. Policies have the potential to help families bear the burden of these decisions. This essay argues that policies that address health, employment, and other social issues have implications for families, and that policies aimed at families and caregivers can affect the health, employment, and the general well-being of the nation.

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The Burden of Mental Illness and Mental Distress on Family Members

BACKGROUND: The Organisation for Economic Cooperation and Development reports that one in every two people experiences a mental illness in their lifetime, and developed policy guidelines to address the impact of mental health-related issues on employment and health. The results of this policy initiative have been reported in many member countries but no survey findings are available yet for Japan. Previous studies in Japan focused on the social costs of mental illness, but little empirical evidence exists on burdens created by mental illness in individual households. AIMS: This study investigated the effects of mental illness and mental distress on family members' employment and sleep time. Employed men and women family members and unemployed women family members who wanted to work were included in the study. METHODS: Japanese survey data from the 2013 Comprehensive Survey of Living Conditions were analyzed to identify the above-mentioned effects. A propensity score matching method was used to create a valid comparison group for family members of patients with mental illness and distress. RESULTS: For depression, family member average weekly work hours decreased by a range of 1.06 (p%lt;0.01) to 1.18 (p<0.01) for men, and 0.53 (p<0.1) to 1.06 (p<0.05) for women. For dementia (termed "major neurocognitive disorder" in the DSM-5), there were no statistically significant effects on work hours in men, but the work hours of employed women increased, ranging from 1.15 (p<0.05) to 1.25 (p<0.01). Mental illness in a family member also significantly influenced future employment prospects of unemployed women. In family members of patients with dementia, sleep time decreased by a range of 3.6 minutes (p<0.05) to 4.8 minutes (p<0.01) per night for men and 12 minutes (p<0.01) per night for women. DISCUSSION AND LIMITATIONS: These findings can add to the existing evidence on the effects of mental illness and distress on family members' work hours and sleep time in Japan, which are consistent with research from other countries such as Germany, the UK, and the US. This study has two limitations. First, the magnitude of the effect of mental illness is limited with respect to the illness category in our study, since the severity of the condition and the impact on actual daily life may vary across categories or differ even within the same category. Second, measurement error might exist in the self-reported mental illness measures. POLICY IMPLICATIONS: First, cooperation and mutual support between employers and the community are necessary to support working family caregivers by allowing them to adjust work schedules to accommodate caregiving responsibilities. Second, social institutional policies are needed that reduce the burden of informal caregiving for family members with mental illness and increase access to long-term care for those in need. Third, since mental illness and distress have been shown to affect family members' sleep schedules, health care programs must focus on promoting caregivers' general health. IMPLICATIONS FOR FUTURE RESEARCH: To further address the burden of mental illness and distress on family members, future research should examine illness severity as measured by Activities of Daily Living.

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Eldercare hours, work hours and perceived filial obligations

In this paper, we take a fresh look at the magnitude of the trade-off between caring informally for a parent and paid work. We adopt a simultaneous approach with a primary focus on how hours of care are influenced by hours of work rather than the other way round. We also investigate the role that filial obligations play in choices of caring versus working. Using the SHARE data (2004 and 2006) we find that the elasticity of informal care hours in response to working hours is between −0.17 in the caregivers sample and −0.19 in the women-only caregivers sample; small but not negligible. Moreover, we find that a 10% increase in the index measuring the strength of filial obligations increases weekly hours of care by about two and a half hours. 

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Downshifting to care: The role of gender and care in reducing working hours and consumption

The relationship between working hours and sustainability has attracted research attention since at least the early 2000s, yet the role of care giving in this context is not well understood. Focusing on Australians between 40 and 60 years who have reduced their working hours and income, we explore the relationship between working hours, care giving and consumption. Data from the national census (ABS, 2006, 2011, 2016c) were analysed to contextualise patterns in paid working hours, income and carer roles for men and women aged between 40 and 60 years. Findings from a national survey on informal carers (ABS, 2016a) were also consulted. Taken together, the two sources of national data showed that two thirds of all informal carers are women, that the likelihood of assuming informal carer roles increases with age, and that men and women in carer roles work fewer paid hours per week and have a lower weekly income than non-carers of the same age. To gain qualitative insights into these patterns in Australian national data, and the likely implications of carer roles for household consumption, semi-structured interviews were conducted with ten households who subsequently recorded details of their consumption-related expenses over a seven-day period. The interview data showed the strong connection between carer roles, reduced income and paid working hours and its strongly gendered dimension. We argue that women primarily ‘downshift’ to undertake care rather than for sustainability motivations and that there is consequently a need to connect scholarship on gender and care with that on downshifting. The link between reducing paid working hours, care-giving and household consumption appeared to be less straight forward and varied between households. Our findings suggest that a complex relationship exists between environmental and social welfare concerns that has policy implications and warrants further exploration.

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The lived experience of supporting people with mild stroke

Background: Mild stroke occurrences are rising and in order to comprehensively understand the experience of this health phenomenon, the context in which people with mild stroke live must be explored. Spouses are an important part of the lives of this population, but their experiences are yet to be fully understood. Aims/Objectives: To answer the question: “What is the essence of the mild stroke experience from the perspective of spouses during the first 9-months after acute hospital discharge, in Australia?” Materials and Methods: Qualitative study involving four spouses at 9-months post-acute hospital discharge for their family member. Interpretative phenomenological analysis used to analyze interview transcripts. Results: Two themes identified: (1) Activities gained but time lost, and (2) Small changes but big impacts. The first theme portrays the increase in daily activity that spouses experienced due to caregiving related activities, which impacted on their occupational participation. The second highlights the impact that people with mild strokes’ behavioral and emotional changes can have on spouses. Conclusions and Significance: Whilst spouses generally return to their daily routines after a family members’ mild stroke, some will experience increased time pressures and occupational disruptions. Health providers should prepare spouses for behavioral and emotional changes in people with mild stroke. 

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Paid family leave in a large urban center academic radiology department: How we do it

No abstract. Extract:

'Looking ahead to the next generation of radiology trainees, and recognizing that radiology residency typically overlaps with prime child-bearing years and the challenges associated with balancing rigorous call and rotation schedules with a newborn, we sought to establish a parental leave policy for our radiology residents of both genders. Residents are considered employees, as per the 2011 supreme court ruling [16], and as such are entitled to 12 weeks of unpaid family leave under FMLA [17]. Unfortunately, due to time constraints associated with Accreditation Council for Graduate Medical Education (ACGME) requirements for graduation, as well as American Board of Medical Specialities (ABMS) board eligibility requirements, which are in part dependent on duration of training, residency programs' parental leave policies are variable, with majority providing little to no leave [18–20].'

... 'All eligible, as defined by FMLA [17], faculty in our academic radiology department of 135 faculty in NYC, are allotted up to 14 weeks of paid family leave, to be taken within the first year of having or adopting a child or whenever needed to care for a spouse, child or parent with a serious health condition.'

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I’ll Be a Caregiver-Employee: Aging of the Workforce and Family-to-Work Conflicts

Background: The double role of caregiver-employee (CE) defines those workers who simultaneously serve as an informal, unpaid care provider for sick, disabled, or elderly relatives, and it is a situation that is on the increase in most western countries. Providing informal caregiving can lead to detrimental effects on emotional well-being and several physical and psychological diseases (e.g., caregiver-burden). CEs can suffer double discomfort (at work and at home), but, first of all, they can be exposed to a high level of home-to-work conflict (HWI). In this study, we analyzed the CE phenomenon in a typical Italian public company, where the mean age of workers is particularly high. Methods: An online questionnaire related to the perception of HWI, well-being, and discomfort at work (depression, emotional exhaustion, job engagement) in relation to the family load (none, parents with <12 children to care for, caregiver to other adults, or children and older adults to care for/old/children to care for employees) was answered by 1704 administrative workers. Results: More than 20% of our sample was included in the elder caregiver condition or in the double role or “sandwiched” condition with older adults and children to care for. The family load changed significantly between the different age groups: for workers aged between 55 and 64 years, the percentage was nearly 27%. CEs had higher levels of HWI and of personal and job discomfort and lower levels of engagement, when compared with non-CEs. Having “only” older adults to care for (the typical CE condition) was associated with having the most negative results. Conclusion: This study confirms and underlines the increasing number of CEs in western organizations and their higher levels of HWI, work disengagement, emotional exhaustion, and depression. As the general population and workforce experience increased “graying,” and many more workers become CEs out of necessity, stable caregiver-friendly workplace policies (CFWPs) should be developed. 

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Public policy for supporting employed family caregivers of the elderly: the Israeli case

The demographic processes that have  been avolving in recent years around the world and Israeli society in particular, associated with the rise in life expectancy and the aging of population, are rasing the depedency ratio  and increasing public policy  makers' interest in issues related to caring for the elderly and thier support. These  circumstances have a considerable effect on family member required to  assist  thier aging parents, as they raise the potential support ratio and have an even greater impact on employed family caregivers. This article examined the policy implemented in Israel for providing support and assistance to employed family caregivers assisting ageing parents. It shows that the current policy is relatively limited compared to that of other liberal countries and not compatible with caregivers’ demands and needs. The article calls for implementing an effective public policy for employed family caregivers and suggests ways of formulating such a policy. 

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The unique burden of rare cancer caregiving: caregivers of patients with Erdheim-Chester disease

Research examining the experience of informal caregivers (ICs) for patients with rare cancers is limited. This was a mixed-methods pilot study of 14 ICs for patients with Erdheim-Chester disease (ECD), an ultra-rare neoplasm. Participants were predominantly female and over half provided at least 60% of their loved one's care. Participants completed measures of the impact of caregiving, caregiver burden, unmet needs, quality of life, anxiety, and depression. Participants reported substantial impact of caregiving, including limiting (50%) or discontinuing (21%) paid employment, and exhausting financial savings (43%). ICs reported a moderate level of burden with five (38%) reporting risk for burnout. While participants reported anxiety (64%) and depression (14%), their overall quality of life was favorable. Semi-structured interviews highlighted factors related to the distress and isolation of navigating a rare cancer. ECD ICs report burden and distress shaped by the experience of providing care for a patient with a rare cancer.

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Supporting working carers: How employers and employees can benefit

  • This report examines the ability of working carers to combine caring responsibilities with paid employment and the difference that employer support can make. The report focuses on employees and does not cover the self-employed.
  • Three research questions are addressed: What are the challenges that working carers face? What forms of support do employers provide to working carers, and how does this vary across sectors and types of organisation? How do these forms of support benefit working carers and the organisations for which they work?
  • Findings are based on data from a representative survey of working carers in England and Wales. The survey was commissioned by the CIPD and used a questionnaire developed by the Sustainable Care team administered by YouGov. It was conducted online in July/August 2019 and completed by 970 unpaid carers in paid employment (excluding self-employed workers).
  • The research report is an output from a large research programme – the Sustainable Care: Connecting people and systems programme – based at the University of Sheffield, UK. Funded by the Economic and Social Research Council, the programme is a multidisciplinary project exploring social care arrangements in the UK and around the world.
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The COVID-19 Pandemic: Challenges and opportunities for carers in NSW

Carers NSW has been closely monitoring COVID-19 developments in NSW, the ongoing government response and the wide ranging impacts the virus and associated social distancing requirements have had on carers. Carers have experienced a variety of impacts, both in relation to the people they care for and in relation to their own health and overall wellbeing. Many carers provide care and support to people who are in higher risk categories, and many are in higher risk categories themselves due to age or an existing health condition. These factors have resulted in complexities surrounding provision of care, particularly in maintaining social distancing.  [...]

Carers NSW determined that it was crucial to hear directly from carers and other key stakeholders in order to gain a clear and accurate picture of the key issues, challenges and opportunities for carers during the pandemic. This report identifies the key findings of consultation conducted to inform Carers NSW service adjustments and systemic advocacy. 

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Caring behind closed doors: Forgotten families in the coronavirus outbreak

Carers UK carried out an online survey between 3rd April and 14th April 2020. A total of 5,047 carers and former carers responded to the survey. This included 4,830 current carers and 217 former carers. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. As not all respondents completed every question in the survey, a number of the figures given in this report, including those presented here, are based upon responses from fewer than 5,047 carers.

Of current carers responding to the survey:

  • 67% live in England, 19% live in Scotland, 9% live in Northern Ireland, and 6% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 23% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 27% are aged 45–54, 32% are aged 55– 64, 17% are aged 65–74, and 5% are aged 75 and over.
  • 4% identified as lesbian, gay or bisexual.
  • 4% described their ethnicity as black or minority ethnic.
  • 18% also have childcare responsibilities for a nondisabled child under 18.
  • 36% have been caring for 15 years or more, 17% for between 10–14 years, 24% for 5–9 years, 20% for 1–4 years, 2% for less than one year and just 1% have been caring since the beginning of the coronavirus outbreak. 
  • Most (71%) care for one person, 20% care for two people, 6% for three people, and 2% care for four or more people. 
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Caregiving work: The experiences and needs of caregivers in Australia

A considerable evidence base exists demonstrating the high prevalence of family caregiving in the community; however, there is a paucity of in-depth research examining the impact of family caregiving on the living and employment needs of those providing this unpaid service. This study employed a qualitative interview design with purposive sampling to examine the experiences of family caregivers, in order to examine how family caregiving decisions are made, the nature and challenges of caregiving work, and living and work supports that may enhance the caregiving experience. A sample of 12 adults providing care and assistance to family members with a range of disabilities, chronic conditions and long-term illnesses were interviewed. The results showed that family caregivers ‘fall into’ the caregiving role and often continue to provide care indefinitely without pay and with little or no financial support from others. In describing the best aspects of their experience many caregivers talked about helping their care recipient remain in their home and maintain their independence. In describing the worst aspects of their experience, all referred to the living and financial challenges of the caregiving work, and many highlighted the impact of their caregiving work on their employment and career needs. In conclusion, there is a need for public policies, programs and health services in Australia to better respond to the living, financial and support needs of family caregivers as health service providers, as well as their employment, development and career needs which are seriously impacted upon by caregiving work.

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Covid-19 pandemic: 4.5 million become unpaid carers in a matter of weeks

New figures released for Carers Week (8th – 14th June 2020) show an estimated 4.5 million people in the UK have become unpaid carers as a result of the Covid-19 pandemic. This is on top of the 9.1 million unpaid carers who were already caring before the outbreak, bringing the total to 13.6 million.

2.7 million women (59%) and 1.8 million men (41%) have started caring for relatives who are older, disabled or living with a physical or mental illness. Typically, they will have been supporting loved ones from afar, helping with food shopping, collecting medicine, managing finances and providing reassurance and emotional support during the pandemic. Some will have taken on intense caring roles, helping with tasks such as personal care, moving around the home, administering medication and preparing meals.

2.8 million people (62%) who have started caring since the outbreak are also juggling paid work alongside their caring responsibilities, highlighting the need for working carers to be supported as they return to offices and work sites.

The six charities supporting Carers Week - Carers UK, Age UK, Carers Trust, Motor Neurone Disease Association, Oxfam GB and Rethink Mental Illness – are calling on the UK Government to recognise and raise awareness of the role unpaid carers are playing during the pandemic and ensure they are supported through it, and beyond.

Both unpaid carers (71%) and adults without caring responsibilities (70%) said managing the stress and responsibility of being an unpaid carer was/ would be the top challenge when caring. Families are under a huge amount of pressure managing their caring roles and are worried about how they will cope in the weeks and months ahead.

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Work and the Family in Later Life: The Effects of Role Stressors, Role Enhancement, and Role Conflict on Self-Perceptions on Aging

The growing aging workforce comprises older workers with a concurrent family role. Guided by life span development and role theories, the primary study hypothesis was that rewards and stressors in the family and work domains would impact self-perceptions on aging because of the enhancement and conflict between these domains. The study sample consisted of workers older than 50 years with at least one of four family roles (spouse, parent of adult children, caregiver to an aging parent, and grandparent) from the 2010 and 2012 Health and Retirement Study (N = 5,628). Results showed that self-perceptions on aging were impacted directly by family and work stressors and indirectly by these stressors through work-family enhancement and conflict. Work and family roles are thus crucial to the identity of adults in later life. 

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The care-wage penalty: the association between family care and wages

Background: Against the background of demographic aging, the need for professional and private care will increase in the future. To contain costs many welfare states rely on the family as care provider and, in addition, people in need of care often prefer being cared for at home. Thus, the number of people who provide care privately and without pay in the home environment (referred to as family care in this article) is likely to increase. So far, however, research on the impact of family care on the labor market situation of caregivers in general and their wages in particular remains scarce. Objective: This article examines whether and if so to what extent, family care affects the wages of women and men. Material and methods: Using data from the German Socio-Economic Panel (2001–2017), fixed effects regressions were estimated separately for women and men, while accounting for important confounders. Results: Both women (2.4%) and men (3%) suffer wage losses as a result of family care activities. Conclusion: The results indicate that care-related wage losses, net of relevant controls, exist.

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Impact of working situation on mental and physical health for informal caregivers of older people with Alzheimer's disease in Italy. Results from the UP-TECH longitudinal study

Objectives: This longitudinal study explores whether the working situation (no change in working hours despite care, reduction of working hours due to care or not working) moderates mental and physical health of informal caregivers of older people with Alzheimer's disease (AD) in Italy. Methods: Data from a sample of 146 caregivers of older people with moderate AD involved in the UP-TECH trial across three waves were analysed. Multivariate analyses were used to study the association between independent variables (caregivers' work situation) and dependent variables (caregivers' psycho-physical health). In a second model, elements relating to the caregiver, the cared-for individual and the caregiving situation were added as controls. Results: Being forced to reduce working hours due to care tasks or not being employed independently from care was negatively associated with informal caregiver's physical health, compared with working carers not experiencing reduction of working hours. In the extended model, this result was confirmed. In comparison with working carers not forced to reduce working hours, non-working carers experienced higher levels of caregiver burden and depression, however these results were not confirmed in the adjusted model. Other factors also emerged as important including weekly hours of care, the cared-for older individual's ADL/IADL scores and informal support network. Conclusions: Given the positive effect of labour force participation on health of informal caregivers of older people with AD, policy makers should promote their employment avoiding their forced reduction of working hours, while also putting measures in place to decrease the intensity of informal care provision.

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Financial Strain, Employment, and Role Captivity and Overload Over Time Among Dementia Family Caregivers

Background and Objectives This study examined how financial strain and changes in employment status affect subjective stressors over 12 months in 184 family caregivers of individuals with dementia. Research Design and Methods Subjective stressors of role overload and role captivity, and employment status were measured at baseline, 6-, and 12-months. Self-reports on financial strain were measured at baseline only. Caregivers were categorized into 3 groups based on changes in their employment status during the study over 12 months: (a) who were never employed, (b) who experienced some sort of employment status change, either going from employment to unemployment or vice versa, and (c) who were always employed. Growth curve analyses were conducted to examine within-person changes in role overload and role captivity, and associations with employment and financial strain. Results Caregivers with greater financial strain at baseline had higher levels of role overload and increasing role captivity over time. Caregivers who experienced a caregiving transition and had low financial strain at baseline showed greater decrease in role captivity over 12 months. Although caregivers who were consistently unemployed reported lower levels of role overload, they also showed steeper increase over time than those who were consistently employed. Discussion and Implications Caregivers' perceptions of financial strain add to the long-term stress of the caregiving role. Changes in caregivers' employment status may have complex associations with their feelings of stress over time. 

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Exploring employment as a space of respite and resistance for family caregivers

This paper challenges traditional definitions of work and leisure as separate concepts by suggesting that a space where individuals engage in employment (paid work) can, at the same time, be a space of respite (leisure) for employees who are also family caregivers. The research aims to better understand what caregivers perceive as ideal respite space, what that space means to them, how the space where employment takes place fits that ideal and what forces restrict caregivers' ability to engage with employment as a space of respite. The term space is used because a caregiver's presence in a particular space (inside or outside of a place) gives it meaning that is simultaneously social, political and emotional. We report on a qualitative intrinsic case study of primary caregivers who are both employed and providing care to relatives with dementia. Using a reflective iterative process, 12 participants were recruited and interviewed from two Canadian provinces in 2013/14. Using a non‐temporal view of respite facilitated the identification of employment as an important space for caregivers to experience effective respite. Although this connection has been noted by other scholars, our research goes beyond this to identify four forces that create challenges for caregivers who want to maintain engagement with employment as a space of respite. These forces are internalised socialisation, family and organisational pressures and government policy. In addition, this research is one of the first to suggest ways that caregivers resist these forces. In concluding remarks, we reflect on the limitations of the study and offer suggestions for further research aimed at elucidating the spatiality of caregiver respite and the complex and dynamic aspects of resistance. 

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The Effect of California's Paid Family Leave Program on Employment Among Middle-Aged Female Caregivers

Background and Objectives This study examined the effect of a Paid Family Leave program in California (CA-PFL) on employment among middle-aged female caregivers. We also examined differences in the relationship between the availability of paid family leave (PFL) and employment in socioeconomic subgroups of midlife women. Research Design and Methods Data came from multiple years (2000‒2014) of the Current Population Survey (CPS) (N = 68,773 individuals). Applying a Difference in Differences (DiD) approach to removing potential selection biases related to program participation, we used a logistic regression to estimate the effects of PFL. Results There was a significant increase in the likelihood of working based on CA-PFL. This positive effect, however, was found only among the early middle-aged, the near-poor, and those had the highest level of education. Discussion and Implications Among the late middle-aged, caregiving burden may not affect decisions on whether to exit the labor market, and PFL may not significantly mitigate the well-known negative effects of intense and multiple caregiving roles (parents, spouse, and/or children with disabilities). Future studies should examine PFL effects and their correlates such as age-cohorts, caregiving intensity, and retirement patterns. The unexpected null findings of CA-PFL's effect on employment outcomes for the poor and those with low education levels suggests these vulnerable groups might not be able to fully benefit from the originally intended goal of the policy, instead being left more vulnerable compared to the near poor. Such a possibility increases the importance of focused research and policymaking attention for this group.

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Evaluation of the Carers in Employment (CiE) Project

This government-funded and independently evaluated project, which ran from 2015-2017, looks at what works to support carers to remain or return to the workplace. The Carers in Employment (CiE) project took place in nine local authorities, who were encouraged to develop local solutions to support carers to remain in or return to work; work involving employers was found to be a central to the project’s success.

This is the evaluation report for the project. It finds that, out of the nearly three thousand carers who took part, CiE sites said that they had supported nearly 60% to stay in work. It is hoped that the findings of the independent evaluation will make an important contribution to ensuring that carers’ needs are reflected in future employment-related carer policy and practice. It is also hoped that the project will encourage the country’s carers to be part of the world of work and also to encourage more employers to be carer-friendly.

The work was commissioned by the Department of Health (now the Department of Health and Social Care), the Department for Work and Pensions and the Government Equalities Office. The Social Care Institute for Excellence (SCIE) co-ordinated and supported the delivery of the project. The Institute for Employment Studies (IES) was commissioned to undertake an independent evaluation.

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Depressive symptoms among adult children caregivers in China: moderating effects of working status and gender

Objectives: With over one-fifth of the world's older population, shrinking family size and increasing number of women in the workforce, elder care is a growing challenge for families in mainland China. This study explored the moderating effect of working status and gender on caregiving time and depressive symptoms among adult children caregivers in mainland China. Method: Participants were 660 adult children caregivers from a nationally representative sample of individuals aged 45 + (N = 13,204) who participated in the China Health and Retirement Longitudinal Study (CHARLS) Wave 2 (2013). Multiple linear regression was used to analyze the direct effect of caregiving time and the moderating effects of working status and gender on symptoms of depression among caregivers. Results: Significant main effect between caregiving time and depressive symptoms was found controlling for demographic covariates. The three-way interaction between working status, gender and caregiving time was also significant. Working status and gender moderate the effect of caregiving time on depressive symptoms: among employed men and women caregivers, spending more hours providing care predicted fewer depression symptoms. Unemployed men caregivers who spent more hours providing care showed highest level of depressive symptoms. Conclusion: The relationship between caregiving time and depressive symptoms was moderated by working status and gender. Future research is needed to explore factors that influence changes in caregivers' health and well-being over time. 

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Caregiving time costs and trade-offs: Gender differences in Sweden, the UK, and Canada

Population ageing is putting pressure on pension systems and health care services, creating an imperative to extend working lives. At the same time, policy makers throughout Europe and North America are trying to expand the use of home care over institutional services. Thus, the number of people combining caregiving responsibilities with paid work is growing. We investigate the conflicts that arise from this by exploring the time costs of unpaid care and how caregiving time is traded off against time in paid work and leisure in three distinct policy contexts. We analyze how these tradeoffs differ for men and women (age 50-74), using time diary data from Sweden, the UK and Canada from 2000 to 2015. Results show that women provide more unpaid care in each country, but the impact of unpaid care on labor supply is similar for male and female caregivers. Caregivers in the UK and Canada, particularly those involved in intensive caregiving, reduce paid work in order to provide unpaid care. Caregivers in Sweden do not trade off time in paid work with time in caregiving, but they have less leisure time. Our findings support the idea that the more extensive social infrastructure for caring in Sweden may diminish the labor market effects of unpaid care, but highlight that throughout contexts, intensive caregivers make important labor and leisure tradeoffs. Respite care and financial support policies are important for caregivers who are decreasing labor and leisure time to provide unpaid care.

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Employment adjustment and mental health of employed family caregivers in Canada

Family caregivers make employment adjustment to fulfill caregiving responsibility. However, the studies on the family caregivers' mental health outcomes associated with their employment adjustment are limited. This study utilized the role theory and stress process model of caregiving to examine the relationship between employment adjustment and mental health outcomes among family caregivers, and to test family-to-work role conflict as a mediator and workplace support as a moderator in this relationship. Data (n = 1,696) were drawn from the 2012 Canada General Social Survey: Caregiving and Care Receiving. Findings suggest that employment adjustment is significantly associated with negative mental health outcomes including worse self-rated mental health and higher life stress level. In addition, family-to-work role conflict mediates between employment adjustment and mental health outcomes, with the mediating effect as significant at all levels of workplace support and as weak with increasing workplace support. The findings highlight the role of family-to-work role conflict in understanding the influence of employment adjustment on family caregiver's mental health, and the implication of workplace support on promoting caregiver-friendly workplace culture to alleviate family-to-work role conflict thereby resulting in better mental health outcomes.

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Will I care? The likelihood of being a carer in adult life

The report finds that 65% of UK adults can expect to care unpaid for a loved one in their lifetime. The findings released in this report add crucial new data. Past studies have often relied on ‘snapshot’ data (which capture a moment in time), or research that shows what caring means for individuals but that is not representative of the whole population. Our new findings are from the highest quality UK surveys, based on data collected over decades from large representative samples of people regularly asked about caring and other aspects of their lives. We hope this new analysis will also contribute to achieving progress for carers, who, across the UK, urgently need better services and more support to manage work and care.

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Intellectual disability and autism: socioeconomic impacts of informal caring, projected to 2030

Background Intellectual disability and autism spectrum disorder (ASD) influence the interactions of a person with their environment and generate economic and socioeconomic costs for the person, their family and society. Aims To estimate costs of lost workforce participation due to informal caring for people with intellectual disability or autism spectrum disorders by estimating lost income to individuals, lost taxation payments to federal government and increased welfare payments. Method We used a microsimulation model based on the Australian Bureau of Statistics' Surveys of Disability, Ageing and Carers (population surveys of people aged 15–64), and projected costs of caring from 2015 in 5-year intervals to 2030. Results The model estimated that informal carers of people with intellectual disability and/or ASD in Australia had aggregated lost income of AU$310 million, lost taxation of AU$100 million and increased welfare payments of AU$204 million in 2015. These are projected to increase to AU$432 million, AU$129 million and AU$254 million for income, taxation, and welfare respectively by 2030. The income gap of carers for people with intellectual disability and/or ASD is estimated to increase by 2030, meaning more financial stress for carers. Conclusions Informal carers of people with intellectual disability and/or ASD experience significant loss of income, leading to increased welfare payments and reduced taxation revenue for governments; these are all projected to increase. Strategic policies supporting informal carers wishing to return to work could improve the financial and psychological impact of having a family member with intellectual disability and/or ASD.

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Family caregivers for cancer patients

Non formal, especially family caregivers are the most vital support for cancer patients in their healing process. However, caregivers are the least known, informed, and researched of all groups of people surrounding cancer patients. Ten family members are individually interviewed on their phenomenal experience in caring for cancer patients. Common themes that emerged from the interviews include financial, social emotions, and physical challenges. Financial problems rooted from unemployment as caregivers have to spent time looking after their sick family members. Social emotional problems included perception from society on their unemployment and family relationship issues. Caregivers also experienced physical strains as they put aside their well being in caring for others. However, caregivers have their own coping skills which included positive outlook and family support. Understanding of caregivers experiences is important for mental health professionals, medical team attending to the patients, and the public at large. Results of this study suggests further assistance and guidance for caregivers in carrying their responsibilities.

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Implementation of a Psychosocial Intervention Program for Working Caregivers

The overall aim of this pilot study was to examine the feasibility and acceptability of a multicomponent, psychosocial intervention specifically designed to meet the unique needs of caregivers who are balancing caregiving duties with work responsibilities. Seventy-one family caregivers employed at a private, nonprofit institution in South Florida were randomized to either the Caregiver Workstation condition (n = 35) or a control condition (n = 36). Sixty-two caregivers completed the 5-month follow-up. Our results indicate that an intervention tailored to the time demands of a working caregiver is feasible, acceptable to caregivers, and has the potential to have positive long-term effects. Currently, there are limited data available regarding the benefits of employer programs for caregivers or the type of programs caregivers find most useful. This pilot study is the first step in developing a working caregiver intervention program that can be implemented on a broad-scale basis.

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Understanding the psychosocial impact of oral cancer on the family caregivers and their coping up mechanism: A qualitative study in Rural Wardha, Central India

A family caregiver is the one who provides care to their near and dear one who is suffering from some debilitating disease like oral cancer. Apart from providing physical care, they also provide emotional and financial support to their close relatives. They can be the patient's spouse, children, and siblings. This study was, hence, designed to understand the psychosocial impact of caregivers of oral cancer patients. Methodology: This was a qualitative study using in-depth interviews of 24 purposively chosen family caregivers irrespective of age, sex, and relationship with patients, who provided deep insight into the psychosocial impact of the disease on themselves during caregiving of their loved ones and how they coped with it. Interviews were taken in Hindi, in the houses of caregivers. Care was taken to maintain utmost privacy while taking the interviews, which were either audio recorded or noted down. Informed written consent was obtained from participants before the start of the study. Themes were evolved from the interviews and content analysis was performed using ATLAS.ti. Results: Six themes emerged after data analysis. Those were the impact on physical health and lifestyle, emotional impact, impact on family and social relationship, impact on financial and work status, improvement of hospital services, spiritual concern, and acceptance of the disease. A concept map was made to provide a vivid explanation of how oral cancer caused these impacts on caregivers and their interrelationship. Conclusion: Caregiving is not an easy job. This study recommends extra care to be taken in preparing them for caregiving to the oral cancer patients with adequate knowledge of the disease process and its consequences along with counseling facilities in the hospital to address the different psychosocial needs of the patients. 

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The dynamics of social care and employment in mid-life

This study investigates the relationship between the provision of informal care to older parents/parents-in-law and the employment status of adult children in mid-life. The study analyses unique panel data for a cohort of individuals born in 1958 in Britain, focusing on respondents at risk of providing care (i.e. with at least one surviving parent/parent-in-law) and in employment at 50. Logistic regression is used to investigate the impact of caring at 50 and 55 on employment status at 55, controlling for socio-demographic characteristics, the respondent's health status and their partner's employment status. Separate models examine (a) the likelihood of exiting the labour force versus continuing work, and (b) amongst those continuing in work, the likelihood of reducing hours of employment. Different types of care (personal, basic and instrumental support) are distinguished, along with hours of caring. The results highlight that providing care for more personal tasks, and for a higher number of hours, are associated with exiting employment for both men and women carers. In contrast, the negative impact of more intense care-giving on reducing working hours was significant only for men - suggesting that women may juggle intensive care commitments alongside work or leave work altogether. Facilitating women and men to combine paid work and parental care in mid-life will be increasingly important in the context of rising longevity. 

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Informal Carers and Employment: Summary Report of a Systematic Review

Findings from an investigation into the available evidence of strategies for employment retention of people who care, the triggers to labour market exit for carers and the barriers to re-engagement carers may face. 

A systematic review was carried out within DWP in order to enhance understanding of the employment-level consequences of informal caring. The research objective of the secondment was to carry out a systematic review of literature on the potential triggers for informal carers leaving the labour market to provide care. The systematic review answered the following questions:

  • what causes carers to experience a change in labour market status from employed to either unemployed or economically inactive as a result of caring responsibilities
  • when does this labour market transition occur in the individual’s caring journey

The report highlights the barriers faced by carers who wish to be in employment, the strategies in-work carers use to retain employment and the barriers to employment re-engagement when a carer has left the labour market.

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Male/Female Differences in the Impact of Caring for Elderly Relatives on Labor Market Attachment and Hours of Work: 1997-2015

Objectives: Using representative samples of the Canadian labor market (N = 5,871,850), this study examined male/female differences in the impact of informal care on labor market attachment, and the extent to which differences in labor market participation and employment relationships explained these differences over a 19-year period. Methods: We examined four outcomes related to labor market impacts associated with caring for elderly relatives: leaving the labor market, working part-time, taking time off work in the previous week, and the amount of time taken off from work. Regression models examined differences between men and women, and the extent to which gendered labor market roles accounted for these differences. Results: We observed an increase in all labor market outcomes over the study period. Women were more likely than men to experience each outcome. Adjusting for labor market role variables did not change these estimates appreciably. After adjustment for differences in labor market roles women were 73% more likely to leave the labor market, more than 5 times more likely to work part-time, and twice as likely to take time off in the last week due to informal care. Further, for temporary absences to provide care, women took an average of 160 min more per week than men. Discussion: Taken together, these results suggest an increasing impact of informal care on labor market participation in Canada between 1997 and 2005, and it remains gendered. 

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Economic costs of informal care for people with chronic diseases in the community: Lost income, extra welfare payments, and reduced taxes in Australia in 2015–2030

We estimated the economic costs of informal care in the community from 2015 to 2030, using an Australian microsimulation model, Care&WorkMOD. The model was based on data from three Surveys of Disability, Ageing, and Carers (SDACs) for the Australian population aged 15–64 years old. Estimated national income lost was AU$3.58 billion in 2015, increasing to $5.33 billion in 2030 (49% increase). Lost tax payments were estimated at AU$0.99 billion in 2015, increasing to AU$1.44 billion in 2030 (45% increase), and additional welfare payments were expected to rise from $1.45 billion in 2015 to AU$1.94 in 2030 (34% increase). There are substantial economic costs both to informal carers and the government due to carers being out of the labour‐force to provide informal care for people with chronic diseases. Health and social policies supporting carers to remain in the labour force may allow governments to make substantial savings, while improving the economic situation of carers.

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Employment disadvantage and associated factors for informal carers of adults with mental illness: are they like other disability carers?

Background Providing unpaid support to family and friends with disabling health conditions can limit a carer’s capacity to participate in employment. The emotional support needs and unpredictability of caring for people with mental illness may be particularly demanding. While previous research suggests variable employment rates across carers for different conditions, there are limited data on mental health carers specifically. Methods This study analysed employment patterns for working-age, co-resident carers of adults with mental illness in an Australian cross-sectional household survey, the 2015 Survey of Disability, Ageing and Carers. Results Significantly more mental health carers were not employed (42.3%, 95% CI: 36.6–48.1) compared to non-carers (24.0%, 95% CI: 23.5–24.6). Employed mental health carers were more likely to work fewer than 16 h per week (carers: 17.2%, 95% CI: 12.8–22.8, vs. non-carers: 11.7%, 95% CI: 11.3–12.1) and in lower skilled occupations (carers: 22.6, 95% CI: 17.5–28.7, vs. non-carers: 15.7, 95% CI: 15.1–16.2). Among the sub-group of primary mental health carers, 25.8% (95% CI: 15.6–39.5) had reduced their working hours to care and a further 26.4% (95% CI: 17.2–38.2) stopped working altogether. In corresponding comparisons between mental health carers and carers for people with other cognitive/behavioural conditions, and physical conditions with or without secondary mental illness, there were no differences except that mental health carers were more likely to be working in a lower skilled occupation than other cognitive/behavioural condition carers (14.8% of the latter, 95% CI 10.1–21.2). Multivariate logistic regression analyses revealed that female mental health carers were less likely to be employed if they were aged 35–54, had no post-secondary education, had a disability, or cared for someone with severe activity limitations. For male mental health carers, having a disability or caring for someone with severe limitations or who did not receive paid assistance were significantly associated with not being employed. Conclusions These results highlight the employment disadvantage experienced by mental health carers compared to non-carers, and similarities in employment patterns across carers for different conditions. Improving the availability of paid support services for people with mental illness may be an important target to assist carers to maintain their own employment.

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Does the Presence of a Disabled Person in the Household Affect the Employment Probabilities of Cohabiting Women? Evidence from Italy, France and the UK

This paper investigates how the presence of a disabled person in the household affects the employment probabilities of cohabiting women. Using a unique data source and a dynamic probit model accounting for unobserved heterogeneity and endogenous initial conditions, we analyze Italy, France, and the UK, three countries that diverge substantially in terms of welfare system regimes, family and employment policies, and social norms. In line with care theory suggestions, we find that in Italy, where formal caring services are limited, and the male breadwinner model persists, women see reduced employment possibilities when cohabiting with disabled persons. In France and the UK, where family and employment policies, such as low-cost formal care and part-time jobs, provide some support for women in reconciling unpaid and paid work, the presence of a disabled person increases employment probabilities. In disentangling the contributions of disability benefits, it appears that they might provide financial resources to support formal caregiving and, therefore, mitigate the caregiving responsibilities of women.

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Work-Related Opportunity Costs Of Providing Unpaid Family Care In 2013 And 2050

Older Americans living in the community who need help with functional limitations overwhelmingly rely on unpaid care, which is often provided by working-age family members. This study assessed the impact of unpaid family caregiving on the likelihood of working and hours worked for caregivers and calculated the related cost of forgone earnings in 2013 and 2050. The current economic cost is about $67 billion, which by midcentury will likely double to $132-$147 billion, fueled primarily by the growth of the disabled older population and the increased share of better-educated caregivers. Average opportunity cost per caregiver will likely increase by 8-20 percent and per US resident by 54-72 percent. Future policy action could benefit from accounting fully for the economic costs in addition to the benefits of unpaid caregiving, which would help better define the scope and size of programs needed to support caregivers. 

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The relationship between elder care-giving and labour force participation in the context of policies addressing population ageing: A review of empirical studies published between 2006 and 2016

This paper systematically reviews empirical research published between 2006 and 2016 on the relationship between informal care-giving to elders and labour force participation (LFP). It does so in the context of Organisation for Economic Co-operation and Development policy responses to population ageing. In this context, conclusions regarding the LFP and care-giving relationship should at least be applicable to the sub-population of working-aged individuals who are most likely to provide informal elder care. Currently, these are women in mid-life and the recipients of their care are mostly extra-residential parents. The review's key conclusion is that mid-life women care-givers of elderly parents are significantly likely to reduce their working hours and also to work fewer hours relative to their non-care-giving counterparts. In drawing this conclusion, the review shows that studies finding only modest care-giving effects on LFP either do not adequately control for care-giving intensity or their conclusions apply to sub-populations less likely to be affected by policies addressing population ageing.

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State of Caring 2019: A snapshot of unpaid care in the UK

Carers UK carried out an online survey between March and May 2019. A total of 8,069 carers and former carers responded to the survey – we have only included responses from the 7,525 people who are currently providing care in this report. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. Of respondents to the survey:

  • 73% live in England, 10% live in Scotland, 9% live in Northern Ireland, and 8% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 30% are aged 45–54, 32% are aged 55– 64, 14% are aged 65–74, and 5% are aged 75 and over. 
  • 3% identified as lesbian, gay or bisexual.
  • 5% described their ethnicity as black or minority ethnic.
  • 20% also have childcare responsibilities for a non-disabled child under 18. 
  • 39% are in paid work. Of those, 47% work full-time and 53% part-time. 
  • 31% have been caring for 15 years or more, 15% for between 10–14 years, 24% for 5–9 years, 26% for 1–4 years, and just 4% have been caring for less than one year. 
  • 46% care for 90 or more hours every week, while 17% care for 50–89 hours, 23% care for 20–49 hours, and 13% care for 1–19 hours a week. 
  • Most (74%) care for one person, 20% care for two people, 5% for three people, and 2% care for four or more people. 

As not all respondents completed every questions in the survey, a number of the figures given in this report, including those presented in this Appendix, are based upon responses from fewer than 7,525 carers. This, together with the sample sizes of different groups, should be taken into consideration when reading the results.

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Unpaid Caregiving Roles and Sleep Among Women Working in Nursing Homes: A Longitudinal Study

Background and Objectives Although sleep is a critical health outcome providing insight into overall health, well-being, and role functioning, little is known about the sleep consequences of simultaneously occupying paid and unpaid caregiving roles. This study investigated the frequency with which women employed in U.S.-based nursing homes entered and exited unpaid caregiving roles for children (double-duty-child caregivers), adults (double-duty-elder caregivers), or both (triple-duty caregivers), as well as examined how combinations of and changes in these caregiving roles related to cross-sectional and longitudinal sleep patterns. Research Design and Methods The sample comprised 1,135 women long-term care employees who participated in the baseline wave of the Work, Family, and Health Study and were assessed at three follow-up time points (6-, 12-, and 18-months). Sleep was assessed with items primarily adapted from the Pittsburgh Sleep Quality Index and wrist actigraphic recordings. Multilevel models with data nested within persons were applied. Results Women long-term care employees entered and exited the unpaid elder caregiving role most frequently. At baseline, double-duty-child and triple-duty caregivers reported shorter sleep quantity and poorer sleep quality than their counterparts without unpaid caregiving roles, or workplace-only caregivers. Double-duty-elder caregivers also reported shorter sleep duration compared to workplace-only caregivers. Over time, double-duty-elder caregiving role entry was associated with negative changes in subjective sleep quantity and quality. Discussion and Implications Simultaneously occupying paid and unpaid caregiving roles has negative implications for subjective sleep characteristics. These results call for further research to advance understanding of double-and-triple-duty caregivers' sleep health and facilitate targeted intervention development. 

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Supporting Working Carers: A Growing Challenge

The purpose of this paper is to highlight the challenges facing people juggling work with care and to explore how employers can develop a workplace culture that supports them.

One in seven UK employees is caring for an older, sick or disabled family member or friend who cannot manage without their support. Currently 600 carers leave work every day, a figure which is not sustainable given the challenges to UK productivity.

Supporting carers in the workplace is an issue which cannot be ignored:

  • The UK is facing a significant skills gap; over the next decade, the number of workers aged 16-49 is forecast to drop while the number of people aged 50-65 will rise
  • Increasing numbers of workers will be taking on caring responsibilities; with our ageing population and rising State Pension age, more people will be combining work with care
  • Carers will include many of your most talented and experienced employees; the peak age for caring is 45-64, an age at which many people will have gained valuable skills and knowledge in the workplace.

Organisations which fail to address these issues and do not create a workplace culture which supports carers are potentially at risk of:

  • Losing top talent and skills
  • Incurring recruitment and retraining costs
  • Facing productivity losses

All this impacts the bottom line - It has never been more important to address this growing workforce challenge and to reap the business benefits of creating a fundamentally fair and healthy workplace where everybody has equal opportunity to thrive.

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Issues and challenges in comparing carers' quality of life in England and Japan: lessons from developing the Japanese version of the ASCOT-Carer

Improving the quality of life of carers is the ultimate goal of carers’ policy and support services. This article discusses the issues and challenges in conceptualising and comparing carers’ quality of life in England and Japan, based on developing a Japanese version of the self-completion Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer). Since supporting carers in employment is a key concern in both countries, we particularly focus on this group of carers.

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Male working carers: a qualitative analysis of males involved in caring alongside full-time paid work

Given ageing demographics, the need for carers will increase and studies suggest that men are nearly as likely as women to become carers. The purpose of this study is to understand the specific challenges that male working carers experience with regard to social life and paid work. Participant recruitment was conducted through local carer support groups and male-dominated workplaces. Using a semi-structured format, 15 interviews were conducted. Findings suggest a variety of themes, including caring characteristics, the effects of caring, support systems and coping strategies. Our results indicate that the male working carer population faces specific challenges in the workplace and social settings.

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Supporting carers in their careers

In the June edition of the British Ecological Society Bulletin The Niche, an article appeared that I wrote about student carers in the UK.  The BES is a huge network of people who work in the environmental sector in the UK, but also around the world, it’s a network of peers that I hope to move into in my career. I’m very happy to have appeared within it, but also a little daunted given the nature of the article. I have reproduced the article here, followed by a discussion about it.

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The Sandwich Generation: Caring for Oneself and Others at Home and at Work

Rising life expectancy has led to the growth of the ‘Sandwich Generation’ – men and women who are caregivers to their children of varying ages as well as for one or both parents whilst still managing their own household and work responsibilities. This book considers both the strains and benefits of this position.

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Creating Inclusive Spaces for Academic Staff with Caregiving Responsibilities: Guidance and Recommendations

This briefing provides an overview of findings from research led by Prof. Moreau that looks at the relationship between care and academia for different groups in Higher Education (HE) in England. The most recent publication is an SRHE report which explores experiences of senior academic staff who are caregivers, with previous research projects looking at other academics, including Early Career Researchers, and students. The research reports are listed in the references section overleaf if you would like to read about this subject in more detail. This particular document focuses on academics with caregiving responsibilities. It presents recommendations for how practitioners and policy makers, at an institutional and national level, can work towards making academia a more inclusive space for these academics.

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A forgotten Army: Coping as a carer

Unpaid carers are the backbone of our society who often go unrecognised for their dedication and compassion. They face a range of challenges as they attempt to juggle their work-life-care responsibilities. That’s why we decided to commission YouGov to conduct a UK-wide research project focused on identifying gaps in support and sought to understand the views of unpaid carers.

Key findings

The impacts of loneliness, poor mental and physical health, financial worries and a lack of flexibility to learn or train are placing unpaid carers under increasing strain.

  • Two thirds (64%) of carers were most likely to feel the effect of caring on their social life, causing loneliness, which most commonly manifested as a result of having less time to themselves (48%), socialising less (47%) and generally having less contact with others (41%).
  • The next most common impact was mental ill health (49%). This included increased stress (42%), anxiety (33%) and depression (27%).
  • Almost half (45%) mentioned impacts that caring had on their family life, most notably spending less time with family.
  • Two in five carers reported an impact of caring on their physical health, most often mentioning tiredness (35%), trouble in sleeping (28%) and reduced fitness (20%).
  • More than two in five (44%) unpaid carers noted the impact of caring on their financial situation. The qualitative phase of the research also revealed many hidden costs of caring, including paying for medical supplies and transport to and from appointments.
  • Three in ten unpaid carers aged 16-34 said that their education or training had been affected.

When carers were asked about their support needs, a sizable majority (74%) of carers felt that further support in some form would be useful to them, with a common desire for emotional support (33%). Carers also sought information and advice about the support available, respite care, and finances. Our report also found that there was a need for advice about maintaining good mental and emotional health, shining a light on the often unexpected levels of stress, isolation and despondency felt by unpaid carers.

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Associations among behavioral and psychological symptoms of dementia, care burden, and family‐to‐work conflict of employed family caregivers

Aim: The present study aimed to examine the associations among behavioral and psychological symptoms of dementia (BPSD) of persons with dementia (PWD), care burden and family‐to‐work conflict (FWC) of employed family caregivers. Method: A cross‐sectional study was carried out with employed adult daughter or son (or in‐law) caregivers for PWD from two rural cities in Japan. FWC, care burden and the degree of BPSD were evaluated by the Survey Work‐Home Interaction‐NijmeGen, Zarit Burden Scale‐Short Version and Dementia Behavior Disturbance Scale, respectively. Of the 200 questionnaires distributed, 130 were returned. A total of 53 respondents were not employed, and seven questionnaires had missing data for demographic variables, Survey Work‐Home Interaction‐NijmeGen, Zarit Burden Scale‐Short Version or Dementia Behavior Disturbance Scale. Thus, complete data from 70 respondents were analyzed through structural equation modeling. Results: The mean age of employed family caregivers was 56 years, and 34 (48.5%) were men. The mean age of PWD was 84 years, and there were 68 (68.6%) men. The path model with a good fit was shown (root mean square error of approximation 0.136, comparative fit index 0.960 and goodness of fit index 0.965). The path model showed that BPSD affected FWC, and that the association was partially mediated by care burden. Conclusions: The results show that a decrease in not only care burden, but also BPSD, of PWD is important for employed family caregivers to reduce their FWC and maintain their work–life balance. 

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The opportunity costs of caring for people with dementia in Southern Spain

Objective: The aim of this paper is to study the opportunity costs (OC) that are involved in being a caregiver and to compare them with the direct costs assumed by the State and the families. We evaluate direct cost (those that imply a payment-out-of-pocket) and indirect cost (those that imply a dedication in time). We hypothesized that costs increase with the severity of the dementia, with the educational level and active occupational situation of caregiver. They are greater if the caregiver is male, but if the patient and caregiver cohabit they are reduced.; Method: 778 surveys were analyzed. Data was collected using a questionnaire specifically designed for the purpose, with the collaboration of Alzheimer's Diseases Associations in Andalusia (Spain). For the indirect cost, we used the reveal preferences method. For the comparison between groups an ANOVA and a MANOVA was done.; Results: The hypotheses were confirmed. The OC exponentially increases with severity. More than 55% of costs are assumed by families. Occupied people have higher educational level and incomes and contract more external support. Costs are significantly higher for male caregivers. Cohabiting reduces all kinds of costs.; Conclusions: The relationship between educational level and employment situation lead to think that if these variables are greater more people will seek professional support. Cultural reasons still maintain women as main caregivers for all educational levels. The existence of these informal caregivers as the main care providers is a saving for the State, and a brake for the development of professional supply.

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Informal caregiving and diurnal patterns of salivary cortisol: Results from the Whitehall II cohort study

The objective was to investigate the relationship between various aspects of informal caregiving and diurnal patterns of salivary cortisol, with special attention to the moderating effect of sex and work status. The study population was composed of 3727 men and women from the British Whitehall II study. Salivary cortisol was measured six times during a weekday. Aspects of caregiving included the relationship of caregiver to recipient, weekly hours of caregiving, and length of caregiving. Diurnal cortisol profiles were assessed using the cortisol awakening response (CAR) and diurnal cortisol slopes. Results showed that men, but not women, providing informal care had a blunted CAR compared with non-caregivers (P Interaction = 0.03). Furthermore, we found a dose-response relationship showing that more weekly hours of informal care was associated with a more blunted CAR for men (P trend = 0.03). Also, the blunted CAR for men was especially pronounced in short-term caregivers and those in paid work. In women, the steepest cortisol slope was seen among those in paid work who provided informal care (P Interaction = 0.01). To conclude, we found different cortisol profiles in male and female informal caregivers. Male caregivers had a blunted CAR, which has previously been associated with chronic stress and burnout. Future research should investigate whether results are generalizable beyond UK citizens with a working history in the civil service.

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Invisible partners in care: Snapshot of well-being among caregivers receiving comprehensive support from Veterans Affairs

Background and aims: Since May 2011, over 23 000 caregivers of Veterans seriously injured on or after September 11, 2001 have enrolled in the Program of Comprehensive Assistance for Family Caregivers (PCAFC). PCAFC provides caregivers training, a stipend, and access to health care. The aim of this study is to describe the characteristics of caregivers in PCAFC and examine associations between caregiver characteristics and caregiver well-being outcomes.; Methods: We sent a web survey invitation to 10 000 PCAFC caregivers enrolled as of September 2015. Using linear and logistic regressions, we examine associations between PCAFC caregiver characteristics and caregiver outcomes: perceived financial strain, depressive symptoms (Center for Epidemiologic Studies Depression Scale [CESD-10]), perceived quality of Veteran's Veterans Health Administration (VHA) care, and self-reported caregiver health.; Results: We had complete survey data for 899 respondents. Since becoming a caregiver, approximately 50% of respondents reported reducing or stopping work. Mean time spent providing care was 3.8 years (median 3, IQR 1-5) with an average of 4.9 weekdays (median 5, IQR 5-5) and 1.9 weekend days (median 2, IQR 2-2). The mean CESD-10 score was 8.2 (median 7, 4-12), at the cutoff for screening positive for depressive symptoms. A longer duration of caregiving was associated with having 0.08 increase in rating of financial strain (95% CI, 0.02-0.14). Caregiver rating of the Veteran's health status as "fair" or better was a strong predictor of better caregiver outcomes, ie, self-reported caregiver health. However, higher levels of education were associated with worse caregiver outcomes, ie, lower global satisfaction with VHA care, higher CESD-10 score, and higher rating of financial strain.; Conclusions: Higher depressive symptoms among longer duration caregivers, coupled with high rates of reductions in hours worked, suggest interventions are needed to address the long-term emotional and financial needs of these caregivers of post-9/11 Veterans and identify subpopulations at risk for worse outcomes.

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Caring for the elderly at work and home: Can a randomized organizational intervention improve psychological health?

Although job stress models suggest that changing the work social environment to increase job resources improves psychological health, many intervention studies have weak designs and overlook influences of family caregiving demands. We tested the effects of an organizational intervention designed to increase supervisor social support for work and nonwork roles, and job control in a results-oriented work environment on the stress and psychological distress of health care employees who care for the elderly, while simultaneously considering their own family caregiving responsibilities. Using a group-randomized organizational field trial with an intent-to-treat design, 420 caregivers in 15 intervention extended-care nursing facilities were compared with 511 caregivers in 15 control facilities at 4 measurement times: preintervention and 6, 12, and 18 months. There were no main intervention effects showing improvements in stress and psychological distress when comparing intervention with control sites. Moderation analyses indicate that the intervention was more effective in reducing stress and psychological distress for caregivers who were also caring for other family members off the job (those with elders and those "sandwiched" with both child and elder caregiving responsibilities) compared with employees without caregiving demands. These findings extend previous studies by showing that the effect of organizational interventions designed to increase job resources to improve psychological health varies according to differences in nonwork caregiving demands. This research suggests that caregivers, especially those with "double-duty" elder caregiving at home and work and "triple-duty" responsibilities, including child care, may benefit from interventions designed to increase work-nonwork social support and job control.

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Economic Spillover Effects of Intensive Unpaid Caregiving

Background: Growing evidence has documented economic spillover effects experienced by intensive caregivers across the lifecycle. These spillover effects are rarely incorporated in economic analyses of health interventions. When these costs are captured, it is shown that commonly applied methods for valuing caregiver time may be underestimating the true opportunity costs of informal care. We explore how intensive caregiving is associated with economic outcomes for caregivers aged 18 years and older.; Methods: We used the cross-sectional 2013 RAND Survey of Military and Veteran Caregivers, a survey of 3876 caregivers and non-caregivers aged 18 years and older to conduct multivariable analyses and calculate average marginal effects, focusing on the association between intensive caregiving (i.e., providing ≥ 20 h of weekly care) and six economic outcomes: schooling, labor force participation, taking unpaid time off of work, cutting back work hours, quitting a job, and early retirement.; Results: Intensive caregivers are 13 percentage points (95% confidence interval [CI] 8-18) less likely to be employed than non-caregivers. Intensive caregivers are 3 percentage points (95% CI 0.5-5) more likely to cut back schooling, 6 percentage points (95% CI 2-10) more likely to take unpaid time off of work, 4 percentage points (95% CI 0.1-9) more likely to cut back work hours, 12 percentage points (95% CI 8-15) more likely to quit a job, and 5 percentage points (95% CI 2-7) more likely to retire early due to caregiving responsibilities relative to non-intensive caregivers.; Conclusions: Despite the difficulty of quantifying the true opportunity costs of informal care, policy makers and researchers need to understand these costs. The higher the opportunity costs of unpaid care provision, the less likely it is that caregivers will provide this care and the less economically attractive this 'free' source of care is from a societal perspective.

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Stress-buffering Effect of Coping Strategies on Interrole Conflict among Family Caregivers of People with Dementia

Objectives: To examine the stress-buffering effect of coping strategies on the adverse effects of interrole conflict on the mental health of employed family caregivers, and clarify the moderating role of attentional control on this stress-buffering effect. Methods: Data were drawn from a two-wave longitudinal online survey of employed Japanese family caregivers of people with dementia (263 males, 116 females; age 51.54 ± 9.07 years). We assessed interrole conflict, coping strategies, attentional control, mental health variables (psychological strain and quality of life), and confounding factors. Results: Hierarchical regression analyses controlled for sociodemographic factors found formal support seeking had a stress-buffering effect for strain- and behavior-based caregiving interfering with work (CIW) only on psychological strain, and was moderated by attentional control. Single slope analysis showed higher CIW was related to higher psychological strain in those with greater use of formal support seeking and lower attentional control, but not in those with higher attentional control. Conclusions: Greater use of formal support seeking weakens the adverse effects of strain- and behavior-based CIW on psychological strain in people with high attentional control. Clinical Implications: Attentional control is a key factor in the stress-buffering effect of formal support seeking on strain- and behavior-based CIW. 

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Caregiver Burden and Work Productivity Among Japanese Working Family Caregivers of People with Dementia

Background: We examined the association between caregiver burden and work productivity (i.e., absenteeism, presenteeism, and overall work impairment) among working family caregivers of people with dementia and whether job characteristics (i.e., job demands, job control, supervisor and coworker support) moderate this association.; Methods: A cross-sectional correlational study design using a web-based questionnaire survey was conducted among 379 Japanese working family caregivers of people with dementia (105 female, age range 20-77) in May 2016, which measured caregiver burden, work productivity, care situation, job characteristics, and demographics. Caregiver burden was designated as an independent variable and each aspect of work productivity as a dependent variable in a hierarchical multiple regression analysis, adjusting for demographics. Interaction terms between caregiver burden and each job characteristic were also included in the model.; Results: Caregiver burden was significantly and positively associated with presenteeism (β = 0.219, p < 0.001) and overall work impairment (β = 0.181, p < 0.001), while the association of caregiver burden with absenteeism was not significant (β = - 0.003, p = 0.953). Interaction effects of caregiver burden × coworker support on presenteeism (β = - 0.189, p = 0.023) and overall work impairment (β = - 0.172, p = 0.034) were significant. According to simple slope analyses, caregiver burden was greater at lower levels of coworker support compared to higher levels of coworker support for both presenteeism and overall work impairment.; Conclusions: Our study suggests that higher caregiver burden is associated with a decrease in work productivity. Additionally, coworker support appears to buffer the association of caregiver burden with presenteeism and overall work impairment among working family caregivers of people with dementia.

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Paid Family Leave: An Emerging Benefit for Employed Family Caregivers of Older Adults

As our population ages, the ability to take time off to care for an ill family member or close friend without losing income or a job is a growing social, health, and economic issue for American families. Therefore, the need for paid family leave policies for workers with caregiving responsibilities is an important topic for employers and policymakers, in the clinical care of older adults, and at kitchen tables across the United States. Despite this growing need, paid family leave is not available to most workers, and there is no national paid family leave policy. Health care and social service providers have a role in ensuring that family members of their patients with a serious health condition or disability are aware of the potential availability of paid family leave benefits in the states and businesses that provide them. Building a better system of care for older adults means changes not only in health care settings and in long-term services and supports, but in workplaces too. This article describes the challenges faced by workers with family caregiving responsibilities, explains why paid family leave matters, indicates which states have adopted these protections, and reviews research on existing paid family leave policies. Finally, actions by clinicians and other stakeholders are offered to advance awareness about paid family leave benefits, including coverage for workers with care responsibilities for older people.

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The impact of carer status on participation in healthy activity and self-reported health among Australian women over 50 years

Background/aim: Occupational therapists frequently work with carers and their family member who requires direct services. In Australia, women provide the majority of informal care. Carer status is determined by the provision of informal help or supervision to an older person, or a person with a disability or long-term health condition. Caregiving responsibilities can impact mental and physical health and reduce women's participation in leisure activities and the labour force. The aim of the study was to examine differences in the participation of Australian women, aged 50 years and over, with and without caregiving responsibilities, in self-selected health promoting activities, self-reported mental health and participation in physical activity.; Methods: This cross-sectional study investigated Australian women (N = 157) who completed a survey comprising demographic questions, the Depression Anxiety Stress Scales-21 (DASS-21), International Physical Activity Questionnaire-Short Form (IPAQ-SF) and the Health Promoting Activities Scale (HPAS). Differences between carers and non-carers in participation in health promoting activities, mental health, physical activity and labour force participation were investigated using Mann-Whitney U and Kruskal-Wallis tests.; Results: Carers reported significantly lower participation in health promoting activities (P < 0.001), vigorous physical activity (P = 0.001) and moderate physical activity (P = 0.009). Carers also reported significantly higher responses than non-carers, in symptoms of depression, anxiety and stress (P < 0.001). Carers were significantly more likely than non-carers to be engaged in part-time employment, with 37% of carers employed part-time and 44% of carers not working.; Conclusion: These findings indicate significant differences between women with and without caregiving responsibilities and their participation in health promoting activities, self-reported mental health, participation in physical activity and the labour force. Carers may benefit from occupational therapy that recognises the important role of carers in the life of their family member and supports carer's health and participation in health promoting activities.

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Older adults neglected by their caregivers: vulnerabilities and risks identified in an adult protective services sample

Purpose Using a risk and vulnerability framework, the purpose of this paper is to describe the characteristics of older adults that Adult Protective Services (APS) substantiated for neglect by caregivers, their caregivers and the interrelationships between them. Design/methodology/approach The paper uses a qualitative study of 21 APS case record narratives using a template analysis. Findings Neglect related to withholding or refusing medical care was the most common. The older adults had multiple health conditions and geriatric syndromes. Caregivers had difficulties in carrying out caregiving role due to health and mental health issues, work responsibilities and lack of insight into older adults’ needs. The refusal to access or accept services by both the older adults and the caregivers was a predominant theme. Research limitations/implications The sample size was small, limited to one geographical area, and non-representative of all neglect cases. The data were extracted from written case narratives and not directly from the older adults and their family members. Case records varied in the case detail provided. Practical implications To protect vulnerable older adults and improve quality of life, APS involvement in cases of caregiver neglect needs strategies to get people to accept help and access services to address multiple health and psychosocial problems for both older adult victims and their caregivers. Originality/value This study provides in-depth information on APS cases involving caregiver neglect that add to understanding of this complex problem and points to areas for further study.

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Eldercare and Childcare: How Does Caregiving Responsibility Affect Job Discrimination?

Despite rising legal claims, little research has examined discrimination against job applicants or employees because of their family caregiving responsibilities. Across three studies, we examine discrimination in hiring and starting salary decisions among equally qualified job applicants based on their elder, child, or sandwiched caregiving responsibilities. In study 1, primary caregiving parents were less likely to be hired, were offered lower salaries, and were rated as less competent, committed, available, and agentic, compared to non-primary caregiving parents. In study 2, primary child and elder caregivers were less likely to be hired and received lower salaries, and they were evaluated more negatively on job-related factors than non-caregivers, especially if they were female. In study 3, primary sandwiched caregivers (i.e., those responsible for both elder and child care) were less likely to be hired and were given lower salaries than primary child caregivers in a male-dominated job. Sandwiched caregivers were evaluated more negatively than other caregivers in both female- and male-dominated jobs.

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Employed Caregivers’ Response to Family-Role Overload: the Role of Control-at-Home and Caregiver Type

Drawing from role theory, stress and coping, and caregiving literatures, this paper develops a model of family-role overload involving two forms of caregiver burden (subjective, objective) and two types of maladaptive changes in employee behavior (at work, personal), and hypothesizes that caregiver type (eldercare-only vs. sandwich) moderates all paths in the model. Partial Least Squares structural equation modeling (SEM) supported all hypothesized direct paths. Contrary to our hypotheses, data analysis showed two positive relationships (i.e., objective caregiver burden to family-role overload, family-role overload to maladaptive changes in personal behavior) were stronger for those in the eldercare-only sample than for those in the sandwich sample. Post hoc analysis revealed five significant gender differences in the relationships included in our model. This study contributes to work–family theory by reinforcing the need to consider both caregiver type and gender when researching the challenges faced by employees trying to balance work and caregiving.

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Eldercare and Work Among Informal Caregivers: A Multidisciplinary Review and Recommendations for Future Research

Although research on eldercare and work has burgeoned in recent years, current literature is lacking an integrative model or framework to summarize existing findings and guide future research. The purpose of this article is to synthesize prior empirical research regarding eldercare among informal caregivers who must balance care with employment. We propose a conceptual model to serve as an organizing framework to understand eldercare and work. More specifically, our model includes predictors and outcomes that are grouped in terms of individual, family, caregiver relationships, work, and societal factors related to elder caregiving and work. We highlight and discuss key factors that mediate and moderate the relations between eldercare and its associated outcomes at multiple levels, including employees, their families, organizations for which caregivers work, and society as a whole. Finally, we provide methodological and substantive recommendations to guide future research.

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Caregiving benefits: Expanding the conversation beyond paid leave

More companies offer paid leave to caregivers Research from Genworth, the National Business Group on Health and MetLife all confirm that caregivers in the workplace are facing challenges ranging from absenteeism, presenteeism and emotional distress to physical health issues and financial burdens. From caring for loved ones with serious health conditions and sick children to maternity and paternity leave and even mental health days, a paid leave program is the mark of many forward-thinking organizations. [...]Bristol Myers Squibb recently demonstrated the flexibility of paid time off by extending the definition of family for their parental leave policy.

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Caregiving to Older Adults: Determinants of Informal Caregivers’ Subjective Well-being and Formal and Informal Support as Alleviating Conditions

Objectives In response to concerns about the sustainability of health care systems that increasingly rely on informal care, we first investigate explanations of informal caregivers’ subjective well-being: primary stressors (care-receivers’ cognitive impairment, functional disability, and problem behavior), primary appraisal (hours of informal caregiving), and secondary appraisal (burden). Second, we investigate the extent that formal (professional home care) and informal support (from other caregivers/volunteers and from family/friends) alleviate well-being losses due to informal care provision. We modified the stress–appraisal model to explicitly include buffering effects of support. Method We analyzed 4,717 dyads of Dutch informal caregivers and their older care-receivers from the Older Persons and Informal Caregivers Survey Minimum DataSet with multilevel techniques. Results Caregivers’ subjective well-being was directly correlated with burden, hours of informal caregiving, and problem behavior of care-receivers. It was indirectly correlated with care-receivers’ cognitive impairment and functional disability. Formal and informal support weakened the positive relationship between primary stressors and caregiving hours. Discussion Modification of the stress–appraisal model appears useful as it identifies which sources of support buffer at which stages of the stress process. Findings suggest that cutbacks in formal/professional care may aggravate negative well-being outcomes of informal caregiving and compromise informal caregivers’ labor market participation.

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Making Ends Meet (or Not): How Public Policy Affects Caregivers' Income

Federal policies present roadblocks to caregivers, especially to their financial security. Federal Medicaid law limits payments for spousal caregiving and the Family and Medical Leave Act only provides for unpaid leave. The Social Security Administration gives no work credits for persons providing free caregiving. Federal Medicaid law requires all caregiving be provided voluntarily, but many state Medicaid programs are not in compliance. And, federal law requires that state Medicaid programs provide protections against spousal impoverishment for persons receiving Medicaid HCBS, but the federal requirement expires at the end of 2018.

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Exploring how workplace and social policies relate to caregivers' financial strain

Informal caregiving is a critical component of the US long-term care system, but can have significant negative impacts on caregiver employment, finances, and well-being. An online survey of Colorado caregivers was piloted in 2016-17 to explore whether workplace and social policies such as access to paid family leave and public health insurance can buffer the negative financial impacts of caregiving and help caregivers to remain in the workforce. Using standardized measures, the survey assessed caregivers' employment and financial status, well-being (physical and mental health, caregiver strain, benefits of caregiving), access to workplace supports, and covariates (e.g., caregiver demographics, health, social support, and service utilization). Ninety-five caregivers, recruited through community agency partners, completed the survey. Respondents were predominately female (89%), middle-aged (M = 57), non-Hispanic White (64%) or Latino/a (22%), and caring for a parent (40%) or spouse (30%) for over one year. Half (51%) reported working full- or part-time jobs, while 16.4% had stopped working because of caregiving. In multivariate regression modeling, predictors of financial strain included the care recipients' financial strain and the caregiver's reduction or ceasing of work. Medicare may be protective to minimize caregivers' need to reduce or cease work. Implications for caregivers' ability to stay engaged in the workforce and prepare for their own retirement are explored.

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Better Support for Carer-Employees in Canada: The Development of Standardised Guidelines for The Workplace

In 2012, it was estimated that more than 5.6 million Canadian employees (35% of the workforce) had adult/elder care responsibilities (Fast et al, 2014). Lack of workplace support leads to consequences such as: carer-employees leaving the workforce/missing work; premature retirement; reduced productivity; health problems; and increased costs to employers (Peters and Wilson, 2017). In 2016, a partnership of committed stakeholders set out to develop a bilingual Canadian Caregiver-Friendly Workplace Standard and Implementation Guide. It is a gender-sensitive, accessible guide for employers and human resource professionals and is suitable for use in a wide range of workplaces.

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Supporting carers in a remote region of Quebec, Canada: how much space for social innovation?

This research moves from the general hypothesis that assistance provided to a person needing support, and the effort needed to articulate work and care may, under certain conditions, become a factor in carers' inequality and vulnerability. The article presents the results of qualitative research conducted in Quebec, Canada, with carers of older people who also have full-time paid employment in the labour market, and on professionals providing these carers with services. It considers how the services offered to carers have been implemented and how they can affect carers' daily lives.

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Take care: How to be a great employer for working carers by David Grayson

It is well understood in Grayson’s book that the programmatic advice promised by its title stands or falls on another question being satisfactorily answered: why be a great employer for working carers? This is duly addressed right at the beginning. The book is divided into three sections: ‘Why care for carers?’, which discusses current economic and demographic trends, and makes the business case for supporting working carers; ‘Seven steps to being a good employer for working carers’, which is the central, and most concrete, programmatic section, and the one most directly addressed to employers; and ‘Building a movement’, which presents further strategies for building networks that adequately support carers in employment, and suggests that creating a society that recognises, values and facilitates the work of caring alongside (and outside) paid employment is the best and most sustainable way of ensuring that carers are supported.

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Gender-based analysis of working-carer men: a North American scoping review

The purpose of this scoping review is to find all existing North American literature on male working carers and compare this information with female working carers. Searches were performed using various databases, published between 1996 and 2016. A total of 506 articles were found and 45 (<i>n</i> = 45) met all inclusion criteria. Five qualitative themes were identified: caregiving characteristics; motives for caring; work impacts; health impacts; and caring in the workplace and coping strategies. This review narrows the gap in the literature with respect to the similarities and differences between male and female working carers, and the way in which they approach caregiving tasks.

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Women, work and care in the Asia Pacific Edited by M. Baird, M. Ford and E. Hill

Gender equality is at the centre of government policy agendas around the world. Boosting women’s labour force participation is seen as the key to economic growth and human development in developing economies, and as an important way of managing ageing population crises in advanced welfare states. Yet, there is scant recognition, especially in developing countries, of the significance of care responsibilities in shaping women’s participation in the labour market. Scholars have analysed the connections between gender, work and care in the rich countries of the Global North, but little research addresses the Asia-Pacific – a region that is home to more than half the world’s population and over 40% of domestic workers. In this compelling collection, the editors – Marian Baird, Michelle Ford and Elizabeth Hill – put the spotlight on this diverse and complex region.

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The business case for employers supporting carers: reflecting on a UK model

Recruiting, retaining and returning carers to the workplace have already been identified as major economic and social issues in the UK. They are likely to become even more important as a consequence of demographic and economic pressures on families and employers (HM Government et al, 2013). This article sets out the current and future context regarding working carers, as well as the business response in terms of policy and practice, highlighting what has been achieved and what has yet to be addressed. It focuses specifically on the work of Employers for Carers (EfC), a membership forum of UK employers committed to supporting carers.

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Bringing the Family in through the Back Door: the Stealthy Expansion of Family Care in Asian and European Long-Term Care Policy

In the era of global ageing, amid political concerns about increasing care needs and long-term sustainability of current care regimes, most high-income economies are seeking to minimise the use of institutional care and to expand formal home care for their older populations. In long-term care reforms, concerns about public funding, formal providers and the paid care workforce are foremost. However, an integral yet hidden part of all these reforms is the stealthily growing role of family carers. This article aims to identify and spell out how developments in formal home care bring about different modes of increasing, encouraging and necessitating family care inputs, across welfare states. Using secondary sources, three different modes were identified, and the article outlines the logic of each mechanism, drawing on illustrative examples of policy dynamics in both European and Asian countries. Family care inputs have increased through policy changes that are not explicitly or primarily about family care, but rather about expansion or changes in formal care. In some cases, this is explicit, in other cases something that happens 'through the back door'. Nonetheless, in all cases there are implications for the family caregivers' time, health and employment options. Future studies are needed to examine longitudinal trends from a comparative perspective to confirm our findings and elucidate how government commitments to formal home care provision and financing interact with the changing nature and volume of family caregiving.

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The Mediating Role of Sleep Quality on Well-Being Among Japanese Working Family Caregivers

The purpose of this study was to investigate whether the well-being of caregivers is mediated by the association between behavioral and psychological symptoms in elderly relatives and the quality of sleep experienced by caregivers using a mediational model. The participants were 105 working family caregivers in Japan. We assessed well-being based on the Kessler Scale 10, self-rated health, and satisfaction in daily life. Our results showed that the well-being in working family caregivers was impacted by the severity of behavioral and psychological symptoms in elderly relatives. Well-being in working family caregivers was also affected by quality of sleep. Maintaining good quality of sleep in working family caregivers is important for reducing caregiver burden and psychological distress, and for improving the balance between work and family life. 

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‘Replacement care’ for working carers? a longitudinal study in England, 2013–15

In the context of rising need for long‐term care, reconciling unpaid care and carers’ employment is becoming an important social issue. In England, there is increasing policy emphasis on paid services for the person cared for, sometimes known as ‘replacement care’, to support working carers. Previous research has found an association between ‘replacement care’ and carers’ employment. However, more information is needed on potential causal connections between services and carers’ employment. This mixed methods study draws on new longitudinal data to examine service receipt and carers’ employment in England. Data were collected from carers who were employed in the public sector, using self‐completion questionnaires in 2013 and 2015, and qualitative interviews were conducted with a sub‐sample of respondents to the 2015 questionnaire. Findings: where the person cared for did not receive at least one ‘key service’ (home care, personal assistant, day care, meals, short‐term breaks), the carer was subsequently more likely to leave employment because of caring, suggesting that the absence of services contributed to the carer leaving work. In the interviews, carers identified specific ways in which services helped them to remain in employment. The authors conclude that, if a policy objective is to reduce the number of carers leaving employment because of caring, there needs to be greater access to publicly‐funded services for disabled and older people who are looked after by unpaid carers.

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The carers' covenant

Based on the findings from research, this report makes recommendations provide better support for carers. The 12 policy recommendations cover five key themes of financial assistance, employment, identification and support, support networks and technology. Together, the policies together form a covenant for carers. The research looked at who informal carers are and the amount of care they provide, explored the experience of informal carers through two focus groups, and looked at the support available for carers internationally. The research found that the number of informal carers and the amount of care they provide has increased in recent years; that carers are often extremely stretched and overworked as a result of their responsibilities; and that the UK lags behind eight other countries examined for their support for carers - Australia, Austria, Belgium, Denmark, Finland, Germany, Italy and Japan. It makes recommendations which aim to deliver greater financial security for informal carers, give them a better work/life balance, help ensure that carers are better identified, improve carers' access to peer support, and ensure that better use is made of the potential of technology to support carers. The recommendations include the introduction of a new Universal Carer’s Income for all carers providing more than 35 hours a week.

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Who cares? The implications of informal care and work for policy makers and employers

Outlines some of the implications associated with the growing number of informal carers in the UK, the health and social care system's increasingly unsustainable reliance on them, and what Government and employers can do about it. The report is informed by the academic and grey literature, as well as views from a workshop attended by over 30 stakeholders from government and non-government bodies, individual carers, carers charities, think tanks, and businesses. The report looks at the increase in the number of informal carers in the UK, the financial and health implications of caring, and the challenge for policy makers and employers as carers become an increasing percentage of an ageing workforce. The report makes recommendations for Government, policymakers and business. The recommendations offer practical guidance on how to improve employment outcomes for carers, and which will also help to tackle the financial and health problems carers face. The recommendations focus on four themes: workplace flexibility; statutory leave; workplace support; and returning to work.

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Barriers to receipt of social care services for working carers and the people they care for in times of austerity

Reconciliation of unpaid care and employment is an increasingly important societal, economic and policy issue, both in the UK and internationally. Previous research shows the effectiveness of formal social care services in enabling carers to remain in employment. Using quantitative and qualitative data collected from carers and the person they care for in 2013 and 2015, during a period of cuts to adult social care in England, we explore barriers experienced to receipt of social care services. The main barriers to receipt of services identified in our study were availability, characteristics of services such as quality, and attitudes of carer and care-recipient to receiving services. These barriers have particular implications for carers' ability to reconcile care and employment.

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Gender and sex differences in carers' health, burden and work outcomes: Canadian carers of community-dwelling older people with multiple chronic conditions

Using two waves of survey data on family carers caring for older adults with multiple chronic conditions in Ontario and Alberta, this article provides a sex and gender analysis of 194 carers' health outcomes. Gender and sex differences were examined on the following health outcomes: general self-efficacy; physical and mental health composite scores; overall quality of life; and the Zarit Burden Inventory – as well as experiences with work interference for carer-employees. Multivariate ordinary least squares linear regressions were used to estimate the effects of sex and gender, controlling for the carer's socio-demographic and geographic characteristics, as well as for the characteristics of the care recipients. Sex and gender were found to have differentiated effects on each health outcome examined, providing evidence for specifically targeting health interventions by sex and gender. First, sex matters, as illustrated by the fact that female carers were found to be experiencing more negative health impacts than male carers (shown in the physical composite score and the quality of life score). This suggests that health-related interventions need to be targeted at female carers. Further, male carers are more likely to experience less carer burden, and more work interference, than female carers. Second, gender matters, as illustrated by the fact that masculine and androgynous genders showed significantly positive associations with general self-efficacy. This suggests that carers with feminine and undifferentiated gender roles experience more challenges with general-self-efficacy and could benefit from training and educational interventions to enhance their confidence in the caring role.

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Working longer, caring harder - the impact of 'ageing-in-place' policies on working carers in the UK and Sweden

Most developed countries have introduced significant changes in housing and long term care policies for older people. Simultaneously, there is increasing policy and economic emphasis on extending working lives and on changes to pension schemes. These changes have combined to have negative consequences for working-age family carers. In this contribution the authors discuss the situations in the UK and Sweden - two countries with different policy traditions but facing similar challenges.

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Information and communication technology-mediated support for working carers of older family members: an integrative literature review

How best to support working carers is being paid increased attention across Europe and internationally. This article examines a largely unexplored area within the empirical literature, namely, information and communication technology-mediated support for working carers of older people. Using an integrative review methodology to draw on both quantitative and qualitative data, 14 studies were identified. Themes included making work–life balance easier, reducing the burden of caregiving and promoting well-being. Factors to consider in the design, implementation and evaluation of innovative support solutions for working carers are put forward. However, a lack of longitudinal studies and biased samples warrants further investigation.

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Innovative employers enhance caregiver benefits

[...]by 2040 the percentage of people aged 65 and older will have nearly doubled to nearly 22%, up from 13% in 2010. According to the Families and Work Institute’s 2016 National Study of Employers, 42% of employers offer elder care resource and referral services and 78% provide some amount of either paid or unpaid time off for employees who need to care for aging relatives. [...]25% of all family caregivers are younger millennials and 50% are under the age of 50. [...]recently, however, employees with elder care responsibilities had to use their paid time-off days or take an unpaid FMLA leave.

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Formal and informal long term care work: policy conflict in a liberal welfare state

Purpose The undervaluing of care work, whether conducted informally or formally, has long been subject to debate. While much discussion, and indeed reform has centred on childcare, there is a growing need, particularly in countries with ageing populations, to examine how long-term care (LTC) work is valued. The purpose of this paper is to provide an overview of the way in which employment policies (female labour market participation, retirement age, and precarious work) and social policies (care entitlements and benefits/leave for carers) affect both informal carers and formal care workers in a liberal welfare state with a rapidly ageing population. Design/methodology/approach Drawing the adult worker model the authors use the existing literature on ageing care and employment to examine the approach of a liberal welfare state to care work focusing on both supports for informal carers and job quality in the formal care sector. Findings The research suggests that employment policies advocating increased labour participation, delaying retirement and treating informal care as a form of welfare are at odds with LTC strategies which encourage informal care. Furthermore, the latter policy acts to devalue formal care roles in an economic sense and potentially discourages workers from entering the formal care sector. Originality/value To date research investigating the interplay between employment and LTC policies has focused on either informal or formal care workers. In combining both aspects, we view informal and formal care workers as complementary, interdependent agents in the care process. This underlines the need to develop social policy regarding care and employment which encompasses the needs of each group concurrently.

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Microsoft introduces family caregiver leave benefit

Microsoft has upped the ante on its already-enviable employee benefits package by adding paid leave for employees who need to take care of an ailing family member. According to recent research from the Northeast Business Group on Health and AARP, caregiving is among the top 10 employee health and wellness benefits priorities for employers, and most employers agree that in the next five years, caregiving is going to become an increasingly important issue among employees.

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Business Should Embrace Paid Caregiver Leave

Professional services firm Deloitte made headlines last year when it unveiled its plan, offering employees up to 16 weeks of paid time off per year to look after a parent or family member as well as for the birth or adoption of a child. AARP also introduced a program under which its full- and part-time employees may request up to two regularly scheduled workweeks of paid time off per calendar year to assist a family member who is ill or needs physical or medical assistance. LĪ] Scott Frisch is executive vice president and chief operating officer at AARP in Washington, D.C. There is great interest-particularly among working women-in having more workplace flexibility and support.

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How can employers do more to support eldercare in the workplace?

Employers are increasingly finding ways to support workers who are juggling jobs, children, and looking after elderly parents. A new era of flexible working is making life easier for carers. For employers that want to do more, concierge-style support programmes are an avenue to explore.

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Why employers need to offer benefits to informal caregivers

[...]23% of employees are spending 41 hours or longer each week caring for a relative, according to a new report from the Northeast Business Group on Health. [...]65% of the insurance company’s employees or their relatives using the service received a changed diagnosis. While more than three in five workers in the United States are covered by the Family Medical Leave Act, which guarantees up to 12 weeks of unpaid leave, it isn’t possible for most caregivers to lose their salary. Other companies offer paid family leave that employees can use for maternity and paternity leave, or for taking care of a sick or disabled parent, spouse or child.

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Health of caregiver-employees in Canada

Purpose The purpose of this paper is to investigate the impact of various employment characteristics on the health of Canadian caregiver-employees (CEs), who are working full-time in the labor market while also providing informal/family care to adults. Design/methodology/approach Framed with Pearlin et al.’s (1990) stress model and using data from Statistic Canada’s General Social Survey Cycle 26 (2012), several work-related variables for caregivers were considered, including the availability of various forms of caregiver-friendly workplace policies (CFWPs), and a series of work interferences (WIs) experienced as a result of the caregiving role. Findings This study provides evidence for the value of CFWPs in all workplaces. Counter-intuitively, family and other forms of support were found to negatively relate to both physical and mental health. Originality/value This suggests that CFWPs will not only have an impact on CEs’ physical health outcomes, but will likely decrease the effect of the WIs experienced.

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Employed family carers in Austria

In this contribution, we investigate the relationships between paid and unpaid work in the lifeworlds of employed informal carers against the background of the Austrian long-term care regime. We pursue a twofold argument: On the one hand, we emphasize that combining paid and unpaid work currently poses serious difficulties for employed family carers in their everyday lives and impacts their current and future financial and social security. On the other hand, we argue that the relationships between employment and informal care are in fact not well understood by the common concepts of “reconciliation” or “work-life balance”. These concepts are not able to explain the complexities of employed carers’ lived realities and fail to adequately address the fundamental contradiction in the idea of a “reconciliation” of paid and unpaid work.

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Young Adult Carers: The Impact of Caring on Health and Education

Research has shown that young people who care for parents and relatives (young carers and young adult carers) are at greater risk of mental and emotional difficulties and are more likely to do badly at school or college. To explore the difficulties faced by young adult carers (aged 14–25) in the UK, an online survey was conducted. Almost half (45%) of the 295 respondents reported having a mental health problem. The relationship between the extent of caring and perceived mental health problems and the impact of caring responsibilities on work and education were investigated.

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Spotlight: Mind the care gap – exposing the health system’s vulnerability to the gap between family care provision and anticipated demand

This Spotlight offers an analysis of family carers, those who provide care and support on an unpaid basis to people who are sick, disabled or frail in the community. It explores how demand for care at home is likely to increase dramatically while the future supply of family carers may be limited by demographic factors. High calculations of the monetary value of family care to the State underscore it’s vulnerability to any future shortage in family carers. Current developments which may have an impact on carers’ lives and the future supply of carers are considered.

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Public expenditure costs of carers leaving employment in England, 2015/2016

In the context of global population ageing, the reconciliation of employment and unpaid caring is becoming an important social issue. The estimation of the public expenditure costs of carers leaving employment is a valuable measure that is of considerable interest to policy makers. In 2012, the Personal Social Services Research Unit estimated that the public expenditure costs of unpaid carers leaving employment in England were approximately £1.3 billion a year, based on the costs of Carer's Allowance and lost tax revenues on forgone incomes. However, this figure was known to be an underestimate partly because it did not include other key benefits that carers who have given up work to care may receive. This paper presents a new estimate of the public expenditure costs of carers leaving employment. Key sources of information are the 2009/2010 Survey of Carers in Households, 2011 Census and 2015/2016 costs data. As well as Carer's Allowance, the estimate also now includes the costs of other benefits that carers leaving work may receive, namely, Income Support and Housing Benefit. The results show that the estimated numbers of carers who have left employment because of caring have increased from approximately 315,000 to 345,000. Due mainly to the inclusion of a wider range of benefits, the public expenditure costs of carers leaving employment in England are now estimated at £2.9 billion a year. The new estimate comprises £1.7 billion in social security benefits paid to people who have left their jobs because of unpaid caring, plus another £1.2 billion in taxes forgone on this group's lost earnings. The paper concludes that, if there was greater public investment in social care, such as "replacement care" to support carers in employment, and fewer carers then left employment, public spending on benefits would be lower and revenues from taxation would be higher.

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Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learning disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well-being both of people with LD and their informal carers. Individuals with LD have lost social support and are experiencing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for further discourse and research on the effects of austerity on people with LD and their family carers.

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New Evidence on Employment Effects of Informal Care Provision in Europe

Objective To estimate how labor force participation is affected when adult children provide informal care to their parents. Data Source Survey of Health, Ageing and Retirement in Europe from 2004 to 2013. Study Design To offset the problem of endogeneity, we exploit the availability of other potential caregivers within the family as predictors of the probability to provide care for a dependent parent. Contrary to most previous studies, the dataset covers the whole working‐age population in the majority of European countries. Individuals explicitly had to opt for or against the provision of care to their care‐dependent parents, which allows us to more precisely estimate the effect of caregiving on labor force participation. Principal Findings Results reveal a negative causal effect that indicates that informal care provision reduces labor force participation by 14.0 percentage points (95 percent CI: −0.307, 0.026). Point estimates suggest that the effect is larger for men; however, this gender difference is not significantly different from zero at conventional levels. Conclusions Results apply to individuals whose consideration in long‐term care policy is highly relevant, that is, children whose willingness to provide informal care to their parents is altered by available alternatives of family caregivers.

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Caregiving, Employment and Social Isolation: Challenges for Rural Carers in Australia

Australia has one of the world’s highest life expectancy rates, and there is a rapidly growing need for informal caregivers to support individuals who are ageing, have chronic illness or a lifelong disability. These informal carers themselves face numerous physical and psychological stressors in attempting to balance the provision of care with their personal life, their work commitments and family responsibilities. However, little is known about the specific challenges facing rural carers and the barriers that limit their capacity to provide ongoing support. A cross-sectional survey composed of open-ended responses and demographic/socioeconomic measures used routinely by the Australian Bureau of Statistics (ABS) and the Australian Institute of Health & Welfare (AIHW) was used with a cohort of 225 rurally-based carers within New South Wales, Australia. Demographic questions specified the respondents’ age, gender, employment, caregiving status, condition of and relationship to the care recipient, postcode, residency status, and distance and frequency travelled to provide care. Open-ended comments sections were provided to allow participants to describe any issues and problems associated with caregiving including employment, travel, residency, carer support groups and any other general information. The results show that most rural carers were middle-aged women supporting a spouse or a child. Unpredictability associated with providing care exacerbated demands on carers’ time, with many reporting significant employment consequences associated with inflexibility and limited job options in rural locations. Specific issues associated with travel requirements to assist with care were reported, as were the impacts of care provision on the respondents’ own personal health. The majority of carers were aware of the social supports available in their local rural community, but did not access them, leaving the carers vulnerable to marginalisation. Problems associated with employment were noted as resulting in financial pressures and associated personal stress and anxiety for the caregivers. While this issue is not necessarily limited to rural areas, it would appear that the lack of opportunity and flexibility evident in rural areas would exacerbate this problem for non-metropolitan residents. The participants also identified specific barriers to the provision of care in rural areas, including the significant impact of travel. Access to support services, such as carer groups, were rarely accessed due to a mix of factors including inaccessibility, poor timing and a lack of anonymity. Financially, there was considerable evidence of hardship, and there is an urgent need for a comprehensive review of government and community-based support to better meet the needs of rural carers.

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Staff experiences of double-duty caring: at home and at work

Many healthcare, social care and voluntary agency employees are carers at work and at home, a phenomenon referred to as double-duty caregiving. Using meta-ethnography, this article provides a synthesis of qualitative research by analysing the original words of the interviewees. A linguistic and metaphoric overview provides a deeper, richer picture of the experience of double-duty caring, revealing the sacrifices associated with being a carer at home while employed in a healthcare system, and the paradoxical effects of holding a position in both worlds simultaneously.

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Admiral Nurses delivering workplace clinics for family carers: Innovative practice

Dementia UK and The Charity for Civil Servants teamed up to test the acceptability and feasibility of delivering a work-based Admiral Nurse clinic to support family carers during their employed working hours. This paper presents some of the learning from this innovative approach.

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Supporting working carers' job continuation in Japan: prolonged care at home in the most aged society

This article concerns new policy challenges relevant to companies in supporting working carers of older people to retain their jobs in Japan. Although long-term leave and flexible working measures have been reformed to address long-term in-home care, the results of new data analysis imply that the effectiveness of support measures differs according to the length of the period of care provided at home. Long-term leave and reducing working hours are effective if the period in which care is provided is relatively short, but when care at home lasts longer, flexibility in the working schedule is crucial. The results also signal the importance of addressing the health of working carers as a new challenge that arises regardless of the length of care at home.

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Nurses as family caregivers - barriers and enablers facing nurses caring for children, parents or both

Aims To examine the dual caregiving and nursing responsibilities of nurses in New Zealand with a view to identifying potential strategies, policies and employment practices that may help to retain nurses with caregiving responsibilities in the workplace. Background As the nursing workforce ages, child-bearing is delayed and older family members are living longer, family caregiving responsibilities are impacting more on the working life of nurses. This may complicate accurate workforce planning assumptions. Method An explorative, descriptive design using interviews and focus groups with 28 registered nurses with family caregiving responsibilities. Results A depth of (largely hidden) experience was exposed revealing considerable guilt, physical, emotional and financial hardship. Regardless of whether the nurse chose to work or had to for financial reasons, family always came first. Conclusions Demographic and societal changes related to caregiving may have profound implications for nursing. Workplace support is essential to ensure that nurses are able to continue to work. Implications for nursing management Increased awareness, support, flexibility and specific planning are required to retain nurses with family caregiving responsibilities. 

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Supporting caregiver employees: managers’ perspective in Canada

Purpose There is a growing recognition that when employees who are caregivers lack the organizational support/resources to manage their paid work with care responsibilities, it could result in poor job performance, increase absenteeism, and have an impact on their well-being. Very little is known about managers’ perceptions in supporting their employees through workplace initiatives such as caregiver-friendly workplace policies (CFWPs). The purpose of this paper is: to examine managers’ experience(s) with employees that are engaged in formal paid care and informal care to explore availability of CFWPs and to explore managers’ standpoints on offering CFWPs to support their employees.Design/methodology/approach The authors draw on the findings from semi-structured qualitative interviews with 20 (n=20) managers working in the health care sector in an urban-rural region in Ontario, Canada. Findings Intersectionality analysis of participant interviews revealed three key themes: managers’ experiences with employees who are caregivers knowledge and availability of CFWPs and balancing business care with staff care. Practical implications Data were drawn from health care sectors in one community in Ontario, Canada and may not generalize to other settings. The small sample size and purposive sampling further limits the generalizability of the findings. Social implications Study findings can be applied to develop workplace policies and procedures that are responsive to workers who are providing unpaid care. Orginality/value This study contributes to limited literature on manager’s perspectives in supporting employees through CFWPs.

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Informal care and long-term labor market outcomes

In this paper we estimate long-run effects of informal care provision on female caregivers' labor market outcomes up to eight years after care provision. We compare a static version, where average effects of care provision in a certain year on later labor market outcomes are estimated, to a partly dynamic version where the effects of up to three consecutive years of care provision are analyzed. Our results suggest that there are significant initial negative effects of informal care provision on the probability to work full-time. The reduction in the probability to work full-time by 4 percentage points (or 2.4-5.0 if we move from point to partial identification) is persistent over time. Short-run effects on hourly wages are zero but we find considerable long-run wage penalties.

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When Employment and Caregiving Collide: Predictors of Labor Force Participation in Prospective and Current Caregivers

Objective: Female caregivers often reduce time spent at work to care for aging family members, which precipitates financial hardship and other adverse outcomes. Little is known about psychosocial correlates of labor force participation (LFP) among female caregivers. The theory of planned behavior posits that social norms, attitudes, and perceived control predict intentions and volitional behaviors, but also that the compelling influence of situational variables undermines enactment of behaviors consistent with one’s intentions. The objective of this study was to employ the theory of planned behavior to examine how psychosocial characteristics predict willingness to reduce LFP among prospective caregivers and actual LFP reduction among active caregivers. Methods: Subsamples of 165 female prospective caregivers and 97 active female caregivers responded to a survey assessing filial beliefs and LFP. Results: Filial obligation and caregiver preparedness predicted intentions to reduce LFP among prospective caregivers, but did not predict actual reduction in LFP in active caregivers. Weekly care demands exceeding 20 hours emerged as the sole correlate of LFP among active caregivers. Conclusions: Domains of the theory of planned behavior predict LFP intentions, but LFP decisions are subject to external pressures, specifically, time demands of the caregiving relationship. Prospective caregivers may benefit from proactive interventions aimed at reducing conflict between situational demands and filial beliefs.

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Informal parental care and female labour supply in Japan

Using the Japanese Study of Aging and Retirement, Japan’s first globally comparable panel survey of the elderly, we estimate the effect on female employment in Japan due to the provision of informal parental care. We observe that informal parental care has little impact on female employment, after controlling for endogeneity of informal care or individual unobserved time-invariant heterogeneity. This finding is consistent with those observed in Europe and the US, underscoring a limited association between care and work in Japan, which is facing ageing at the fastest pace among advanced economies.

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Female Caregivers and Stroke Severity Determines Caregiver Stress in Stroke Patients

Background: Stroke is among the major causes of short- and long-term disability. This study aimed to understand the caregivers (CGs) stress in stroke survivors. Materials and Methods: A 22-item questionnaire was administered to 201 CGs of stroke survivors. The variables tested were physical and mental health, social support, financial, and personal problems. CGs were divided into Group A (Barthel index [BI] <75) and B (BI >75) according to patient's BI, according to gender (male and female CG) and relation; spouses (wife, husband), daughters, sons, daughter-in-law, grandchildren, and rest (father, mother, brother, sister, and in-laws). Data were analyzed using SPSS software version–21. Data were analyzed to determine which variables of the patient effects the CG stress. Results: Majority of the CGs (74.62%) were females. 65% of CGs graded their burden as moderate to severe. 81% of CGs had left their work for caregiving. More than half of the CGs felt sleep disturbance and physical strain. Psychological instability and financial burdens were reported in 3/4th of CGs. Group A CGs faced more sleep, financial, health, and social life disturbance. Patient's bladder and bowel problems, shoulder pain, patients noncooperative attitude for medication administration, and physiotherapy were more upsetting for Group A CGs. Female CGs were subjected to more sleep disturbance, physical and psychological stress, faced more difficulty regarding the patient's bladder, bowel, personal hygiene needs, and physiotherapy. Female CGs felt less motivated in caregiving than male CGs. Wives and daughters-in-law experienced more burden. Time spent and burden perceived was more by female CGs (χ2 = 15.199, P = 0.002) than males (χ2 = 11.931, P = 0.018); wives and daughters than other relations (χ2 = 32.184, P = 0.000), (χ2 = 35.162, P = 0.019). Conclusion: Our study showed that caregiving burden was predominantly shouldered by females CGs. CGs faced physical, psychological, and socioeconomic burden. The burden was more evident in female CGs and in patients with severe stroke.

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Informal employment, unpaid care work, and health status in Spanish-speaking Central American countries: a gender-based approach

To assess the relationship between paid work, family characteristics and health status in Central American workers; and to examine whether patterns of association differ by gender and informal or formal employment.Cross-sectional study of 8680 non-agricultural workers, based on the First Central American Survey of Working Conditions and Health (2011). Main explicative variables were paid working hours, marital status, caring for children, and caring for people with functional diversity or ill. Using Poisson regression models, adjusted prevalence ratios of poor self-perceived and mental health were calculated by sex and social security coverage (proxy of informal employment).A clear pattern of association was observed for women in informal employment who were previously married, had care responsibilities, long working hours, or part-time work for both self-perceived and mental health. No other patterns were found.Our results show health inequalities related to unpaid care work and paid work that depend on the interaction between gender and informal employment. To reduce these inequalities suitable policies should consider both the labor (increasing social security coverage) and domestic spheres (co-responsibility of care).

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Lifting the Burden Formal Care of the Elderly and Labor Supply of Adult Children

We use a reform in the federal funding of care for the elderly in Norway to examine the effects of formal care expansion on the labor supply decisions of middle-aged children. We find a consistent and significant negative impact of formal care expansion on insured work absences for the adult daughters of single elderly parents. This effect is particularly strong for daughters with no siblings, who are also more likely to exceed earnings thresholds after the reform. We find no impacts of the reform on daughters’ mobility or parental health, and no effects on adult sons.

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The Impact of Informal Caregiving Intensity on Women’s Retirement in the United States

With increasing pressure on retirement-aged individuals to provide informal care while remaining in the work-force, it is important to understand the impact of informal care demands on individuals’ retirement decisions. This paper explores whether different intensities of informal caregiving can lead to retirement for women in the United States. Using the National Longitudinal Survey of Mature Women, we control for time-invariant heterogeneity and for time-varying sources of bias with a two-stage least squares model with fixed effects. We find that women who provide at least 20 hours of informal care per week are 1 to 3 percentage points more likely to retire relative to other women. We also find that when unobserved heterogeneity is controlled for with fixed effects, we cannot reject exogeneity. These findings suggest that for a sub-set of high intensity caregivers, policies encouraging both informal care and later retirement may not be feasible without allowances for flexible scheduling or other supports for working caregivers. ᅟ

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Understanding the association between time spent caregiving and well-being among employed adults: testing a model of work–life fit and sense of community

This study examines factors associated with work–life fit and sense of geographic community as mediators of the negative association between caregiving demands and well-being among employed informal caregivers. Data were drawn from a larger project assessing well-being among residents of three mid-size cities in Ontario, Canada. A subsample was selected of informal caregivers who worked for pay for at least eight hours/week ( n  = 276). Caregiving demands were measured by time spent caring for an adult who was a relative, friend, or neighbour. Well-being followed a holistic conceptualization advanced by the Canadian Index of Wellbeing. The more time spent caregiving, the lower participants’ well-being ratings were. This association was mediated by perceived time adequacy, income adequacy, and sense of community, such that the more time participants spent caregiving, the lower their ratings of these three resources. This explained the initial association of caregiving hours with reduced well-being. Enhanced well-being was more strongly associated with sense of community than any other factor, which supports the importance of the community domain in understanding well-being among employed caregivers and suggests its further testing with other population groups. Policy implications for employers and community organizations are provided.

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Indirect Fiscal Effects of Long‐Term Care Insurance*

Informal care by close family members is the main pillar of most long‐term care systems. However, due to demographic ageing, the need for long‐term care is expected to increase while the informal care potential is expected to decline. From a budgetary perspective, informal care is often viewed as a cost‐saving alternative to subsidised formal care. This view, however, neglects that many family carers are of working age and face the difficulty of reconciling care and paid work, which might entail sizeable indirect fiscal effects related to forgone tax revenues, lower social security contributions and higher transfer payments. In this paper, we use a structural model of labour supply and the choice of care arrangement to quantify these indirect fiscal effects of informal care. Moreover, based on the model, we discuss the fiscal effects related to non‐take‐up of formal care.

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Caring too much? Lack of public services to older people reduces attendance at work among their children

The need to provide care for older people can put a strain on their adult children, potentially interfering with their work attendance. We tested the hypothesis that public care for older people (nursing homes or home care services) would moderate the association between having an older parent in need of care and reduced work attendance among the adult children. The analysis used data from a survey of Norwegian employees aged 45–65 (N = 529). Institutional care for older people in need of care (i.e. nursing homes) was associated with improved work attendance among their children—their daughters in particular. Data also indicated a moderating effect: the link between the parents’ reduced health and reduced work attendance among the children was weaker if the parent lived in a nursing home. However, the results were very different for home-based care: data indicated no positive effects on adult children’s work attendance when parents received non-institutionalised care of this kind. Overall, the results suggest that extending public care service to older people can improve their children’s ability to combine work with care for parents. However, this effect seems to require the high level of care commonly provided by nursing homes. Thus, the current trend towards de-institutionalising care in Europe (and Norway in particular) might hamper work attendance among care-giving adult children, women in particular. Home care services to older people probably need to be extended if they are intended as a real alternative to institutional care.

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Spillover effect of Japanese long-term care insurance as an employment promotion policy for family caregivers

We evaluate a spillover effect of the Japanese public long-term care insurance (LTCI) as a policy to stimulate family caregivers’ labor force participation. Using nationally representative data from 1995 to 2013, we apply difference-in-difference propensity score matching to investigate the spillover effect in two periods: before and after the introduction of the LTCI in 2000 and before and after its major amendment in 2006. Our results show that the LTCI introduction has significant and positive spillover effects on family caregivers’ labor force participation and the effects vary by gender and age. In contrast, the LTCI amendment is found to have generally negative spillover effects on their labor force participation. We draw attention to these spillover effects, as expanding labor market supply to sustain the economy would be a priority for Japan and other rapidly aging countries in the coming decades.

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The Caring Company: How Employers Can Cut Costs And Boost Productivity By Helping Employees Manage Caregiving Needs

By investing in a care culture, American companies can prepare themselves for the looming care crisis. The economics of care are misaligned in most companies. Employees don’t get the support they need for their caregiving responsibilities and employers pay the hidden costs, including turnover, rehiring, presenteeism, and absenteeism. (Page includes featured videos and related media coverage.)

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Effects of home-based long-term care services on caregiver health according to age

Background: Caregiver health is a crucial public health concern due to the increasing number of elderly people with disabilities. Elderly caregivers are more likely to have poorer health and be a care recipient than younger caregivers. The Taiwan government offers home-based long-term care (LTC) services to provide formal care and decrease the burden of caregivers. This study examined the effects of home-based LTC services on caregiver health according to caregiver age.

Methods: This cross-sectional study included a simple random sample of care recipients and their caregivers. The care recipients had used LTC services under the Ten-Year Long-Term Care Project (TLTCP) in Taiwan. Data were collected through self-administered questionnaires from September 2012 to January 2013. The following variables were assessed for caregivers: health, sex, marital status, education level, relationship with care recipient, quality of relationship with care recipient, job, household monthly income, family income spent on caring for the care recipient (%) and caregiving period. Furthermore, the following factors were assessed for care recipients: age, sex, marital status, education level, living alone, number of family members living with the care recipient, quality of relationship with family and dependency level. The health of the caregivers and care recipients was measured using a self-rated question (self-rated health [SRH] was rated as very poor, poor, fair, good and very good).

Results: The study revealed that home nursing care was significantly associated with the health of caregivers aged 65 years or older; however, caregivers aged less than 65 who had used home nursing care, rehabilitation or respite care had poorer health than those who had not used these services. In addition, the following variables significantly improved the health of caregivers aged 65 years or older: caregiver employment, 20% or less of family income spent on caregiving than 81%–100% and higher care recipient health. The involvement of daughters-in-law, rather than spouses, and care recipient health were positively related to the health of caregivers aged less than 65 years.

Conclusions: The findings suggest that home-based LTC service use benefits the health of elderly caregivers. By contrast, home-based LTC service use may be negatively correlated with the health of the caregivers aged less than 65 years.

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Informal Care and Labor Market Outcomes: Evidence From Chinese Married Women

Data were used from the 1991–2009 China Health and Nutrition Survey to examine the influence of informal care on labor market outcomes for married women of working aged, with emphasis on caregiving intensity. After accounting for potential endogeneity between caregiving and labor force participation (LFP) through simultaneous equations modeling, caregivers who provided more than 15 or 20 hr of caregiving per week were 4.5–7.7% less likely to be LFPs. Intensive caregivers who remained working had significantly lower (4.97–7.20) weekly hours of work. The significant positive effect of informal care on LFP only existed in the rural sample, and these women also had much lower hours of work than their urban counterparts. Opportunities exist for policy interventions that target intensive caregivers in order to allow them to balance both work and caregiving.

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The multidimensional burden of informal caregivers in primary malignant brain tumor

Purpose: Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective.

Methods: Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated.

Results: ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30–90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year).

Conclusions: IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.

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The humanistic burden associated with caring for patients with advanced non-small cell lung cancer (NSCLC) in three European countries-a real-world survey of caregivers

Purpose: This study evaluated the humanistic burden on caregivers of patients with advanced non-small cell lung cancer (aNSCLC) as the disease progresses.; Methods: Data were drawn from a cross-sectional study of patients with aNSCLC and their caregivers conducted in France, Germany, and Italy between 2015 and 2016. Data were collected by medical chart review and patient and caregiver questionnaires. The EuroQol five-dimension three-level (EQ-5D-3L) was used to evaluate patient and caregiver health status. Caregivers also completed the Work Productivity and Activity Impairment (WPAI) questionnaire and Zarit Burden Interview (ZBI).; Results: The population for the analysis consisted of 427 caregivers (mean age 53.5 years; 72.6% female; 54.9% spouse; 36.2% in full-time employment) and 427 matched patients (mean age 66.2 years; 68.6% male). Most (69.5%) patients were receiving first-line therapy for advanced disease. Patients' caregivers provided a mean of 29.5 h of support per week. Significant differences in EQ-5D-3L scores were observed between caregivers of patients receiving first and later lines of therapy in France (0.87 vs. 0.78; p = 0.0055). Among employed caregivers, overall work impairment was considerable and ranged from 21.1% in Germany to 30.4% in France and 29.7% in Italy. Caregivers of patients receiving later lines of therapy in France rated their own health status as significantly worse than did those caring for patients receiving first-line therapy (82.7 vs. 72.9; p = 0.0039).; Conclusions: Informal caregivers provided the majority of support for patients with advanced NSCLC and their caregiving activities impose a significant humanistic burden.

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Investigating the causal relationship between employment and informal caregiving of the elderly

Objective: Examining the causal relationship between employment and informal caring to date has been impeded in countries like Ireland where there is a lack of suitable panel data and/or variables for instrument construction. This paper employs propensity score matching to control for non-random selection into treatment and control groups which controls for differences in employment outcomes between carers and non-carers in Ireland using data from Quarterly National Household Survey 2009 Quarter 3. Earlier papers focus on using regression techniques which may lead to biased estimates.; Results: Results suggest that differences exist between carers and non-carers with respect to their employment status in Ireland. Overall the results suggest that the effects are more significant for those providing greater hours of informal care per week than those providing fewer hours of care per week. The effects estimated in this paper are likely to be more precise as failing to account for potential biases in the relationship are likely to underestimate the true effect of caring on employment outcomes. We find that propensity score matching provides an alternative method of examining the relationship when suitable panel data and/or variables for instrument construction are not available.

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More than one in four sandwich carers report symptoms of mental ill-health

Sandwich carers – those who care for both sick, disabled or older relatives and dependent children – are more likely to report symptoms of mental ill-health, feel less satisfied with life, and struggle financially compared with the general population.

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Impact of parents' need for care on middle-aged women's lifestyle and psychological distress: evidence from a nationwide longitudinal survey in Japan

Background: Many studies have separately addressed the associations of informal caregiving with coresidence, a caregiver's work status, and health conditions, but not jointly. We examined how their parents' need for care affects middle-aged women's lifestyle and psychological distress, considering the potential simultaneity of decisions on caregiving and living adjustments.; Methods: We used 22,305 observations of 7037 female participants (aged 54-67 years) from a nationwide longitudinal survey in Japan conducted during 2009 and 2013. We considered the occurrence of parents' need for care (OPNC) as an external event and estimated regression models to explain how it affected the probabilities of the participants becoming caregivers, coresiding with parents, and working outside the home. We further conducted the mediation analysis to examine how the impact of OPNC on participants' psychological distress measured by Kessler 6 (K6) scores was mediated by caregiving and living adjustments.; Results: OPNC made 30.9% and 30.3% of middle-aged women begin informal caregiving for parents and parents-in-law, respectively, whereas the impact on residential arrangement with parents or work status was non-significant or rather limited. OPNC raised middle-aged women' K6 scores (range: 0-24) by 0.368 (SE: 0.061) and 0.465 (SE: 0.073) for parents and parents-in-law, respectively, and informal caregiving mediated those impacts by 37.7% (95% CI: 15.6-68.2%) and 44.0% (95% CI: 22.2-75.4%), respectively. By contrast, the mediating effect of residential arrangement with parents or work status was non-significant.; Conclusions: Results underscore the fact that OPNC tends to promote middle-aged women to begin informal caregiving and worsen their psychological distress.

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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.

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Weekly hours of informal caregiving and paid work, and the risk of cardiovascular disease

Background: Little is known on the association between weekly hours of informal caregiving and risk of cardiovascular disease (CVD). The objective was to investigate the individual and joint effects of weekly hours of informal caregiving and paid work on the risk of CVD.; Methods: Pooled analysis with 1396 informal caregivers in gainful employment, from the Swedish Longitudinal Occupational Survey of Health and the Whitehall II study. Informal caregiving was defined as care for an aged or disabled relative. The outcome was CVD during 10 years follow-up. Analyzes were adjusted for age, sex, children, marital status and occupational grade.; Results: There were 59 cases of CVD. Providing care >20 h weekly were associated with a higher risk of CVD compared to those providing care 1-8 h weekly (hazard ratio = 2.63, 95%CI: 1.20; 5.76), irrespectively of weekly work hours. In sensitivity analyzes, we found this risk to be markedly higher among long-term caregivers (6.17, 95%CI: 1.73; 22.1) compared to short-term caregivers (0.89, 95%CI: 0.10; 8.08). Caregivers working ≥55 h weekly were at higher risk of CVD (2.23, 95%CI: 1.14; 4.35) compared to those working 35-40 h weekly. Those providing care >8 h and working ≤40 h weekly had a higher risk of CVD compared to those providing care 1-8 h and working ≤40 h (3.23, 95%CI: 1.25; 8.37).; Conclusion: A high number of weekly hours of informal caregiving as opposed to few weekly hours is associated with a higher risk of CVD, irrespectively of weekly work hours. The excess risk seemed to be driven by those providing care over long periods of time.

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Informal caregiving as a risk factor for type 2 diabetes in individuals with favourable and unfavourable psychosocial work environments: A longitudinal multi-cohort study

Aim: To examine whether informal caregiving is associated with increased risk of type 2 diabetes (T2D), and whether job strain and social support at work modify the association.; Methods: Individual participant's data were pooled from three cohort studies-the French GAZEL study, the Swedish Longitudinal Occupational Survey of Health (SLOSH) and the British Whitehall II study-a total of 21,243 study subjects. Informal caregiving was defined as unpaid care for a closely related person. Job strain was assessed using the demand-control model, and questions on co-worker and supervisor support were combined in a measure of social support at work. Incident T2D was ascertained using registry-based, clinically assessed and self-reported data.; Results: A total of 1058 participants developed T2D during the up to 10 years of follow-up. Neither informal caregiving (OR: 1.09, 95% CI: 0.92-1.30) nor high job strain (OR: 1.04, 95% CI: 0.86-1.26) were associated with T2D risk, whereas low social support at work was a risk factor for T2D (OR: 1.18, 95% CI: 1.02-1.37). Also, informal caregivers who were also exposed to low social support at work were at higher risk of T2D (OR: 1.40, 95% CI: 1.08-1.82) compared with those who were not informal caregivers and had high social support at work (multiplicative test for interaction, P=0.04; additive test for interaction, synergy index=10).; Conclusion: Informal caregiving was not independently associated with T2D risk. However, low social support at work was a risk factor, and informal caregivers with low social support at work had even higher risks of T2D.

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Healthcare utilization and costs in primary care patients with dementia: baseline results of the DelpHi-trial

The objectives of this cross-sectional analysis were to determine healthcare resource utilization and cost for community-dwelling patients with dementia (PWD) from a payer's and societal perspective, and to analyze the associations between costs and sociodemographic and clinical variables. Analysis of healthcare costs from a payer's perspective was based on a sample of 425 PWD, analysis of healthcare costs from societal perspective on a subsample of 254 PWD and their informal caregivers. Frequency of healthcare resource utilization was assessed by means of questionnaires. Informal care and productivity losses were assessed by using the Resource Utilization in Dementia questionnaire (RUD). Costs were monetarized using standardized unit costs. To analyze the associations, multiple linear regression models were used. Total annual costs per PWD valued 7016€ from a payer's and 25,877€ from a societal perspective, meaning that societal cost is approximately three and a half times as much as payer's expenditures. Costs valuated 5456 € for medical treatments, 1559 € for formal care, 18,327€ for informal care. Productivity losses valued 1297€ for PWD caregivers. Informal care could vary substantially (-21%; +33%) concerning different valuation methods. Medical care costs decreased significantly with progression of dementia and with age. Costs of care double over the stages of dementia. Formal care costs were significantly higher for PWD living alone and informal care costs significantly lower for PWD with an employed caregiver. For all cost categories, deficits in daily living activities were major cost drivers.

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Does the Health of Adult Child Caregivers Vary by Employment Status in the United States?

Objective: This study investigates whether the health effects of informal caregiving for aging parents vary by employment status in the United States. Two opposing hypotheses are tested: dual role strain and role enhancement.; Method: Using national longitudinal data from the U.S. Health and Retirement Study, multivariate regression models predicted self-rated health and mental health among older adult children caregiving for their parents (2009-2012) and noncaregivers.; Results: A statistically significant interaction was found between caregiving duration and employment, indicating that employed caregivers had significantly worse health than retired caregivers. Caregiving duration also predicted significantly higher levels of depressive symptoms.; Discussion: Our results support the dual role strain hypothesis and suggest that caregiving for a parent up to 4 years is enough to predict significantly worse health among older adult Baby Boomers, especially those in the labor force. The broader implications for public health and workplace policies are discussed.

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Labor supply effects of long-term care reform in Germany

Many informal caregivers are of working age, facing the double burden of providing care and working. Negative labor supply effects can severely reduce the comparative cost advantage of informal over formal care arrangements. When designing long-term care (LTC) policies, it is crucial to understand the effects not only on health outcomes but also on labor supply behavior of informal caregivers. We evaluate labor supply reactions to the introduction of the German long-term care insurance in 1995 using a difference-in-differences approach. The long-term care insurance changes the caregivers' trade-off between labor supply and care provision. The aim of the reform was to strengthen informal care arrangements. We find a strong negative labor supply effect for men but not for women. We argue that the LTC benefits increased incentives for older men to leave the labor market. The results reveal a trade-off for policy makers that is important for future reforms-in particular for countries that mainly base their LTC system on informal care.

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Costs and Burden Associated With Loss of Labor Productivity in Informal Caregivers of People With Dementia: Results From Spain

Aims: We analyzed indirect costs related to loss of labor productivity (LLP) in informal caregivers (ICs) of people with dementia (PwD) and the associated caregiver burden and patients' clinical variables.; Methods: Multicenter cohort study of PwD and their ICs (n = 287) focused on two groups: (1) home care and (2) institutional long-term care. The costs of LLP were assessed using the Resource Utilization Dementia instrument and a human capital approach.; Results: The cost for LLP was 378&OV0556;/month or 4.536&OV0556;/year. Greater disease severity increased the likelihood of reducing working hours and missing a working day. There was a significant association between partial absenteeism and burden in employed informal caregiver in both the home and institutional setting.; Conclusion: Cognitive impairment contributes to the cost of LLP in IC especially in home-care. LLP has a negative impact on IC burden.

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An intervention that reduces stress in people who combine work with informal care: randomized controlled trial results

Background: The aim of the research was to examine whether a role-focused self-help course intervention would decrease caregiver stress and distress, and functioning problems, among people who suffer stress because they combine paid work with informal care.; Methods: A pre-registered (NTR 5528) randomized controlled design was applied (intervention vs. wait list control). Participants (n = 128) were people who had paid work and were suffering stress due to their involvement in informal care activities. Participants allocated to the intervention group (n = 65) received the role-focused self-help course. Control group members (n = 63) received this intervention after all measurements. Prior to the random allocation (pre-test), and 1 month (post-test 1) and 2 months (post-test 2) after allocation, all participants completed a questionnaire that measured their caregiver stress (primary outcome), distress, work functioning, negative care-to-work interference and negative care-to-social and personal life interference. Mixed model ANOVAs were used to test the effectiveness of the intervention.; Results: Two months after allocation, the intervention group participants had lower levels of caregiver stress and distress compared with the control group participants. The intervention did not directly resolve impaired work functioning or interference of care with work and social/personal life.; Conclusion: The intervention decreases caregiver stress and distress in people who suffer stress because they combine paid work with informal caring. The intervention (Dutch version) can be downloaded at no cost from www.amc.nl/mantelzorgstress.

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Qualitative study of challenges of caring for a person with heart failure

Heart failure (HF) is a chronic health condition that causes significant morbidity among older adults, many of whom receive support and care from an informal caregiver. Caregiving is a difficult role with many responsibilities and challenges. An in-depth understanding of these challenges is necessary to develop services, resources, and interventions for HF caregivers. The goal of this study was to qualitatively ascertain the most significant challenges facing HF caregivers. We conducted semi-structured interviews with 16 caregivers of a person with HF (PHF). Content analysis revealed challenges rooted within the PHF (negative affect, resistant behavior, independence, and illness) Caregiver (balancing employment, lack of support, time, and caregiver health) and Relational level (PHF/caregiver dyadic relationship and other relationships). These findings can be used to inform interventions and support services for HF caregivers.

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Informal care and sleep disturbance among caregivers in paid work: Longitudinal analyses from a large community-based Swedish cohort study

Study objectives: To examine cross-sectionally and prospectively whether informal caregiving is related to sleep disturbance among caregivers in paid work.; Methods: Participants (N=21 604) in paid work from the Swedish Longitudinal Occupational Survey of Health. Sleeping problems were measured with a validated scale of sleep disturbance (Karolinska Sleep Questionnaire). Random-effects modelling was used to examine the cross-sectional association between informal caregiving (self-reports: none, up to 5h per week, over 5h per week) and sleep disturbance. Potential socio-demographic and health confounders were controlled for and interactions between caregiving and gender included. Longitudinal random-effects modelling of the effects of changes in reported informal caregiving upon sleep disturbance and change in sleep disturbance were performed.; Results: In multivariate analyses controlling for socio-demographics, health factors and work hours, informal caregiving was associated cross-sectionally with sleep disturbance in a dose-response relationship (compared to no caregiving, up to 5h of caregiving: β = .03; 95% CI: .01; .06, over 5h: β = .08; 95% CI: .02; .13), results which varied by gender. Cessation of caregiving was associated with reductions in sleep disturbance (β = -.08; 95% CI: -.13; -.04).; Conclusions: This study provides evidence for a causal association of provision of informal care upon subjective sleep disturbance. Even low intensity care provision was related to sleep disturbance among this sample of carers in paid work. The results highlight the importance of addressing sleep disturbance in caregivers.

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Does being a retired or employed caregiver affect the association between behaviours in Alzheimer's disease and caregivers' health-related quality-of-life?

Objective: We examined whether caregivers' employment status (i.e., retired or employed) might modify the association between the behaviours of persons with Alzheimer's disease (PwAD) and caregivers' health-related quality-of-life (HRQoL). Data came from a cross-sectional study of the primary informal caregivers of 200 persons with mild or moderate Alzheimer's disease. Caregivers completed the EQ-5D-3L to rate their HRQoL and generate health utility scores, and the Dementia Behaviour Disturbance Scale (DBDS) to assess the degree to which PwAD exhibited each of 28 behaviours. Caregivers' health utility scores were regressed on overall DBDS scores, with caregiver employment status (retired, employed) treated as an effect modifier and confounder in separate regression models. We also controlled for age, sex, income, education, caregivers' relationship to the PwAD, and whether caregivers gave up paid employment/cut down working hours to care for PwAD.; Results: Effect modification by caregiver employment status is possible, with the inverse association between DBDS score and health utility score largely existing for retired versus employed caregivers. Research using larger samples and longitudinal data would further inform this area of inquiry.

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Informal care, employment and quality of life: Barriers and facilitators to combining informal care and work participation for healthcare professionals

Background: In The Netherlands, one out of six Dutch employees has informal care tasks; in the hospital and healthcare sector, this ratio is one out of four workers. Informal carers experience problems with the combination of work and informal care. In particular, they have problems with the burden of responsibility, a lack of independence and their health. These problems can reveal themselves in a variety of mental and physical symptoms that can result in absenteeism, reduction or loss of (work) participation, reduction of income, and even social isolation.; Objective: The aim of the study was to describe the factors that informal carers who are employed in healthcare organizations identify as affecting their quality of life, labour participation and health.; Methods: We conducted an exploratory study in 2013-2014 that included desk research and a qualitative study. Sixteen semi-structured interviews were conducted with healthcare employees who combine work and informal care. Data were analyzed with Atlas-TI.; Results: We identified five themes: 1. Fear and responsibility; 2. Sense that one's own needs are not being met; 3. Work as an escape from home; 4. Health: a lack of balance; and 5. The role of colleagues and managers: giving support and understanding.; Conclusions: Respondents combine work and informal care because they have no other solution. The top three reasons for working are: income, escape from home and satisfaction. The biggest problems informal carers experience are a lack of time and energy. They are all tired and are often or always exhausted at the end of the day. They give up activities for themselves, their social networks become smaller and they have less interest in social activities. Their managers are usually aware of the situation, but informal care is not a topic of informal conversation or in performance appraisals. Respondents solve their problems with colleagues and expect little from the organization.

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Informal caregiving, work-privacy conflict and burnout among health professionals in Switzerland - a cross-sectional study

Introduction: Health professionals were found to have an elevated burnout risk compared to the general population. Some studies also reported more emotional exhaustion - a component of burnout - for health professionals with informal caregiving responsibilities for children (double-duty child caregivers) or adults (double-duty adult caregivers) or a combination of both (triple-duty caregivers) compared to health professionals without informal caregiving roles (formal caregivers). However, the potential mediating effect of the work-privacy conflict in this relationship as well as differences between occupational groups have not yet been studied in healthcare settings.; Aim: To assess the impact of informal caregiving on burnout risk among health professionals and whether this relationship is mediated by work-privacy conflict or differs between occupational groups.; Methods: Data were collected through an employee survey in six hospitals from German-speaking Switzerland in 2015/2016. Mediation analyses were performed using linear mixed models with fixed effects for caregiving situation and work-privacy conflict as well as random effects for hospitals.; Results: Triple-duty caregivers were found to have a significantly higher burnout risk compared to formal caregivers only. Work-privacy conflict did not mediate this relationship, except among the "other health professionals" group.; Conclusion: Additional and large-scale studies focusing on the combination of formal and informal caregiving roles are needed to better understand its effect on burnout among healthcare professionals and to evaluate the role of work-privacy conflict.;

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Back to Work? Not Everyone. Examining the Longitudinal Relationships Between Informal Caregiving and Paid Work After Formal Retirement

Objectives: Research on unretirement (retirees who re-enter the workforce) is burgeoning. However, no longitudinal study has examined how informal care relates to unretirement. Utilizing role theory, this study aims to explore the heterogeneity of informal care responsibilities in retirement and to examine how informal care informs re-entering the workforce in later life.; Method: Data were drawn from the Health and Retirement Study of fully retired individuals aged 62 years and older in 1998 (n = 8,334) and followed to 2008. Informal care responsibilities included helping a spouse/partner with activities of daily living (ADLs) or instrumental activities of daily living (IADLs); helping parent(s) or parent-in-law(s) with ADLs or IADLs; and single or co-occurrence of care roles. Covariates included economic and social factors. Cox proportional hazard models were utilized.; Results: When compared with noncaregivers, helping a spouse with ADLs or IADLs reduced the odds of returning-to-work in the subsequent wave by 78% and 55%, respectively (hazard ratio [HR]: 0.22, confidence interval [CI]: 0.06-0.87; HR: 0.45, CI: 0.21-0.97). There was no statistical difference to returning-to-work between noncaregivers and helping parents with ADLs/IADLs or multiple caregiving responsibilities.; Discussion: Role theory provided a useful framework to understand the relationships of informal care and unretirement. Aspects of role strain emerged, where, spousal caregivers were less likely to come out of retirement. Spousal caregivers may face challenges to working longer, and subsequently, opportunities to bolster their retirement security are diminished. Research and policy implications are discussed.

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Will you still need me, will you still feed me when I'm 64? The health impact of caregiving to one's spouse

Informal care may substitute for formal long-term care that is often publicly funded or subsidized. The costs of informal caregiving are borne by the caregiver and may consist of worse health outcomes and, if the caregiver has not retired, worse labor market outcomes. We estimate the impact of providing informal care to one's partner on the caregiver's health using data from the Survey of Health, Ageing, and Retirement in Europe. We use statistical matching to deal with selection bias and endogeneity. We find that in the short run caregiving has a substantial effect on the health of caregivers and, for female caregivers, on their health care use. These effects should be taken into account when comparing the costs and benefits of formal and informal care provision. The health effects may, however, be short-lived, as we do not find any evidence that they persist after 4 or 7 years.;

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Strapped for Time or Stressed Out? Predictors of Work Interruption and Unmet Need for Workplace Support Among Informal Elder Caregivers

Objective: We evaluate whether strong associations between unmet need and work interruption observed among informal elder caregivers are explained by caregiver personal characteristics, caregiving situations, or diminished caregiver well-being.; Method: We analyze a proprietary survey of informal elder caregivers conducted by a single large U.S. employer ( N = 642 caregivers).; Results: Unmet need was about twice as common among those experiencing mild (29.79%) or severe interruption (35.00%) relative to those who did not interrupt work (16.87%). Although caregiver characteristics and aspects of caregiving situation show links to either unmet need or work interruption specifically, the association between unmet need and work interruption was not explained by these factors, or by caregiver well-being.; Discussion: Needs-related work interruptions may arise by other workplace processes, such as organizational culture, that should be measured and tested explicitly by future research.

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Discussion Paper 9: Family caring and minority populations

The aim of this series is to introduce a topic for thought and debate within the Family Caring sector. In particular, the series focuses on emerging, under-discussed, and perhaps difficult issues, as a way to stimulate debate.

Much of the supports and research undertaken with and about family carers presupposes that family carers in Ireland are white, heterosexual and Catholic. Statistically, that group is indeed the largest cohort of family carers. However, latest figures from Census 2016 illustrates the breadth of diversity within family carers in Ireland. Whilst many of the challenges faced by family carers from minority populations (such as those from ethnic minorities, religious minorities and those from the LGBT community) will be similar to those faced by the general population, each has particular issues acting as further complicating factors – such as racism, homophobia, or perhaps a lack of adequate access to information. Even when the problems faced are the same, the preferred solutions for these groups may not be.

This latest paper in the Care Alliance Discussion Paper series explores these issues and suggests some policy and support changes which may be useful to consider. 

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Assessment of Work-Family Conflict Among Women of the Sandwich Generation

The term sandwich generation refers to the middle-aged generation who are responsible for caring elderly parents and dependent children. This situation is worse in case of working women who have job obligations along with family responsibilities. Therefore, this study is aimed to investigate level of the four-dimensional work-family conflict among working women of the sandwich generation. This cross-sectional study was conducted among 90 Malaysian working women using self-reported data. Multiple-stage simple random sampling was used to recruit women from public service departments of Malaysia. Self-administrated questionnaires were used for data collection. Data were analyzed using SPSS version 21. One-third of our respondents (33.3%) are members of sandwich generation who simultaneously provide care to elderly parents and children. However, 66.7% of women in this study are caregivers for either elderly parent or their children. The results of t-test showed that level of time-based FIW was significantly (t = − 2.02, p < 0.05) higher in sandwich generation members (Mean = 12.33, SD = 1.95) compared to women caring for either parent or children (Mean = 11.25, SD = 2.58). The results of Multiple linear regression indicated that membership in sandwich generation significantly predict (b = 0.26, p < 0.05) FIWt after controlling for the effect of socio-demographic variables. Our findings showed that women who simultaneously take care of both elderly parent and children significantly experience higher level of time-based Family Interference into Work (FIWt). In contrast, membership in sandwich generation was not related to higher level of time-based Work Interference into Family (WIFt).

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State of Caring 2018

A total of 7,397 carers and former carers responded to Carers UK’s annual State of Caring survey between March and May 2018. 

Only responses from the 6,828 people currently providing care who completed the survey are included in this report as it is designed to provide a snapshot of caring in 2018. However, Carers UK will be using the responses of former carers in other pieces of work throughout the year. 

Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. 

Of respondents to the State of Caring Survey 2018 who are currently caring:

  • 75% live in England, 8% live in Northern Ireland, 9% live in Scotland, and 8% live in Wales.
  • 78% identify as female and 20% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0-24, 4% are aged 25-34, 12% are aged 35-44, 30% are aged 45-54, 33% are aged 55-64, 15% are aged 65-74 and 5% are aged 75 and over. As fewer 1% of carers currently providing care who are under 18 took part in the survey, we have not explored results specifically for this group in the report. 
  • 3% are lesbian, gay or bisexual.
  • 12% also have childcare responsibilities for a non-disabled child under 18.
  • 38% are in paid work (49% full-time and 51% part-time).
  • 33% have been caring 15 years or more, 15% for between 10-14 years, 24% for 5-9 years, 25% for 1-4 years and just 3% have been caring for less than one year. 
  • 47% care for 90 or more hours every week, while 16% care for 50-89 hours, 24% for 20-49 hours and 5% care for 1-19 hours a week.
  • Most (75%) care for one person, 19% care for two people, 4% for three people and 2% care for four or more people.
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Care work and care jobs for the future of decent work

Care work and care jobs for the future of decent work is an important contribution to the ILO’s women at work centenary initiative and to the process that the ILO is undertaking to guide its work for social justice as it advances into its second centenary. The women at work centenary initiative began by examining why progress in closing the gender gaps in the world of work had been so slow and what needed to be done for real transformation. The data, research, analysis and surveys all led back to care work. 

Care work – both paid and unpaid – is at the heart of humanity and our societies and economies are dependent on care work to survive and thrive. Across the world, women and girls are performing more than three-quarters of the total amount of unpaid care  work and two-thirds of paid care workers are women. Demographic, socio-economic and environmental transformations are increasing the demand for care workers, who are often trapped in low quality jobs. If not addressed properly, current deficits in care work and its quality will create a severe and unsustainable global care crisis and further increase gender inequalities in the world of work.

Who is going to provide for the increasing care needs in the future? Under what conditions will both unpaid and paid care work be provided? What policies can be put in place  to recognize, reduce and redistribute unpaid care work, create more and  decent jobs for  care workers, and guarantee care workers’ representation, social dialogue and collective bargaining? These are the questions that for the first time are addressed in a comprehensive manner, based on a wealth of research and data.

A high road to care work is within our reach, and the report charts a new road map of quality care work –one in which unpaid carers are able to enjoy the rewards of care provision without paying a high price for it, and care workers have access to decent jobs, which form the bases of quality care services.

The policy environment put forward to achieve good quality care work, grounded in  gender equality, is context specific but feasible. In all instances, care, macroeconomic, social protection, labour and migration policies need to be engineered so as to yield positive outcomes both for those in need of care and those who give care, whether for pay or not. It requires the engagement of governments, employers, workers and their organizations as well as representatives of unpaid carers and care recipients. By providing a  global picture of the care economy from the angle of the world of work, this report builds a compelling and evidence-based case for placing good quality care work as a priority in national policy agendas. Urgent action is needed to pursue the high road to care work if  there is to be a future of work for both women and men that is decent by design.

Video: Investment in the care economy needs to be doubled to avert a looming global care crisis, says a new ILO report Care work and care jobs for the future of decent work . Sweeping changes in policies should address the rising need for care and tackle the huge disparity between women’s and men’s care responsibilities.https://www.youtube.com/watch?v=zVbsM8IvZYY 

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Profiles of Alzheimer's caregivers in Spain: social, educational and laboral characteristics

Background A person suffering from dementia needs increasing help from another person, who, in most cases, is a female family member. Times are changing and this traditional role can no longer be maintained. Aim The aim of this research was mainly centred on ascertaining the profile of caregivers and to find out how determinants such as age, sex and educational level and living conditions led people to assume that role. Methods A survey was designed and applied to 925 caregivers (778 of which were analysed) with the collaboration of the Alzheimer's Associations of Andalucía (Spain). Associations gave their ethical approbation for this research prior to the beginning and they informed their members. The participation was entirely voluntary, and caregivers were given the option to withdraw consent. Results Women are the main caregivers in any kind of profile. Males become carers if they are old and the partner of a patient. Males use more external services. Cohabiting and working outside the home increase the use of external support services, and having a higher level of education increases the use of nursing homes. Younger caregivers perceive more intense socio-economic consequences than the general profile. Conclusions Being a caregiver implies limitations to entering the job market and for job promotion. There is a generational gap in the caregiver profile, and more and new support services will be needed. Policymakers should take those into account. 

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Profiles of Alzheimer's caregivers in Spain: social, educational and laboral characteristics

Background A person suffering from dementia needs increasing help from another person, who, in most cases, is a female family member. Times are changing and this traditional role can no longer be maintained. Aim The aim of this research was mainly centred on ascertaining the profile of caregivers and to find out how determinants such as age, sex and educational level and living conditions led people to assume that role. Methods A survey was designed and applied to 925 caregivers (778 of which were analysed) with the collaboration of the Alzheimer's Associations of Andalucía (Spain). Associations gave their ethical approbation for this research prior to the beginning and they informed their members. The participation was entirely voluntary, and caregivers were given the option to withdraw consent. Results Women are the main caregivers in any kind of profile. Males become carers if they are old and the partner of a patient. Males use more external services. Cohabiting and working outside the home increase the use of external support services, and having a higher level of education increases the use of nursing homes. Younger caregivers perceive more intense socio-economic consequences than the general profile. Conclusions Being a caregiver implies limitations to entering the job market and for job promotion. There is a generational gap in the caregiver profile, and more and new support services will be needed. Policymakers should take those into account. 

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Carer Characteristics and Health, Wellbeing and Employment Outcomes of Older Australian Baby Boomers

Supporting caregivers and enabling continued workforce participation are central strategies in Australia's response to an ageing population, however these strategies have potential disadvantages for carers, particularly women, including reduced workforce participation and retirement income, and poorer health status. This paper explores the nexus between paid work and caregiving for Australia's baby boomer cohort as this group faces unprecedented pressures to manage paid work alongside caring longer and more intensively for family members, including grandchildren. A sample of 1261 men and women aged 60 to 64 completed the 2011-12 Life Histories and Health survey, a sub-study of the New South Wales 45 and Up Study. The survey collected data on sociodemographic, psychosocial, life history and health-related variables including caregiving and employment status. Around a third (32.5%) of the sample (52.2% female) were involved in some type of caregiving at the time. Compared to non-carers, carers reported lower workforce participation (45.8% versus 54.7% for non-carers) as well as poorer health, more mobility difficulties, lower quality of life and lower self-rated SES. Carers who also cared for grandchildren were more likely to be in part-time or no paid work compared to other carers. Working carers tended to be more highly educated, have fewer mobility difficulties, better self-rated health and higher SES than non-working carers. Male carers were more likely than female carers to be in full-time or no paid work. Results indicate that reduced workforce participation and health status of caregivers varies by gender and type of caregiving. Policy reforms are recommended to mitigate these adverse consequences on those providing care, their families, employers and the community.

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Re-visioning social work education: an independent review

Norman Lamb, Minister of State for Care and Support at the Department of Health invited the Chair of Skills for Care to undertake this Independent Review, in the context of the changes to social work practice brought about by the Social Work Task Force and Social Work Reform Board, and their own recommendations for social work education. The review is based on evidence invited from as wide a field as possible, from the UK and internationally, of all those who have a stake in the education of social workers, including service users and carers, employers, educationalists, social work practitioners, students and others. Professor David Croisdale-Appleby considers whether social work education is ideally structured to best serve the changing nature of the profession. 

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Who cares and how much: exploring the determinants of co-residential informal care

The importance of informal care provided inside the household (co-residential care) is widely acknowledged in policy circles. However, the factors that determine the likelihood and scale of provision are not fully understood. A two-part model (2PM) is used to investigate both participation and levels of provision. Random effects dynamic panel specifications are employed. Results show that co-residential informal care competes with other time demanding activities, such as childcare and employment. Wealthier individuals are less likely to be caregivers, whereas wealthier households have a higher tendency towards caregiving. Evidence of both substitution and complementarity is found between formal and informal care. Informal care and health status are significantly related, with carers more likely to report worse General Health Questionnaire scores than non-carers. Finally, significant dynamic effects are observed with the continuance of the provision of informal care being more likely than the initiation of such activity, while heavy commitment in the past increases the hours provided in the current period.

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Improving employment opportunities for carers: identifying and sharing good practice

This study collected, assessed and synthesised evidence of what works in supporting carer employment. Working in partnership with CIRCLE at Leeds University, the study included expert interviews, case study work, a survey of recent participants and secondary analysis of local labour market conditions for carers.

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Carers in the region: a profile of the North West

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the North West region. In 2001 there were 722,122 carers in the North West region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the North West region.

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Family-friendly reform of employment law in the UK: an overstretched flexibility

This paper provides a critical assessment of the family-friendly reform of employment law in the UK. It begins with the analysis of the EU policies on work-life balance as the important context of the reform in the UK. The second part of the paper provides and outline of the family-friendly provisions introduced by the Labour and Coalition Governments between 1997 and 2015 and investigates the rationale behind the reform. The paper questions the consistency of the approach to the family-friendly reform of employment law adopted by the Labour and Coalition governments. It argues that the economic rationale has underpinned the flexibility aspect of family-friendly agenda in both EU and UK policies. In its final part, the paper analyses the flaws in the regulation of family-friendly entitlements and argues that, without proper incentives and guarantees, the reform is unlikely to provide working parents and carers with a real choice and flexibility.

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Carers in the region: a profile of the West Midlands

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the West Midlands region. In 2001 there were 556,689 carers in the West Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the West Midlands region.

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Personal social services survey of adult carers in England, 2014-15

The Personal Social Services Survey of Adult Carers in England is a biennial survey that took place for the second time in 2014-15. The survey covers informal, unpaid carers aged 18 or over, caring for a person aged 18 or over, where the carer has been assessed or reviewed, either separately or jointly with the cared-for person, by social services during the 12 months prior to the sample being identified. Carers were sent questionnaires, issued by Councils with Adult Social Services Responsibilities (CASSRs), in the period October to November 2014, to seek their opinions on a number of topics that are considered to be indicative of a balanced life alongside their caring role. Further information about the survey, including the methodology, can be found in the 'Methodology and Further Information' document in the Resources section of this page.

National-level information is provided in this report. Annex files containing further national-level data, and data for all CASSRs in England, and the data used to produce this report (as a CSV file) are available in the Resources section below.

A weighting methodology has been introduced for the 2014-15 survey. Although the impact of this change is small, in order to be able to make direct comparisons over time, the results from the 2012-13 survey have been recalculated using this new methodology, and any comparisons made to 2012-13 data in this report refer to these re-calculated figures. Consequently, 2012-13 figures presented in this report may not be an exact match to those in the original, experimental statistics release for 2012-13. The full set of recalculated results for 2012-13 are available in an annex table. The time series annex presents 2012-13 results calculated using the new weighting methodology. Further details about the new weighting methodology and other changes to the survey as compared to 2012-13 are available in the methodological change notice for this report, which is available via the Related Links section of this page.

Findings from the survey are used to populate a number of measures in the Adult Social Care Outcomes Framework (ASCOF); these outcome scores will be published as part of the full suite of ASCOF outcomes on 6 October.

CASSRs reported that 286,910 carers were assessed or reviewed in the 12 months prior to the 2014-15 survey. 57,380 out of a sample of 131,105 carers responded to the survey, which is a response rate of 44 per cent (down two percentage points from 2012-13).

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New deal for carers: Employment Task Force report

The vast majority of working age carers are in paid work or would like to work, either now or at some point in the future. There are 4.3 million working age carers in Great Britain. Two-thirds already combine paid work and care. Over half (55%) of those who are not working say they want to do so (CES Study1). But while carers would like the opportunity to continue in paid work, caring obligations can often make this impossible.

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Working but not employed: Mothers of adults with intellectual disability as hidden workers

Background Earlier research shows that nonemployed mothers of children with intellectual disability (ID) have lower wellbeing than employed mothers. This study explored why and to what extent these mothers did not participate in the labour market.

Method An in-depth interview was employed, and 18 working-age and nonemployed mothers in Taiwan who had an adult child with ID were interviewed in their homes between July 2009 and May 2010.

Results The mothers left the labour market at different stages of the family life cycle due to a lack of formal/informal support for the care needs of their young children, and the continuing intensive care needs of their child with ID. Mothers were officially nonemployed; however, to meet their family's financial needs, they were hidden workers in practice.

Conclusions Policies are required that support these hidden female workers, who are also lifelong carers, by offering financial support and affordable social services.

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Time costs associated with informal care for colorectal cancer: an investigation of the impact of alternative valuation methods

Background: A societal perspective in economic evaluation necessitates that all resources associated with a disease or intervention should be valued; however, informal care time costs are rarely considered.

Objective: We estimated time allocated to care by informal carers of colorectal cancer survivors; and investigated the impact of applying alternative valuation methods to this time.

Methods: Colorectal cancer cases (ICD10 C18-C20) diagnosed 6–30 months previously and identified from the National Cancer Registry Ireland were invited to provide details of informal carers. Carers completed a postal questionnaire. Time estimates per week associated with hospital-related and domestic-related care activities were collected for two phases: diagnosis and initial treatment (initial 3 months) and ongoing care (previous 30 days). Seven valuation scenarios, based on variants of the opportunity cost approach (OCA), and the proxy good approach (PGA), were considered. The base-case was OCA with all carer time valued at the average national wage.

Results: We received 154 completed questionnaires (response rate = 68 %). Average weekly time allocated to caring was 42.5 h in the diagnosis and initial treatment phase and 16.9 h in the ongoing care phase. Under the base-case, average weekly time costs were €295 (95 % CI 255–344) for hospital-related activities and €630 (95 % CI 543–739) for domestic-related activities in the diagnosis and initial treatment phase and €359 (95 % CI 293–434) in the ongoing care phase. PGA estimates were 23 % below the base-case. Only one alternative scenario (occupation and gender-specific wages for carers in paid work and replacement wages for non-working carers) surpassed base-case costs, and the difference was modest.

Conclusions: Overall, significant time is associated with informal caring in colorectal cancer. Different time valuation methods can produce quite different cost estimates. A standardised methodology for estimating informal care costs would facilitate better integration of these into economic evaluations.

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Informal home care and labor-force participation of household members.

In Germany, informal home care is preferred to professional care services in the public discussion as well as in legal care regulations. However, only minor importance is ascribed to the opportunity costs caregivers face. Therefore, this article explores the influence home care has on the labor supply of caregivers who cohabitate with the care recipient. I use data from the German Socio-Economic Panel from 2001 to 2007, which allows researchers to merge the characteristics of both groups for the first time. Owing to diverging gender roles, I examine female and male caregivers separately. The results show that having an individual in need of care in the household does not decrease labor supply to an economically relevant quantity. As providing care might be endogenous to the labor-supply decision, I test for endogeneity by using characteristics of care recipients as instruments and I additionally test for sample attrition. Moreover, the panel structure allows me to control for unobserved heterogeneity.

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Well-being among employed and non-employed caregiving women in Taiwan

This study addressed various groups of non-employed/employed and non-caring/caring women in Taiwan. Data from the 2006 National Taiwanese Women Survey (at age 16–64, n= 6,017) were analysed to determine whether there are differences in terms of well-being, as measured by self-rated health and family life satisfaction, between women who work and/or care and between different carer groups. Other factors associated with well-being of carers of young children (n= 1,697) were also analysed. The results showed that non-employed carers of disabled adults stood out as the most disadvantaged group. However, the importance of work has been replaced by support among carers of young children. This study suggests that unpaid carers, particularly carers of disabled adults who are non-employed, ought to be supported by policies. To improve carers' well-being, care–work reconciliation among working-age women needs to be included in the future care scheme in Taiwan.

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Carers, employment and services: Time for a new social contract?

CES Report No. 6, which should be read in conjunction with the other CES reports, presents a summary of the main findings from the CES study about carers in England, Scotland and Wales. The report highlights the implications of the study findings for the future public policy agenda on carers of working age, setting out the rationale for developing better support for this group of carers at both local and national levels. Key challenges in developing services and provision are identified, and recommendations are made about how they can be tackled by service providers, employers, central/local government and the voluntary sector. The report calls for a ‘new social contract’ between government, publicly funded agencies, employers, families and individuals, based on the recognition that all parts of society have mutual obligations and expectations about providing and receiving care, and that these are central to the humanity of every citizen.

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'The Tender Trap': Gender, Part-Time Nursing and the Effects of 'Family-Friendly' Policies on Career Advancement

With the Government promoting flexible and ‘family-friendly’ policies within the NHS, an increase in the number of part-time nurses is imminent, particularly in view of current pro-active recruitment drives in this area. Research, however, indicates that it is mainly female employees who continue to utilise such policies with few male nurses employed on a part-time or flexible basis. Working part-time and taking career breaks, usually because of caring commitments, results in female nurses falling behind male colleagues in terms of career development and promotion prospects, with managers selecting males over females (particularly those who work part-time) regarding functional role allocation in the hospital setting. Based on a recent study of full-time and part-time nurses and their managers in three Outer London NHS Trusts, this paper argues that so-called ‘family-friendly’ policies must target both sexes and that the underlying attitudes of men to childcare and the domestic division of labour must change before the sexes can compete on equal terms in the workplace. Until this happens men will continue to advance the development of their nursing careers more rapidly than women. Already, in a female-dominated area of employment, male nurses form a disproportionate percentage of those in higher grades and management posts.

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A practical guide for disabled people or carers: where to find information, services and equipment

Guide giving information about services for disabled people available from government departments and agencies, the NHS, local government, and voluntary organisations. Covers every need, including housing, money, opportunities for holidays and leisure, and many more. Includes phone numbers, publications and a list of organisations.

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Refreshed autistic spectrum disorder strategic action plan

This new Strategic Action Plan has been developed in response to what people with autism, their families and carers have said is important to them. We have also worked with a wide range of stakeholders to identify some key priority themes and actions that will make a real difference to the lives of children and adults with autism. The Plan sets out what we have done, what we were told and what we will do. It has three key priority areas:  Awareness raising, information and training;  Assessment and diagnosis; and  Meeting support needs. 

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Carers at the heart of 21st-century families and communities

This strategy sets the government agenda for supporting carers over the next 10 years ranging across the span of government’s responsibilities. Short-term changes are to be implemented over the next three years, and longer-term priorities are identified for the next 10 years. The strategy addresses breaks, personalisation of services, income, information and advice, the workplace, training for the workforce, access to employment, emotional support, the health of carers and the specific needs of young carers. . The strategy is based on the views and concerns of carers themselves, drawn from consultation across the country.

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Nothing on the Move or Just Going Private? Understanding the Freeze on Child- and Eldercare Policies and the Development of Care Markets in Italy

Since the 1990s European conservative-corporatist welfare states have expanded public support for child-and eldercare needs. This is in marked contrast to Southern European countries, of which Italy is a paradigmatic example. In Italy, the traditional configuration (limited development of social services coupled with the importance of informal care, mainly provided by women) has recently come under strain, also because of the increasing employment of women. Nonetheless, rather than the development of new policies, this has given rise to a hybrid combination of informal care and the development of a loosely regulated and little supported care market. In this sense, the article asks why care in Italy has been "going private" instead of "going public". It is argued that cultural features and political ideology do not provide a sufficient explanation: in addition to sharp financial constraints, the structure and functioning of the state and labor market and migration regulation need to be considered.

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Interactions between care-giving and paid work hours among European midlife women, 1994 to 1996

This paper uses data from the European Community Household Panel surveys Of 1994 and 1996 to study the association between changes in care-giving and changes in weekly work hours. Our sample comprises women aged 45-59 years who participated in the labour force in at least one of the two years studied. Controlling for country variation, we find significant relationships between starting or increasing informal care-giving and changes in weekly work hours. No such association is found however among women terminating a care-giving commitment or reducing their care hours. Starting care-giving significantly reduces work hours for women in northern European countries (except Ireland). By contrast, women in southern Europe and Ireland respond to an increase in care-giving hours by a smaller increase or a higher decrease in work hours than non care-givers. In summary, our results show that the impact of care-giving on adjustments of weekly work hours is asymmetrical and that it differs in southern and northern Europe.

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Managing a dual role: working carers in social services

The article addresses the issue of working carers in social services - employees who have caring responsibilities for adults outside work. Where employers fail to support carers, costs can be high. Ways of developing carer-friendly policies are considered. 

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Caring and Retirement: Crossroads and Consequences

As older workers move closer to retirement, they are more likely to take on caring roles. This may affect their health, retirement plans, and income security. Retired men and women experience the caring role differently, with men less likely to be adversely affected and more likely to accept services and to derive satisfaction from caring. Carers make an important contribution to the lives of the people they care for and to the community. Caring is a productive role that can be sustained into older age, as long as the carer's health and well-being are maintained. More research is needed on the relationship between retirement and caring, to explore the extent of caring and its impact on retirement plans, income, and the physical and mental health of retired carers. This information could then be built into retirement planning to better prepare older workers for this important role. Caring roles and retirement intersect in several ways. About 6 million Americans, 2.6 million Australians, and 6 million people in the United Kingdom are informal carers. People (especially men) are more likely to take on caring roles as they get older and leave the paid workforce. The need to care for a spouse or older relative can be an unanticipated outcome or a precipitator of retirement. Retirement may coincide with illness or disability of a parent or spouse, or may be forced by the demands of caring. Caring may bring about major changes to retirement plans. The financial impact of having been a carer during one's working life may also be felt most keenly on retirement, through the lack of opportunities for savings and retirement fund co-contributions.

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The demographic characteristics and economic activity patterns of carers over 50: evidence from the English Longitudinal Study of Ageing

Studies on informal care provision have often focused on the provision of care for persons with a long term physical or mental ill-health or disability, or problems related to old age. However, the provision of care and support more broadly, for example in the form of childcare for grandchildren, can also impact on various aspects of a carer's life, such as their employment (if under the state retirement age), lifetime earnings and, by extension, pension income in later life. This article uses data from Wave 3 of the English Longitudinal Study of Ageing (ELSA) to explore the demographic characteristics, caring patterns, health status and economic activity patterns of carers aged over 50 in England. The results suggest that the nature of care provision differs across age groups, and that caring can be quite a different experience for older men and women. This article also sheds light on the characteristics of ‘round-the-clock’ carers, a relatively under-researched group which makes up just over one fifth of all carers aged 50 and over.

This article uses data from Wave 3 of the English Longitudinal Study of Ageing (ELSA) to explore the demographic characteristics, caring patterns, health status and economic activity patterns of carers aged over 50 in England.

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Disability, participation and welfare to work in Staffordshire

Staffordshire's Welfare to Work Joint Investment Plan is an inter‐agency approach to improving job opportunities for disabled people and carers, emphasising the need for their participation in this process. A partnership with Staffordshire University has enabled disabled people to acquire research skills and survey the views of other disabled people on barriers to employment and strategies to overcome them. The article shares this innovative approach to participation and welfare to work.

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Burden and happiness in head and neck cancer carers: the role of supportive care needs

Purpose: Our study aimed to investigate the relationship between unmet supportive care needs and carer burden and happiness, in head and neck cancer (HNC).

Methods: Two hundred eighty-five HNC informal carers were sent a postal questionnaire between January and June 2014, which included the supportive care needs survey for partners and caregivers of cancer survivors (SCNS-P&C) and the CarerQol, which assesses burden and happiness. Multiple regression analysis was conducted to examine the association of (i) carer characteristics, (ii) carer situation, and (iii) unmet supportive care needs, with carer burden and happiness

Results: One hundred ninety-seven carers completed the questionnaire (response rate = 69 %), 180 of whom were included in the analysis. The majority were female (76 %), not in paid employment (68 %) and caring for their spouse (67 %). On average, carers reported relatively low levels of burden and relatively high levels of happiness. Carer factors explained 42 % of variance in levels of burden and 24 % of variance in levels of happiness. Healthcare service needs were associated with carer burden (β = .28, p = .04), while psychological needs (β = −.38, p = .028), health care service needs (β = −.30, p = .049), information needs (β = .29, p = .028), carer comorbidity (β = −.18, p = .030), and gender (β = −.16, p = .045) were associated with happiness.

Conclusions: Our results indicate that different aspects of carer characteristics and unmet needs are associated with carer burden and happiness. Efforts directed at reducing unmet healthcare service needs in particular are merited given their associations with both aspects of carer quality of life.

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The carers strategy for Wales 2013

This strategy sets out the key actions the Welsh Government intends to take for the remainder of this Assembly Term, up to 2016. It provides a framework for agencies to work together to deliver services and support to carers. Five priority areas are explained: health and social care; identification, information and consultation; young carers and young adult carers; support and a life outside of the caring role; and carers and employment. The strategy contains 18 key actions, which will form the basis of a report to be published by the end of 2013.

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A descriptive profile of caregivers of older adults with MS and the assistance they provide

Purpose. To describe and compare spousal and non-spousal caregivers of older adults with multiple sclerosis (MS), the nature and extent of assistance they provide, and the challenges they experience in the course of their caregiving role.

Methods. This cross-sectional descriptive study uses data from telephone interviews with 302 caregivers of older adults with MS. Descriptive statistics, Chi-square and Wilcoxon tests were used to generate and compare caregiver profiles. A proportional odds model examined factors associated the provision of greater extent of care.

Results. Spousal and non-spousal caregivers differed in age, sex, location of residence, and employment status. The characteristics of the people with MS for whom they cared were very similar. Spousal caregivers assisted with more activities, although non-spousal caregivers provided equivalent caregiving time. Twenty percent of caregivers spent more than 3.5 h per day caregiving. Caregiving time was influenced by cognitive and ADL status of the person with MS, and the number of caregiving activities performed. Challenges reported by caregivers were similar.

Conclusions. Both spousal and non-spousal caregivers of older adults with MS provide substantial assistance, and experience many challenges. Rehabilitation professionals need to be aware of the diversity of caregivers and the assistance they provide to facilitate appropriate support and resources.

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Living wages and the ‘making work pay’ strategy

Poverty among workers is a perennial problem. Recently there has been much interest in the idea of living wages. As mechanisms to increase wages above the ‘poverty line’, living wages present an alternative to New Labour’s ‘making work pay’ strategy; a combination of minimum wage regulation and means-tested, in-work relief. Through a comparison of living wages and the ‘making work pay’ strategy this paper critically examines both by focusing upon the aims of the two strategies, their ability to deliver higher incomes to workers and their families, and the assumptions upon which the two strategies are based. The paper demonstrates that while the ‘making work pay’ strategy is more sensitive to need than living wages, outside of wider changes in the social relations of capital and gender, the two strategies are similar in buttressing capitalism and institutionalizing stereotypes of women as dependants and carers.

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Consequences of caring for a child with a chronic disease: Employment and leisure time of parents

Chronically ill children require several hours of additional care per day compared to healthy children. As parents provide most of this care, they have to incorporate it into their daily schedule, which implies a reduction in time for other activities. The study aimed to assess the effect of having a chronically ill child on parental employment and parental leisure activity time, and to explore the role of demographic, social, and disease-related variables in relation to employment and leisure activities. Outcomes of 576 parents of chronically ill children and 441 parents of healthy school children were analyzed with multivariate regression. Having a chronically ill child was negatively related with family employment, maternal labor force participation, and leisure activity time. Use of child care was positively related to family and maternal employment of the total group of parents. Within parents of chronically ill children, most important finding was the negative relation of dependency of the child on daily care and low parental educational level with family and maternal employment. In conclusion, parents of chronically ill children, mothers in particular, are disadvantaged in society probably due to the challenge of combining child care with work and leisure time.

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Informal care and labour force participation among middle-aged women in Spain

Informal care is today the form of support most commonly used in Spain by those who need help in order to carry out basic daily activities. The potential labour opportunity costs incurred by Spanish informal carers have not as yet been quantified. In this paper we use the Spanish subsample of the European Community Household Panel (1994–2001) to estimate an econometric model which we exploit to examine the effects of various types of informal care on labour market outcomes. Our results reveal the existence of non-negligible costs in terms of foregone employment for carers who live with the dependent person and/or provide more than 28 h of care/week. We also find that providing care for more than a year has negative effects on employment. Nonetheless, there seems to be no contemporaneous employment effects associated to either starting or ending an episode of care.

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Unmet needs in formal care: kindling the spark for caregiving behavior

This paper studies if a situation of formal care unmet needs is a strong motivation for the onset of caregiving behavior, and if becoming caregiving is a compelling argument for leaving current job (in the presence/absence of formal care unmet needs). We use data from the Eurobarometer 67.3 for 18 European countries and estimate a three simultaneous equations model taking into account the potential endogeneity of labor participation and formal care unmet needs and assuming non-zero correlation among the error terms of the three equations. Results show that individuals who anticipate that becoming caregiver can suppose an obstacle for continuing working feel more refractory and are more prone to avoid caregiving responsibilities. Knowing someone with an unmet needs problem increases the probability of becoming caregiver by +19.23 pp (with a maximum of +39.39 pp for difficult access unmet needs) and raises the probability of leaving employment by 5.77 pp. Having to possibility of receiving economic benefits for caregivers encourage more labor market exit as compared to payment of social security contributions during care leaves.

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A cost evaluation of multiple sclerosis

As a chronic and disabling disease, multiple sclerosis (MS) is extremely costly, both for the individual and the family, as well as far the society. Early onset, long duration and effects on employment contribute to the extensive costs related to the illness. Thus far, studies conducted in developed countries have demonstrated that direct costs, including treatment (prior to the approval of beta interferon), medical visits, hospitalization, assistance, etc., are much lower in respect to indirect costs, such as loss of income from reduction of work activity for patients and carers, which account for up to 75% of the total cost. Informal care represents a heavy burden for the families of disabled persons and little is known about the 'intangible' costs of MS, such as those related to the influence of the disease on quality of life. In addition, the cost/benefit ratio for expensive new therapies, such as beta interferon, remains to be determined.

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The fiscal impact of informal caregiving to home care recipients in Canada: How the intensity of care influences costs and benefits to government

he objective of this study was to estimate the annual costs and consequences of unpaid caregiving by Canadians from a government perspective. We estimated these costs both at the individual and population levels for caregivers aged 45 and older. We conducted a cost-benefit analysis where we considered the costs of unpaid caregiving to be potential losses in income tax revenues and changes in social assistance payments and the potential benefit of reduced paid care expenditures. Our costing methods were based on multivariate analyses using the 2007 General Social Survey, a cross-sectional survey of 23,404 individuals. We determined the differential probability of employment, wages, and hours worked by caregivers of varying intensity versus non-caregivers. We also used multivariate analysis to determine how receiving different intensities of unpaid care impacted both the probability of receiving paid care and the weekly hours of paid care received. At the lowest intensities of caregiving, there was a net benefit to government from caregiving, at both the individual and population levels. At the population level, the net benefit to government was estimated to be $4.4 billion for caregivers providing less than five hours of weekly care. At the highest intensity of caregiving, there was a net cost to government of $641 million. Our overall findings were robust to a number of changes applied in our sensitivity analysis. We found that the factor with the greatest impact on cost was the probability of labour force participation. As the biggest cost driver appears to be the higher likelihood of intense caregivers dropping out of the labour force, government policies that enable intense caregivers to balance caregiving with employment may help to mitigate these losses.

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Your next of kin or your own career? Caring and working among the 50+ of Europe

An increasing demand for both formal and informal care is likely to result from the ongoing demographic transition at the same time as there is a further move away from the traditional domestic division of labour. Public policy-making that aims at increasing the supply of informal care necessitates knowledge about the relative importance of various incentives for individual care providers. This paper takes as a point of departure that the willingness to supply informal care is partly explained by the extent to which it adversely affects labour-market outcomes and analyses the effect on labour-market outcomes of providing informal care to one's elderly parent(s) among the 50+ of Europe. Data from SHARE (Survey of Health, Ageing, and Retirement in Europe) was used to examine the association between, on the one hand, hours of informal care provided and, on the other, (1) the probability of employment, (2) hours worked, and (3) wages, respectively. The results suggest that giving informal care to one's elderly parents is associated with significant costs in terms of foregone labour-market opportunities and that these adverse effects vary between countries.

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Supporting family carers providing end-of-life home care: a qualitative study on the impact of a hospice at home service

Aims and objectives: To explore bereaved family carers' perceptions and experiences of a hospice at home service.

Background: The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home. A hospice at home service was developed to meet patients' and families' needs by providing individually tailored resources.

Design: A qualitative study.

Methods: Data were collected by semi-structured, digitally recorded interviews from 20 family carers who had experienced the service. Interviews were transcribed verbatim and a thematic approach adopted for analysis.

Results: All participants reported a personal positive impact of the service. Family carers commented the service provided a valued presence, they felt in good hands and importantly it helped in supporting normal life.

Conclusions: The impact of an individualised, targeted, hospice at home service using dedicated, palliative care trained, staff, is perceived positively by family carers and importantly, supportive of those with additional caring or employment commitments.

Relevance to clinical practice: The emergence of hospice at home services has resulted in more options for patients and their families, when the increased amount of care a family member has to provide in these circumstances needs to be adequately supported, with the provision of a flexible service tailored to individual needs and delivered by appropriately trained staff.

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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.

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Impact of Providing Care on the Risk of Leaving Employment in Canada

Population aging is likely to lead to an increase in the number of people in need of assistance. It is well known that a large part of this assistance originates, and will continue to originate, from the network of relatives and friends. However, the effects of the provision of care on individuals' employment trajectories when this care is combined with employment of varying intensity or with childcare responsibilities have rarely been examined. The present study used proportional hazards models with the General Social Survey, Cycles 20 and 21, to assess the impact of providing care to a partner, a parent or parent-in-law, another relative, or a non-relative on the risk of leaving employment. The analyses show that providing care to a parent or parent-in-law increases the probability of leaving employment only among women employed full-time and among men and women who have no children or only adult children.

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Carers UK: why a social contract is needed

Carers UK is calling for a social contract for care following research it launched last month. Evidence from reports – the Carers, Employment and Services series – shows the need for a radical shake-up to the way we support carers.

Carers have greater risk of ill health and unemployment according to the latest comprehensive research for Carers UK. Sue Yeandle outlines what reforms are needed. 

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Giving voice to informal caregivers of older adults

This study focused on the experiences of informal caregivers of older adults and explored whether employment, use of home-care services, or other factors influence the health of caregivers and their ability to manage their caregiving and other responsibilities. Focus groups conducted with 26 caregivers and personal interviews with 4 caregivers identified 12 themes under 5 conceptual areas: caregiver health, relationships, independence, employment, and use of home-care services. The findings reveal that caregiving coupled with other responsibilities can have serious health effects. Participants spoke of the tenuous balance of decision-making control between caregiver and care recipient. Many caregivers expressed a desire to be included as part of the formal health-care team. Implications for nursing are discussed.

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Scottish Household Survey analytical topic report: characteristics and experiences of unpaid carers in Scotland: research findings

The main findings of research that aimed to provide an indication of which types of carers may be in particular need of support, and examine the demographic characteristics of carers are reported. The report analysed responses to the Scottish Household Survey between 1999 and 2004.

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Psychosis and schizophrenia in adults: QS80

This quality standard covers the treatment and management of psychosis and schizophrenia (including related psychotic disorders such as schizoaffective disorder, schizophreniform disorder and delusional disorder) in adults with onset before the age of 60 years in primary, secondary and community care. It does not cover adults with transient psychotic symptoms. The standard sets out key quality statements, providing quality measures for each of them and explaining what they mean for service providers, health and social care practitioners, and commissioners and for patients, service users and carers. The eight statements cover: referral to early intervention in psychosis services; cognitive behavioural therapy; family intervention; treatment with clozapine; supported employment programmes; assessing physical health; promoting healthy eating, physical activity and smoking cessation; carer-focused education and support.

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Combining Work and Care: The Reality of Policy Tensions for Carers

Without the contribution of informal carers of disabled, sick & older people, organised social care in England & Wales could not cope. However, carers can often experience financial hardship, poor health & social isolation, & may find it difficult to combine work & care. The government has developed policies to support carers in their caring role, while also introducing measures to assist carers to work, reflecting the emphasis on paid work as a driving force to reduce poverty. This article draws on empirical evidence to assess the effectiveness of financial & labour market support to encourage carers to work. The evidence sheds light on the tensions underlying current measures to help carers work & care. Tables, References. Adapted from the source document.

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Working family carers in Portugal: between the duty and the burden of caring for old vulnerable people

This paper intends to reflect on some of the predominant traits of caring for older vulnerable people in Portugal, where the most common care model is a mix of informal home-based provision and support from the public and private sectors. We shall address some issues concerning the risks and limits of informal caretaking of older dependent people based on a case study of a woman who has to fulfil multiple roles, pushing her to the limit of her ability to cope. Evidence indicates that solutions to the challenges of caring for an ageing population, especially those in a vulnerable condition, require a consideration of material, social, cultural, and psychological measures. On the basis of the nature of the links between these areas, the quality of the care provided and the consequences for the working family carers, we can define standards of caring solutions for older people and hence derive policies for preventive and optimized interventions. Our final aim is to emphasize the importance of palliative care settings to improve the quality of life and minimize the suffering of both older people and their carers.

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Caregiving patterns in rural Andean Colombia

Are there local cultural ideals of filial caregiving responsibility - a type of repayment of a debt to parents - and do they differ by gender? How are filial caregiving responsibilities allocated among siblings in such instances, and how do they fit cultural ideals? Is caregiving negotiated among siblings; and if so, how? This qualitative study conducted in rural Andean Colombia is based on a sample of thirty-eight interviews differentiated by gender and employment in the (formal and informal) labor market, with individuals who have at least one parent in need of care and at least one living sibling of the opposite gender. The study explores the cultural definition of caregiving, the ideal norms of who should care for parents, and the actual gendered patterns of caregiving. This interdisciplinary study expands existing research in the health and social sciences by exploring the pathways to becoming a caregiver.

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Recognised, valued and supported: next steps for the carers strategy: response to the call for views

In July 2010, the Department of Health published a call for views on the key priorities, supported wherever possible by evidence of good practice that will have the greatest impact on improving carers’ lives in the next four years. In total, 764 responses were received. This strategy document identifies the actions that the Government will take over the next four years to support its priorities to ensure the best possible outcomes for carers and those they support, including: supporting those with caring responsibilities to identify themselves as carers at an early stage, recognising the value of their contribution and involving them from the outset both in designing local care provision and in planning individual care packages; enabling those with caring responsibilities to fulfil their educational and employment potential; personalised support both for carers and those they support, enabling them to have a family and community life; and supporting carers to remain mentally and physically well.

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Changing economic and social roles : the experience of four cohorts of mid-life individuals in Britain, 1985-2000

Men and women in Great Britain are increasingly involved in a variety of economic and social roles, particularly during their mid-life period. This article examines the changes in role occupancy across four birth cohorts passing through mid-life over the period 1985-2000. Data from the General Household Survey is used to investigate the occupancy of four key roles: 'partner', 'parent', 'carer' and 'paid worker', analysing separate and multiple role occupancies and level of commitment to a particular role. The implications of the findings for health and employment policies is also discussed. 

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Costs and quality of life associated with acute upper gastrointestinal bleeding in the UK: cohort analysis of patients in a cluster randomised trial

Objectives Data on costs associated with acute upper gastrointestinal bleeding (AUGIB) are scarce. We provide estimates of UK healthcare costs, indirect costs and health-related quality of life (HRQoL) for patients presenting to hospital with AUGIB.

Setting Six UK university hospitals with >20 AUGIB admissions per month, >400 adult beds, 24 h endoscopy, and on-site access to intensive care and surgery.

Participants 936 patients aged ≥18 years, admitted with AUGIB, and enrolled between August 2012 and March 2013 in the TRIGGER trial of AUGIB comparing restrictive versus liberal red blood cell (RBC) transfusion thresholds.

Primary and secondary outcome measures Healthcare resource use during hospitalisation and postdischarge up to 28  days, unpaid informal care, time away from paid employment and HRQoL using the EuroQol EQ-5D at 28  days were measured prospectively. National unit costs were used to value resource use. Initial in-hospital treatment costs were upscaled to a UK level.

Results Mean initial in-hospital costs were £2458 (SE=£216) per patient. Inpatient bed days, endoscopy and RBC transfusions were key cost drivers. Postdischarge healthcare costs were £391 (£44) per patient. One-third of patients received unpaid informal care and the quarter in paid employment required time away from work. Mean HRQoL for survivors was 0.74. Annual initial inhospital treatment cost for all AUGIB cases in the UK was estimated to be £155.5 million, with exploratory analyses of the incremental costs of treating hospitalised patients developing AUGIB generating figures of between £143 million and £168 million.

Conclusions AUGIB is a large burden for UK hospitals with inpatient stay, endoscopy and RBC transfusions as the main cost drivers. It is anticipated that this work will enable quantification of the impact of cost reduction strategies in AUGIB and will inform economic analyses of novel or existing interventions for AUGIB.

Trial registration number ISRCTN85757829 and NCT02105532.

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Linkages between migration and the care of frail older people: observations from Greece, Ghana and the Netherlands

There are at least four ways in which old age and migration cross each other’s paths. First of all, there are people who migrated for economic reasons, usually at a relatively young age, and who have grown old in a foreign country. Secondly, there are older people who migrate when (or because) they are old: in Europe, they are mostly from the affluent northern countries and travel southward. Thirdly, there is increasing employment of, and demand for, immigrant workers in old-age institutions in the northern countries. Finally, there is the out-migration of young people, mainly from rural areas, that results in older people being left behind without children to look after them. In all these cases, migration has a profound effect on the wellbeing and care of older people. The authors of this article explore a fifth linkage between migration and old age, by focusing on the (mainly illegal) immigrants who take on roles as private carers and, in effect, replace the children who have emigrated. Two cases, from Greece and Ghana, are presented and viewed in the two countries’ political, cultural and economic contexts, and are then compared to conditions in The Netherlands. In both cases, involving a ‘ stranger’ in the care of an older parent is regarded as a good and respectable solution to the problem of absent children and grandchildren: it follows rules of reciprocity and normally provides a good quality of care. Ironically, hiring full-time private care for older people is feasible in low-income countries but a rare luxury in high-income societies.

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Parent caregiving choices of middle-generation Blacks and Whites in the United States

Objective: This study compares how middle-generation caregivers and non-caregivers differ by race and explores racial differences in activities of daily living (ADL), instrumental activities of daily living (IADL), and financial assistance that middle-generation caregivers provide for their parents. Method: Using 2000 Health and Retirement Study data, racially stratified descriptive analyses and logistic regression models for ADL, IADL, and financial assistance are presented. Results: Parental need and race influence support, with similar patterns of Black and White ADL support, but racial differences in IADL and financial support. Having more children motivates Whites to increase IADL support and reduce financial support; more children decreases Blacks' IADL support. Sibling caregiver networks influence IADL and financial support in ways that vary by race. The number employed is a key determinant for Blacks for all support, but only influences White ADL support. Discussion: The findings of this article indicate the importance of sample stratification by race and that employment or other subsidies may aid the expansion of caregiving by middle-generation adults.

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Caring about carers: a strategy for carers in Wales: the third report: summary document

Package of measures aimed at local authorities and other agencies to provide more support to carers in Wales. Contents include: health and social care; information; support; young carers; carers and employment; quality assurance, monitoring and evaluation.

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The effects of ill health and informal care roles on the employment retention of mid-life women: Does the workplace matter?

This article uses longitudinal data to measure the effects of ill health and informal care roles on the employment chances of mid-life women, and to examine how these effects are mediated by workplace characteristics. We find that women in jobs with lower skills/status encounter the greatest difficulty in finding accommodations for changes in their health and informal care roles. We identify an important role for paid sick leave and holiday leave in boosting employment retention. However, we find that the positive employment effects of permanent contracts do not extend to women experiencing increased informal care roles. Additionally, we do not identify a positive link between employment retention and flexible working time arrangements. However, we do establish a link between a preference for reduced working hours and employment cessation, suggesting that some women experience problems in achieving flexible working hours and that this causes some of them to leave work altogether. We argue that these findings are relevant to the design of policy initiatives aimed at lifting rates of workforce participation as part of the response to population ageing.

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Bipolar disorder in adults: QS95

This NICE quality standard covers recognition, assessment and management of bipolar disorder in adults (18 years and older) in primary and secondary care. It outlines eight quality statements designed to improve patient safety, patient experience and clinical effectiveness. The eight quality statements are: referral for specialist mental health assessment; personalised care plan; involving carers in care planning; psychological interventions; maintaining plasma lithium levels; valproate; assessing physical health; and supported employment programmes. Each quality statement is accompanied by clear quality measures. The standard aims to improve outcomes in: mortality rate, suicide rate, quality of life for people with severe mental illness, quality of life for carers, employment rates, and service user experience of mental health services.

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Caring for Elder Parents: A Comparative Evaluation of Family Leave Laws

As the baby boomer generation ages, the need for laws to enhance quality of life for the elderly and meet the increasing demand for family caregivers will continue to grow. This paper reviews the national family leave laws of nine major OECD countries (Canada, Denmark, France, Germany, Italy, Japan, Netherlands, Spain, and the United Kingdom) and provides a state-by-state analysis within the U.S. We find that the U.S. has the least generous family leave laws among the nine OECD countries. With the exception of two states (California and New Jersey), the U.S. federal Family Medical Leave Act of 1993 provides no right to paid family leave for eldercare. We survey the current evidence from the literature on how paid leave can impact family caregivers' employment and health outcomes, gender equality, and economic arguments for and against such laws. We argue that a generous and flexible family leave law, financed through social insurance, would not only be equitable, but also financially sustainable.

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Seeking a balance between employment and the care of an ageing parent

Rationale:  A growing number of middle-aged people are engaged in informal care of their parents while employed. To provide support as employers, co-workers or staff, health care professionals need insight into the experiences of people managing these responsibilities.

Aim:  To elucidate the experience of providing informal care to an ageing parent while managing the responsibilities of a working life. Methods:  Narrative interviews were performed with 11 persons with experience of the phenomenon. Transcribed interviews were analysed with phenomenological hermeneutics. Ethics:  Informed consent was given prior to the interviews. The study was approved by a research ethics committee.

Findings:  Providing informal care to an ageing parent while also pursuing a working life implies seeking balance: a balance between providing support to the parent’s needs and one’s responsibilities at work. Being employed supports this balance as it provides both fulfilment and refuge. Being capable of managing both roles grants a sense of satisfaction, supporting one’s sense of balance in life. The balance can be supported by sharing the responsibility of caring for the ageing parent with others.

Study limitations:  Despite perceived saturation and an effort to provide for the possibility to consider internal consistency, the findings should be considered as a contribution to the understanding of the phenomenon, as experienced by individuals in their life world.

Conclusions:  It is essential to recognise the impact that providing care for an ageing parent may have on the lives of a growing number of people, particularly if they have employment responsibilities. Acknowledgement by others supports one’s ability to attain balance; as co-workers and managers, we can acknowledge the efforts of an informal caregiver and as health care staff recognise the valuable contribution made by people in mid-life who provide informal care for their ageing parents.

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Cash for care in the French welfare state: a skilful compromise?

The French system of social care policy for dependent older people is an allowance known as the Prestation Specifique Dependance (PSD) from January 1997 to December 2001 and subsequently the Allocation Personalisee a l'Automie (APA) from January 2002 for services or to pay a member of the family. The chapter covers demographic factors underlying this policy development with statistical tables, and the two principal stages of French social care policy, examining the impact of these on carers who may be either formal (paid) or informal (unpaid). The development in France of a policy relating to frail older people has been very slow with the political debate comprising four main issues - compulsory or optional insurance, funding and management, the relationship of the different welfare sectors and the relationship between the family, the market and the state. The development of the PSD and its characteristics and take-up rates are explored. The policy was much delayed provoking intense dissatisfaction from [...]

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Shadow Times: The Temporal and Spatial Frameworks and Experiences of Caring and Working

In this article we explore temporal and spatial frameworks for analysing the experience of combining caring for children with participation in paid work. We highlight the pressure to undertake paid employment routinely, which places particular strains upon people who are most likely to have to combine caring and working. The authors assert that mothers continue to have the main responsibility for the organization, if not the conduct, of caring work (Sevenhuijsen, 1998). Traditional assumptions about the seeming relationship between femininity and caring remain relatively intact, despite major shifts in family formation, women’s participation in the labour market and debates about the changing role of men (Cancian and Oliker, 1999; Lister, 1997). Drawing upon the work of Adam (2000) on timescapes we develop the notion of caringscapes as a means by which the processes of combining caring and working may be theorized and also incorporated into UK government policy related to caring (whether directly or indirectly). We draw attention to the inadequacy of public policy that does not incorporate an awareness of the demands of the everyday across the lifecourse, of which a spatial-temporal component should be fundamental. The authors propose a caringscape perspective as a basis for both future research and policy developments and conclude that an enhanced recognition of the fluidity and praxis of caring and gender is necessary to support the evolving roles of parents, especially mothers who combine caring and working.

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Dynamic wage and employment effects of elder parent care

This article formulates and estimates a dynamic discrete choice model of elder parent care and work to analyze how caregiving affects a woman's current and future labor force participation and wages. The model incorporates parental health changes, human capital accumulation, and job offer availability. The estimates indicate that women face low probabilities of returning to work or increasing work hours after a caregiving spell. I use the estimated model to simulate the caregiving, employment, and welfare effects of a longer unpaid work leave than currently available under the Family and Medical Leave Act, a paid leave, and a caregiver allowance.

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Using the social care framework to analyse research on young carers

Bettina Cass, with Deborah Brennan, Ilan Katz, Catherine Thomson and Deborah Mitchell, and 10 Partner organisations in NSW and South Australia, are undertaking a three-year ARC Linkage Grant project on 'Young Carers: Social Policy impacts of the caring responsibilities of children and young people'. Located at the Social Policy Research Centre (UNSW), the investigators are exploring the interplay between the socio-economic and socio-cultural circumstances in which young people take up caring responsibilities; the policy settings that affect the level and types of care which they provide; and the impacts of care-giving on their participation in education, employment and friendship/social networks. The project will map the gaps in service provision which young carers, their care recipients and service providers identify.

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The influence of end-of-life cancer care on caregivers

The purpose of this secondary analysis was to glean from prospective data whether those caring for elderly family members recently diagnosed with cancer who ultimately died reported different caregiver depressive symptomatology and burden than caregivers of those who survived. Findings from interviews with 618 caregivers revealed that caregiver depressive symptomatology differed based on family members' survival status, and spousal caregivers experienced greater burden when a family member was near death than did non-spousal caregivers. Family member symptoms and limitations in daily living, as well as caregiver health status, age, and employment, were associated with caregiver depressive symptomatology and burden; however, these associations had no interaction with family member survival status. © 2007 Wiley Periodicals, Inc. 

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Focus on home: what time-use data can tell about caregiving to adults

This study analyses data from Statistics Canada's 1998 social survey of 10,749 people to learn more about the nature and situation of Canadian adults providing care at home to other adults. Data included time-use and respondents' sociodemographic, cultural, work, and leisure characteristics, as well as outcome factors. The analyses found 212 respondents (about 2 percent) providing personal, medical, or other care to other household adults on the day studied. Carers were compared to those not found to provide these services. The article explores time-use trade-offs, feelings of stress, and the ramifications of gender, age, and paid work in this newly reemerging use of household space.

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Carers strategy: second national action plan 2014 - 2016

Summarises the Government's progress in supporting carers since the publication of Recognised, valued and supported: next steps for the Carers Strategy' in 2010. It provides an overview of evidence gathered over the last few years and explains the main achievements in recognising and supporting carers during that time. It focuses specifically on progress in four priority areas: early identification and recognition of carers; realising and releasing potential and enabling carers to fulfil their educational and employment potential; providing support to enable carers to have a family and community life alongside caring; and supporting carers to stay mentally and physically well. The report also identifies key actions for the Government for the next 2 years. Examples of initiatives and good practice are included throughout.

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Scottish Household Survey analytical topic report: characteristics and experiences of unpaid carers in Scotland

This report discusses the characteristics and experiences of unpaid carers and those in receipt of unpaid care in Scotland, by analysing the Scottish Household Survey from 1999 to 2004. The aim of the report is to provide a clear picture of unpaid carers and identify those groups of carers who are in particular need of support in order to inform the development of Scottish Executive policy on carers.

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Who will care? Employment participation and willingness to supply informal care

The impact of informal care responsibilities on the willingness and ability of caregivers to undertake paid employment has been the Subject of a number of studies. In contrast, the effect of employment status on willingness to undertake informal care has been less well explored. This paper concentrates on this less-studied direction of causality using the data provided by 15 waves of the British Household Panel Survey. We find that employment participation and earnings both impact negatively on willingness to supply informal care. This evidence has implications for health and social care policy since informal care has been shown to be a significant substitute for formal long-term care. (C) 2009 Elsevier B.V. All rights reserved.

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Who's going to care?

This chapter explores the provision of care and considers possible future developments and the challenges around provision. We begin with a discussion of human resources, posing the question of whether the UK can satisfy the growing demand for carers, both informal and professional. We specifically examine the different types of carer: the self-carer, informal carers and professionals – social carers, nurses, and doctors, and the implications for health and social care policy and consider the implications for these carer roles in society. We also look at current policy on care in the UK. 

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Patterns of exclusion of carers for people with mental health problems - the perspectives of professionals

A major issue in research, policy and professional practice is the social exclusion of carers, in particular carers for people with mental health problems. In order to address the issue of social exclusion from the perspectives of professionals, 65 participants were interviewed. The sample included directors, managers and senior staff from the social care, health and voluntary sectors. Respondents were asked to comment at length on the social exclusion of carers. Findings highlight four main types of exclusion: first, personal exclusions, including stigma; keeping mental health problems ‘a secret’; and taboos surrounding mental health care; second, social exclusions, such as isolation; narrowing of social networks; restrictions due to time commitments; exclusions relating to education, training, employment and leisure; and young carers; third, service exclusions involving carers being taken for granted and having difficulties with access to appropriate services; and fourth, financial or economic exclusions that lead to carers paying for care. This paper documents patterns of exclusion and draws out implications for research, policy and professional practice. In conclusion this paper also considers the ways in which professionals and services may better promote the social inclusion of carers for people with mental health problems in the future.

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Social inclusion for the mental health of informal caregivers of Alzheimer disease's patients: The role of reemployment strategies of socially excluded

Alzheimer's disease (AD) is a one of the leading cause of dependency among older adults and of institutionalization in Europe. The number of people with AD is estimated in 10 million people and the cost of the disease has been recently estimated in 100.000 million of euros per year in the European Union (European Brain Council, 2011). There is nowadays no effective treatment of the disease. Currently, care of AD patients is primary sustained by informal caregivers who suffer burden as a result of their care responsibilities, and consequently are mainly affected by mental health problems (depression, anxiety, etc). This burden is also related with a premature institutionalization and violence against AD patients. In this sense, effective solutions are needed in order to fight against the mental health problems of informal caregivers. Regarding this, a social innovation research, funded by the Progress Programme of the DG of Employment, Social Affairs and Inclusion of the European Commission, is being developed currently in France and Spain, where the authors are aimed to demonstrate how a specialized formal training in AD addressed to people in risk of labour and social exclusion could improve the quality of life of AD patients and reduce the informal caregiver burden. The results of this research is specially relevant to help to reduce mental health problems of the informal carers of AD patients, but also in terms of intervene on the cognitive skills of the persons affected, as well as to allow the employment of socially excluded people.

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Are informal caregivers less happy than noncaregivers? Happiness and the intensity of caregiving in combination with paid and voluntary work

Informal caregivers are one of the pillars of home health care. In the Netherlands, the free help they provide to sick or disabled family members, acquaintances or friends exceeds the number of hours of home care provided by professionals. While the government welcomes their contribution, there is concern about the potential burden their work imposes on them. On the one hand, there is concern that informal caregiving could be experienced as a burden and diminish subjective well-being; on the other, helping others as a meaningful activity might increase their subjective well-being. Happiness ratings (as an indicator of subjective well-being) of persons whose involvement in informal caregiving, voluntary work and paid work ranged from none to full time were analysed using multivariate regression models, which also took into account levels of physical disability and socio-economic characteristics (age, sex, household composition, education level). The sample consisted of 336 informal caregivers and 1765 noncaregivers in the Dutch population. In line with the subjective well-being assumption, the results suggest that caregivers are happier than noncaregivers when they provide care for <6 hours a week; and in line with the burden assumption, the results show that providing care for more than 11 hours a week is associated with lower levels of happiness. Other results contradicted the burden assumption that combining caregiving with paid or voluntary work is associated with more time burden and less happiness. The result that combining caregiving with paid employment or volunteering is related to higher rates of happiness confirms the subjective well-being assumption. It is concluded that these cross-sectional results open ways to longitudinal research that can inform governments in the development of policies to support informal caregivers.

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The redefinition of the familialist home care model in France: the complex formalization of care through cash payment

This article investigates the impact of policy measures on the organisation of home-based care for older people in France, by examining the balance between formal and informal care and the redefinition of the initial familialist model. It focuses on the specific cash for care scheme (the Allocation personnalisée d’autonomie – Personalised allowance for autonomy) which is at the core of the French home-based care policy. The author argues that in a redefined context of ‘welfare mix’, the French public strategy for supporting home-based care in France is articulated around two major objectives, which can appear contradictory. It aims to formalise a professional care sector, with respect to the employment policy while allowing the development of new forms of informal care, which cannot be considered to be formal employment. The data collection is two-fold. Firstly, a detailed analysis was made of different policy documents and public reports, together with a systematic review of existing studies. Secondly, statistical analysis on home-based care resources were collected, which was not easy, as home-care services for older people in France are part of a larger sector of activity, ‘personal services’ (services à la personne). The article exposes three main findings. First, it highlights the complexity of the formalisation process related to the introduction of the French care allowance and demonstrates that formalisation, which facilitates the recognition of care as work, does not necessarily mean professionalisation. Second, it outlines the diversity of the resources available: heterogeneous professional care, semi-formal forms of care work with the possibility to employ a relative and informal family care. Finally, the analysis outlines the importance of the regulation of cash payments on the reshaping of formal and informal care and comments on its impact on the redefinition of informal caring activities.

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Hurdles that impede economic evaluations of welfare interventions

Compared with economic evaluations of healthcare interventions, less experience has been gained in the field of economic evaluation of welfare interventions. This review suggests possible approaches to address four previously identified hurdles in economic evaluations of welfare interventions. After literature was searched through MEDLINE and EMBASE, it was found that Health-Related-Quality-of-Life questionnaires related to the condition of the target population are needed, instead of generic instruments. These condition-specific instruments use a multidimensional approach. There are specific instruments needed to take account of influences on informal caregivers. Moreover, it was shown that several aspects, such as crime rates and employment should be considered to estimate the impact on societal costs. Finally, the intervention must be described in detail and well defined to reduce variability. In conclusion, economic evaluations of welfare interventions increase complexity. These must be accounted for to permit valid assessments of the value for money of welfare interventions.

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Carers (Equal Opportunities) Bill [as amended in standing committee C]

This Bill is to make provision about employment of carers and the duty to inform carers of the right to assessment, and to place duties on local authorities and health bodies to achieve this.

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Caring for Carers: Recognising, Valuing and Supporting the Caring Role

The article focuses on a strategy meant for providing support for carers across Northern Ireland. The strategy quotes census figures indicating that there are more than 185,000 unpaid carers in Northern Ireland, equating to about 11 percent of the population. Carers need some help and support to enable them to continue in their caring role. The strategy include the identification of those acting in a caring role, information for carers, support services, the special needs of young carers and training and employment.

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Employment rights for informal carers

As you may have heard, the Queen’s Speech, which opened the 2008-2009 parliamentary year, included reference to the importance of rights for informal carers (House of Commons, 2008). I am no stranger to the world of informal caring as many of you may know. Indeed, I have made it no secret and frequently mention it at the annual Royal College of Nursing Congress and have done so since 2001. For those of you who may not be aware of the term ‘informal carer’, an informal carer is a person who looks after another, be it a friend, neighbour or relative, without pay, regulation, formal recognition or training. This is in contrast to ‘formal carers’ who are employed, paid, recognized, trained and in the case of many care professionals such as nurses and doctors, are regulated. Many, myself included, do both!

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Development of a position document for home care - wound care

Introduction and description of care: The management of non-healing wounds in Europe has gone through a dramatic shift in the location of service delivery from hospital towards home care settings. As a consequence more wounds with complex pathological pictures due to untreated patient co-morbidities are treated at home. There are no guidelines available covering the subject of home-care wound-management from a clinical perspective as well as no recommendations of minimal requirement of providing best care and supporting the empowerment of informal carers and patients with non-healing wounds in the home-care setting. Methods and aim: Based on literature reviews in combination with expert opinions from across sectors and areas of expertise a document was elaborated to give an overview of the main current approaches to the organisation of wound care within home-care settings, to identify possible barriers, challenges and opportunities for providing modern, cost-efficient, interdisciplinary wound care. The document has been developed in an intersectoral collaboration across European countries and organisations between the Tissue Viability Society (UK), Initiative Chronische Wunden (Germany), HomeCare Europe and EWMA. Thus, the focus is interdisciplinary and not tied to a specific health care system. Conclusion and discussion: Describing recommendations and raising a debate of how to manage non-healing wounds at home is of crucial importance for healthcare professionals, - providers, companies and policy makers as there is a tendency in home care of going towards employment of non-registered nurses. The document underlines the importance, scope, and level of the appropriate skills and gives recommendations for the interdisciplinary set-up required for wound care in the home-care setting.

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Caring together: the carers strategy for Scotland 2010-2015

The Scottish Government and COSLA are determined to ensure that carers are supported to manage their caring responsibilities with confidence and in good health, and to have a life of their own outside of caring. We are pleased to have worked together with a range of interests, including Health Boards, the national carer organisations and carers in developing this strategy. It will build on the support already in place and take forward the recommendations of the landmark report, Care 21: The Future of Unpaid Care in Scotland. We recognise carers as equal partners in the delivery of care in Scotland and fully acknowledge carers’ expertise, knowledge and the quality of care they give. With appropriate support, especially support delivered early to prevent crisis, caring need not have an adverse impact on carers. Caring Together sets out 10 key actions to improve support to carers over the next five years. The focus is on improved identification of carers, assessment, information and advice, health and wellbeing, carer support, participation and partnership. In support of this agenda, the Scottish Government is pleased to announce an investment of a further £1 million in 2010-11 to voluntary sector organisations to provide more innovative short breaks provision in Scotland. The strategy sits within a wider context and reform agenda, with carers at the heart of this agenda. In order to achieve lasting change both for carers and the people they care for, we need to drive forward a range of policy developments, such as action to tackle health inequalities and household income. We need to do more to shift resources from institutional care to care at home, including support for carers. The Reshaping Care for Older People Strategic Delivery Plan, which is in preparation, will articulate the extent of the shift in resources within the system.

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To work or to care? Working women's decision-making

Recent changes in older people's public care services in Nordic countries in particular in Finland and Sweden are based on implicit expectations that family members will increase their involvement in care. In Nordic countries, the care of small children has been acknowledged to be a social matter that concerns gender equality and the work life participation of both men and women, while the situation of working carers of older people is much less acknowledged. This study addressed the question of how Finnish working women who give care to their older parents argue for and against their decisions of working and caring and the meaning of work and care in these decisions. Majority of the interviewees emphasised the importance of work and refuted the idea of leaving work for care. The decision not to leave work for care was justified with worker identity, commitment to work, having no innate skills to be a carer, availability of support services and other carers and financial necessity. On the other hand, a few interviewees brought forward their willingness to leave work which was justified by constructing care as meaningful and valuable activity as opposed to meaningless paid employment, and with the intensification of work, and with ageing. Lengthy argumentation and several discursive tools indicate that women anticipated moral blame for the decision of giving work primacy over care, but also for leaving work. Thus, working carers balance between contrasting expectations to care and to work.

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The Business of Caring: Women's Self-Employment and the Marketization of Care

Our goal in this article is to contribute to a differentiated analysis of paid caring work by considering whether and how women's experiences of such work is shaped by their employment status (for example, self-employed versus employee) and the nature of care provided (direct or indirect). Self-employed care workers have not been widely studied compared with other types of care workers, such as employees providing domestic or childcare in private firms or private homes. Yet their experiences may be quite distinct. Existing research suggests that self-employed workers earn less than employees and are often excluded from employment protection. Nonetheless, they often report greater autonomy and job satisfaction in their day-to-day work. Understanding more about the experiences of self-employed caregivers is thus important for enriching existing theory, research and policy on the marketization of care. Addressing this gap, our article explores the working conditions, pay and levels of satisfaction of care workers who are self-employed. We draw on interviews from a small-scale study of Canadian women engaged in providing direct care (for example, childcare) and indirect care (for example, cleaning).

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Re-Shaping Social Care Services for Older People in England: Policy Development and the Problem of Achieving 'Good Care'

The first part of the paper argues that the care relationship is crucial to securing care quality, which has implications for the way in which quality is achieved and measured. However, for more than twenty years, governments have emphasised the part that increasing market competition and, more recently, user choice of services can play in driving up the quality of care. The second part of the paper analyses the development of social care services for older people, from the reform of 1990 to the changes following the general election of 2010. The paper goes on to examine whether competition and choice are in any case enough to result in ‘good care’, given the evidence of limitations both in the amount of choice available and in how far older people are able or willing to choose. It is argued that if ‘good care’ depends disproportionately on the quality of the care relationship, then more attention should be paid to the care workforce, which has received relatively little comment in recent government documents.

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Who cares? – caring for the carers of stroke patients

The author reflects on the employment of informal carers to assist stroke patients in England and Wales in recovering from severe disability. He cites that the National Service Framework for Older People emphasizes the importance of care for stroke patients to be able to live at home. The employment of informal carers was questioned during the National Sentinel Audit for Stroke due to some factors that affect the quality of services and the life of the care taker.

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Give me a break! Informal caregiver attitudes towards respite care

Background/objective: Because informal health care is now recognized to be indispensable to health care systems, different forms of respite care have been developed and publicly funded that supposedly alleviate caregivers’ perceived burdens and help prolong the care giving task. Nonetheless, the use of respite care services is low even among substantially strained caregivers. To throw light on this low usage, this paper explores the associations between attitudes towards respite care, characteristics of the care giving situation, and the need and use of respite care.

Method: The survey, administered to a sample of 273 informal caregivers, addressed caregiver, care recipient, and care giving situation characteristics, as well as the familiarity and use of respite care services. It also included a sub-set of 12 statements eliciting attitudes towards respite care from an earlier study [Van Exel NJA, De Graaf G, Brouwer WBF. Care for a break? An investigation of informal caregivers’ attitudes toward respite care using Q-methodology. Health Policy 2007;83(2/3):332–42]. Associations between variables were measured using univariate statistics and multinomial logistic regression.

Results: We found three caregiver attitudes, distributed fairly equally in the sample, that are apparently associated with caregiver educational level, employment status, health and happiness, as well as care recipient gender, duration and intensity of care giving, relationship, co-residence, need for surveillance, and subjective burden and process utility of care giving. However, the relation between attitude and familiarity with and use of respite care services is ambiguous.

Conclusions: Although further exploration is needed of the mix of Q-methodology and survey analysis, the overall results indicate that a considerable portion of the caregiver population needs but does not readily ask for support or respite care. This finding has important policy implications in the context of an ageing population.

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Confronting the care penalty: the case for extending reasonable adjustment rights along the disability/care continuum

Informal caring for adults with disabilities is a source of unacceptable disadvantage in employment, finances, social inclusion, and health; here termed the ‘care penalty’. This penalty can be appropriately tackled through equality law, making care a ground for unlawful discrimination. Carers are not adequately protected from indirectly discriminatory disadvantages by other grounds such as sex and disability. Nor are carers adequately protected by carer-specific provisions such as the UK right to request flexible working. This paper argues that a reasonable adjustment right should be available to carers. It challenges the model of reasonable adjustment as a special right, over and above other non-discrimination measures, so restricted to persons with disabilities. Instead, it is here argued that reasonable adjustment is a compromise – a lesser measure adopted to reduce the duties arising from protection from indirect disability discrimination. Once viewed as a compromise, its extension to carers becomes practicable, revealing that disability and care form a continuum, along which each of us dip in and out during our lives. The looming ‘care crisis’ stemming from demographic change means that states have a significant financial incentive to make work compatible with increasingly common care duties.

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Co-ordinated, integrated and fit for purpose: a delivery framework for adult rehabilitation in Scotland

The Delivery Framework for Adult Rehabilitation in Scotland reflects the importance of rehabilitation in health and social care and recognises people’s potential to overcome barriers to independent living. The framework focuses on three key groups: older people, adults with long-term conditions and people returning from work absence and/or wishing to stay in employment, and aims to maximise individuals’ participation in their communities and improve quality of life for them, their family and carers. Its recommendations aim to break down the traditional boundaries between health professions and care professionals, between phases of care, between locations of care and between the conventional preserves of health care and social work.

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Gender, caring and employment in Britain

Employment and social policies continue to be based upon a gender template that assumes women, especially mothers, are or should be natural carers. Invariably, policies that seek to promote women's entry to paid work do so by facilitating their management and conduct of caring work, thus reinforcing the gender template. In addition, contemporary debates around concepts of citizenship emphasise the obligation to paid employment but fail to tackle the gendered division of caring activities and organisation of care. Enhanced access to childcare merely recreates the gender template by promoting low paid jobs for women as paid carers who are predominantly providing care services for other women. The provision of unpaid paternity leave is unlikely to challenge the strong association between femininity, mothering and care work.

In this article we explore notions of caring, home and employment. It is argued that ambivalence exists amongst policy makers, employers, and society more generally, towards the gendered nature of caring and the implications of this for women, and men who wish to care, who are in paid employment. These are old issues and the authors consider why change in social and public policies is so slow. The authors argue that a consideration of gender and equality principles, currently largely absent from welfare and employment policies, and debates on notions of citizenship, should form the basis for the development of future strategies to support parents and children.

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Informal Care and Labor Supply

Based on Norwegian register data we show that having a lone parent in the terminal phase of life significantly affects the offspring's labor market activity. The employment propensity declines by around 1 percentage point among sons and 2 percentage points among daughters during the years just prior to the parent's death, ceteris paribus. Long-term sickness absence increases sharply. The probability of being a long-term social security claimant (defined as being a claimant for at least three months during a year) rises with as much as 4 percentage points for sons and 2 percentage points for daughters. After the parent's demise, earnings tend to rise for those still in employment while the employment propensity continues to decline. The higher rate of social security dependency persists for several years.

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Burden on caregivers of people with schizophrenia: comparison between Germany and Britain

Background Burden on the relatives of patients with schizophrenia may be influenced not only by patient and caregiver characteristics, but also by differences in mental health service provision.

Aims To analyse whether family burden is affected by national differences in the provision of mental health services.

Method Patients with schizophrenia and their key relatives were examined in Germany (n=333) and Britain (n=170). Differences in family burden in both countries were analysed with regression models controlling for patient and caregiver characteristics.

Results Family burden was associated with patients’symptoms, male gender, unemployment and marital status, as well as caregivers’coping abilities, patient contact and being a patient’s parent. However, even when these attributes were controlled for, British caregivers reported more burden than German caregivers.

Conclusions National differences in family burden may be related to different healthcare systems in Germany and Britain. Support for patients with schizophrenia may be shifted from the professional to the informal healthcare sector more in Britain than in Germany.

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Caring for adults in the EU: work-life balance and challenges for EU law

Unpaid carers of adults, as a group, have, until recently, been largely neglected by the EU. While a number of provisions of EU law – including anti-discrimination measures and protections for part time workers – may benefit (some) carers of adults in the workplace, the existing package of work–life balance regulation falls well short of a coherent approach to addressing the needs of this group. Growing concern about a crisis in social care across member states, linked to an ageing demographic, has recently focussed attention on inadequacies in the formal care sector; on the vital economic contribution of unpaid care; and on a projected rise in the need for care coupled with a decline in the availability of informal care as the population ages and family structures change. It has prompted interest both in the need to develop the formal care sector, with the opportunities this may present to create employment, and in the need to support ‘informal’ carers in the workplace. This paper explores the various policy drivers for EU regulation to support informal carers in the workplace and consider the potential difficulties in establishing a coherent legal response.

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The same as you? Partnership in practice agreements 2004-2007: national overview and next steps

One of the 29 recommendations of the 'The same as you?' review was that local authorities and health boards should draw up Partnership in Practice agreements (PiPs). The aim of this national overview report is to provide feedback on the key messages that emerge from a review of all of the 2004-2007 PiPs, taking account of additional evidence from other sources. Key themes identified are: health promotion and improving access to health, Local Area Coordination, carers, short breaks or respite, autism spectrum disorders, Direct Payments, day services, further education and employment, supported living and vulnerable adults. This report aims to highlight positive developments that can be shared to support improvement across Scotland, and to inform the next round of plans for 2007-2010.

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Dads care too! Participation in paid employment and experiences of workplace flexibility for Australian fathers caring for children and young adults with disabilities

This study uses Australian survey data to explore whether caring for children and young people with disabilities affects paid employment participation of fathers who identify as the secondary caregiver. More fathers in the study were in full-time employment than those in the general Australian population, but they worked fewer hours, often in jobs they did not enjoy or roles with less responsibility. Over one third of fathers reported that caring had impacted on their job opportunities or career progression, particularly those whose children had more severe disabilities. The financial costs of raising a child with disabilities and their caring obligations informed many of the decisions fathers made in relation to employment. Fixed hours of work, lack of understanding from their employer, an income tied to hours worked and staff resources were cited as reasons why almost half of the fathers felt they were unable to access flexible working conditions to assist with their child’s care. Self-employment was seen by many fathers as desirable, but the perceived increase in flexibility may be accompanied by an increase in work hours. Implications for paternal well-being are discussed, along with the lifelong implications of caring on employment and financial security for families in the Australian context.

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Partners in care: sharing

INTRODUCTORY NOTE

My wife, Pauline, died from Alzheimer’s disease at the age of 59. She was 51 when diagnosed after several years of problems. I cared for her at home. For the first 3 years, I maintained my employment, albeit on an increasingly part-time basis, but resigned from work and cared for her full-time for 5 years when her needs demanded round-the-clock attention. She remained in her own home to within 5 weeks of her death, when fracturing my leg put paid to my direct caring role.

The article was originally written along with two or three others as a result of a commission from Suffolk Carers for their magazine. This was some time before Pauline’s death. In ‘Sharing’, I tried to encapsulate the story of our marriage and the effect that Alzheimer’s disease had had on that relationship. However, the writing took over from the concept and it became too much of a personal statement about us for me to be happy about it being read by others while Pauline was still alive but unable to contribute, so I didn’t offer it for publication but filed it away. I think the writing was, in any case, a sort of much-needed therapy for me at that time.

Philip Ingram July 2003

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Labor market work and home care's unpaid caregivers : a systematic review of labor force participation rates, predictors of labor market withdrawal, and hours of work

As people continue to age and receive complex health care services at home, concern has arisen about the availability of family caregivers and their ability to combine employment with caregiving. This article evaluates the international research on unpaid caregivers and their labour market choices, highlighting three conclusions: first, caregivers in general are equally as likely to be in the labour force as non-caregivers; second, caregivers are more likely to work fewer hours in the labour market than non-caregivers, particularly if their caring commitments are heavy; and finally, only those heavily involved in caregiving are significantly more likely to withdraw from the labour market than non-caregivers. Policy recommendations are targeting greater access to formal care for 'intensive' caregivers and developing workplace policies for employed caregivers.

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Valuing people: a New Strategy for Learning Disability for the 21st Century; a White Paper presented to Parliament by the Secretary of State for Health by command of Her Majesty March 2001

Describes the government's strategy for improving the life chances of people with learning disabilities. Covers issues such as improving service provision for children with learning disabilities; improving choice and control for people with learning disabilities; supporting carers; improving health care for people with learning disabilities; providing housing, employment and fulfilling lives; and assuring quality in services.

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The effects of an integrated care intervention for the frail elderly on informal caregivers : a quasi-experimental study

Background: This study explored the effects of an integrated care model aimed at the frail elderly on the perceived health, objective burden, subjective burden and quality of life of informal caregivers.

Methods: A quasi-experimental design with before/after measurement (with questionnaires) and a control group was used. The analysis encompassed within and between groups analyses and regression analyses with baseline measurements, control variables (gender, age, co-residence with care receiver, income, education, having a life partner, employment and the duration of caregiving) and the intervention as independent variables.

Results: The intervention significantly contributed to the reduction of subjective burden and significantly contributed to the increased likelihood that informal caregivers assumed household tasks. No effects were observed on perceived, health, time investment and quality of life.

Conclusions: This study implies that integrated care models aimed at the frail elderly can benefit informal caregivers and that such interventions can be implemented without demanding additional time investments from informal caregivers. Recommendations for future interventions and research are provided.

Trial registration: ISRCTN05748494. Current Controlled Trials  Registration date: 14/03/2013.

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Bounded agency in young carers' lifecourse-stage domains and transitions

This paper presents the findings from a project investigating the circumstances, experiences, perspectives and service needs of young people caring for a family member with a disability or long-term illness. Using qualitative methods, our research explored the experiences of two cohorts of young carers – younger carers aged 7 to 17 years and young adult carers aged 18 to 25 years. The concept of ‘bounded agency’ offers an explanation for the way that younger carers' and young adult carers' decisions and aspirations can be shaped by the barriers and contexts in which they find themselves. The study compares the impacts of caring on the participants' education, employment, health and social life. Important differences are identified, particularly relating to young adult carers' future aspirations as they approach key normative transitions into young adulthood. The paper concludes with implications for services and policy for young carers. [ABSTRACT FROM AUTHOR];Copyright of Journal of Youth Studies

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Sandwich caring: combining childcare with caring for older or disabled relatives

This report presents the findings of a survey exploring the challenges of raising young children alongside supporting older parents or disabled family members. The findings of the survey included that: only 12% of sandwich carers felt they were juggling everything well, over four in ten (42%) were struggling to cope or at breaking point; three quarters (74%) said that caring for both children and older or disabled loved ones had a negative impact on their ability to earn; over two thirds (69%) said they had seen a negative impact on their ability to afford household bills; almost two thirds (63%) said that sandwich caring had taken a toll on their relationship with their spouse or partner; seven in ten (69%) had seen their friendships suffer; and only half of sandwich carers surveyed were able to juggle work and care. The experiences of sandwich carers set out in this report demonstrate that, without support, the pressure of combined caring responsibilities can take a serious toll on families’ health, finances, careers and relationships.

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The Government response to the consultation on revised statutory guidance to implement the Strategy for Adults with Autism in England

1. This document is a summary of the responses received during the consultation on revised statutory guidance to implement the Strategy for Adults with Autism in England. It highlights the key themes and common issues from the consultation responses and sets out the Government’s response that has shaped the statutory guidance. 2 Autism is a lifelong condition that influences how people interpret the world and interact with others. It is estimated that more than 500,000 people in England are on the autism spectrum, which includes people with high functioning autism and Asperger Syndrome. Autism is something that people and their families live with permanently so gaining the right support at the right time can make a significant difference to people’s lives. 3. The statutory guidance updates the original guidance, taking into account progress made since 2010 and changes in line with recent legislation such as the Care Act 2014 and the Children and Families Act 2014

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Caring for the carers

Estimates suggest there are 5.7 million carers in the UK, carrying out unpaid work valued at a massive 34 billion. The role is undefined and rarely chosen voluntarily. The carers and Disabled Children Act, which came into force in April 2001, gives carer the right to an assessment and local authorities the power to make payments and provide services direct to carers. The carers' Resource is an independent charitable company offering a direct point of contact for carers and professionals seeking information, advice, support, referral, representation and advocacy. 2 refs. [Summary]

Gender, poverty and social exclusion

Throughout the 20th century women were more vulnerable to poverty than men which continues into the 21st century. These gender differences are explored in a chapter on gender, poverty and social exclusion in a volume giving the results of the millennium Poverty and Social Exclusion (PSE) Survey. Social exclusion exists where one or more of the social sub-systems is not functioning adequately - the economic, social and family and community systems. Women's poverty is linked to caring and domestic work and is related to the control of financial resources in marriage and the family, they are increasingly dependent on their own earnings, generally lower than men's. The disproportionate care of elderly people has more impact on women. The PSE Survey did not explore the views of all members of a household, a significant limitation in this context. The remaining two sections examine gender and poverty, and gender and social exclusion through the lifecourse. The first investigates the lack of socially perceived [...]

Transitions into informal caregiving and out of paid employment of women in their 50s

Data from the Australian Longitudinal Study on Women's Health were used to study the order of events leading to informal caregiving and changes in labour force participation in mid-aged women, taking into account health and socioeconomic status. This analysis included 9857 women who responded to the third (2001) and fourth (2004) surveys and provided data for the caring and employment variables used. Caring was defined as providing care for an ill, frail or disabled person at least 7 h/wk. Between 2001 and 2004, the proportion of women caring increased from 12 to 14%. Paid employment participation decreased from 67 to 62% in 2004. Logistic regression model results show that taking up caring between 2001 and 2004 was not statistically significantly associated with employment status in 2001. Among women who took up caring, however, hours spent in paid employment in 2001 was negatively associated with hours spent caring in 2004. Amongst women working in 2001, taking up caring between 2001 and 2004 was associated with reduced participation in paid employment.

In conclusion, among mid-aged women, transitions into caregiving were irrespective of time spent in paid employment, but were followed by a decrease in labour force participation. Policies could aim to support continuing labour force participation during caregiving by creating flexible working arrangements; re-employment programs could support women who quit work in getting back to paid employment after a period of caregiving.

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Caregiving for the elderly family members as a challenge for men - The hidden and forgotten carers in ageing Europe

The purpose of our research was to investigate male caregiving via a status of being hidden and forgotten in East-Central Europe, where caregiving itself had only lately been emancipated, and only as provided by women. In Poland and in other European countries the gender bias is clear: men provide less care than women, the care is less intensive and of a different character. By desk research, own research interpretation and literature review, the paper addressed informal, family caregiving towards frail older adults performed by men. We examined the assumption that the family was the prime careholder of the aged as imprinted in European psyche and stereotypical expectations that females became the main caregivers. Yet, the demographic forecast showed that informal caregiving for frail adults was inevitably falling on men, as a result of increasing divorce rates and women’s employment. However, this picture is incomplete, making men forgotten or hidden carers. Major findings of our research were to provide a broader discourse on male caregiving and have positive impact with practical after-effects as well as filling gaps in knowledge in several relevant fields

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Double-duty caregivers: healthcare professionals juggling employment and informal caregiving. A survey on personal health and work experiences

Aims: This study compared the work-related experiences and personal health status of double-duty caregivers with those of caregivers who do not provide informal care to a family member or close friend in need.

Background: The interest in providing informal care alongside employment is growing. However, little attention has been paid to the dual role of the healthcare professional who also has caregiving responsibilities for a needy person in his/her private situation. It is important to study the negative and positive consequences of this combination of professional and family care giving.

Design: A cross-sectional study.

Methods: In 2011, we distributed a digital questionnaire to employees with a professional care function working at a healthcare organization in the Netherlands. Descriptive statistics, analyses of covariance and tests of linearity were performed.

Results: Analyses of variance demonstrated that as professional healthcare workers provide more hours of informal care in their private lives, their mental and physical health significantly worsens, while their need for recovery increases. Also, statistical significant increases were seen for emotional exhaustion, presenteeism and negative experiences with Work–Home and Home–Work Interferences. Remarkably, positive Home–Work Interference increased significantly with increasing hours of informal care. Double-duty caregivers appeared to be equally motivated and satisfied with their work as their co-workers. No differences were seen with respect to absenteeism.

Conclusion: Double-duty caregivers prove to be employees who are at risk of developing symptoms of overload. This finding calls for special attention, with long-term solutions at both legislative and organizational level.

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Informal Carers and Their Support

The importance of informal carers has only been partially recognised in the UK. A brief examination of recent policy such as the UK Carers Act will highlight the need for further action in this area. The conceptual debate about ‘what is caring’ is summarised: does it involve physical activities only? Are emotional elements also involved? The significance of the informal caregiver's role is discussed. Informal caregiving can bring rewards, but it often has to coincide with other equally demanding roles including employment. Moreover, psychological distress is common among informal carers generally, and the likelihood of poor psychological well-being is greater in carers of people with dementia compared with relatives of older people without dementia. The need to ‘care for carers’ is discussed. Many interventions aimed at caregivers are inadequate, and the optimum type of intervention may vary depending on the needs of the individual carer. Wider social and demographic changes may jeopardise the informal caring network, as it currently exists. Should our ‘invisible’ carers become unwilling, or unable, to sustain their caring role then the consequences could be bleak.

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Caregiving for Parents and In-Laws: Commonalities and Differences

This study examined support, stress, and well-being between adults who provide care for an aging and disabled parent and those who care for an aging and disabled parent-in-law. The study utilized a sample of individuals caring for a parent (n = 77), individuals caring for an in-law (n = 26) and a comparison group of noncaregivers (n = 1,939) from the Midlife Development in the United States study. In-law caregivers provided more financial assistance but adult child caregivers provided more emotional support and unpaid work. Adult child caregivers reported poorer mental health and family strain; in-law caregivers reported more spouse support and less family strain.

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Participation in socially-productive activities, reciprocity and wellbeing in later life : baseline results in England

This paper examines whether participation in social activities is associated with higher levels of wellbeing among post-retirement age people in England, and, if so, whether these relationships are explained by the reciprocal nature of these activities. Cross-sectional analysis of relationships between social activities (including paid work, caring and volunteering) and wellbeing (quality of life, life satisfaction and depression) was conducted among participants of one wave of the English Longitudinal Study of Ageing (ELSA) who were of state pension age or older. Participants in paid or voluntary work generally had more favourable wellbeing than those who did not participate in these activities. Caring was not associated with wellbeing, although female carers were less likely to be depressed than non-carers. Carers, volunteers and those in paid work who felt adequately rewarded for their activities had better wellbeing than those who were not participating in those activities, while those who did not feel rewarded did not differ from non-participants. These results point to the need to increase the rewards that older people receive from their productive activities, particularly in relation to caring work.

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The effectiveness of paid services in supporting unpaid carers' employment in England

This paper explores the effectiveness of paid services in supporting unpaid carers’ employment in England. There is currently a new emphasis in England on ‘replacement care’, or paid services for the cared-for person, as a means of supporting working carers. The international evidence on the effectiveness of paid services as a means of supporting carers’ employment is inconclusive and does not relate specifically to England. The study reported here explores this issue using the 2009/10 Personal Social Services Survey of Adult Carers in England. The study finds a positive association between carers’ employment and receipt of paid services by the cared-for person, controlling for covariates. It therefore gives support to the hypothesis that services for the cared-for person are effective in supporting carers’ employment. Use of home care and a personal assistant are associated on their own with the employment of both men and women carers, while use of day care and meals-on-wheels are associated specifically with women's employment. Use of short-term breaks are associated with carers’ employment when combined with other services. The paper supports the emphasis in English social policy on paid services as a means of supporting working carers, but questions the use of the term ‘replacement care’ and the emphasis on ‘the market’.

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Women's work is never done: Employment, family and activism - An introduction

This article frames the issues in the Supreme Court case, Nevada Department of Human Resources v. Hibbs, and introduces the articles making up the inaugural symposium of the Law and Women's Studies Program at the University of Cincinnati. Hibbs involved a husband who was trying to get leave under the Family and Medical Leave Act (FMLA) in order to take care of his severely injured wife. The case presents an opportunity to rethink issues of work and family, the legal subordination of women, and the law as an agent for social change, and it was therefore an ideal focus for the symposium.

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The employment costs of caregiving in Norway

Informal eldercare is an important pillar of modern welfare states and the ongoing demographic transition increases the demand for it while social trends reduce the supply. Substantial opportunity costs of informal eldercare in terms of forgone labor opportunities have been identified, yet the effects seem to differ substantially across states and there is a controversy on the effects in the Nordic welfare states. In this study, the effects of informal care on the probability of being employed, the number of hours worked, and wages in Norway are analyzed using data from the Life cOurse, Generation, and Gender survey. New and previously suggested instrumental variables are used to control for the potential endogeneity existing between informal care and employment-related outcomes. In total, being an informal caregiver in Norway is found to entail substantially less costs in terms of forgone formal employment opportunities than in non-Nordic welfare states.

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Work-related factors and early retirement intention : a study of the Danish eldercare sector

Background: Western countries are experiencing an ageing and shrinking workforce in the eldercare sector. This study investigated whether 12 different work-related factors are associated with early retirement intentions of employees in the Danish eldercare sector. We tested whether three hypotheses explained the increase of early retirement intention: (i) high job demands (four factors) and low resources (four factors); (ii) low job attitude (three factors); and (iii) high physical strain (one factor). Methods: We included 2444 employees (aged 45–57 years) from two waves (T1 and T2) from a prospective study. Multinomial logistic regression models showed whether 12 work-related factors (T1) were associated with early retirement intention (T2); very early retirement intention and early retirement intention vs. normal retirement intention. Results: Only 14% of the participants wished to retire at the normal retirement age (65 years or older). High physical strain [hypothesis (iii)] and low and normal affective organizational commitment [hypothesis (ii)] were associated with very early retirement intention. None of the other work-related factors associated with early retirement intention. Conclusions: Future interventions should focus on reducing physical strain and increase or maintain affective organizational commitment among employees in the eldercare sector to postpone retirement.

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Supporting carers in paid employment: developing a needs-led approach

This paper presents some of the key findings from a study about supporting carers in employment. It describes the qualitative experiences of family carers for older people who are in paid employment, paying particular attention to their views on assessment and service provision. The perspectives of other key stakeholders, including staff from statutory and independent sector agencies, are also considered. Support for carers in employment is one of the five priority action areas underpinning the National Strategy for Carers (DoH, 1999). However, the findings from this study reveal that carers in employment have a limited profile at strategic level and their specific needs are rarely addressed in mainstream health and social care planning processes. The findings also suggest that assessment and care management practices are failing to support carers in relation to their employment aspirations. The effectiveness of health and social care assessments in identifying and exploring the needs of carers in employment is limited and very few separate carer assessments are completed. Carers' first‐hand experiences of service provision are described. Deficits in current services are identified and examples of good practice are highlighted. The paper concludes by outlining the implications for policy and practice. It is suggested that flexible support, underpinned by partnerships between employers and staff from statutory and independent sector agencies, is the key to supporting carers in employment.

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Informal adult care and caregivers' employment in Europe

I discuss instrumental variable estimates of the effect of providing unpaid adult care on the caregivers' probability of being employed, using eight waves of the European Community Household Panel. I focus on men aged 40-64 and women aged 40-59 from thirteen Member States, aggregated in two groups of Northern-Central and Southern countries. Previous papers with European data found that IV estimates are more negative than estimates assuming exogeneity of caregiving. I show that this difference is not robust once account is taken of time-invariant unobserved heterogeneity. Indeed, instruments turn out not to be needed, and the estimated effect is negative, but small in both groups of countries. (C) 2011 Elsevier BM. All rights reserved.

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Employment and caregiving: exploration of African American caregivers

To more completely understand the challenges African American families face when combining employment commitments and informal caregiving responsibilities, the authors used data from a community sample of 119 African American elder-caregiver dyads. This article examines the nature of caregiving relationships and extent to which caregivers' employment statuses affect the hours of care provided. The authors concluded that employed caregivers do not provide significantly less care than do unemployed caregivers, elderly people with employed caregivers are no more likely than those with unemployed caregivers to use formal services, and unemployed caregivers may remain unemployed partly because of caregiving responsibilities.

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Caring for carers: recognising, valuing and supporting the caring role

This strategy has been developed around six key areas of concern, which were identified during a period of consultation with carers. These include the identification of those acting in a caring role, information for carers, support services, the special needs of young carers, training and employment.  It is estimated that there are over 185,000 unpaid carers in Northern Ireland. Their contribution to health and social care cannot be overstated. This strategy sets out a vision of what needs to be done to provide those carers with the practical support they want and need to allow them to continue caring and, at the same time, to have as much access as possible to the same opportunities that the rest of us enjoy.

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Employers' knowledge and attitudes regarding organizational policy toward workers caring for aging family members

The study examined employers' knowledge of and attitudes toward working carers who care for aging family members. The study was based on the ecological model. One hundred employers were interviewed using structured questionnaires and 13 employers by additional in-depth interviews. Both research instruments included areas of disruption to the organization, existing policies, and feasibility as to developing appropriate policies to support working carers. Results show that caregiving caused a disruption in workers' functioning mainly by being absent, leaving work early, and coming to work late. Usually, there was “no policy,” and half of the employers did not support introducing such a policy. Women managers in public organizations, who had less seniority and less previous experience with working-carers, tended to be more positive about supportive policies. Recommendations are included.

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Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy

The purpose of this guidance is to secure the implementation of the Adult Autism Strategy “Fulfilling and Rewarding Lives: The Strategy for Adults with Autism in England” 2010 as updated by Think Autism (2014) by giving guidance to Local Authorities, NHS Foundation Trusts and NHS bodies. The guidance focuses on the areas which section 2 of the Autism Act 20097 requires to be addressed, in each case identifying what Local Authorities, Foundation Trusts and NHS bodies are already under a duty to do under legislation, what they are expected to do under other existing guidance, and what they should do under this guidance. Local Authorities, NHS bodies and Foundation Trusts should already be doing much of what is expected of them in complying with this guidance as they should have followed the 2010 statutory guidance (which this guidance builds on and replaces). 

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Employment support for carers

It is estimated that around 6 million adults in Britain are providing unpaid care to a sick, disabled or elderly person. The challenges of combining paid work and informal care affect the type of work that can be done, the hours of work, and the likelihood of gaining or remaining in employment. The main aims of this research were to examine what employment supports are needed for carers currently in work or those who are currently caring or have recently ended a spell of caring and want to return to paid employment. In-depth semi-structured interviews were held with 55 carers, both working and non-working, in Scotland and England during 2008. The interviews collected qualitative data relating to carers’ support needs and their experiences of different agencies and support providers. The report discusses: the roles and impact of being a carer; how caring responsibilities affect people’s decisions about employment; the role of employers; the role and effectiveness of informal and formal sources of support for carers; and the role of the Department for Work and Pensions (DWP) and Jobcentre Plus in supporting carers to remain in, or return to, the labour market. Policy implications are provided for the DWP, employers, NHS and social services, and the voluntary sector.

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Effects of family caregivers on the use of formal long-term care in South Korea

Aim: We investigated whether the presence and characteristics of a family caregiver affect the use of formal long-term care under the new Korean long-term care system.

Background: In July 2008, Korea introduced public long-term care insurance, a form of social insurance, in order to cope with the reality of the growing elderly population and the increasing demand for long-term care.

Methods: The family caregivers of 271 applicants for long-term care insurance who had a caregiver and 36 applicants without a caregiver living in one city participated in this cross-sectional study. Data were collected from November 2010 to June 2011 using self-report questionnaires. Variables included the applicant's gender; age; physical and cognitive function; type of long-term care used; presence and type of family caregivers; caregiver's gender, age, education level, marital status, and employment status; and service use covered by long-term care insurance. Logistic multiple regression was used.

Results: The effect of the presence and characteristics of a family caregiver on the use of a long-term care facility was significant. A nursing home was used for care more frequently when the applicant had no family caregiver. An elderly subject who had a spouse as a caregiver used home healthcare services more often than nursing home services.

Conclusion: The decision to use formal services may depend not only on the care level required by the applicant, but also on the presence and type of caregivers. To successfully implement the new long-term care insurance system, consideration of the caregiver situation should be included in policy development.

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The intersection of employment and care: evidence from a UK case study

Working carers are a key focus of UK policies on health and social care and employment. Complementing national and European evidence, this paper presents a local case study of working carers. It draws on data from a county-wide survey containing a module on caring. Data were primarily categorical and were analysed using SPSS. Three quarters of all carers who responded to the survey were of working age: two thirds were employed and one third had been employed previously. The majority of working carers were mid-life extra-resident women. Over half of cared for relatives were elderly parents/in law; ‘physical illness’ was the primary cause of dependency. A tenth provided intensive care and half reported that caring adversely affected their health. Both were triggers for leaving employment. Two thirds of households received input from services and/or friends/family; being a co-resident carer appeared to mitigate against service allocation. Four issues were identified as pivotal to facilitating employment: access to advice and information, the availability of a matrix of affordable good-quality social-care services, ‘joined up’ needs assessment of the carer and cared for person, and employers identifying carers in their workforce. Europe's ageing profile underscores the study's timeliness.

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Caring, Employment, and Quality of Life: Comparison of Employed and Nonemployed Mothers of Adults with Intellectual Disability

The effects of caregiving on mothers of adults with intellectual disability was examined by determining whether there are differences in quality of life and related factors between mothers with different employment status. Study participants were 302 working-age mothers who had adult children with intellectual disability based on the 2008 census survey on intellectual disability carried out in Hsinchu, City, Taiwan. Results revealed that nonemployed mothers are more likely to have a lower level of health status, including the WHOQOL Physical Health domain, than are mothers employed fulltime. Multiple regression analysis showed that mothers' quality of life was significantly determined by the availability of a person with whom they could share care work, family income, social support, and employment status.

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Carers Assistive Technology Service

Hull Churches Home from Hospital Service (HCHfH) has been at the forefront of bringing assistive technology into the homes of the elderly with chronic illness’ through Telehealth projects since 2008. Over that period the organisation has had a steep learning curve both in terms of introducing assistive technology to an ageing population and familiarising them with the benefits they go on to experience, building a track record in ensuring assistive technology is used and not rejected, our major work currently involves remote monitoring of clients with cardiac conditions and COPD in the community. HCHfH piloted an assistive technology project in 2013; The Carers Assistive Technology (CATs) project, aimed at supporting the local carers of dementia sufferers through the use of simple technological devices e.g. door charms, memo minders, digital photo albums and PARO the interactive seal cub. Family caregivers of people living with dementia experience a high incidence of psychological distress and physical ill-health associated with caring which can reduce their life expectancy. The dominant causes of carer’s distress include the person living with dementia associated behaviour that challenges, depression, anxiety, risk of falling, social isolation, emotional distress and continual 24 hour support without a break. In 2011 HCHfH carried out a needs analysis, “The needs of informal carers of those living with dementia.” Funded by the Department of Health, involving carers and people living with dementia. The study highlighted that family caregivers would like stimulating support for the person living with dementia and to be given confidence to take time out for themselves. The report indicated this support should be offered to them in their own homes. The pilot aim was to evaluate the use of assistive and ambient technologies in the home of a person with dementia and to measure the effectiveness of the different types of technology available, allowing respite for the carer. Maximising the dementia patient’s ability range within their own home environment, enabling the carer to have a more fulfilling lifestyle, while also facilitating their understanding of the process and evolution of End of Life Care of Dementia and the tools available to assist. By supporting the carers and the patient with their abilities and maintaining their independence in their own home the CATs project aided their understanding of dementia, its stages and the equipment that is available to help with everyday life. It offered both practical and emotional support through a team of highly skilled and suitably qualified staff and volunteers. This programme was particularly relevant as the service was driven by user needs and wishes, rather than a one-size-fits-all deployment mentality. Using assistive technology in the homes of those living with dementia provided an opportunity for the carer to take a break and have a more productive life e.g. access to health care, continue employment and maintain relationships. CATs showed how assistive technology can reduce the anxiety of a person living with dementia, keeping their brain working hard, allowing social interaction and involvement, whilst minimising the feelings of isolation and loneliness.

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Work Productivity and Health of Informal Caregivers of Persons With Advanced Cancer

The purpose of this study was to describe health promotion behaviors and work productivity loss in informal caregivers of individuals with advanced stage cancer. Using a cross-sectional, correlational design, 70 caregivers completed measures of health behaviors, mood, social support, and burden. Absenteeism and presenteeism were evaluated in employed caregivers (n = 40). Caregivers reported low levels of physical activity. The mean percentage of work productivity loss due to caregiving was 22.9%. Greater work productivity loss was associated with greater number of caregiving hours, higher cancer stage, married status, and greater anxiety, depression, and burden related to financial problems, disrupted schedule, and health. Nurses should assess caregivers and provide health promotion interventions, which may ultimately reduce the economic impact of caregiving. [Copyright John Wiley and Sons, Ltd.]

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Consumer direction and choice in long-term care for older persons, including payments for informal care: how can it help improve care outcomes, employment and fiscal sustainability?

As the number of older persons in need of long-term care increases, efforts to support older persons remaining in their home are intensified in most OECD countries. In this context of ageing in place, there is a movement towards allowing more individual choice for older persons receiving publicly funded long-term care at home. Having more flexibility in terms of how to receive care can increase the older person’s self-determination and that of his/her informal care givers. Having a choice among alternative care providers can empower older persons as consumers and may help strengthen the role of households in the care-management process. Choice can also help address quality aspects that are difficult to quantify but easy to experience for users, such as the personal interaction between the older person and the care giver.

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An experimental study on the effectiveness of a mutual support group for family caregivers of a relative with dementia in mainland China

When caring for an older relative with dementia, family members experience considerable distress and burden. Literature reviews show that supportive group interventions for these caregivers have significant positive effects on improving their distress and quality of life, but not consistent and conclusive. Limited research is found in Asian populations. This study tested the effectiveness of a 12-session bi-weekly mutual support group program for Chinese family caregivers of a relative with dementia in Hong Kong, when compared with standard family support service. An experimental study with pre- and post-test, parallel groups design was conducted. A randomized sample of 78 family caregivers, 39 in each of the experimental and control groups, from one regional dementia care center participated in the study. A protocol was specifically designed by an advanced practice nurse to guide the mutual support group process and the facilitator and peer leader training, based on evidence from the literature on family support group intervention in Western countries. The results of ANOVA tests indicated that the mutual support group participants had significantly greater improvements in distress levels and quality of life than the control group. There were only mild changes in the demands for mental health services in both groups at post-test. These findings support the effectiveness of mutual support groups to offer psychosocial support to Chinese family caregivers in dementia care beyond routine community mental health care.

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Carers in the region: a profile of the East Midlands

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the East Midlands region. In 2001 there were 433,912 carers in the East Midlands region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carer’s health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the East Midlands region.

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When is a carer's employment at risk? Longitudinal analysis of unpaid care and employment in midlife in England

This article examines the thresholds at which provision of unpaid care affects employment in England. Previous research has shown that providing care for 20 or more hours a week has a negative effect on employment. The present article explores the impact of a lower threshold and asks whether provision of care for 10 or more hours a week has a negative effect on employment. The article focuses on women and men aged between 50 and State Pension Age (60 for women, 65 for men). The study uses data from the first four waves of the English Longitudinal Study of Ageing (ELSA), collected in 2002/2003, 2004/2005, 2006/2007 and 2008/2009. Across these waves, there are 17 123 people aged 50–59/64 years, of whom 9% provide unpaid care to an adult. Using logistic regression analysis of the longitudinal data, the study finds that employed women in their fifties who start providing care for <10 hours a week are significantly more likely to remain in employment one wave later than similar women who have not started to provide care. In contrast, employed women in their fifties who start providing care for 10 or more hours a week are significantly less likely to remain in employment one wave later than similar women who have not started to provide care. Employed men aged between 50 and State Pension Age, who provide care for 10 or more hours a week at the beginning of the period have a significantly reduced employment rate one wave later than those who do not provide care. The study therefore suggests that carers’ employment may be negatively affected when care is provided at a lower intensity than is generally estimated in England. This has important implications for local authorities, who have a duty to provide services to carers whose employment is at risk.

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Children and Families Act 2014: chapter 6

The Act makes provision about children, families, and people with special educational needs. Specifically, it covers: adoption and children looked after by local authorities; family justice (e.g. mediation); children and young people in England with special educational needs; childminding agencies; the Children's Commissioner; statutory rights to leave and pay; time off work for ante-natal care; and the right to request flexible working. Part 5 of the Act contains various provisions relating to the welfare of children, including giving children in care the choice to stay with their foster families until they turn 21, making young carers’ and parent carers’ rights to support from councils much clearer, reforming children’s residential care to make sure homes are safe and secure and a requirement on all state-funded schools (including academies) to provide free school lunches on request for all pupils in reception, year 1 and year 2.

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Informal care over time

The government’s strategy, Caring for carers, aims to support carers in their caring activities, sustain their other roles including paid employment, and improve their long-term financial security. This project explored these policy goals using existing data sets to inform service developments and the allocation of resources for supporting adult carers. The research also provides baseline findings at the national level which could be used to monitor the impact of the strategy and related policy initiatives.
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How do baby boomers' mobility patterns change with retirement?

Baby boomers will comprise a considerable share of tomorrow's older population. Previous research has indicated higher travel activity and car use amongst baby boomers than amongst older cohorts. However, little evidence exists on the effects of boomers' ageing on the transportation system. To analyse how retirement affects baby boomers' travel and the related future travel demand, we compared three groups, distinguished by employment status as ‘still working’, ‘early retirees’ and ‘recent retirees’, in a longitudinal setting. Data for 864 individuals were collected via standardised telephone interviews in 2009 and 2012. We find a clear tendency towards reducing the car use and mileage over time and as a consequence of retirement. Nevertheless, car use for leisure purposes increased after retirement. Whilst retirement had a bigger impact on men's than on women's car use, those women who continued working had a high car reliance that did not decline over time. This study suggests that retirement is a transition point associated with decreasing car use. Hence, the ageing of the population is likely to have a decreasing effect on transportation demand. However, informal care-giving, prolonged careers and atypical working life, boomer women's changing professional roles, and the emergence of leisure and consumption as major cultural and social frameworks of the third age are likely to make this transition different than observed in previous cohorts.

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Working across the interface of formal and informal care of older people

This chapter explores working partnerships with carers of older people and particularly carers in full or part-time employment who may have many stresses and conflicting demands in their lives. The legal and social context of caring is traced from The NHS and Community Care Act (DH, 1990) and subsequent care in the community initiatives. Another milestone was The National Strategy for Carers (DH, 1999a), though there has only recently been a government commitment to partnership with carers against very patchy previous provision. Six reasons are advanced for the relative powerlessness of carers compared to service providers. There are 5.2m carers in England and Wales and 1m of these providing over 50 hours of care weekly. There is a brief outline of the caring experience and three individual case studies. The National Strategy for Carers identified four rights for carers in maintaining their own health and lifestyles and how partnerships with service providers might operate, in addition to support services. [...]

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Women at the crossroads : a literature review of the mental health risks facing women in mid-life

This review focuses upon women aged 45-60: an under-researched subgroup of the adult female population. Women in mid-life occupy a unique position in the lifespan at the intersection of a number of age-related and lifelong pathways. The lives of these women can be distinguished from those of both older and younger women along a number of important dimensions including their family and working lives, economic situation, general health, and the complexity of their roles both inside and outside the home. Personal and economic changes are common at mid-life as are physical changes; all have particular and distinct implications for women’s emotional and psychological health. The aim of this review is to address a knowledge deficit. Though some evidence exists about the extent of psychological distress in women aged 45-60, far less has been gathered about the causes of such difficulties or the challenges to mental health associated with mid-life experience. The lifespan is routinely conceived as containing a number of discrete stages: women’s lives are characterised by experiences that have overlapping threads and meanings and these combine with age-related issues in ways that warrant focused attention. This review draws evidence from a range of sources to identify the key parameters of mid-life women’s lives. These include: the areas and types of risk to their mental health from a range of sources, the extent of psychological distress, and the ways in which research and policy could reduce the challenges that commonly face women in mid-life and alleviate or prevent mental ill health. It should be noted at the outset that the age group 45-60 years does not map perfectly on to the existing field of research: researchers and national statisticians punctuate the life span in whatever ways they see fit. So, although we have tried to locate research which matches the age span of interest, inevitably we also draw upon the findings of research which only offers a close approximation. 

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Women caring for disabled parents and other relatives: Implications for social workers in the health services

Caring for an ill or disabled relative is a life experience shared by many women. Based on data from a representative sample of women in Israel, this study examined the demographic, employment, and health characteristics of women caregivers, focusing on the extent of care provided and its effect on the caregiver's physical and mental health. Using the conceptual framework of caregiving-related stress, we compared women who care for a parent, and women who care for another relative. The study found more instrumental difficulties, which lead to greater burden, among women who care for a disabled relative who is not a parent. Furthermore, larger proportions of women caring for a disabled relative who is not a parent report depressive mood symptoms, poor health status, and the need for psychological counseling. The findings suggest that formal service providers, chiefly social workers, may better support women caregivers once they are aware of the needs arising from disparate contexts of care. 

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Young carers as social actors: coping strategies of children caring for ailing or ageing guardians in Western Kenya

There is a vast body of research on the impact of HIV/AIDS on children, but little which acknowledges the role of children in providing care and support for ailing parents or ageing guardians. There has been a tendency to downplay the active role and agency of young carers, with young carers often represented as victims of damaging circumstances that compromise their psychosocial well-being. To counter-balance this tendency, and to develop the critical trend that views children as social actors, we explore how young carers cope with challenging circumstances, often with skill and ingenuity, drawing on data collected in Western Kenya in 2007. Forty-eight young carers (aged 11–17) used photography and drawing to provide accounts of their coping strategies. They described 240 of the resulting photographs and drawings in writing. In addition, 34 individual interviews and 2 group discussions were conducted with children to explore the findings further and 10 individual interviews with local adults were conducted to elucidate the dynamics between adults and children. Our data revealed that young carers cope by mobilising social support, engaging in income generating activities and constructing positive social identities around their caring roles. We conclude that children's ability to cope is determined by the extent to which they are able to participate in their community and negotiate support from it.

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Family caregiver strategies to encourage older relatives with dementia to use social services

Aim: To elicit the strategies used by Japanese family caregivers in the community to encourage older relatives with dementia to use adult daycare and respite stays.

Background: Older adults with dementia often require adult daycare and respite stays for their family caregivers to gain respite from care-giving. However, persons with dementia often face difficulty in new environments and timely access to sufficient services may be difficult to achieve. Few studies have examined how family caregivers encourage their service use.

Design: A qualitative method.

Methods: Semi-structured interviews were conducted with 16 family caregivers who were caring for relatives with dementia at home between 2005–2007. Data were analysed qualitatively.

Results: Family caregivers used various strategies to encourage older relatives to use services, allowing the older adult to decide whether to use the service, yearning and searching for the least harmful service, tailoring the service to the older adult, persuading the older adult to use the service, conforming the older adult to the service and coercing the older adult to use the service. Different strategies were used depending on factors such as desperation in needing respite, willingness to do what is best for the older adult, confidence in taking care of the older adult and the anticipated response of the older adult to services.

Conclusion: Nurses should carefully assess caregivers' strategies in their attempts to encourage service use and should provide adequate assistance in accordance with those strategies.

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Carers in the region: a profile of the South West

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the South West region. In 2001 there were 492,451 carers in the South West region, which is 10% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the South West region.

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Depressive symptoms in older female carers of adults with intellectual disabilities

Background  This survey study aims to examine the prevalence and factors associated with depressive symptoms among primary older female family carers of adults with intellectual disabilities (ID).

Method  In total, 350 female family carers aged 55 and older took part and completed the interview in their homes. The survey package contained standardised scales to assess carer self-reported depressive symptoms, social support, caregiving burden and disease and health, as well as adult and carer sociodemographic information. Multiple linear regressions were used to identify the factors associated with high depressive symptoms in carers.

Results  Between 64% and 72% of these carers were classified as having high depressive symptoms. The factors associated with carer self-reported depressive symptoms were carer physical health, social support and caregiving burden; overall, the carer self-reported physical health was a stronger factor associated with depressive symptoms than their physical disease status. The level of the adult with ID's behavioural functioning and the carer age, marital status, employment status, education level and the family income level were not significantly associated with carer depressive symptoms.

Conclusions  The factors identified in this study as correlating with self-reported depressive symptoms suggest that researchers and mental health professionals should collaborate to help improve the physical health and social support networks of the most vulnerable older female family carers. This should reduce depressive symptoms directly among this high-risk group.

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Family policy, employment and gender-role attitudes: a comparative analysis of Russia and Sweden

In this article, we explore the interaction between female and male employment, parenting responsibilities and family policy in Russia and Sweden. The study is based first on indicators of public social services, assistance for families and labour force data; and second, on the ISSP modules on Family and Changing Gender Roles (years 1994, 2002). The results show that both Sweden and Russia facilitate the 'dual-earner' family model, but that Sweden places a greater emphasis on dual-caring and flexible work arrangements for women. The support for traditional gender roles was much higher and more uniform in Russia than in Sweden. The proportion of 'dual-earner' and female-led families was nevertheless higher in Russia than in Sweden, especially in 1994 when major restructuring in the social and economic sphere was occurring. The findings suggest that family policy is instrumental in facilitating female employment, but does not necessarily bring changes in gender-role attitudes.

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Does Formal Employment Reduce Informal Caregiving?

Using the Survey of Income and Program Participation, we examine the impact of formal employment on informal caregiving. We instrument for individual work hours with state unemployment rates. We find that, among women of prime caregiving ages (40–64 years), working 10% more hours per week reduces the probability of providing informal care by about 2 percentage points. The effects are stronger for more time‐intensive caregiving and if care recipients are household members. Our results imply that work‐promoting policies have the unintended consequence of reducing informal caregiving in an aging society. Copyright © 2015 John Wiley & Sons, Ltd.

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‘The sooner you can change their life course the better’: the time-framing of risks in relationship to being a young carer

In this article, we compare accounts given by young carers and specialist support workers about the riskiness of becoming a carer relatively early in life. We argue that since the mid-1990s, the policy response has problematised the comparatively early adoption of a caring role as a risk factor for future personal development. This temporal issue has become societally organised around concern about NEETs (young adults not in education, employment or training). Such a concern is predicated on cultural assumptions, now being undermined in response to economic crisis, about the existence of a critical age for transition to adulthood, successful navigation of which requires a time-limited period of personal freedom. Our findings suggest that, whereas support workers mostly see young caring in terms of risks to future prospects, young carers themselves identify not only current stresses, but also personal gains, from their experiences. Instead of categorising the timing of their caring as a source of risk, young carer respondents questioned service shortcomings which they felt made it harder for them to cope in the present, particularly inadequate social service support for relatives with disabilities and insensitivities in the education system. They did not see service providers as helping them to manage their futures. We locate this tension in risk social science debates about individualisation, transition to adulthood in late-modern society and risk management for those deemed vulnerable.

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A household perspective on access to health care in the context of HIV and disability: a qualitative case study from Malawi

Background: Equitable access to health care is a challenge in many low-income countries. The most vulnerable segments of any population face increased challenges, as their vulnerability amplifies problems of the general population. This implies a heavy burden on informal care-givers in their immediate and extended households. However, research falls short of explaining the particular challenges experienced by these individuals and households. To build an evidence base from the ground, we present a single case study to explore and understand the individual experience, to honour what is distinctive about the story, but also to use the individual story to raise questions about the larger context. Methods: We use a single qualitative case study approach to provide an in-depth, contextual and household perspective on barriers, facilitators, and consequences of care provided to persons with disability and HIV. Results: The results from this study emphasise the burden that caring for an HIV positive and disabled family member places on an already impoverished household, and the need for support, not just for the HIV positive and disabled person, but for the entire household. Conclusions Disability and HIV do not only affect the individual, but the whole household, immediate and extended. It is crucial to consider the interconnectedness of the challenges faced by an individual and a household. Issues of health (physical and mental), disability, employment, education, infrastructure (transport/terrain) and poverty are all related and interconnected, and should be addressed as a whole in order to secure equity in health.

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'Ageing-in-place': Frontline experiences of intergenerational family carers of people with dementia

The success of 'ageing-in-place' aged care policy in Australia relies heavily on the unpaid work of informal carers. While there is a wealth of research regarding informal carers more generally, we know relatively little about the experiences of the 'sandwich generation': Adult children (mainly daughters) who provide care for a parent while often juggling paid work and the care of their own children or grandchildren. In this paper I undertake a critical analysis of 'ageing-in-place' policy through the lens of 'sandwich generation' carers of people with dementia. Drawing from a composite case study, I argue that these carers are located at the interstices of powerful discourses such as 'individualisation' and 'care' and explore how the everyday practice of care is negotiated within these spaces. Inhabiting these spaces can be costly for carers and we need to consider how policies can better support intergenerational carers if 'ageing-in-place' is to be sustainable.

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Working carers of older adults

Juggling work and care presents particular challenges to carers and employers. Employers are increasingly under pressure, both from within organizations and from recent government legislation and policy, to develop family-friendly policies to support informal carers in the workplace. Yet existing ‘family-friendly’ schemes and services are still primarily designed for working parents of young children and rarely address the needs of employees who care for older or disabled adults. This paper reports on a study which investigated how working carers and managers in two public sector organizations — a Social Services Department (SSD) and a National Health Service (NHS) Trust — combined their work and caring responsibilities. A multi-method approach was adopted consisting of five phases. First, a profile of the two organizations was established, followed by a short screening questionnaire to all employees to identify who was caring for an older adult over the age of 60. Third, a lengthier postal survey was sent to the 365 carers who had indicated a willingness to participate further. In the fourth and fifth phases, carers and managers were interviewed in depth about their experiences. This paper reports briefly on the survey, but then concentrates in particular on what was said in the interviews about what helps and hinders working carers of older adults. Despite the existence of policies to support carers, our findings suggest that these were far less important than informal support from colleagues and a sympathetic manager in the workplace. Commuting distance between work, home and the older person also posed difficulties for carers, along with inflexible schedules and work overload. Employers are urged to explore these issues further if they are serious about recruiting and retaining employees, and developing the work – life balance agenda to meet the needs of those caring for older and disabled adults.

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Carers in the region: a profile of Yorkshire and the Humber

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the Yorkshire and the Humber region. In 2001 there were 516,546 carers in the Yorkshire and the Humber region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the Yorkshire and the Humber region.

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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.

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Taking the job home

Looks at the issues facing both employers and social worker/carers. Caring for adults.

A comparison of working versus nonworking family caregivers of stroke survivors

Because of the trend toward shorter hospital stays, family caregivers of stroke survivors are expected to accept more responsibility for helping survivors during the subacute recovery process. The caregiver role is associated with negative health outcomes, yet existing literature differs on whether work status is a contributor. The purpose of this secondary analysis was to examine how caregiving affects employment and to compare characteristics of working and nonworking caregivers. Baseline data of family caregivers (N = 132) caring for stroke survivors 3-9 months after stroke and enrolled in a national multisite study were used. Caregiver characteristics of physical health, depression, fatigue, family functioning, and family conflict were measured. A total of 36% of caregivers reduced their work hours, resigned, or retired from their jobs to care for their family member. A larger proportion (n= 25, 66%) of minority caregivers were employed (full time or part time) compared to white caregivers (n = 43, 46%). Caregivers employed full time were younger and in better physical health but were at higher risk for depressive symptoms than nonworking caregivers. Family function and conflict were similar between the groups, but working caregivers received more assistance from other family members. Healthcare professionals and employers can use these findings to assist them with recognizing the needs of employed caregivers and offering support measures to facilitate their dual role.

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The effect of unpaid caregiving intensity on labour force participation: Results from a multinomial endogenous treatment model

It is well acknowledged that the intensity of caregiving affects the labour force participation of caregivers. The literature so far has not, however, been able to control effectively for the endogeneity of caregiving intensity. This paper contributes by dealing with the endogeneity of unpaid caregiving intensity when examining its impact on the labour force participation of caregivers. We distinguish between care provided to people who cohabit with the care recipient and care provided to recipients who reside elsewhere, as well as between primary and secondary caring roles. We address the endogeneity of selection in various care intensity roles via an instrumental variables approach, using the health status of potential care recipients as instruments. Data from wave 8 of the Household Income and Labour Dynamics in Australia survey which was undertaken in 2008 are used. We focus on a sample of 7845 working age males and females. Ruling out the endogeneity of any caregiving intensity role, we find that caregiving has a significant deterrent effect on caregivers' employment. This deterrent effect however is concentrated among those who identify as the main caregiver and the result appears to be the same irrespective of gender. Providing care as the main caregiver reduces the probability of employment by approximately 12 percentage points for both males and females, regardless of whether or not the caregivers cohabit with the care recipients. By contrast, we find no statistically significant impact of providing care as a secondary caregiver on the employment probabilities of either males or females. These results are germane to the development of policies that may affect informal caregiving and, thereby, the labour force decisions of carers.

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Making it real for carers

Making it Real for Carers explores what each Making it Real theme means to carers and what this might look like in practice. It has been coproduced with carers and organisations including the Carers Trust and ADASS following a series of workshops across England. 

The template below provides a guide to the approach that could be taken when looking at what's working and what needs improving in relation to Making it Real for Carers. Many organisations will have their own business planning processes and frameworks and this can be used as a checklist to inform those.

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Employment and Informal Care: Sustaining Paid Work and Caregiving in Community and Home-based Care

Informal care provides the often hidden foundations of policies promoting care in the community and Ageing in Place. This paper examines the current impasse concerning those who are employed and seek to provide care, canvassing current and future possibilities for finding a way through the existing conflict between sustaining employment and providing informal care in the home. Focusing on the issues that emerge regarding support of older (aged) care recipients, the paper first considers the demographic, economic and democratic and governmental policy causes of the current problems. It then examines the emerging care gap expressed through the joint crisis of informal and formal care. The final section considers the solutions proposed to help re-embed care in the societies of the 21 century. These include developments related to the workplace and employment, as well as solutions concerned with providing extra services, expanding the care workforce, paying family caregivers and using technology. 

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Canadian Alzheimer's disease caregiver survey: baby-boomer caregivers and burden of care

Objective: Alzheimer's disease (AD) burdens not only the person, but also the person's caregiver(s). This burden has been linked to negative health effects for caregivers. To that end, a survey of Canadian caregivers of persons with AD/other dementias was conducted to investigate the social, physical, psychological and financial impact of AD and/or dementia-related conditions on caregivers' quality of life.

Methods: A web-based survey, the Canadian Alzheimer's Disease Caregiver survey, was made available through the Canadian Alzheimer's Society website and 50plus.com, an internet portal for baby boomers (BB) (people aged 50 years or older), as well as through HarrisDecima Research's e-Vox panel. A total of 398 individuals completed the survey between 15 September and 5 November 2006.

Results: Of the 398 total respondents, 221 were identified as baby boomers who provided care to an individual with AD/dementia. Respondents identified several areas of burden of care. These included negative effects on emotional health (such as increased depression, more stress and greater fatigue), financial costs and a need to change a working situation (e.g. by retiring early, reducing work hours or refusing a promotion).

Conclusion:Caregivers of persons with AD/related dementia face important social, physical, psychological and financial pressures. These negatively affect the quality of life of caregivers with a significant increased burden being placed on live-in caregivers versus caregivers who do not co-reside with their care recipients. Interventions that address these pressures will not only improve the health and well-being of caregivers, but likely also the care of persons with AD/dementia. Copyright © 2009 John Wiley & Sons, Ltd.

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The meanings of 'culture' in health and social care: a case study of the combined trust in Somerset

On the 1st of April 1999 Somerset Health Authority and Somerset County Council established a Joint Commissioning Board (JCB) to commission mental health services. Simultaneously, the Somerset Partnerships Health and Social Care NHS Trust was set-up as a combined health and social care services provider; for the first time in England, the majority of social services mental health staff transferred their employment to this Trust. The JCB commissioned an evaluation of the impact of these innovations on users and carers, staff and senior officers and members in the organisations concerned. In the course of the research, one concept frequently recurred as a source of both optimism and concern: 'culture'. However, the meanings attributed to this term varied significantly between stakeholders. After summarising the methodology and the results to date of the evaluation, this paper briefly reviews the conceptions of culture in the literature on organisations, and introduces a taxonomy for discussing culture. That taxonomy is then deployed to explore the ways in which the notion of 'culture' is being applied to and within the combined Trust in Somerset, and the implications of those applications for local practice and national policy around partnership.

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Carers

This article uses recent research and practice guidance to explore the implications of the Carers (Equal Opportunities) Act 2004 for professionals who work with carers of working age.

Carer assessment : continuing tensions and dilemmas for social care practice

Since the early 1990s, UK social care policy has committed to supporting carers. Legislation (England and Wales) over this time period has recognised the importance of separate carer assessments that take into account an individual's ability and willingness to care. This paper considers carer assessment from the perspective of social care practitioners. It reports on qualitative data from a carer research programme that spans over 20 years (1993 to present) and includes 383 in-depth interviews with social care practitioners across England and Wales. Offering unique longitudinal insights, we identify some persistent tensions associated with the translation of UK carer assessment policy into social care practice. We explore practitioners' long-standing ambivalence towards carer assessment and their reluctance to evidence carer need via a separate assessment process. Deficits relating to the conduct of carer assessment are identified. For example, the reliance on structured, problem-focused assessment protocols that restrict discussions to the personal care aspects of caring and fail to capture the complex, diverse lives that carers lead. Carer assessments do not reflect the reciprocal nature of many caring relationships, as a one-way direction of care is assumed. They do not take into account the broader support network of individuals who may be involved in helping someone with complex care needs. Carer willingness to care continues to be taken for granted and planning for the future is a significant gap in carer assessment practice. The proposed changes to the social care systems across England and Wales provide a timely opportunity to review the process and conduct of carer assessment. Policy guidance needs to clarify the links between service user and carer assessments and the way these align within broader assessment and care management frameworks. Assessment tools that encourage a narrative approach to carer assessment and capture the affective aspects of care-giving could benefit future practice.

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Can tax credits work for carers

Examines whether carers could be successfully brought to the scope of tax credit schemes. The article explains how tax credits work, and looks at the advantages and disadvantages of providing tax credits for carers.

Effects of gender and employment status on support provided to caregivers

This study was designed to examine the impact of caregiver gender and employment status on laypeople's willingness to support the caregiver. A total of 216 undergraduates were randomly assigned to read 1 of 4 vignettes that described an individual caring for his or her physically ill spouse. Caregiver gender (man or woman) and employment status (full-time employment or retirement) were manipulated. Overall, female participants reported that they would provide higher levels of support than did male participants, particularly with regard to emotional support. Male participants were more likely than female participants to attend to caregiver employment status when rating their level of instrumental support provision. Gender of the caregiver did not exert an effect. Findings are interpreted in light of gender norms that allocate care of sick family members to women. (Original abstract)

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Informal Caregiving and Retirement Timing among Men and Women: Gender and Caregiving Relationships in Late Midlife

Informal caregiving, or the provision of unpaid, voluntary care to elderly or disabled family and friends, is an increasingly common experience for both men and women in late midlife. The authors examine the ways in which informal caregiving influences the transition to retirement and how this relationship is shaped by gender. Our data are 763 pension-eligible men and women in the 1994-1995 Cornell Retirement and Well-Being Study. Results from discrete-time event history analyses indicate that certain types of caregiving shape the timing of retirement but that the association depends on the relationship between caregiver and care recipient and is fundamentally moderated by gender. For example, wives caring for their husbands have retirement odds 5 times greater than women who are not caregivers, whereas husbands caring for their wives are substantially slower to retire. Our evidence suggests that in this sample, caregiving responsibilities lead to increased sex role-typical employment behavior in late midlife.

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Caring on the breadline: the financial implications of caring: executive summary

This report presents findings of a questionnaire-based survey of the financial position of carers in the UK conducted by the Carers National Association (CNA), the starting point of which was that government carers strategies published recently for England and Scotland have omitted to address carers' financial problems. The survey suggested that a large proportion of carers providing substantial care are faced with financial hardship. The report presents a detailed account of the effects of caring on income and finances, the diversity of needs according to the age, ethnic background, and benefit status of carers, and the changes which carers would perceive to be most beneficial. A concluding chapter sets out the CNA's recommendations for reducing poverty and social exclusion among carers, and promoting paid employment and recognition of the value of the work of carers. An appendix contains the questionnaire. References cited at the end of each chapter.

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Group of support and mutual help for informal carers of dependent elderly people

Bringing into operation a group of support and mutual help for informal carers of dependent elderly people at 'Vargas' Health Centre is a necessity that cant be postponed any longer.The project which we want to carry out takes into account the welfare of both the carer and the elderly and consist of supporting the carers by listening to them, by raising their awareness about the importance of the work they do, both for the relative they look after and for society as a whole, and by teaching them to look after themselves during the caring period.

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Training for Jobcentre Plus: meeting the needs of carers

This article discusses the aims and objectives of the new working-age agency, Jobcentre Plus, and the challenges faced by staff in the former Employment Service and Benefits Agency in delivering on its vision of a work-focused service designed to reach 'hard to help' groups. It looks at the training needs of staff involved in the new service, and how the Jobcentre Plus Stakeholder Forum contributed to identifying them. It considers some of the early successes and problems in this process, and then goes on to explore the needs of one particular client group, carers. Finally, it describes an innovative partnership project, led by Carers UK, that will support Jobcentre Plus in meeting those needs.

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Changes in daily occupations and the meaning of work for three women caring for relatives post-stroke

Study aim: This qualitative study explored how some working Austrians experienced and coped with changes in their daily occupations after becoming informal carers of persons who had had a stroke. The study provides insights into the working carers' occupational experiences and strategies during a period of pronounced life changes. Methods: Three participants, who were employed in full- or part-time work, as well as being informal carers of persons who had had a stroke, were interviewed on two occasions. The data from these interviews were analysed using Interpretative Phenomenological Analyses. Results: Carers found themselves in an ongoing process, ranging from the disruption of daily occupations to their eventual restructure. First, the stroke led to involuntary changes in the carers' daily life, which resulted in challenges in their own, and in shared, occupations. Second, carers actively changed their values and performance of occupations, which appeared to be a strategy to shape their well-being. Paid work was found to be a stabilizing and balancing occupation, which contributed to coping and the well-being of carers. Conclusions:The authors' findings demonstrate the benefits of paid work and engagement in meaningful occupation for the carers' well-being. These results should encourage occupational therapists to be sensitive to the complexity of the lives of working informal carers.

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The impact of caring for adults with intellectual disability on the quality of life of parents

Background Because of an increase in life expectancy and de-institutionalisation, many adults with intellectual disability (ID) live with and are cared for by their parents throughout their adult lives. Because of caring demands, the quality of life (QOL) of parents may be affected. The study explored the impact of caring for an adult with ID on the QOL of parents. Methods Participants were 12 parents who were the full-time carers of an adult with ID. Participants were interviewed about the effect of caring on their QOL. Interviews were analysed thematically. Results Caring had a positive impact on QOL by enabling participants to develop relationships and receive support, participate in leisure activities, achieve a sense of personal satisfaction and enable a more positive appraisal of their lives. Caring had a negative impact on participants' QOL by restricting their relationships, leisure activities and employment opportunities. Caring was also associated with financial insecurity, frustrations at the service system and fear of what the future held for their offspring. Conclusions  Caring for an adult with ID had both positive and negative effects on parents' QOL. Improving services and service delivery, including the provision of residential services and respite, would address many of the issues that were reported to have a negative impact on parents' QOL.

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Mixed blessings: long-term care benefits in Germany

This chapter opens with the movement to long-term care benefits in Germany in 1994 with a two-tiered system of employment-related, contribution-based long-term care insurance (LTCI) and a last resort of tax-funded social assistance. The goals were to reduce the financial burden on the states and municipalities, lessen poverty for care clients, increase long-term care services, expand home- and community-based services and support informal caring, and to prevent or delay institutionalisation. The chapter looks at the methods in which the benefit design in the German system affects employment, and examines the social long-term care insurance scheme. A main characteristic is the choice of cash benefits and benefits in-kind, distinguishing the German LTCI from the long-term care systems in most other countries. The mixed-benefit design of the system considers the institutional framework, funding, beneficiaries and eligibility criteria, the benefits and the special features of the German system, which are an [...]

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Work - life imbalance: Informal care and paid employment in the UK

In the United Kingdom, informal carers look after relatives or friends who need extra support because of age, physical or learning disability, or illness. The burden of informal care work falls on women, who often care for longer hours and durations than men. This paper considers the impact that caring responsibilities have on women's employment. The research is based on a dedicated questionnaire and in-depth interviews with informal caregivers. The results suggest that carers' employment is affected by the duration of a caring episode, financial considerations, the needs of the person they care for, carers' beliefs about the compatibility of informal care and paid work, and employers' willingness to accommodate carers' needs. Overall, the research confirms that informal carers continue to face difficulties when they try to combine employment and care in spite of recent policy initiatives designed to help them. 

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Weekly Debates Scotland

This publication provides an overview of debates and reports on education, services for children and training in Scotland tabled in the House of Commons and House of Lords for the period March 3 to 7, 2014. Member of Parliament Linda Fabiani questions Minister for Youth Employment Angela Constance on various issues including the publication of the guidance on the administration of education maintenance allowance and the care.fair.share campaign for young carers.

Work, gender, and stress in family cancer caregiving

Goals of work: The objective of this study was to examine whether employment status and gender was associated with family cancer caregivers’ reports of stress and well-being.

Materials and methods: Using a correlational, cross-sectional survey design, this study included 183 primary caregivers (i.e., those individuals who provided the most help to persons with cancer). Caregivers were recruited in a radiation oncology cancer clinic and were administered detailed interviews that collected a wide range of information about the stress process.

Results: Bivariate and multivariable analyses suggested a number of differences between various classifications of employment status and gender. In particular, women who worked appeared more likely to provide instrumental care to the person with cancer when compared to men who did or did not work. In addition, women who worked were more likely to report feelings of exhaustion and fatigue when compared to men who worked.

Conclusions: The results emphasize the need to consider the context of cancer care when analyzing the stress process. When faced with employment, women appear particularly at risk for emotional distress and greater perceived care demands. Utilizing tools that identify cancer caregivers at risk based on work, gender, or other contextual variables may inform the development and targeting of clinical interventions for this population.

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Supporting working carers: do policies in England and The Netherlands reflect 'doulia rights'?

Governments of advanced European welfare states with ageing populations are struggling to reconcile what seem to be conflicting policies. On the one hand, they are trying to increase the labour market participation of women and older workers. On the other hand, they are making more demands on people to care for disabled, chronically ill and frail older relatives and friends. Those caregivers are more likely to be women and older people. In this paper, we present the policies and experiences of carers from two countries that differ in type of welfare state, health and social care system and labour market context: England and The Netherlands. The aim was to compare English and Dutch policy measures for carers and examine their impact with evidence from two studies of people who combine work and care. The analysis is informed by the theoretical concepts of ‘doulia’ (whereby the state, employers and other sections of society reciprocate carers and other dependency workers for their unpaid caregiving) and ‘doulia rights’ (a carer's right to provide care without the risk of impoverishment). The evidence suggests that English and Dutch carers’ policies have different strengths and weaknesses, but in neither country do they show strong commitment to the right to doulia.

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What kinds of jobs help carers combine care and employment?

This paper provides information about what job characteristics promote or inhibit maintaining employment while caring. Using a nationally representative longitudinal data set—the Household Income and Labour Dynamics in Australia (HILDA) survey—the paper traces the effects of the onset of care on labour force participation. This study used multivariate techniques to analyse five clusters of influences that might affect carer employment: the intensity of care responsibilities; the employees’ own characteristics; the characteristics of their employment; their workplace arrangements; and the employee’s rating of the stress, satisfaction and security associated with their job. The results showed that moderate to intensive caring responsibilities militate against maintaining labour force participation in the face of caring responsibility. Working as a casual employee, in a job without supervisory responsibilities, in smaller firms, with poor leave arrangements, no flexibility in hours and low job security all decrease the probability that carers remain in employment.

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Selling social work by the pound? The pros and cons of agency care management

This article considers the experiences of a small group of agency care managers (n=23) working in London and the north of England. It was discovered that employment for occupationally migrant care managers can provide access to a potentially rich source of knowledge and skills, as well as a diverse and sometimes stimulating form of irregular employment. However, it was also discovered that work intensification, job insecurity and limited time spent with users and carers were common, and this further intensified the deskilling and lack of discretion which is common for many care managers. It is concluded that the increase in agencies that supply care managers to social services departments (among other sectors of social care) is further evidence of the ongoing privatisation of state social work and there are important implications for social workers, users and their informal carers.

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Women as Workers and as Carers under Communism and After: The Case of Bulgaria

This paper reviews the work-family policy of Bulgaria before and after the transition. Before the transition the family policy was one of earner–carer where women were given support to combine work-force participation with childcare and men were at least encouraged to help with carework. After the transition women's access to help with carework became so limited that the family policy, by default, became one of dual earner, but with extremely high levels of unemployment. A survey of 349 women by the Varna Employment Office indicates how devastating the loss of employment was during the transition. Today policies that support family caregiving still exist on paper but are not enforced. This is due, in part, to the lack of organized broad-based women's groups. Such organizations would be necessary for women to effectively claim the rights and entitlements to caregiving support. But there is continuing pressure from the International Monetary Fund (IMF) and others to eliminate any state support for caregiving.

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Working lives: the role of day centres in supporting people with learning disabilities into employment

Summarises a research project jointly commissioned by the Department for Work and Pensions and the Department of Health, which explored how day centres are addressing employment, the relationships between day centres and employment related organisations, and the views and experiences of those who attend day centres and their carers. The research was undertaken to understand current provision and how employment opportunities for people with learning disabilities can be extended. The research used qualitative interviews with managers of day centres, organisations that help people into employment, people with learning disabilities in day centres and family and professional carers conducted in 9 local authorities across England.

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Supporting carers to stay in paid employment

This was published under the 2010 to 2015 Conservative and Liberal Democrat coalition government

Ministers have launched a series of pilots exploring ways to help carers balance work with their caring responsibilities.

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The Effects of Incidence of Care Needs in Households on Employment, Subjective Health, and Life Satisfaction among Middle-aged Family Members

In this study, based on longitudinal data, we investigate whether Japanese middle-aged men and women become less likely to have a job and whether their sense of well-being decreases when they have a family member who needs care. We find a consistent negative impact of having a family member who needs care on employment, but no impact on subjective health and life satisfaction. Further, the differences-in-differences (DID) estimation, based on both unmatched and matched data, shows that the Long-Term Care Insurance (LTCI) introduced in 2000 did not mitigate the adverse impact on the probability of being employed.

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Supporting employees who are caring for someone with dementia

Demographic change is demanding new responses from our society, workplaces, public services and family life as our population and workforce age. As the number of working age people caring for older loved ones with health conditions such as dementia rises, the impact on people’s ability to work is becoming an increasingly critical issue for employers. Half the UK’s 6.5 million carers are juggling paid work alongside caring. Within the total population of carers, the number of people caring for loved ones with dementia is rising and is set to reach 850,000 by the end of the decade.1 Research has shown full-time working carers are most likely to care for a loved one with dementia.2 The employers and carers we work with are telling us the same story as the statistics – that dementia and the impact on employees of caring is a key issue for workforce retention, recruitment and resilience. Very often the need to care for an elderly parent comes at peak career age. Without the right support, the challenges of combining such caring with work (often also with other family responsibilities) can quickly become too difficult to manage. Employees with valuable experience and skills will then either leave their jobs or struggle to cope in the workplace. From earlier research we already know that 1 in 6 carers leave work or reduce their hours to care.3 The experiences from carers and employers captured in this research show that the current support needs of people caring for loved ones with dementia are not being met, especially by care and support services. Problems of lack of knowledge about how and where to get help, lack of timely and relevant information and support and lack of appropriate, quality and affordable care services are raised consistently in the surveys. This lack of support is compounded by a perceived stigma around dementia, often reported by carers, which explains why it remains such a hidden issue in so many workplaces. The often challenging stages of dementia as it progresses also cause particular stresses and strains for carers and their families when unsupported with information and practical help. These gaps in care and support for people with dementia are taking a toll on families’ health, finances and careers. This must now be addressed urgently in policy and practice covering dementia services, wider care services and support for carers of loved ones with dementia, including the impact of such caring, if unsupported, on people’s ability to work. Quality and affordability of care for older and disabled people, including those with dementia, is as much an issue of economic participation as childcare. From carers’ and employers’ experiences in this research, we also see what the right support for people with dementia and their families should look like – good quality, affordable and appropriate care services, health and social care professionals with the right skills and training, supportive workplaces and communities, and family carers who are supported to care. Carers UK is committed to working with others to help make this happen.

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More than a job: working carers: evidence from the 2001 census

In the future most people's lives will include at least one episode of unpaid caring. Find out the facts behind the people who balance their job with caring for a relative or friend.

  • Already, 2.5 million people in England and Wales combine paid work with unpaid caring for a partner, relative or friend who is ill, frail or has a disability.

  • 1.5 million carers work full-time, and of those, 140,000 care for 50+ hours per week.

  • 90% of working carers are aged 30+ - in their prime employment years.

  • Working carers pay a heavy penalty in terms of their own health. Those with heavy caring responsibilities are two to three times more likely than workers without caring responsibilities to be in poor health.

  • Men and women who care for 20+ hours a week are much less likely to be in higher level jobs.

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The commodification of care: the Italian way

Italy has one of the highest percentages of older people in Europe, a trend likely to increase faster than elsewhere alongside greater disability. Family support is also weaker through demographic developments and greater female participation in the labour market, and public policies for frail older people are underdeveloped with wide regional variations. The national scheme, the indemnita di accompagnamento (companion payment), is paid to approximately 7.3% of severely disabled people over 65 based on assessment of need. Private care is much greater than public provision of personal services, mainly supplied by individual workers rather than organisations. 'Routed wages' comprise the companion payment of which there are further details relating to funding, target, admittance, purpose and amount, and also local payments for care supplied by regional authorities and municipalities, with the same details listed. Local payments are increasingly widespread, mainly in the north and centre of Italy. There are several [...]

Carers and the digital divide: factors affecting Internet use among carers in the UK

This paper presents data from a cross-sectional survey of 3014 adult carers, examining use of the Internet and factors associated with it. Carers recruited from the databases of three local authorities and other carer organisations within their geographical boundaries and that of Carers UK, a national carers organisation, were sent a postal questionnaire (response rate: 40%). A comparison of our data with national data on carers suggests some under-representation of men and younger adult carers and some over-representation of those who had been caring for long periods and those with substantial caring responsibilities. Two measures of Internet use were used and are presented in this analysis: previous use (ever used vs never previously used) and frequency (less than once a week vs once a week or more). Bivariate analyses identified patterns of Internet use and socio-demographic and socio-economic factors and caring circumstances associated with them. Factors significantly associated with each measure of Internet use were entered into direct logistic regression analyses to identify factors significantly associated with each measure. Half (50%) of all carers had previously used the Internet. Of this group, 61% had used it once a week or more frequently. Factors significantly associated with having previously used the Internet were carer's age, employment status, housing tenure and number of hours per week they spent caring. Frequency of Internet use was significantly associated with carer's age, sex, employment status and number of hours spent caring. Our study suggests that a significant number of carers may not currently be Internet users and that age, gender, socio-economic status and caring responsibilities shape Internet use in particular ways. Given the targets set by government for the development of online services, it is important to address the digital divide among carers and to continue to develop other services and information systems to meet the needs of those who do not access the Internet.

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Choice and long-term care in OECD countries: Care outcomes, employment and fiscal sustainability

As the number of older people in need of long-term care increases, efforts to support older people remaining in their home are intensified in most OECD countries. In this context, there is a movement towards allowing more individual choice for older people receiving publicly funded long-term care at home. Having more flexibility in terms of how to receive care can increase the older person's self-determination and that of his/her informal caregivers. Having a choice among alternative care providers can empower older people as consumers and may help strengthen the role of households in the care-management process. The main aims of this article are (i) to categorise and analyse different types of arrangements allowing home care users more choice and map the prevalence of such arrangements in OECD countries, (ii) to give an overview of some country-specific outcomes in terms of care quality for care recipients, and (iii) to discuss some implications for employment and fiscal sustainability.

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The health consequences of multiple roles at older ages in the UK

Increasing proportions of men and women are combining family (including care-giving) and work responsibilities in later life; however, the relationship between multiple role commitments and health at older ages remains unclear. Employing data from the longitudinal Retirement Survey (1988–1989 and 1994), the present authors applied logistic regression models to investigate the relationship between multiple role occupancy (1) cross-sectionally in 1988–1989 and health status in 1994; (2) retrospectively over the respondent's lifetime up to 1988–1989 and health outcomes in 1988–1989; and (3) retrospectively between 1988–1989 and 1994, and health status in 1994. The health outcomes considered were (1) general health status, (2) functional ability and (3) severity of disability category. Overall, simultaneous role occupancy (e.g. care-giving and employment) at older ages does not appear to be associated with poor health. The authors report a positive association between employment and health, as expected. There were mixed results concerning the association between care-giving and health. Where adverse health outcomes were found, the parental role, alone or in combination with other roles, was most frequently related to poor health. Thus, for a nationally representative sample of mid-life men and women, the combination of care-giving with other family and work roles appears to have few negative health consequences. Further research is needed on whether continued parental demands in mid-life have a negative impact on health.

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A Social Contract?

Carers have greater risk of ill health and unemployment according to the latest comprehensive research for Carers UK. Sue Yeandle outlines what reforms are needed. [Introduction]

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360 degrees of care

Research has demonstrated the benefits of telecare. It helps those with long-term needs live more independent lives, improves well-being, and enhances the quality of life. Yet little attention has been focused on the impact of telecare on unpaid carers who look after relatives with long-term care needs. This article examines the evidence from “A Weight Off My Mind: exploring the impact and potential benefits of telecare for unpaid carers”, and the ways in which telecare has impacted on carers, and how it has improved their quality of life. The potential benefit for carers were identified as: reducing pressure on carers; supporting carers in their supporting role; enabling carers to get a better night’s sleep; and giving carers peace of mind about the safety and well-being of the person being cared for. Telecare has also been instrumental in enabling carers to remain in paid employment, thereby maintaining family stability. Finally, telecare also had a positive impact on the relationship with the person [...]

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Employment status, social ties, and caregivers’ mental health

The purpose of this study of mid-life and older women was to assess the relation between informal care provision and depressive symptoms, taking into account concurrent demands on women's time (including multiple caregiving roles and employment outside the home) as well as participants’ access to potentially supportive social ties.

This cross-sectional study included women ages 46–71, free from major disease, who provided complete health and social information in the 1992 Nurses’ Health Study follow-up survey (n=61,383). In logistic regression models predicting depressive symptoms, we examined the interaction between employment outside the home and informal care provision for a disabled or ill spouse or parent. We also investigated level of social ties, measured with the Berkman–Syme Social Network Index, as a potential modifier of the association between informal care provision and depressive symptoms.

In all analyses, higher weekly time commitment to informal care for a spouse or parent was associated with increased risk of depressive symptoms. This relationship persisted whether women were not employed outside the home, were employed full-time, or were employed part-time. Higher weekly time commitment to informal care provision was associated with increased risk of depressive symptoms whether women were socially integrated or socially isolated. However, both informal care provision and social ties were potent independent correlates of depressive symptoms. Therefore, women who reported high spousal care time commitment and few social ties experienced a dramatic elevation in depressive symptoms, compared to women with no spousal care responsibilities and many social ties (OR for depressive symptoms=11.8; 95% CI 4.8, 28.9). We observed the same pattern among socially isolated women who cared for their parent(s) many hours per week, but the association was not as strong (OR for depressive symptoms=6.5; 95% CI 3.4, 12.7). In this cross-sectional study, employment status did not seem to confer additional mental health risk or benefit to informal caregivers, while access to extensive social ties was associated with more favorable caregiver health outcomes.

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Carers in the region: a profile of the East of England

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the East of England region. In 2001 there were 517,877 carers in the East of England region, which is 10% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the East of England region.

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Patients' and carers' views on dementia workforce skills

Purpose – Through consultation with people living with dementia and carers, this paper aims to identify skills that patients and carers feel need to be developed in the workforce. This work is part of a project to develop competencies for the West Midlands dementia workforce.

Design/methodology/approach – People living with a dementia and carers were contacted through cafés, a carers' group and memory group, and two people contributed interviews to the analysis. All materials were analysed qualitatively using thematic analysis.

Findings – Feedback was received from 69 individuals. In total, six major themes were identified: knowledge about dementia, person centred care, communication, relationships, support and helping people engage in activities.

Originality/value – It is argued that people living with dementia and carers bring unique and valuable perspectives to an analysis of the skills of the dementia workforce, which grounds the required skills in the relationship between the worker and the person and family they are working with. This different emphasis needs to be considered and addressed throughout dementia training and education.

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Gender restructuring, employment, and caring

In market capitalism, the tension between the demands of employment and the requirement for caring has, historically, largely been met by the domestication of women via the “male breadwinner” model of employment and family. However, the rising level of women's employment has destabilized this arrangement. In this article we evaluate a range of prescriptive responses to this situation: rightist, center-leftist, and feminist. To varying degrees, “family-friendly” state welfare policies have attempted to grapple with the resolution of the employment/caring conundrum. Nevertheless, such policies are called into question by increasing pressures to deregulate the market. At a personal level, individuals in a competitive labor market find it difficult to resist organizational demands. These issues will be explored and developed drawing upon evidence from a comparative study of male and female doctors and bank managers in Britain, France, and Norway.

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Citizenship, migration and the value of care in the European Union

This paper examines the relationship between care and mobility. It does so within the specific context of intra‐EU migration and the development of European citizenship. Citizenship of the Union bestows valuable social rights on mobile community nationals. Entitlement under the provisions is not, however, universal but conditional and privileges those in paid work. The paper considers the implications of this emphasis on paid work in two related respects: firstly, the impact on those people who move as part of the ‘male breadwinning family’ but are not engaged in paid work (the partners and families of workers); and secondly those community citizens whose migration decisions are shaped by the need to provide unpaid care to family members. Drawing on empirical research with migrant families, the paper concludes that the concept of work in Community law places those people who are not engaged in paid work (and family carers in particular) in a highly vulnerable and dependent position. Furthermore, the assumption of fixed and predictable dependency relationships within migrant families that underpins the law (and to some degree migration theory) fails to take account of the fluid and complex nature of dependency and caring relationships over the life‐course.

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Statement on policy and practice for adults with a learning disability

All Wales People First has been actively involved in preparing this Statement on Policy and Practice for Adults with a Learning Disability. This has been a welcome opportunity for people with learning disabilities to get directly involved in policy making. We were able to give our very valuable viewpoint which reflects the desires, hopes, dreams, wants and needs of people with learning disabilities. Our involvement has come about through our membership of the Learning Disability Implementation Advisory Group that was set up by the Welsh Assembly Government following its response to the Fulfilling the Promises report. Many different groups, including parents, carers, and health, social services and education professionals, have been involved in producing this statement. It is a vision for everyone involved with learning disability. The Statement on Policy and Practice will help to make it more possible for people with learning disabilities to become included in community living and have more opportunities to develop our own lifestyles. We want to build bridges between us and the world out there and we see this as a two way process. We want people to understand us better and value us. We can make a valuable contribution to the community and we can help people in the community to recognise us as valued citizens. Making these links, would make the community safer for all

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Time-bound opportunity costs of informal care: Consequences for access to professional care, caregiver support, and labour supply estimates

The opportunity costs associated with the provision of informal care are usually estimated based on the reduced potential of the caregiver to partake in paid work (both in terms of whether they are able to undertake paid work, and if so the hours of work undertaken). In addition to the hours of informal care provided, these opportunity costs are also likely determined by the necessity to perform particular informal care tasks at specific moments of the day. The literature, to date, has largely overlooked this dimension of informal care. We used Dutch data from time use diaries which report patterns of informal care throughout the day which enables investigation of when particular activities are undertaken. We found that whereas some tasks must be performed at a relatively fixed time of day, others are shiftable and can be performed at other times or even on different days. Household and organisation activities are more likely to be undertaken by employed caregivers, and seem largely to be shiftable; whereas personal care contains unshiftable activities. This implies additional opportunity costs of providing personal care tasks – we term these “time-bound” opportunity costs. Since the care recipient’s need for care may in part relate to unshiftable tasks, we conclude that one should be careful with using care need as an instrument of informal care in labour supply equations.

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The effects of informal care on paid-work participation in Great Britain: a lifecourse perspective

Several recent studies have documented a negative relationship between informal care-giving and labour market attachment in Great Britain. This paper examines the relationship from a longitudinal perspective using data from the Great Britain 1994–95 Family and Working Lives Survey. The first part of the paper studies the timing of informal care-giving to a sick, disabled or elderly person. This information is used in the second part to examine the effects of caring on employment. The results show that most carers look after only one dependant during their lives, and only around one-fifth to one-third look after a second dependant before the age of 65 years. Of all informal carers, about one-third had not been employed when they started caring for the first time in their lives, another third said that caring had no effect on their work arrangements, and about one-third reported one or several effects on their work arrangements, most commonly that they stopped working. Multivariate analyses show that semi-routine and routine manual workers report the strongest effects of care-giving. Part-time workers were more likely than full-time workers to reduce their hours of paid employment when they started caring.

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Employment, flexible working and the family

This paper assesses some of the implications of one of the major social changes to have taken place in the West during the second half of the twentieth century — that is, the increased employment of women, together with normative changes in gender relations and in women's expectations. These changes have been linked to an increase in individualism, which itself is associated with the transcendence of ‘first modernity’. Thus it is suggested that new approaches to social analysis are required (Beck). Here it is argued that, rather than develop completely new approaches in order to grasp the changes that are under way, the ‘economic’ and the ‘social’ (that is, employment and the family) should be seen as intertwined, rather than approached as separate phenomena. Past debates in feminism, changes in the family, and flexible employment are critically examined. The growing tensions between employment and family life are discussed. It is argued that these changes are associated with the intensification of capitalist development, rather than reflecting a fundamental transformation of society. Existing approaches to the analysis of social change, including Polanyi's analysis of the development of ‘counter-movements’ against the ‘self-regulating’ market, will, therefore, still be relevant to our enquiries. In the concluding section, a programme of research that would examine these changes is outlined.

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Couples' provision of informal care for parents and parents-in-law : far from sharing equally?

This study examines whether and how couples share the provision of informal care for their parents. Four waves of the British General Household Survey contain cross-sectional information about caring for parents and parents-in-law. Descriptive and multivariate analyses were conducted on 2214 couples that provided parent care. The findings emphasise married men's contribution to informal caring for the parental generation and at the same time demonstrate the limits of their involvement. Spouses share many parts of their care-giving but this arrangement is less common with respect to personal and physical care. The more care is required the more likely are people to participate in care for their parents-in-law. More sons-in-law than daughters-in-law provide care but, once involved, daughters-in-law provide on average more hours of care than sons-in-law. Own full-time employment reduces both men's and women's caring for their parents-in-law, and men's caring drops further if their wife is not in the labour market. The findings suggest that daughters-in-law often take direct responsibility whereas sons-in-laws' care-giving depends more on their wives' involvement. Children-in-laws' informal care-giving might decrease in the future because of women's increasing involvement in the labour market and rising levels of non-marital cohabitation in mid-life.

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Informal caregiving at working age: Effects of job characteristics and family configuration

This article addresses the relationship between employment and providing informal care for sick, disabled, or elderly people in Great Britain. Hazard rate models for taking up caring and leaving work when caring are estimated using retrospective family, employment, and caring data from the British Family and Working Lives Survey 1994 - 1995 for 9,139 British men and women. Family roles but not employment characteristics were relevant for men and women taking up caring. Being in a lower social class was, however, an important predictor of female carers leaving the labor market. Starting caring and quitting the labor market were not affected by women working part time, nor by most aspects of job flexibility that were considered.

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Supporting working carers : the benefits to families, business and the economy : final report of the carers in employment task and finish group: executive summary

This ground-breaking report by Government, Employers for Carers and Carers UK, sets out the economic case for supporting the growing number of workers who also care for older or disabled relatives.

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Combining informal care and work: supporting carers in the workplace

The UK Government is concerned that women and men who care for disabled or sick relatives, or elderly people, and who also wish to take part in paid work should have increased opportunities to do so. However, many informal carers find combining work and care difficult; some may ‘choose’ to give up paid employment completely. The present paper draws on the findings from two projects to explore the extent to which the needs of employees with caring responsibilities are supported in the workplace. The two projects examined evidence from a study of informal carers assessed under the 1995 Carers Act, identified the difficulties which they face in their workplace and observed the strategies which they developed to help sustain the two roles. From this, a model of support for working carers was developed which includes leave policies, carer-friendly working arrangements, access to a (private) telephone, and supportive line managers and co-workers. This support model was tested on the employment policies of 13 employers to see how ‘carer-friendly’ they were. Most of the organisations studied were able to provide appropriate support for carers identified in the model. Questions were then raised about different aspects of carer-friendly working arrangements, including whether carers should receive any special treatment that is not available to their colleagues, the role of line managers, and the relationship between seniority and opportunities to combine work and care.

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Strain and its correlates among carers of people with dementia in low-income and middle-income countries; a 10/66 Dementia Research Group population-based survey

Objectives: In a multi-site population-based study in several middle-income countries, we aimed to investigate relative contributions of care arrangements and characteristics of carers and care recipients to strain among carers of people with dementia. Based on previous research, hypotheses focused on carer sex, care inputs, behavioural and psychological symptoms (BPSD) and socioeconomic status, together with potential buffering effects of informal support and employing paid carers.

Methods: In population-based catchment area surveys in 11 sites in Latin America, India and China, we analysed data collected from people with dementia and care needs, and their carers. Carer strain was assessed with the Zarit Burden Interview.

Results: With 673 care recipient/carer dyads interviewed (99% of those eligible), mean Zarit Burden Interview scores ranged between 17.1 and 27.9 by site. Women carers reported more strain than men. The most substantial correlates of carer strain were primary stressors BPSD, dementia severity, needs for care and time spent caring. Socioeconomic status was not associated with carer strain. Those cutting back on work experienced higher strain. There was tentative evidence for a protective effect of having additional informal or paid support.

Conclusions: Our findings underline the global impact of caring for a person with dementia and support the need for scaling up carer support, education and training. That giving up work to care was prevalent and associated with substantial increased strain emphasizes the economic impact of caring on the household. Carer benefits, disability benefits for people with dementia and respite care should all be considered. Copyright © 2012 John Wiley & Sons, Ltd.

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Caring women, shrewd strategies: the organizational dynamics of home health care

The AIDS epidemic is a driving force in the external policy environment, stimulating large-scale changes in health care organizations. Visiting Nurse Associations (VNAs), gendered organizations with a hundred year tradition of caring work in communities, responded to governmental initiatives with structural and functional changes. A case study of the development of the AIDS Care Program of the Visiting Nurse Service of New York (VNSNY) offers a unique opportunity to explore the exercise of strategy as health policy is translated into organizational practice. Adoption of a gendered analysis is essential to this exploration of internal organizational choice and limits in responding to external societal change.VNSNY, one of the oldest and largest home care agencies in the United States, is located in an epicenter of the AIDS epidemic. Using organizational strategies developed over its history, this agency responded to the city's request for coordinated home care services to people with AIDS. The resulting program implementation and development process demonstrated the coercive state and mimetic professional forces on the organizational structure and function. At the same time VNSNY actively exerted its own influence to regain autonomy lost in previous government contracting. [...]

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Carers (Equal Opportunities) Bill

This Bill is to make provision about life long learning and education for the employment of carers and to place duties on local authorities and health bodies to achieve this.

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Should I Stay or Should I Go? Combining Work and Care for an Older Parent in Italy

Given the growth of care needs, the emphasis on informal care and the increasing labour force participation of women and senior workers, balancing employment and elderly care responsibilities is a crucial challenge. This qualitative study explores how and with what implications Italian senior workers combine work with care for older people. The results indicate that the impact of care responsibilities on work is limited and that employment has a buffer effect on overwhelming care responsibilities. By contrast the implications for private and family life are considerable. The conditions and mechanisms that support these results are discussed.

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Care roles and employment decision-making: The effect of economic circumstance

This article uses data from a panel of Australian mature-age women to examine the effects of care roles on workers’ intentions to leave their jobs. We focus on how the employment effects of care roles can be shaped by the economic circumstances of the worker. We find that caring for an ill, frail or disabled family member has significantly lower effects on the turnover intentions of mature-age women with ‘poor’ (as compared to favourable) economic circumstances. We interpret this pattern as reflecting the financial costs associated with the provisioning of these types of family care needs.

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Carers' policies in the UK

The range of government initiatives which involve carers is extremely broad, with the National Carers Strategy alone containing over 70 pledges. The Strategy takes a holistic approach, referring to almost every aspect of a carer's life from transport to work, from care to housing and from pensions to health. The breadth of issues covered in the Strategy means that it can make only passing reference to significant policy initiatives. This article explores these care, work and cash initiatives to examine in more depth whether this apparent coherence stand up to closer scrutiny.

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Carer's aspirations and decisions around work and retirement

The Department for Work and Pensions (DWP) commissioned the Social Policy Research Unit at the University of York to conduct research exploring the aspirations and decisions around work and retirement of people looking after disabled or sick relatives, friends, or older people. The study involved three elements: a literature review; in-depth interviews with 80 carers; and focus groups with professionals from Jobcentre Plus, social services departments and carers organisations who worked with carers.

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People into Employment: supporting people with disabilities and carers into work

Carers and people with disabilities are two disadvantaged groups at risk of social exclusion. Work is an important route to social inclusion, but carers and people with disabilities are under-represented in the work force. The present paper reports key findings from a new study that evaluated People into Employment (PIE), a pilot employment project in the north-east of England designed to support people with disabilities, carers and former carers in gaining mainstream work. The study aimed to identify what clients, partner agencies and employers perceived to be PIE's most important services, its strengths and areas where there was scope for further development. The study collected quantitative and qualitative data at the mid-point and at the end of the project through two questionnaire surveys, and interviews with PIE clients, the project development officer, partner agencies and employers. Drawing on the ‘pathway model’, the findings show that PIE's interventions included mobilising, matching, mediating and supporting activities. Key ingredients in PIE's success include: tailor-made job-search activities and training; adjusting the pace at which people move towards sustained employment; recognising and responding to the differing needs of people with disabilities, carers and former carers; confidence boosting; accompanying clients to job interviews; good job matching; and ongoing practical and emotional support for both clients and employers. Rudimentary calculations suggest that the cost per job to the project is less than the cost per job for large national projects. Overall, these findings illustrate how access to employment via flexible job-search services geared up to the local labour market can successfully promote social inclusion for carers and people with disabilities.

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Employment and coping strategies in carers of people with young onset dementia

Background and objectives Research into carers of people with young onset dementia (YOD) has highlighted that carers may experience more distress than late onset dementia (LOD) carers (e.g. Freyne, Kidd, Coen & Lawlor, 1999), and have specific needs which differ from those of LOO carers (e.g. Svanberg, Spectar & Slott, 2011). Difficulties with employment has been raised as a particular issue for this population (e.g. van Vliet, de Vugt, Bakker, Koopmans & Verhey, 2010), yet no qualitative study has examined the factors influencing carers' experience of employment. This study aimed to explore such factors and how these impact on carers' ability to cope with their caring roles. Method A qualitative grounded theory approach was used to study the experiences of employment using in-depth semi-structured interviews. Ten YOD carers with experience of employment, who were living with, and caring for, someone who had been diagnosed with dementia before the age of 65, were recruited through carer support groups using purposive sampling. Results Nine theoretical categories were identified, including: dealing with the challenges of the caring role, appraisal, attributing responsibility, support, benefitting from working, transferring work skills, mutual interference of work and home, needing flexibility to continue working and being motivated to seek work. by a need for space and identity. Conclusions These findings expand current theoretical knowledge of how YOD carers may manage employment alongside their caring role. Findings suggest carers may experience employment as personally beneficial, and that it may directly and indirectly influence their ability to cope with their caring role. YOD carers' vocational needs, and their coping resources may need to be explicitly addressed in clinical assessments, and explored and incorporated into psychological interventions. Further research is warranted to validate the findings empirically with a larger sample of YOD carers.

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Quality of life of Australian family carers: implications for research, policy and practice

As part of an international, multicentered project, the burden of care, health, and subjective well-being experienced by select Australian family carers supporting a relative with disability at home were investigated. Some 448 family carers residing in New South Wales and Tasmania completed a battery of instruments, including a self-report demographic survey, the Family Caregiver Burden Inventory, the General Health Questionnaire, and the Personal Wellbeing Index. Respondents were predominantly females (mean age = 48 years), married, and supporting a son or daughter with an intellectual disability (mean age = 18 years). Although caring for their family member was not perceived to be a burden, respondents reported notable limitations on their social networks and social activities. They reported higher levels of unemployment than would be expected for the general population and were over represented in lower income groups. They reported seriously low levels of mental health and personal well-being when compared with the general population. The findings revealed that this group of family carers were at high risk of social and economic disadvantage and at high risk of mental health challenges. Social policy makers and service providers should take these factors into account, both in the interests of promoting the health and well-being of the carers and considering the long-term needs of family members with disability who rely on family carers for daily support when designing services.

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The Impact of Caring on Informal Carers' Employment, Income and Earnings: a Longitudinal Approach

In Australia the policy balance has shifted away from institutional forms of health and aged care towards supporting people in their own homes. This change presupposes a significant and growing supply of informal caring labour. A large proportion of informal carers (40–60 per cent) currently combine paid employment with their caring responsibilities. Using the longitudinal Household, Income and Labour Dynamics in Australia Survey, the paper examines the effect of caring on employment, hours worked and earnings. The analysis shows that working age carers experience disadvantage. Carers are more likely than non-carers to reduce their hours of work or exit from the labour force, and earn lower levels of income. In planning for an ageing population, policies will need to address these negative effects and privatised costs of caring if the supply of informal care is to be sustained in the future.

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Caring for older adults with diabetes mellitus: characteristics of carers and their prime roles and responsibilities

Aims: Expanding prevalence of diabetes has a major health impact on older people and the burden experienced by their informal carers. We report research which aimed to examine the burden on carers and highlight their input into diabetes care.; Methods: Of 98 diabetes patients aged over 59 years, 89 regularly received help with day-to-day activities or looking after from someone else and, of these, 83 carers consented to interview. Patients and carers were administered questionnaires related to the management of diabetes and personal strain (including Diabetes Knowledge Questionnaire, EuroQol, Caregiver Strain Scale and General Health Questionnaire).; Results: A substantial unmet need of older people with diabetes mellitus, in relation to domestic activities and diabetes care, was highlighted. Patient and carer diabetes knowledge was low. Primary carers were generally female relatives from the same household, not in paid employment. Twenty-seven carers (33%) provided ≥ 35 h of care work each week. Most carers experienced a moderate level of stress, but 11 (14%) regularly felt overwhelmed. Thirty-three carers (40%) said they had never received any information on diabetes from professionals. Help most frequently wanted was advice and support in relation to accessing community services and about finances, benefits and/or allowances. Conclusions: Both patient and carer diabetes education strategies are required. Instruction for carers in the basic care of patients with diabetes is also needed and should be targeted. As many as one in seven carers felt regularly overwhelmed and lacked adequate support. Finally, 26 carers (31%) were entitled to benefits which they did not claim.

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Employment and caring in British and Norwegian banking: an exploration through individual careers

The continuing expansion of women's employment has increasingly focused attention on the question of how the caring work traditionally carried out by unpaid women will be accomplished. In particular, how can caring responsibilities be combined with a long-term career? In this paper, we assess the significance of the national context through a comparison of the biographies of career bank managers, male and female, in Britain and Norway. We find that although the (considerably) more family-friendly policies of the Norwegian state do have a positive impact, particularly in somewhat exceptional cases, nevertheless in general in both countries, individuals have difficulties in combining employment with caring and no examples of a 'two career' household were found in either country. These findings emphasise the continuing tension between market forces and social reproduction, which has been exacerbated by the erosion of the 'male breadwinner' model of family caring and has yet to be resolved in a satisfactory manner.

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Global Perspectives on Children's Unpaid Caregiving in the Family

This article provides the first cross-national review and synthesis of available statistical and research evidence from three developed countries, the UK, Australia and the USA, and from sub-Saharan Africa, on children who provide substantial, regular or significant unpaid care to other family members ('young carers/caregivers'). It uses the issue of young carers as a window on the formulation and delivery of social policy in a global context. The article examines the extent of children's informal caregiving in each country; how young carers differ from other children; and how children's caring has been explained in research from both developed and developing countries. The article includes a review of the research, social policy and service developments for young carers in each country. National levels of awareness and policy response are characterized as 'advanced', 'intermediate', 'preliminary' or 'emerging'. Explanations are provided for variations in national policy and practice drawing on themes from the globalization literature. Global opportunities and constraints to progress, particularly in Africa, are identified. The article suggests that children’s informal caring roles in both developed and developing nations can be located along a ‘caregiving continuum’ and that young carers, globally, have much in common irrespective of where they live or how developed are their national welfare systems. There is a need in all countries for young carers to be recognized, identified, analysed and supported as a distinct group of ‘vulnerable children’.

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Caregiver burden, time spent caring and health status in the first 12 months following stroke

OBJECTIVE: To quantify time caring, burden and health status in carers of stroke patients after discharge from rehabilitation; to identify the potentially modifiable sociodemographic and clinical characteristics associated with these outcomes. METHODS: Patients and carers prospectively interviewed 6 (n=71) and 12 (n=57) months after discharge. Relationships of carer and patient variables with burden, health status and time analysed by Gaussian and Poisson regression. RESULTS: Carers showed considerable burden at 6 and 12 months. Carers spent 4.6 and 3.6 hours per day assisting patients with daily activities at 6 and 12 months, respectively. Improved patient motor and cognitive function were associated with reductions of up to 20 minutes per day in time spent in daily activities. Better patient mental health and cognitive function were associated with better carer mental health. CONCLUSIONS: Potentially modifiable factors such as these may be able to be targeted by caregiver training, support and education programmes and outpatient therapy for patients.

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Conceptualizing cash for care: the origins of contemporary debates

Feminism rather than gerontology characterises this book but the substantive issues lie within the field of gerontology and the shift in the boundaries of paid and unpaid work at the end of the twentieth and in the early twenty-first centuries. Cash payments for care are a possible method of ensuring care and citizenship. The chapters raise issues of long-term care funding, the positions of users, caregivers and care workers in the care relationship, how care work could be professionalised and support for informal carers. The first chapter summarises the issues involved in the new systems which emerged in the 1990s and the impact of funding regimes, together with the literature which appeared reviewing these policy developments and the policy context. Increased longevity and changes in family structure diminished the number of potential caregivers, particularly in the EU and North America. Containing costs of social care through the funding of retirement pensions and long-term care forms the second major issue [...]

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Who cares wins: the social and business benefits of supporting working carers

Research shows that the adoption of flexible working practices can save businesses’ time and money – with some companies reporting savings of over £1 million (full report, executive summary and statistical report).

This study has explored how three very different employers have created a supportive environment at work for carers. In each organisation, we surveyed employees about their caring responsibilities, interviewed staff who were carers, reviewed documentary evidence, and spoke with managers in senior, strategic positions and line managerial roles. These case studies enabled us to assess what it is like to be employees, supervisors and managers in these organisations, and to gain insight into their organisational cultures and processes. The study also involved new statistical work on the 2001 Census, using specially commissioned data.

This confirmed how ubiquitous caring is – over 3 million people were combining work and care on Census day 2001. At some time in life, caring is a normal and everyday thing to do for most of us – both men and women, and people of all ethnicities and ages. Across the lifecourse, caring for others is likely to happen, at some point, to most of us.

Our research shows that employers can deliver effective support for carers, and that far from compromising their business objectives, providing the flexible approach which carers need brings impressive business gains.

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Eldercare and employed caregivers: a public/private responsibility?

The National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP) have reported that 21% of the U.S. population provides family caregiving services to someone over 18 years old. Seventy-nine percent (79%) of these caregivers provide care for someone aged 50 or older. The majority of caregivers work full or part-time, and nearly two-thirds of employed caregivers make work-related adjustments in order to provide care (NAC & AARP, 2004). This article examines eldercare issues of employed caregivers, identifies current public and private policies addressing caregiver needs, presents a process model to assist organizations in creating family-friendly workplaces, and suggests social work roles that support family caregiving.

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Recognised, valued and supported: next steps for the carers strategy

This strategy identifies the actions that the UK Government plans take over the next four years to ensure the best possible outcomes for carers and those they support. Over the summer of 2010, the Department of Health sought views on what these priorities should be. Over 750 responses were received, representing the views of over 4,000 carers. These views are summarised in an Annex and quotes from respondents are included in the strategy. Key messages included: the need for better and timely access to health, social care and financial information; often feeling excluded by clinicians; finding accessing assessments overly bureaucratic and slow; feeling forced to give up work to care; neglecting their own health and well-being; the need breaks from caring; the value of Carer’s Allowance is considered inadequate; and more needs to be done to identify and support young carers. Four priority areas have been identified for the strategy: supporting those with caring responsibilities to identify themselves as carer

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Models of Earning and Caring: Determinants of the Division of Work

This paper examines possible determinants of models of the division of earning and caring activities in Canadian couples. Using the General Social Survey on Time Use, we identify five models of the division of work: complementary-traditional, complementary-gender-reversed, women's double burden, men's double burden, and shared roles. While the complementary-traditional model is declining, it still represents a third of couples. Women's double burden is the second largest category, representing 27 percent of couples in 2005, with men's double burden representing another 11 percent. The shared roles account for about a quarter of couples. Building on these typologies of earning and caring, we analyze the relative importance of life course, as well as structural and cultural factors as determinants of the division of paid and unpaid work within couples. We find that the complementary-traditional and women's double burdens are more likely for older persons, and for persons with young children. Alternative models are more common when women have higher relative resources, for younger persons, and for persons living in Quebec and in urban areas.

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The chicken or the egg? Endogeneity in labour market participation of informal carers in England

Around 14% of the UK labour force has informal care responsibilities and almost everyone in society will be an informal carer in their lifetime. A well-known fact in the small economic literature on informal care is the apparent negative relation between care responsibilities and labour market participation. Yet, caring and labour market participation may be endogenous. Using an instrumental variable approach and panel data techniques and employing data from the British Household Panel Study from 1991 to 2002, this paper shows that not accommodating for endogeneity in the labour market participation equation may significantly overestimate the impact care exhibits on the employment decision of informal caters. Moreover, it is shown that a negative impact on employment only applies to some care-types. Policy implications are derived. (C) 2006 Elsevier B.V. All rights reserved.

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Top guidance for carers

Luke Clements is full of praise for the guidance accompanying the Carers and Disabled Children Act, which spells out, among other things, which carers are entitled to assessments and services.

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Paid employment and unpaid caring work in Spain

The objective of this paper is to investigate the determinants of unpaid time in caring activities, with a special emphasis on the gender dimension. Data from the Household Panel Survey for Spain is used to estimate an ordered probit model for the hours interval in care of children and adult people in need of care. The results show that gender is one of the key determinants of the distribution of time in caring. Being in paid employment is also an important factor in the time devoted to caring. Demographic variables like age, marital status and education are also relevant, particularly in the case of women. Finally, cultural habits and customs are also important.

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Changing care? Men and managerialism in the nonprofit sector

Summary: The movement of men into care work in the predominantly female voluntary sector appears to be an unintended impact of welfare state contracting-out, managerialism and labour market restructuring. While not uniform, our comparative, international data (New Zealand and Scotland) show that some groups of men in nonprofit care work jobs embraced managerialism and used aspects of it to reshape and advance their work, while others undertook practices exemplifying a ‘caring masculinity’ more similar to practices currently associated with femininised ways of undertaking care activities.

Findings: Drawing on international comparative data collected as part of a larger study of restructuring in the nonprofit social services, this article suggests analytic clusters of masculinities operating in the voluntary sector and explores how the presence of men in care work may be changing it. The article also shows how hegemonic, masculinist-oriented practices in the workplace appear more amenable to managerialism than the expected feminine self-sacrificing, self-exploiting ethos of this highly gendered, female-majority sector.

Applications: These findings provide insights into the gendered and changing work in the nonprofit social services sector, and suggest ways the gender order is changing with the influx of male workers. The findings will be of interest to social work managers, supervisors, practitioners, policy analysts, students and educators.

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Carers in the region: a profile of the South East

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the South East region. In 2001 there were 732,483 carers in the South East region, which is 9% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the South East region.

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'After I've done the mum things': Women, care and transitions

Changes in the relationship of paid work, care and welfare have most impact on women, particularly those who are affected by welfare-to-work policies. A study of care in relation to transitions to the labour market made by women with dependent children in Glasgow suggests that women in low-income households face additional difficulties in achieving a balance of work and care. They may have more care responsibilities than other families but fewer material and social resources with which to carry them out. Neither the male-breadwinner model of family arrangements for the care and costs of children nor the adult-worker model that is replacing it in policy logic, takes into account their social and economic circumstances or the need for both formal and informal care to support successful transitions to further education and employment. Care is neither as straightforward to organise, nor as readily substituted for, as employment and welfare policies, in their limited attention to it, imply. The practices and meanings of care must be considered in depth if it is to be adequately understood and not further marginalised.

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A fairer future: the Equality Bill and other action to make equality a reality

The Equality Bill will strengthen equality law in England, Wales and Scotland by: introducing a new public sector duty to consider reducing socioeconomic inequalities; putting a new Equality Duty on public bodies; using public procurement to improve equality; banning age discrimination outside the workplace; introducing gender pay and equality reports; extending the scope to use positive action; strengthening the powers of employment tribunals; protecting carers from discrimination; protecting breastfeeding mothers; banning discrimination in private members’ clubs; and strengthening protection from discrimination for disabled people. This document explains how the Bill, supported by other action being taken by the Government and partners, will make Britain a fairer place to live and work now and in the future.

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Unpaid caregiving and paid work over life-courses: Different pathways, diverging outcomes

We investigate the extent to which people's earlier circumstances and experiences shape subsequent life-courses. We do this using UK longitudinal data to provide a dynamic analysis of employment and caregiving histories for 4339 people over 15–20 years between 1991 and 2010. We analyse these histories as sequences using optimal matching and cluster analysis to identify five distinct employment-caregiving pathways. Regression analysis shows that prior to embarking on these pathways, people are already differentiated by life-stage, gender and attitudes towards family and gender roles. Difference-in-differences estimation shows that some initial differences in income, subjective health and wellbeing widen over time, while others narrow. In particular, those following the most caregiving-intensive pathways not only end up poorer but also experience a relative decline in subjective health and wellbeing. These results confirm that earlier circumstances exert a strong influence on later life-courses consistent with pre-determination, persistence and path dependence.

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Work restrictions experienced by midlife family care-givers of older people: evidence from six European countries

This paper examines differences in work restrictions of midlife family carers of older people in terms of prevalence, gender and explanatory variables, in six European countries: Germany, Greece, Italy, Poland, Sweden and the United Kingdom. A sample of 2,897 carers aged 45–64 was extracted from the EUROFAMCARE (Services for Supporting Family Carers of Older People in Europe: Characteristics, Coverage and Usage) European project database, in order to analyse four possible work restrictions experienced in connection with the activity of care-giving: the reduction of working hours; giving up working; difficulties in career developments and forced occasional work. The results show that work restrictions are experienced differently between countries especially by women: they are reported to a higher degree in the United Kingdom, Germany and Greece, less so in Italy, and seldom in Poland and Sweden. Gender differences within countries are not so marked. Country differences are explained in the light of the different welfare regimes characterising the countries under investigation, in order to elucidate how policy makers may act to improve working carers' conditions through appropriate policies.

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Relatives as paid care-givers: how family carers experience payments for care

Payments for care, by which people in need of long-term care directly employ care workers, have been introduced in many European countries. In The Netherlands, care dependants are allowed to use these payments to hire relatives to perform care tasks. Care-givers who are employed by their relatives are in a hybrid position, because they are contracted as employees in the informal setting of a family home and its affective care relationships. This paper reports a qualitative study of relatives' experiences of payments for care and how these affect their care-giving. In-depth interviews were undertaken with 17 paid carers: they were asked to respond to three fictional vignettes of contrasting care trajectories. It was found that the cash nexus had mixed and partly contradictory implications for the paid care-givers. On the one hand, the care-givers were satisfied with the arrangement, as the payments recognised and raised their status as carers, and were seen as reward and reciprocation for their care work. Some carers had found that the contract helped manage strained relationships, by enabling a clearer differentiation of care tasks from affection. On the other hand, some who regarded themselves as employees and saw their role as equivalent to formal carers felt a greater obligation to provide high-quality care, and found that they were thanked less often and received fewer tokens of gratitude.

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Informal Care and Employment in England: Evidence from the British Household Panel Survey

More than 40% of the respondents in the British Household Panel Survey provide informal care at least for one year within the period 1991-2003 and carers are usually less likely to hold simultaneously a paid job. There is little evidence on the mechanism that links informal care provision and labour market outcomes. This paper provides evidence on the pathways through which this pattern arises using a multivariate dynamic panel data model that accounts for state-dependence, feedback effects and correlated unobserved heterogeneity. We find evidence of a causal link from informal care to employment with employment rates reduced by up to 6 percentage points. However, this effect is only found for co-residential carers who account for one third of the population of carers and less than 5 percent of the overall labor force. For the same group, a significantly smaller link from employment to care provision is found. A micro-simulation exercise using the model estimates suggest that the overall potential pressure on the provision of informal care created by a rise in the employment rate is minimal.

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Is There a Trade-off Between Parent Care and Self-care?

Caregiving for family members is often described as a 36-hour day. Previous literature has suggested that family caregivers have little time to attend to their own health needs, such as participating in leisure-time physical activity. Using data from the Health and Retirement Study, we analyze whether time-allocation decisions reflect a conflict between time devoted to informal care and time devoted to self-health promotion through physical activity. The empirical model is a system of four correlated equations, wherein the dependent variables are hours spent caregiving, frequency of moderate and vigorous physical activity, and hours spent in paid work. Results from joint estimation of the four equations indicate limited evidence of a competition between time spent in caregiving and frequency of physical activity. Parental factors that increase allocation of care time to parents do not comprehensively induce reductions in the frequency of any type of physical activity, or in hours of work, among either men or women.

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Excluded older people: Social Exclusion Unit interim report

The experience of older age should be a positive one. But whilst many older people enjoy the chance for more leisure, learning new things, or spending time with friends and family, others experience isolation and exclusion. The consultation highlighted three key ways in which respondents say provision needs to improve if older people are to enjoy a better quality of life: joined up services are key; intervening early is important, and investment in low level prevention can reduce costlier interventions later; and older people generally know what they need and want, and they should be involved in the design and – where practicable – the delivery of services. This report is split into three sections: a summary of the issues and challenges; social issues from crime to housing, from transport to employment; and the specific needs of carers, those from minority ethnic communities, and at the way in which support for excluded older people is funded.

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A critical ethnography of communication processes involving the management of oral chemotherapeutic agents by patients with a primary diagnosis of colorectal cancer: study protocol

Aim: To describe the protocol used to examine the processes of communication between health professionals, patients and informal carers during the management of oral chemotherapeutic medicines to identify factors that promote or inhibit medicine concordance.

Background: Ideally communication practices about oral medicines should incorporate shared decision-making, two-way dialogue and an equality of role between practitioner and patient. While there is evidence that healthcare professionals are adopting these concordant elements in general practice there are still some patients who have a passive role during consultations. Considering oral chemotherapeutic medications, there is a paucity of research about communication practices which is surprising given the high risk of toxicity associated with chemotherapy.

Design: A critical ethnographic design will be used, incorporating non-participant observations, individual semi-structured and focus-group interviews as several collecting methods.

Methods: Observations will be carried out on the interactions between healthcare professionals (physicians, nurses and pharmacists) and patients in the outpatient departments where prescriptions are explained and supplied and on follow-up consultations where treatment regimens are monitored. Interviews will be conducted with patients and their informal carers. Focus-groups will be carried out with healthcare professionals at the conclusion of the study. These several will be analysed using thematic analysis. This research is funded by the Department for Employment and Learning in Northern Ireland (Awarded February 2012).

Discussion: Dissemination of these findings will contribute to the understanding of issues involved when communicating with people about oral chemotherapy. It is anticipated that findings will inform education, practice and policy.

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Longitudinal perspectives on caregiving, employment history and marital status in midlife in England and Wales

In this paper, we examine associations between employment history and marital status and unpaid care provision among those aged 40–59 in England and Wales. We used data from a large nationally representative longitudinal study, the Office for National Statistics Longitudinal Study. Initially based on a sample drawn from the 1971 Census, in 2001 this study included data on 110 464 people aged 40–59 of whom 5% provided 20 or more hours per week of unpaid care. We analysed associations between caregiving of this intensity and current employment, employment history, employment characteristics, marital status, and employment after childbearing. Among men, caregiving was associated with a history of lower levels of employment. The small group of men with a history of least employment were 70% more likely to provide care than those with a history of most employment. Among women, caregiving was associated with a history of non-employment, but there were no differences between those with fully engaged and partially engaged labour market histories. Analyses of a subset of data on women who had a child between 1981 and 1991 showed that those who had returned to full-time paid work by 1991 were over 50% less likely to later become caregivers. Some associations between employment characteristics and propensity to provide 20 or more hours per week of care were also identified. Those in public sector jobs and those previously in employment with a caregiving dimension were 20–30% more likely than other working women to provide unpaid care. These results suggest a continuing gender dimension in care provision which interacts with marital status and employment in gender-specific ways. It also suggests that implementation of strategies to enable those in midlife to combine caregiving and work responsibilities, should they wish to do so, should be an urgent priority.

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Out of the shadows

The author describes how his Private Member's Bill aims to give the UK's seven million carers the opportunity to learn and to develop a life beyond their caring responsibilities.

Family caregivers: A shadow workforce in the geriatric health care system?

Based on two years of fieldwork, conducted between March 2003 and March 2005 in the health care industry of the northeastern United States, this study shows that the work of family caregivers of elders goes far beyond previously recognized care in the home to acknowledge care inside health care facilities and in conjunction with community services. It reveals that family caregivers — untrained, undersupported, and unseen — constitute a “shadow workforce,” acting as geriatric case managers, medical record keepers, paramedics, and patient advocates to fill dangerous gaps in a system that is uncoordinated, fragmented, bureaucratic, and often depersonalized. Detailed examination of what family caregivers actually do in traversing multiple domains reveals the extent of their contribution to and the weaknesses in the present geriatric health care system. It suggests that the experiences of family caregivers must be central to the creation of new policies and a more coordinated system that uses the complex work of family caregivers by providing the training and support that they need.

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Caring and women's labour market participation

The impact of caring on the income and labour market participation of carers can be substantial. In this article, the authors describe the labour force status of carers who receive an Australian Government payment directed to carers, with a particular focus on the degree to which non-employed carers want to be in paid employment. The extent to which having caring responsibilities has a causal impact upon labour force participation, and the job changes that employed carers have made as a consequence of their caring responsibilities are also explored, as are the implications of paid work for the income of carers. 

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Home-based care provision within the German welfare mix

With the introduction of long-term care insurance (LTCI) in 1995/96, Germany established a universal long-term care scheme within a cost containment framework to provide public support in defined situations of care dependency. The scheme aimed to promote ageing in place with an emphasis on public support for family care provision as a precondition. A further aim was the expansion of market-oriented professional care services to offer users a choice between family and professional care provision and care providers. The focus of this study is on the interplay of formal and informal family care provision within the institutional framework of LTCI, as well as the organisation, regulations and mix of different types of formal care services. In a first step, an examination of the interplay of formal and informal care provision shows the largely family-oriented care strategy, the burdened situation of informal carers, the mix of rationalities of service use and their interrelationship with socioeconomic inequality. In a second step, an analysis of the organisation of different types of formal services reveals paid care provision that emerges in the interplay of politicians’ strategies to develop professional care services within the framework of LTCI, bottom-up strategies of users to increase the range of services outside the framework of LTCI and efforts of politicians to regulate the latter. Basic orientations of care provision underlying the development process such as user orientation, quality and comprehensiveness guided the process and are used to analyse the development. Finally, the discussion of the situation of care workers reveals a contradictory picture with increasing employment opportunities, a comparably well-qualified workforce and worsening employment conditions. Empirically, the research is based on an institutional analysis of LTCI combined with a literature review and representative statistics.

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'Do I stay or do I go?'-job change and labor market exit intentions of employees providing informal care to older adults

This article examines whether providing informal eldercare to an older dependent person predicts employees' intentions to change jobs or exit the labor market and, if so, which particular aspects of both caregiving (e.g. time demands, physical/cognitive care burden) and their current work environment shape these intentions. We used data from a sample of 471 caring and 431 noncaring employees in Austria and split the analyses by gender. We found different aspects of informal caregiving to be associated with the intention to change jobs and with the anticipated labor market withdrawal of male and female workers. A time-based conflict between informal eldercare and paid work was significantly and positively related to the intended job change of female workers but not of their male counterparts. Flexible work arrangements were found to facilitate the attachment of female workers to their jobs and the labor market. Intentions to exit the labor market of male workers appeared to be triggered by a physical care burden rather than time demands. Copyright © 2012 John Wiley & Sons, Ltd.

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Growing and gaining through caring for a loved one with dementia

Aim: To investigate the gains experienced by family caregivers of persons with dementia. Methods: Twelve respondents were recruited using purposive sampling from three institutions around Singapore. A qualitative design, guided by the grounded theory approach, was adopted and involved semi-structured, in-depth, face-to-face interviews. The interviews were recorded, transcribed and analyzed using open, axial and selective coding. Results: All caregivers interviewed reported having gained from caregiving. The most common gain was that of 'personal growth' which comprised being more patient/understanding, becoming stronger/more resilient, having increased self-awareness and being more knowledgeable. Another theme that emerged was `gains in relationships' whereby caregivers experienced an improvement in their relationship with the care recipient, with others in the family or in their ability to interact with other older persons. The third gain experienced was that of `higher-level gains' which encompassed gains in spirituality, deepened relations with God, and a more enlightened perspective in life. Discussion: This research supports a shift from the conventional focus on burdens to a more holistic approach that considers how caregivers can grow and emerge stronger from the caregiving experience. This has implications in the design and delivery of services as utilizing these gains as a coping resource may enable better support for caregivers. It is pertinent that professionals supporting caregivers internalize the perspective of gains so that it becomes a natural way of seeing their clients and in the process help caregivers find meaning and enrichment in their caregiving journey.

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Developing a joint mental health strategy for elders

Reports on the development of a joint mental health strategy for older people in a central London Borough. The project brought together clinicians and practitioners from a variety of settings, the voluntary sector, and users and carers. The aim of the project was to develop a shared philosophy of care based on promoting independence and from this to identify the components of a spectrum of care that would meet the wide range of needs of elders with mental ill health. The borough had high levels of deprivation, unemployment and poor housing. In addition there was a rich ethnic diversity within the borough.

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Demystifying autism and Asperger's syndrome: help for parents, carers, teachers and others interested in autistic spectrum disorder

Better diagnosis has played a key role in identifying the children and adults with autistic spectrum disorder. Current figures estimate that 500,000 families throughout the UK are affected. And because autism is a spectrum disorder, it affects people at differing levels of cognitive functioning with three distinct areas of impairment.

National health and wellbeing outcomes: a framework for improving the planning and delivery of integrated health and social care services

Guidance framework on the national health and wellbeing outcomes which apply to integrated health and social care. The framework is designed to inform how services are planned across the whole pathway of care, to ensure a focus on individuals, and also the practice changes within integrated multidisciplinary teams, that will make a difference to the care people receive. The nine national health and wellbeing outcomes which apply to integrated health and social care cover: people's ability to look after and improve their own health and wellbeing and live in good health for longer; independence at home or in a homely setting in the community; people's experience of the service and dignity; quality of life of people who use health and social care services; reducing health inequalities; support for unpaid carers; safety from harm; engagement of social care workers; and effective and efficient use of resources.

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Women's experiences of combining eldercare and paid work in the Scottish food retail sector

This paper draws upon qualitative data from a mixed-methods study to consider women's everyday experiences of combining paid employment with informal care for older relatives. Women who participated in the study were employed in shop floor jobs in the Scottish food retail sector. We offer data and analysis of two under-researched topics, namely eldercare, and the reconciliation of unpaid caring with employment in food retailing. The paper addresses three aspects of women's everyday experiences: managing the everyday sequencing of paid employment and unpaid care activities; anticipating contingency; planning for the long term. Throughout our analysis, we consider the implications of combining paid employment and unpaid care activities for women's quality of life, health and well-being.

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Changing intergenerational solidarities within families in a Mediterranean welfare state - Elderly care in Italy

Intergenerational solidarity within families is the traditional source of support for dependent elderly people in southern European countries, where care needs have been mainly fulfilled by the unpaid work of women. Recently, the decline of informal care and the persistent lack of supply of formal services have been accompanied by the growth of commercial services mostly provided by migrant women hired by families in the grey market. The article is based on a qualitative study and explores the social processes underlying these changes. It suggests that although intergenerational solidarity is still crucial, it is expressed less through the direct provision of care and more through the supervision of paid services. This shift, which results mainly from a strategy adopted by middle-class women, challenges traditional gender relations and divisions of work. Moreover, it produces employment relations characterized by low pay and underprotection and reflecting conflicts over time and space typically present in informal care relations.

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Women as parents, workers, carers and survivors: A research design to explore lives and share support

This paper situates the lives and work of parents who care for children with ongoing health conditions and disabilities — and who also work full time — within the context of their workplace. Caring responsibilities of parents, especially mothers, are underscored. Interruptions to the working day may be required due to various professional and medical consultations, hospitalisations or treatment regimens. Australian Bureau of Statistics reports support the claim that the prevalence of this problem makes it of import to working carers, their families and, ultimately, the organisations where they may be employed. While there have been other studies concerned with the crossover between family responsibilities and work, there have been no phenomenological investigations that focus on this problem from the perspective of the full time working carers of children with chronic illness and/or disability, especially when their work environment is increasingly being characterised as hostile or abusive. The paper [...]

The opportunity costs of informal care: does gender matter?

In this paper, we investigate the costs borne by both male and female carers in terms of their forgone formal employment opportunities. Traditionally, informal care was supplied by women but nowadays women are not only more likely to work, but also likely to be significant contributors to family finances. For women, this implies that the size of any forgone earnings cost of informal care is increasing. At the same time, population ageing is making for increasing numbers requiring care. From a policy perspective it is therefore helpful to consider a less traditional but nevertheless important source of informal care, men. We find that both male and female carers bear indirect costs in that they are less likely to be in paid work than otherwise similar non-carers and when they are in paid work they earn significantly less. However, we find that the motivation for lower employment participation is not the same for men as it is for women.

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Women caring for elderly family members: shaping non-traditional work and family initiatives

Caring for a dependent elderly family member and employment are competing demands for men, and especially women, who work in the United States. Women traditionally function in the caregiving role for parents in need. Yet unlike their mothers before them, modern day women caring for elderly parents have more roles, and thus more role demands upon them. Traditional familial roles as wives, homemakers, and mothers are more often coupled with roles as paid workers and as caregiving daughters to dependent parents. Maintaining today's families via the kin-keeping role may be increasingly difficult for the employed elder caregiver, typically a female in her mid-40s to late 50s. The burdens employed caregivers experience have effects in the workplace, for example, attendance problems and poor job performance. Yet, the research in this area is relatively sparse, especially in data on the effect of family status on numerous measures of productivity and employee performance. How research can deliver assistance in programming and policy development of eldercare benefits in the workplace by demonstrating which categories of employees (i.e., by gender, age, race, ethnicity, occupational status, and earnings) are most affected by elder caregiving and in what ways is presented. Family and work initiatives to help maintain this balance between family and job responsibilities are discussed and recommended. 

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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.

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A dynamic analysis of informal care and employment in England

This paper analyzes the dynamics in employment and informal care outcomes of women in England. To this end, we develop a dynamic model to describe pathways leading to a negative correlation between informal care and employment in a cross-section. The model allows for different types of caregiving, correlated permanent unobserved heterogeneity and initial sorting. The model is estimated on data from 6 waves of the BHPS 2000–2005. Our findings suggest modest feedback effects. We find a negative effect of co-residential caregiving on future employment and a negative effect of employment on future co-residential and extra-residential caregiving. We also find evidence of positive state-dependence in caregiving although most of the persistence in such activities is related to unobserved heterogeneity rather than state-dependence.

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Labor market outcomes of informal care provision in Japan

This paper examines the labor supply outcomes of family care provision for Japanese households in 2010, ten years after the introduction of the public long-term care insurance (LTCI) program. We found that family care provision for parents adversely affected labor market outcomes of main caregivers at home in terms of the probability of working, employment status and hours worked. The adverse effect was found to be more serious for female caregivers than for male caregivers. Moreover, our results suggest that the public LTCI program seems to only partially mitigate the disadvantages of the main caregivers for both males and females.

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The experience of partners of young stroke survivors

Purpose. Stroke is a health crisis that can prompt a re-organisation of lives and impact on family caregivers. This study extends existing findings by investigating the experiences of partners of young stroke survivors (under 60 years old) two to seven years post-stroke. Method. Semi-structured interviews with seven partners were analysed using interpretative phenomenological analysis. Results. Two super-ordinate themes emerged, 'Adjustment' and 'Coping'. The first consists of two subordinate themes; 'Changed lives' describes the way in which the impact of the stroke was played out in many areas of the partners lives, whereas 'Enduring effects on the self' highlights the psychological consequences of these changes. 'Coping' refers to the ways in which partners adapt to life post-stroke. Conclusions. The study extends knowledge by demonstrating the enduring effects of caring on domestic tasks, relationship with survivor, family roles, employment and social life. Trauma from the stroke event and its immediate aftermath persisted over years. Caring impacted on the partners' sense of self and identity, and positive as well as negative effects were noted. Coping was primarily problem-focussed and previous experiences, social comparison and social support were important. Implications for community support services are discussed.

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Does Informal Eldercare Impede Women's Employment? The Case of European Welfare States

Abstract European states vary in eldercare policies and in gendered norms of family care, and this study uses these variations to gain insight into the importance of macro-level factors for the work–care relationship. Using advanced panel data methods on European Community Household Panel (ECHP) data for 1994–2001, this study finds women's employment to be negatively associated with informal caregiving to the elderly across the European Union. For the countries included in the study, the effects of informal caregiving seem to be more negative in Southern Europe, less negative in Nordic countries, and in between these extremes in Central Europe. This study explains that since eldercare is a choice in countries with more formal care and less pronounced gendered care norms, the weaker impact of eldercare on women's employment in these countries has to do with the lesser degree of coercion in the caring decision.

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Carers in the region: a profile of the North East

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the North East region. In 2001 there were 275,813 carers in the North East region, which is 11% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the North East region.

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Choice in the context of informal care-giving

Extending choice and control for social care service users is a central feature of current English policies. However, these have comparatively little to say about choice in relation to the informal carers of relatives, friends or older people who are disabled or sick. To explore the realities of choice as experienced by carers, the present paper reviews research published in English since 1985 about three situations in which carers are likely to face choices: receiving social services; the entry of an older person to long-term care; and combining paid work and care. Thirteen electronic databases were searched, covering both the health and social care fields. Databases included: ASSIA; IBSS; Social Care Online; ISI Web of Knowledge; Medline; HMIC; Sociological Abstracts; INGENTA; ZETOC; and the National Research Register. The search strategy combined terms that: (1) identified individuals with care-giving responsibilities; (2) identified people receiving help and support; and (3) described the process of interest (e.g. choice, decision-making and self-determination). The search identified comparatively few relevant studies, and so was supplemented by the findings from another recent review of empirical research on carers’ choices about combining work and care. The research evidence suggests that carers’ choices are shaped by two sets of factors: one relates to the nature of the care-giving relationship; and the second consists of wider organisational factors. A number of reasons may explain the invisibility of choice for carers in current policy proposals for increasing choice. In particular, it is suggested that underpinning conceptual models of the relationship between carers and formal service providers shape the extent to which carers can be offered choice and control on similar terms to service users. In particular, the exercise of choice by carers is likely to be highly problematic if it involves relinquishing some unpaid care-giving activities.

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Effect of caring for an older person on women's lifetime participation in work

This paper examines the relationship between informal care and ending paid work for working women of three age groups (up to 30, 31–49 and 50 or more years) in 1995 in Belgium. It explores the effect of being a carer for older adults on the probability of ceasing to work. Most particularly, it focuses on the effect of the care intensity in the different age groups. The analyses use data from the European Community Household Panel (ECHP). A sample of 24,592 working women living in 11 European countries was followed from 1995 to 2001. Multivariate analyses for the entire sample show that the simple fact of caring or not did not influence the probability of ceasing work, but that providing light care had a negative effect, suggesting the presence of a respite effect. As for the effects specific to each age group, caring did not have any effect for women aged 31 to 49 years, but for the other two age groups, women who provided light care were less likely to cease work than those not caring for an older person. In contrast, providing heavy care increased the probability of ceasing work, but only for those aged 50 or more years. The findings suggest that studies of and policies related to informal care and its consequences should give more attention to age group differences.

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Combining work and family life: the pension penalty of caring

This paper uses work and caring history information from the British Family and Working Lives Survey (1994/5) to examine the provision of family care and its impact upon the employment and the subsequent state and private pension entitlement among mid-life men and women. Combining paid employment with care-giving was not an option for a significant minority of women with caring responsibilities in mid-life. One-in-five mid-life women who have ever had caring responsibilities reported that, upon starting caring, they stopped work altogether, and another one-in-five reported that they worked fewer hours, earned less money or could only work restricted hours. Fewer men and women who stopped work as a result of caring were members of an occupational pension scheme than other groups; and they had accumulated fewer years of contributions than their counterparts who continued working, with direct implications for their level of pension income in later life. The extension of employers' schemes to help workers balance paid work and family responsibilities would facilitate more carers remaining in the labour market, as would an explicit carers' dimension within the new ‘Working Tax Credit’. Consideration should also be given to extending credits for second tier pensions to working carers who provide care for over 16 hours a week and who earn below the lower earnings limit. This will ensure that carers who juggle low paid work and care are not penalised for working, and that their unpaid contribution to society is recognised.

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Supporting carers in paid work

Diane Seddon and Catherine Robinson describe their study looking at the first-hand experiences of family carers who also have paid employment. 

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Mothers caring for children and young people with developmental disabilities: intent to work, patterns of participation in paid employment and the experience of workplace flexibility

Caring alters plans to return to work and changes career trajectories for many primary caregivers of children with disabilities, most of whom are mothers. The Juggling Work & Care study was a South Australian cross-sectional mail-out and online survey for carers of children and young adults with developmental disabilities aged 0–25 years, which investigated work participation, work–life balance and psychological well-being. This study shows that mothers who were in a couple relationship and primary caregivers for their child (n = 287) were less likely to be in paid employment and worked fewer hours than mothers in the general population, regardless of age of child. Work participation was shown to be strongly related to the severity of child disability. Impacts of caring for mothers were significant. Over a quarter of mothers who had intended to work after the birth of their child had not done so. As well, many mothers who had returned to work reported reduced job opportunities and career progression. Of concern, 9 out of 10 mothers were unaware of their right to request a change in working arrangements to assist them to care. Changes in workplace support for carers, for example, awareness of legislation and flexible leave entitlements, as well as increased community supports such as appropriate and accessible (child)care, could improve the financial and social circumstances of families and result in significant benefits to Australia's economy.

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Perspectives from the frontlines: palliative care providers' expectations of Canada's compassionate care benefit programme

Recognising their valuable role as key informants, this study examines the perspectives of front-line palliative care providers (FLPCP) regarding a social benefit programme in Canada designed to support family caregivers at end-of-life, namely the Compassionate Care Benefit (CCB). The CCB’s purpose is to provide income assistance and job security to family caregivers who take temporary leave from employment to care for a dying family member. Contributing to an evaluative study that aims to provide policy-relevant recommendations about the CCB, this analysis draws on semi-structured interviews undertaken in 2007/2008 with FLPCPs (= 50) from across Canada. Although participants were not explicitly asked during interviews about their expectations of the CCB, thematic content analysis revealed ‘expectations’ as a key finding. Through participants’ discussions of their knowledge of and familiarity with the CCB, specific expectations were identified and grouped into four categories: (1) temporal; (2) financial; (3) informational; and (4) administrative. Findings demonstrate that participants expect the CCB to provide: (1) an adequate length of leave time from work, which is reflective of the uncertain nature of caregiving at end-of-life; (2) adequate financial support; (3) information on the programme to be disseminated to FLPCPs so that they may share it with others; and (4) a simple, clear, and quick application process. FLPCPs hold unique expertise, and ultimately the power to shape uptake of the CCB. As such, their expectations of the CCB contribute valuable knowledge from which relevant policy recommendations can be made to better meet the needs of family caregivers and FLPCPs alike.

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‘Stroppy’ or ‘confident’? Do carers and professionals view the impact of transition support on young people differently?

The study examined the effects of transition employment support to two cohorts of young people who were in their last year in school or college in 2005/2006 and 2006/2007. This paper reports the views of carers, teachers and support workers of the impact this additional support made to the young people. Analysis of the data reveals a difference between the views of carers and those of professionals. The paper argues that these differences may reflect different understandings of the aim and purpose of transition support and which may make it difficult to achieve a smooth transition for all stakeholders when not taken into account. This may have implications for how to structure and deliver transition support, some of which are being outlined in the discussion.

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Combining work and care: carers' decision-making in the context of competing policy pressures

Issues related to paid work and care are of global importance, reflecting the twin pressures of population ageing and efforts to increase labour market participation. Informal carers of sick, disabled or older people can experience tensions between policies aimed at support for care and support for employment. This article discusses a study of carers’ decision-making around work and care, drawing on evidence from interviews with 80 working-age carers in England. Carers are not homogeneous; their circumstances and needs differ reflecting age, gender, ethnicity, labour market participation, and the condition and/or needs of the person they support. This diversity is illustrated by contrasting rural and urban carers’ decisions and experiences about work and care. Key factors that impact on carers’ decisions are: current and anticipated financial need; the constraints arising from receipt of carers’ and other means-tested income maintenance benefits; personal identity; job opportunities and scope for flexibility; social services provision; carers’ own health. Distance, travel times and transport are unique additional challenges for rural carers who (wish to) work. These difficulties are further intensified when they intersect with other factors such as the Carer's Allowance, the local labour market and social services provision. The findings are evaluated in terms of the adequacy of current government policy measures.

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Carers in your workforce matter

Carers can be defined as someone who ‘spends a significant proportion of their life providing unpaid support to family or potentially friends. This could be caring for a relative, partner or friend who is ill , frail , disabled or has mental health or substance misuse problems.1 Such carers are not to be confused with paid carers (often described as Care workers, Senior care workers, community support, outreach workers and personal assistants). However, those employed in such roles may also be carers in their own time for friends or family. 1 ‘Carers at The Heart of the 21st Century’ Department of Health, 2008. This pack aims to raise awareness of the unpaid carers you will have in your social care workforce, identify what you can do to support them, retain their skills and prevent them having to leave your workforce.

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Sam's Bill

Reports on what the proposed legislation Carers (Equal Opportunities) Bill, will mean for the provision of services to carers. It aims to provide carers who end their caring role with information on opportunities for education, training and employment.

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Masters of their own time? Working carers' visions of retirement

Retirement is often seen as a period dedicated to the enjoyment of one’s own leisure interests after many years of gainful employment. On the other hand, retired people are expected to remain productive by continuing to work, volunteering or by being involved in various caring tasks. When do Finnish working carers plan to retire and how do they envisage the weight of their care commitments related to other activities once they have left full-time work? The 19 female interviewees were born in 1953 or earlier, and they helped their parent(s). They were working full-time or part-time or were semi-retired at the time of the interview. The interviewees were selected from a larger sample of working carers. The future prospects of the interviewees are given in terms of their different visions of retirement activities, and principles of qualitative analysis are applied. Some interviewees indicated that helping their parent(s) would be an essential part of their personal retirement activities, and some of them had chosen or were considering part-time retirement in order to have more time for their parents. However, the interviewees often also stressed that they wanted to have time to pursue their own personal work and leisure interests after leaving full-time employment. Persons approaching their own retirement want to be ‘productive’ but they also want to ensure that they retain a certain amount of individually defined ‘personal-time’. Leaving gainful employment does not necessarily mean leaving ‘productive roles’ as citizens. However, pensioners’ contributions as carers are socially and personally meaningful only if the pensioners’ different valuations regarding the future are respected.

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Gender differences in caregiver burden and its determinants in family members of terminally ill cancer patients

Objective: Female family caregivers consistently report higher levels of stress and burden compared to male caregivers. Explanations for the apparently higher psychological vulnerability of female caregivers are largely missing to date. This study assesses the correlates and determinants of caregiver burden in family caregivers of advanced cancer patients with a specific focus on gender differences.

Methods: Three hundred and eight self-identified main informal caregivers of advanced cancer patients were cross-sectionally assessed using structured questionnaires for caregiver burden and hypothesised determinants of burden, including sociodemographic characteristics, caring arrangements, support needs, hope and coping style. Gender differences and predictors of burden were assessed using t-tests, chi-squared tests and univariate linear regression. Significant univariate predictors were entered in an analysis of covariance separately for men and women.

Results: Burden was significantly higher in women. Hope was the most significant protective factor against burden in both genders, together with perceived fulfilment of support needs. Only in women emotion-oriented coping and being in employment while caring were significantly predictive of higher burden in the multivariate analysis. The model explained 36% of the variance in burden in men and 29% in women.

Conclusion: Psychological support interventions for family caregivers should take gender-specific risk factors into account. Interventions focusing on keeping up hope while caring for a terminally ill family member may be a valuable addition to palliative services to improve support for family carers. Women may benefit from interventions that address adaptive coping and strategies to deal with the dual demands of employment and caring.

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The right to leave

While the regulations allowing staff parental leave are quite specific, those governing other caring responsibilities are less clear. [Introduction]

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Evaluating community-based programs for dementia caregivers: The cost implications of adult day services

This study analyzes the short- (3 months) and long-term (1 year) cost implications of adult day care, a community-based program that has gained attention for its positive impact on dementia caregivers. A variety of costs (e.g., adult day services, formal service use, informal sources of care, employment changes) were estimated for caregivers (n = 367 at 3 months; n = 201 at 1 year). Results found that the daily costs to reduce caregivers' role overload and depression decreased with adult day service utilization over a 1-year period. The findings emphasize that adult day programs are most effective for dementia caregivers who use these services consistently and for longer periods of time. Moreover, practitioners must develop methods to encourage early utilization of adult day services during the caregiving career to increase the range of benefits.

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The pensions cost of caring

Considers how carers of working age incur pension penalties and the ways in which social security legislation has helped or hindered them in acquiring state pensions. Outlines how paid employment and earnings are related to caring responsibilities, discusses the impact of caring on state and private pensions, and considers how pension policy for the future may affect carers.

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The care conundrum

Awareness about the role of carers in society and their contribution to the UK economy has been catapulted to the top of the political agenda in recent months following the launch of the first ever Carers' Strategy. Writing at the time of the document's publication, Imelda Redmond looks in more detail at the make up of this six‐million strong group and explains what her organisation is doing to further promote its rights.

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Supporting carers - dilemmas for care agencies

The National Strategy for Carers has raised the profile of carers needs, but does social services really treat carers as co-workers. The article looks at the impact of other initiatives, such as a Welfare to Work, and the way in which policy and practice may affect attitudes to carers.

Older carers in the UK: who cares?

Long-term care in the UK relies heavily on informal and unpaid carers. Statistical data regarding the number of carers in the 2001 Census compared with the 2011 Census identify an increase of around 600 000 carers. It is also significant that many of these carers are themselves in their late middle age. The reasons for taking on the caring role are varied, but there are significant potential physical, mental and financial issues associated with taking on the caring role. Positive benefits in terms of support provision for the carer do exist, but support services across the UK are variable. This article outlines the problems that may be faced by carers and provides directions for future developments and research into how this situation might be improved.

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Research into Practice

Focuses on a research on older people who combine the caring role with paid employment. Stages of data collection used in the study; Findings of the research concerning employment policies; Reasons behind the decrease in the number of informal carers.

Growing up caring: vulnerability and transition to adulthood: young carers' experiences

When young people care for a parent with illness or disability their lives are different. This study 'examines the young carer's transition to adulthood'. The profile of 60 young carers is described; half were in lone parent families. Almost all were performing domestic tasks as well as providing general and/or personal care; some were also caring for younger children. Education, training and employment opportunities were, in reality, not available to them. Most of the families were outside the labour market and received welfare benefits. Social exclusion and poverty were widespread. One third of the families received no services at all. Caring had both positive and negative effects on the young carers who remained at home longer than their peers but matured earlier and had high levels of life skills and stress. The implications for policy and practice emphasize the need for services for these young carers.

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Economic burden of cancer across the European Union: a population-based cost analysis

Background: In 2008, 2·45 million people were diagnosed with cancer and 1·23 million died because of cancer in the 27 countries of the European Union (EU). We aimed to estimate the economic burden of cancer in the EU.

Methods: In a population-based cost analysis, we evaluated the cost of all cancers and also those associated with breast, colorectal, lung, and prostate cancers. We obtained country-specific aggregate data for morbidity, mortality, and health-care resource use from international and national sources. We estimated health-care costs from expenditure on care in the primary, outpatient, emergency, and inpatient settings, and also drugs. Additionally, we estimated the costs of unpaid care provided by relatives or friends of patients (ie, informal care), lost earnings after premature death, and costs associated with individuals who temporarily or permanently left employment because of illness.

Findings: Cancer cost the EU €126 billion in 2009, with health care accounting for €51·0 billion (40%). Across the EU, the health-care costs of cancer were equivalent to €102 per citizen, but varied substantially from €16 per person in Bulgaria to €184 per person in Luxembourg. Productivity losses because of early death cost €42·6 billion and lost working days €9·43 billion. Informal care cost €23·2 billion. Lung cancer had the highest economic cost (€18·8 billion, 15% of overall cancer costs), followed by breast cancer (€15·0 billion, 12%), colorectal cancer (€13·1 billion, 10%), and prostate cancer (€8·43 billion, 7%).

Interpretation: Our results show wide differences between countries, the reasons for which need further investigation. These data contribute to public health and policy intelligence, which is required to deliver affordable cancer care systems and inform effective public research funds allocation.

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The employment transitions of mid-life women: health and care effects

This article provides information on the movements into and out of paid work by mid-life women. This is a group whose representation in the paid workforce is growing as population ageing proceeds and as educational qualifications expand. It is also a group that will be critical to any labour supply response to the economic challenges posed by population ageing. However, current understandings of the needs and circumstances of mid-life women in paid work are limited. To help address this knowledge gap we use data from the first five waves of the Household, Income and Labour Dynamics in Australia survey (2001–2005) to identify the causal influences of health, care and other factors on the ability of mid-life women to remain in and re-enter paid work. The results show that poor health and/or substantial care roles have a negative impact on the employment chances of this group. However, importantly, there is asymmetry in these health and care effects, in that improvements in health and/or reductions in care roles do not increase the chances of returning to paid work. This finding indicates that many mid-life women who experience poor health and/or undertake large care roles face substantial long-term negative consequences for their employment chances and, thus, their retirement and pre-retirement incomes.

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Conceptualizing breadwinning work

One of the most widely used concepts in the sociology of women and men's work is that of the breadwinner. Given its centrality to and in so many core academic debates, it is surprising that so little attention has been paid to theorizing and operationalizing breadwinning. Breadwinning seems to lie uncontested, with an unproblematic taken-for-granted, common sense meaning in current sociology. The article reviews how breadwinning has been approached in sociology and how it has been operationalized in empirical studies. After identifying different dimensions of breadwinning, the article explores their reliability in a descriptive analysis of women and men's breadwinning work in Europe. It is concluded that the meaning of breadwinning should be debated as routinely as that of caring. [Reprinted by permission of Sage Publications Ltd., copyright 2007 BSA Publications Ltd.]

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Ill health in the family: the intersection of employment and caring across households from four ethnic groups

The employment rates of both disabled people and those from minority ethnic groups are subject to substantial UK policy attention. In this paper we set out to enhance understanding of the relationship with the labour market for those living with long-term illness and their family members. We explore the role of family caring responsibilities and ethnicity in shaping patterns of employment participation. We do this by investigating the experiences of those from four different ethnic groups and using a mixed qualitative and quantitative approach.

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Caring, employment and health among adults of working age: evidence from Britain and Belgium

Background: For those of working age, results are inconclusive when exploring the health impact of providing care. Moreover, population data is lacking and the impact of welfare policies on the caregivers’ health has not been yet analysed.

Methods: Associations between general health and care giving, adjusting for differences in employment and socio-economic position, were explored for working age adults using logistic regression models. Data came from the 2001 British census (n = 1 361 222, 5% sample) and from the 2001 Belgian census (n = 4 368 637). The final model was stratified by employment status, given the significant interaction between caregiving and employment status.

Results: In both countries, when compared with those providing no care, men and women providing ≥20 h of care per week had an increased risk of poor health. This increased risk was attenuated after adjustment for socio-economic position and particularly after adjustment for differences in employment status. However after stratifying by employment status, a dose response relationship between time spent caring and poor health was observed for the employed and unemployed, but not for the economically inactive.

Conclusions: Despite contrasting welfare systems, employment status plays an important role in the association between caring and health in both countries. For the economically active, providing more care increases the risk of poor health. Whilst formal employment may be good for general health, having to informally care whilst in formal employment may have a detrimental health impact.

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Supported housing for people with Down's syndrome

There has been limited research on the attitudes of family carers and the part they play in helping people with a learning disability choose accommodation. A postal questionnaire was sent to family carers of people with Down's Syndrome, to identify their attitudes to supported living, their experience of the application process, and the support they provided to residents. It was found that main family carers of people with Down's Syndrome in supported living were generally satisfied with the housing and support provided, particularly with respect to activities of daily living. There was less satisfaction with the help received with managing finance and employment. There had been a mean of 2 years delay between application and securing accommodation. The large number of people providing care at home who wished their family-member to move into supported living suggests that there is a large unmet need for this type of accommodation. Almost all family carers continued to provide support after participants moved into supported living, particularly with more complex tasks such as financial management, and with responding to crises and ill-health. This indicates that people with a learning disability in supported living who do not have active contact with their family may be vulnerable financially and less likely than others to receive help at times of crisis. The proportion of residents in supported living who experience such problems will increase as family carers die or otherwise become too infirm to continue to provide support.

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Valuing people now: a new three-year strategy for people with learning disabilities

Valuing people now sets out the Government's strategy for people with learning disabilities for the next three years following consultation. It also responds to the main recommendations in Healthcare for All, the independent inquiry into access to healthcare for people with learning disabilities.

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Measuring the impact of caregiving on informal carers: a construct validation study of the CarerQol instrument.(Research)(Report)

Background: Informal caregivers provide a significant part of the total care needed by ill or disabled persons. Although informal care is often the preferred option of those who provide and those who receive informal care, caring can nevertheless be very straining. This study investigates construct validation of an instrument of the impact of caregiving, the CarerQol.

Methods: Data was collected among adult caregivers (n = 1,244) selected from the general population using an online questionnaire in October 2010, in the Netherlands. The CarerQol measures and values the impact of informal care. The CarerQol measures subjective burden (CarerQol-7D) and well-being (CarerQol-VAS). Construct validation comprised clinical, convergent and discriminative validity tests.

Results: Clinical validity was supported by statistically significant associations of CarerQol-VAS and caregivers’ health, income and employment status, care recipients’ health, and the relationship between caregiver and care recipient. Convergent validity was supported by positive associations of CarerQol-VAS with the two positive CarerQol-7D dimensions (fulfillment and support) and negative associations with the five negative CarerQol-7D dimensions (relational problems, mental health problems, problems combining daily activities, financial problems and physical health problems). Moreover, CarerQol-VAS was negatively associated with other instruments measuring caregiving burden.

Conclusions: Construct validity tests in a large, heterogeneous sample of caregivers show that the CarerQol validly measures the impact of caregiving. The CarerQol can be used in informal care research and economic evaluations of health care interventions. Hence, its use can facilitate informed decision making in health care.

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Family, work and quality of life: changing economic and social roles through the lifecourse

This article reports research funded as part of the recent ESRC Growing Older initiative. The project ‘Family, Work and Quality of Life’ explored changes in economic and social roles across four birth cohorts passing through mid-life (45–59/64 years) in Britain. The relationship between multiple role responsibilities and a range of indicators of quality of life, including material resources, health and engagement in social activities were investigated. The research was based upon secondary analysis of four different surveys: the 2000 British Household Panel Study, the 1994–95 Family and Working Lives Survey, the 1985, 1990, 1995, and 2000 General Household Surveys, and the longitudinal Retirement Survey (1988/89 and 1994). A particularly interesting finding is that being ‘caught in the middle’, in terms of having simultaneous care-giving responsibilities to dependent children and frail parents whilst in paid work, has been atypical. Only one-in-nine British women, and one-in-ten British men, aged 45–49 years (born in 1941–45) occupy all three roles concurrently, but multiple role occupancy is increasing across cohorts, particularly the combination of caring and paid work. Role occupancy significantly affects the accumulation of pension entitlements (particularly second-tier pensions), with the effect that many women who have fulfilled the important social roles of carer and parent will face a low income in old age. Where adverse health outcomes were found, parental role in mid-life was most frequently associated with such poor health, suggesting that continued parental demands in mid-life may have negative health consequences.

 
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Impacts of Informal Caregiving on Caregiver Employment, Health, and Family

As the aging population increases, the demand for informal caregiving is becoming an ever more important concern for researchers and policy-makers alike. To shed light on the implications of informal caregiving, this paper reviews current research on its impact on three areas of caregivers’ lives: employment, health, and family. Because the literature is inherently interdisciplinary, the research designs, sampling procedures, and statistical methods used are heterogeneous. Nevertheless, we are still able to draw several important conclusions: first, despite the prevalence of informal caregiving and its primary association with lower levels of employment, the affected labor force is seemingly small. Second, such caregiving tends to lower the quality of the caregiver’s psychological health, which also has a negative impact on physical health outcomes. Third, the implications for family life remain under investigated. The research findings also differ strongly among subgroups, although they do suggest that female, spousal, and intense caregivers tend to be the most affected by caregiving.

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Gender, caring, part time employment and work/life balance

This paper examines the influence of demographic and organisational factors on the ability of employees to balance work and personal life responsibilities. Specifically, the paper addresses if gender, childcare, eldercare and part time work impacts levels of perceived work/life balance of office based employees. A mixed method quantitative and qualitative approach was employed to investigate the research objectives. Survey data was collected from 710 employees in six divisions of a large Australian organisation followed by a series of semi-structured focus group interviews. Contrary to previous research the results indicate that male employees had greater difficulties balancing work and non-work responsibilities than their female counterparts. However, the results indicate that the presence of children living at home (childcare responsibilities) contributed to lower levels of work/life balance for both male and female employees. Part time work generally had a positive impact on employees. As with all cross-sections [...]

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Impact of early dementia on caregivers: a review

Objective: When it comes to dementia, caregiving can have adverse effects on the psychological and physical health of the informal caregiver. As yet, little is known about the impact of caring for a young dementia patient. This review provides an overview of the literature concerning the impact of early onset dementia (EOD) on informal caregivers and on children of EOD patients. The available literature comparing the impact on EOD and late onset dementia (LOD) caregivers will also be provided.

Methods: PubMed, Psychinfo, and Cinahl were searched for articles that considered the psychological or psychosocial impact of EOD on informal caregivers and children. The methodological quality of the studies was assessed in order to make better judgments about the value of each article.

Results: Seventeen articles were included, of which the overall methodological quality was limited. The results showed that EOD caregivers experienced high levels of burden, stress, and depression. When compared with LOD caregivers, results were inconclusive. Furthermore, the caregivers of EOD patients experienced a variety of psychosocial problems, including relational problems, family conflict, problems with employment, financial difficulties, and problems concerning diagnosis.

Conclusions: Whether there is a difference in impact between EOD and LOD on caregivers is still unclear. The studies conducted are methodologically too limited to answer this question. Nevertheless, it is clear that EOD caregivers do seem to experience high levels of psychological suffering and specific problems related to their phase in life.

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Why the NHS must look after its hidden workers

Carers play a central role in many healthcare users' lives. Although services are recognising that they must be valued and supported, there is much more to be done to ensure this unpaid workforce's wellbeing, reports Jennifer Taylor. 

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Overcoming barriers: unpaid care and employment in England

An estimated 315,000 unpaid carers aged 16 to 64 in England, predominantly women, have left full-time or part-time employment to provide care. n A key threshold at which carers in England are at risk of leaving employment occurs when care is provided for 10 or more hours a week, a lower threshold than previously thought. n The public expenditure costs of carers leaving employment are estimated at £1.3 billion a year, based on the costs of Carers Allowance and lost tax revenues on foregone incomes alone. n Access to publicly-funded services by working carers is low, with only 4% of carers working full-time, and 6% working part-time, currently offered an assessment or review. n There is little evidence that councils systematically use services for the cared-for person as a means of supporting carers whose employment is at risk. n Councils target their support at people providing care for 35 hours a week or more and are therefore not in contact with large numbers of carers whose employment is at risk. n Despite an increasing emphasis in government policy on ‘replacement care’, the study has not found any scientific papers on the effectiveness of services for the cared-for person (‘replacement care’) as a means of supporting working carers in England. n There is a need for further evidence to support the development of policies around ‘replacement care’ for working carers in England.

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Carers in the region: a profile of London

The Carers in the Region profiles have been commissioned by the Department of Health to provide information about carers at the regional level for each of the 9 English regions. These profiles include data on the number and characteristics of carers in each region as well as information about carer health and well-being. This profile provides information covering the London region. In 2001 there were 606,861 carers in London, which is 9% of the region’s population. This profile provides statistics and information relating to: the characteristics of carers; the demand for care; personalisation and local services; carers’ health and wellbeing; support for carers; carer’s access to work; carers and employment; young carers; and older carers. It concludes with a description of future challenges for care and support in the London region.

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The diversity of staff supporting family carers in England: findings from an analysis of a national data set

Little is known about those employed to support family carers of disabled people or those with longterm care needs. The term ‘carer’ is used in England to refer to family members and others who provide unpaid regular and substantial support to adults with disabilities, including older people and others unable to live independently. Among the wider social care workforce some staff are employed to provide support for these carers, but little is known about the composition and characteristics of this group of staff. The findings reported in this article are derived from quantitative secondary analysis of the National Minimum Data Set for Social Care (NMDS-SC; n = 499 034), which collects data from social care employers and reports to Skills for Care. This data set includes information about the characteristics of the workforce employed to support carers and the organisations that employ them to do so. Our analysis showed that this support workforce is mostly female, with a large number of part-time employees who are based in organisations with significantly higher turnover and vacancy rates than other organisations which provide social care. Staff who support family carers appear to be better qualified and to have longer experience within the care sector than other social care workers. From these findings we conclude that this support workforce may be affected by staff shortages themselves, and that high staff turnover rates may undermine the continuity of support given to family carers, leading to problems for existing staff. We argue that developing the potential of social care staff to support family carers requires specific attention from social care employers and policy makers.

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P-443 - Social inclusion for the mental health of informal caregivers of Alzheimer disease's patients: The role of reemployment strategies of socially excluded

Alzheimer's disease (AD) is one of the leading causes of dependency among older adults and of institutionalization in Europe. The number of people with AD is estimated in 10 million people and the cost of the disease has been recently estimated in 100.000 million of euros per year in the European Union (European Brain Council, 2011). There is nowadays no effective treatment of the disease. Currently, care of AD patients is primary sustained by informal caregivers who suffer burden as a result of their care responsibilities, and consequently are mainly affected by mental health problems (depression, anxiety, etc). This burden is also related with a premature institutionalization and violence against AD patients. In this sense, effective solutions are needed in order to fight against the mental health problems of informal caregivers. Regarding this, a social innovation research, funded by the Progress Programme of the DG of Employment, Social Affairs and Inclusion of the European Commission, is being developed currently in France and Spain, where the authors are aimed to demonstrate how a specialized formal training in AD addressed to people in risk of labour and social exclusion could improve the quality of life of AD patients and reduce the informal caregiver burden. The results of this research is specially relevant to help to reduce mental health problems of the informal carers of AD patients, but also in terms of intervene on the cognitive skills of the persons affected, as well as to allow the employment of socially excluded people.

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Reconciling employment with caring for a husband with an advanced illness

Background: Little is known about combining work with caring for a person with advanced illness. This is important given the increasing number of women in the workforce and current policy seeking to increase care in the community. The aim of this paper was to explore the meaning of work for women caring for a husband with an advanced illness and the consequences of combining these two roles.

Methods: A purposive sample of 15 carers was recruited from a hospital and from the community, via the patients they cared for. Their illnesses included chronic obstructive pulmonary disease, cancer, motor neurone disease, and heart failure. Data were collected through semi-structured, in-depth interviews that were tape-recorded and transcribed verbatim. A Grounded Theory approach was used and case studies were developed. NVivo software facilitated the management and analysis of the data.

Results: Caring presented challenges to carers' work life. It diminished productivity or the quality of work, and led to missed opportunities for promotion. Work had an effect on the quality of care and the relationship with the patient, which eventually led to work being given up for caring. Three carers resisted the pressures to give up work and used it as a coping strategy.

Conclusion: A positive choice to remain in employment does not necessarily signal reluctance to care. Caring arrangements need to be understood from the common and separate interests of carers and the people they support.

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Supporting carers to care: forty-second report of session 2008-09: report, together with formal minutes, oral and written evidence

On the basis of a report published in February 2009 by the Comptroller and Auditor General, the House of Commons Public Accounts Committee examined the Department of Work and Pensions (DWP) on the steps it has taken to improve the delivery of benefits to carers and the support it provides to help them find employment. The Committee found that the DWP's approach is complex, that their communications can be lengthy and confusing, that it has no reliable estimate of the take up rate for Carer's Allowance and that employment support provided is not well-suited to carers' needs.

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Consumers in charge of care: The Dutch personal budget and its impact on the market, professionals and the family

One of the icons of the Dutch welfare state reforms is the Personal Budget. With the introduction of this budget, care patients now have become consumers. They can manage their own budget and employ a care worker who cares according to the cared-for's wishes. The Personal Budget intends to create a market of care, as well as a shift of balance of power from professionals to care receivers. In practice, the market has not come yet. Instead, the majority of budget holders employ a family member. This is important as it gives recognition to informal carers. On the other hand, this may hamper the employment career of people with care responsibilities as they are likely to be constrained in their care relationship. Another caveat is that the Personal Budget undermines the professionalisation process of care workers. When consumers are in charge, care workers are no longer the custodians of their professional development. This may have unwelcome consequences for the quality of care in the long term.

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Caring for older adults: the benefits of informal family caregiving

Recent literature emphasizes the burdens of caregiving, but there has been limited focus on benefits accrued by family members who care for older adults. This article describes phase three of a research study of employed caregivers in the workplace. Phase three of the study was a caregiver support group. Data from the support group meetings were content analyzed and interpreted using a lifespan perspective. Four themes relevant to caregiver benefits emerged: celebrating the small things, resolving past hurts and conflicts, developing personal strength and aging readiness, and experiencing the older person's full life. The shift from perceived burden to perceived benefit occurred gradually among support group members. Routine and intentional assessment of caregiving benefits or rewards within a supportive milieu may mitigate burden among people who care for older family members.

Reduction of caregiver burden in Alzheimer's disease by treatment with galantamine

Alzheimer's disease is a progressive condition characterized by a loss of cognition, altered behavior, and a loss of functional ability, such as bathing, dressing, toileting, and organizing finances. Family and friends provide nearly three quarters of all care for patients with Alzheimer's disease. This informal care results in significant burden to caregivers. Caregiver burden is the set of physical, psychological or emotional, social, and financial problems that family members may experience when caring for impaired older adults. Caregivers of Alzheimer's disease patients report higher rates of physical symptoms, mortality, depression, and fatigue, as well as adverse effects on employment compared with those who are not caregivers for Alzheimer's disease patients. In many cases, the same family members are responsible for both out-of-pocket expenditures and caregiving duties. For this article, a MEDLINE search using the key words “caregiver and Alzheimer's disease” and “cost and Alzheimer's disease” was performed. The purpose of this article is to review the literature on caregiver burden, the components of caregiver burden, effects of caregiving on the health of caregivers, the cost of Alzheimer's disease on the caregiver and society, and the benefits attainable with treatment.

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The same as you? A review of services for people with learning disabilities

This review began by looking at services, especially in social and healthcare, and their relationship with education, housing, employment and other areas. However, its focus changed to include people’s lifestyles. That is what matters. Services are there to support people in their daily lives. The Learning Disability Review has succeeded in involving many of those with an interest, especially those who use services and their carers, at different points in the journey. The focus of the report is consistent with existing policies on community care. ‘Modernising Community Care’ wants better results for people through quicker and better decision-making, greater emphasis on care at home and agencies working more closely together.

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Configurations of care work: Paid and unpaid elder care in Italy and the Netherlands

Most current sociological approaches to work recognise that the same activity may be undertaken within a variety of socio-economic forms - formal or informal, linked with the private market, public state or not-for-profit sectors. This article takes care of the elderly as an exemplary case for probing some of the linkages between paid and unpaid work. We attempt to unravel the interconnections between forms of care work undertaken in different socio-economic conditions in two settings, the Netherlands and Italy. The research is part of a broader programme concerned with differing interconnections and overlaps between work activities. In this article, we are concerned with: 1) how paid and unpaid care work map on to four ‘institutional’ modes of provision - by the state, family, market, and voluntary sector; and 2) with the configurations that emerge from the combination of different forms of paid and unpaid work undertaken through the different institutions. Despite the centrality of family-based informal care by women in both countries, we argue that the overall configurations of care are in fact quite distinct. In the Netherlands, state-funded care services operate to shape and anchor the centrality of family as the main provider. In this configuration, unpaid familial labour is sustained by voluntary sector state-funded provision. In Italy, by contrast, there is significant recourse to informal market-based services in the form of individual migrant carers, in a context of limited public provision. In this configuration, the state indirectly supports market solutions, sustaining the continuity of family care as an ideal and as a practice.

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Assistance received by employed caregivers and their care recipients: Who helps care recipients when caregivers work full time?

Purpose: This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients. Design and Methods:Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services.  Results: Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers. Implications:Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time.

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Informal Caring and Labour Market Outcomes Within England and Wales

Drinkwater S. Informal caring and labour market outcomes within England and Wales, Regional Studies. Within-country analysis of the links between informal care provision and labour market outcomes has been limited even though there are wide regional variations in informal caring. This issue is important because areas with the highest levels of informal caring typically have relatively low economic activity and employment rates. Despite the wide variations in informal care provision, labour market outcomes for different care categories are not found to vary markedly across England and Wales. However, labour market outcomes for males, as well as females, are heavily influenced for those who provide high levels of caring, especially in the South Wales Valleys.

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Co-production and participation: paying people who receive benefits

This updated briefing looks at benefit changes that can make it easier for service users and carers to get involved in paid participation for social care consultations and events. It includes details of changes to simplify the process secured through legislation in 2009 and further legislative changes in 2013 and 2014. The briefing outlines the levels of payment for involvement that people who use services can accept when in receipt of the following benefits: Incapacity Benefit or Employment Support Allowance; Income Support, Jobseeker’s Allowance or Pension Credit; Carer’s Allowance; and Universal Credit. It also explains the circumstances when repaid expenses are ignored by benefit rules. A list of further reading is included. [This publication was originally published as 'Reimbursements and payments for service user involvement' in 2011].

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