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Sandwich carers

The following resources examine the specific situation of carers with simultaneous caring responsibilities for parents and children, and for managing care alongside other demands.

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).

The importance of family members caregiving for older adults during COVID-19

Presents an argument that one of the ways that we can more properly value family caregivers is by understanding that employment policies have implications for families’ and older adults’ well-being, and that policies targeted at families of all forms can affect the health, employment, and general well-being of the nation.

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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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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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Informal care provision across multiple generations in China

With increasing life expectancy, changes in family structure and, most recently, the relaxation of the hitherto strict family planning policies, understanding how mid-life individuals support multiple generations, particularly their older parents and younger grandchildren, is of increasing research and policy significance in China. This paper analyses data from the 2011 China Health and Retirement Longitudinal Study (CHARLS) to examine the characteristics of Chinese mid-life individuals aged 45–64 who are potentially being ‘sandwiched’ between providing care to older parents/parents-in-law and/or younger grandchildren (under age 16). Binary logistic and multinomial regression models shed light on the factors associated with providing support to one generation or multiple generations. The results highlight that amongst the Chinese mid-life sandwich generation, 58 per cent only provide care to their young grandchildren, 23 per cent only provide care to their parents/parents-in-law, whilst 15 per cent are simultaneously supporting both generations. Rather than acting as competing demands upon the mid-lifers’ time, the multivariate analysis provides evidence that the provision of intergenerational care is complementary, with caring for grandchildren increasing the probability of also supporting one's parents/parents-in-law, and vice versa. However, an increase in the number of younger grandchildren has a negative impact on the care provided to older parents/parents-in-law, indicating that at higher care intensities there may be competing demands across the generations.

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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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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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Physical and mental health of Chinese grandparents caring for grandchildren and great-grandparents

The increasing worldwide prevalence and intensity of grandparenting has attracted an attention to its health implications for caregivers against the backdrop of population aging. Thanks to prolonged life expectancy and reduced infant mortality, extended families that comprise four generations, co-residential or not, are no longer rare in China. The current study examines health consequences when Chinese grandparents provide care to not only grandchildren but also their own elderly parents or parents-in-law (i.e., great-grandparents). Drawing on data from the 2011–2013 China Health and Retirement Longitudinal Study (CHARLS), mental health was captured by levels of life satisfaction and depressive symptoms, and physical health was measured by levels of high sensitivity C-reactive protein (CRP), hypertension, high-risk pulse rate, and diabetes. Overall grandparents who cared for grandchildren only had better mental and physical health, compared with non-caregivers. There was some evidence that the 'sandwich' grandparents who cared for both grandchildren and great-grandparents reported greater life satisfaction, fewer depressive symptoms, and reduced hypertension compared with non-caregivers. The health advantage of caregiving was most pronounced in urban grandfathers whose caregiving conformed to the norm of filial piety and who did so most likely to seek emotional reward instead of an intergenerational time-for-money exchange. In contrast, rural grandmothers were the most vulnerable group and their health disadvantage seemed to arise from caring for great-grandparents. These findings highlight the importance of rural-urban context and gender role in studying the health effects of intergenerational caregiving on Chinese grandparents. • About 30% of the Chinese elderly are grandparents in four-generation families. • The majority of them care for grandchildren, great-grandparents, or both. • Urban grandfathers enjoy health benefits from intergenerational caregiving. • Rural grandmothers suffer health risks from intergenerational caregiving.

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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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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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Health Behavior Among Men With Multiple Family Roles: The Moderating Effects of Perceived Partner Relationship Quality

Men in the United States are increasingly involved in their children's lives and currently represent 40% of informal caregivers to dependent relatives or friends aged 18 years and older. Yet much more is known about the health effects of varying family role occupancies for women relative to men. The present research sought to fill this empirical gap by first comparing the health behavior (sleep duration, cigarette smoking, alcohol consumption, exercise, fast food consumption) of men who only occupy partner roles and partnered men who also fill father, informal caregiver, or both father and informal caregiver (i.e., sandwiched) roles. The moderating effects of perceived partner relationship quality, conceptualized here as partner support and strain, on direct family role-health behavior linkages were also examined. A secondary analysis of survey data from 366 cohabiting and married men in the Work, Family and Health Study indicated that men's multiple family role occupancies were generally not associated with health behavior. With men continuing to take on more family responsibilities, as well as the serious health consequences of unhealthy behavior, the implications of these null effects are encouraging - additional family roles can be integrated into cohabiting and married men's role repertoires with minimal health behavior risks. Moderation analysis revealed, however, that men's perceived partner relationship quality constituted a significant factor in determining whether multiple family role occupancies had positive or negative consequences for sleep duration, alcohol consumption, and fast food consumption. These findings are discussed in terms of their empirical and practical implications for partnered men and their families.;

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People caring for older and younger relatives at higher risk of mental illness

More than 1 million people who are caring for children and older relatives are at a significantly higher risk of mental health problems and more likely to be struggling for money than the general population, official data has revealed.

The “sandwich generation” who find themselves squeezed between older and younger dependents account for 1.3 million people, according to the Office for National Statistics (ONS). It found the more care people give to both older and younger relatives simultaneously, the more likely they are to report symptoms of mental ill health.

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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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Financial Care for Older Adults With Dementia: Characteristics of Adult Children Caregivers

This article describes an examination of the sociodemographic characteristics of adult children, particularly Baby Boomer caregivers, who provide financial care to older parents with dementia. The sample including 1,011adult children dementia caregivers aged 50 to 64 years is selected from a nationally representative sample in the 2010 Health and Retirement Study. Exact logistic regression revealed that race, provision of financial assistance to caregiver children, and the number of their children are significantly associated with financial caregiving of parents. Non-White caregivers are more likely to provide financial care to their parents or parents-in-law with dementia; those who have more children and provide financial assistance to their children are less likely to provide financial care to parents with dementia. The current findings present valuable new information on the sociodemographic characteristics of adult children who provide financial assistance to parents with dementia and inform research, programs, and services on dementia caregiving.

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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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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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Role change as breadwinner in cancer caregiving

Introduction:  Indian families are known for adopting the role of caregiver naturally when someone in the family falls ill to cancer. Although there were strong family structure and system existed here, now the changing family pattern and structure are challenging the role of cancer caregiving as well. Objective:  This study analyses the life situation of caregivers of cancer survivors during the course of treatment and attempts to explore the areas of interventions for caregivers themselves. Methods: A descriptive research design was adopted for the study. A sample of 40 respondents was chosen for the study through purposive sampling technique. Results: Majority of the caregivers were females (75%) and fell into the age group of 35 to 45 years (65%). The education among the caregivers was varying between illiteracy to postgraduation. Majority of 95% of them adapted the dual role voluntarily and 85% of them felt that they were finding it very difficult to cope with the dual responsibility. About 60% of them felt that they would fail in their roles and were not satisfied with their performances dually. Conclusion: Adaptation to a dual role involves time factor and as part of care to the caregiver, a guided interaction and orientation towards managing these roles would help them better ways to adapt. Given the scarcity of support system on Indian settings, the caregivers who do dual role have huge responsibility and challenges to deliver quality caregiving and fulfill their other roles as well. It is the duty of the complete health care system to seriously take this into consideration and to act on it. 

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Parents of Adults with Intellectual and Developmental Disabilities (IDD) and Compound Caregiving Responsibilities

In some cases, parents caring for an adult child with an intellectual and/or developmental disability (IDD) must balance this with caregiving for another family member. This dual responsibility, referred to as 'compound caregiving', may contribute to increased feelings of distress, or change their perceived ability to care for their child. The current study examined how compound caregivers differ from other parents of adults with IDD, and whether compound caregiving is significantly associated with family distress. Data was available for 199 parents aged 38 to 91 years who were seeking adult services for their son or daughter with IDD. Parents completed a mailed questionnaire and telephone interview in which they indicated compound caregiver responsibilities. Parents identified as compound caregivers were then compared to those who were not in terms of family characteristics, as well as parental perceptions of burden and mastery, and family distress as measured by the Revised Caregiver Appraisal Scale and the Brief Family Distress Scale, respectively. Nearly half of the parents reported being compound caregivers. The demographic profile of these parents was no different from that of the other parents but their children were slightly younger. Compound caregiving was significantly associated with parental perceptions of burden and mastery and family distress. Demands outside of caring for an adult child with IDD can negatively influence family functioning and must be included as part of caregiving assessments.

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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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The 'sandwich generation': Women caring for parents and children

Data from the National Longitudinal Survey are used to estimate the number and characteristics of women 45 to 56 years old who care for both their children and their parents; these women transfer a significant amount of money to their children and time to their parents.

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Talking about care: two sides to the story

Despite its familiarity, the realities of care are both complex and contested. This book offers a unique approach to scrutinising the co-existence of both care and abuse in relationships. It demonstrates ways of increasing critical reflexivity when working with people involved in difficult care relationships. The book emphasises that when talking about care, we need to care about talk. Discourse analysis is introduced as a method of investigating relationships, policy and literature in informal care. Analytic tools are considered alongside case studies to illustrate how both carer and caree construct their relationship and account for difficulties with each other. The book addresses key questions, including: What can we learn by muddying the false polarities between `care/abuse' and `carer/caree'? How do carers and carees use life histories to explain troubled relationships? What can discourse analysis add to how we make sense of individual carer/caree accounts? How can health and social care practitioners [...]

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Personalisation for older people: supported housing

Lifelong couple Brian and Olive live in specialist supported accommodation. Brian has been Olive’s carer since she developed dementia. The housing complex where they live is managed as a community in which each individual is valued for the contribution they can make. The manager explains how important it is for carers as well as the person with dementia to maintain their individual identity and role as partner. The value of having a flexible, responsive individual care plan is also emphasised in the film. Richard, whose mother has dementia, explains how important it was for his mum and dad to be able to stay living together, even when his mum’s needs increased. The film concludes by stating that having well trained and selected staff is vital for achieving personalisation.

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The impact of TCARE® on service recommendation, use, and caregiver well-being

Purpose of the Study: Findings are reported from a study that examined the effects of the Tailored Caregiver Assessment and Referral (TCARE®) protocol, a care management process designed to help family caregivers, on care planning and caregiver outcomes. Design and Methods: A longitudinal, randomized controlled trial was conducted with 97 caregivers enrolled in a demonstration project in Georgia. Data included on care plans pertaining to service recommendations, compliance, and use were reviewed. Caregiver identity discrepancy, objective burden, relationship burden, stress burden, and depressive symptoms were assessed up to 4 times during a 9-month observation period. Chi-square tests, independent samples t tests, random effects regression growth curve analysis, and random intercept regression analysis were conducted. Results: A greater variety of services were recommended to and used by caregivers in the intervention group than in the control group. Caregivers in the intervention group had lower caregiver identity discrepancy, stress burden, and depressive symptoms over time than caregivers in the control group. Implications: Study findings provide initial support for the merits of the TCARE® protocol as a process that can be used to effectively target services to individual caregivers’ needs.

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The influence of social support on caregiver coping

Investigations into the act of proving care to a dementing family member typically approach the phenomenon from a stress/burden paradigm. Many studies have sought to highlight the relationship between of a range of dementia care factors (such as illness duration, patient symptoms/characteristics, service provision, etc.) and the experience of caregiver stress. Caregiving a spouse with dementing illness is complex and multidimensional (Gubrium, 1995) it is therefore not surprising that the vast majority of stressor-based approaches, though very revealing, have been largely equivocal in their findings. The relationship between the social support of family and friends and caregiver coping is no exception and therefore remains essentially unclear particularly in terms of its contribution in ameliorating stress (Thompson et al, 1993). Caregiver studies do however consistently highlight the pathogenic qualities of coping with an experience in which 'families are faced with often overwhelming and uncontrollable stress than can take a toll on their emotional health and well-being' (Zarit et al, 1998; Bourgeois et al, 1996). This article, emanating from a PhD study into caregiver coping (Upton, 2001), illuminates the study of caregiving from a different perspective. It highlights and describes how phenomenological exploration deepens our understanding of how and why spouse caregivers cope and uses the influence of social support as an exemplar of the value and need for such exploration both for its own sake and also to inform service providers. The results revealed a universal phenomenon of psycho-physical distancing by family and friends affecting all forty-six spouse caregivers included in this study. The implications of these finding are discussed along with what constituted social support for these carers. Other phenomenological insights are revealed, not least how the individual caregiver's relationship to time, space and their own identity shaped their caregiving experiences.

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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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Between elderly parents and adult children : a new look at the intergenerational care provided by the 'sandwich generation'

The ‘sandwich generation’ has been conceptualised as those mid-life adults who simultaneously raise dependent children and care for frail elderly parents. Such a combination of dependants is in fact very unusual, and the more common situation is when adults in late mid-life or early old age have one or more surviving parents and adult but still partly dependent children. It can be hypothesised that for parents in this pivotal position, the demands from adult children and from elderly parents compete, with the result that those who provide help to one are less likely to provide help to the other. An alternative hypothesis, however, is that family solidarity has an important influence but is not universal, so that some pivotal-generation parents engage in intergenerational exchange in both directions, and there is a positive association between helping parents and helping children. To investigate this question, the paper presents an analysis of data from two broadly comparable national surveys, in Great Britain and the United States, on the care provided by women aged 55–69 years to their descendent and ascendent relatives. The results show that around one-third of the women reported providing help to members of both generations, and that around one-fifth provided support to neither. They broadly support the solidarity hypothesis, but provide some evidence that having three or more children is associated with a reduced likelihood of providing help to a parent.

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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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Cohort study of informal carers of first-time stroke survivors: profile of health and social changes in the first year of caregiving

Informal carers underpin community care policies. An initial cohort of 105 informal live-in carers of new stroke patients from the South Coast of England was followed up before discharge, six weeks after discharge and 15 months after stroke with face-to-face interviews assessing physical and psychological health, and social wellbeing. The carer cohort was compared to a cohort of 50 matched non-carers over the same time period. Carer distress was common (37–54%), started early on in the care-giving experience and continued until 15 months after stroke. Carers were 2.5 times as likely as non-carers to have significant psychological distress. Presence of early distress predicted 90% of those significantly distressed 15 months after stroke. Female carers were likely to develop distress earlier than male carers and in anticipation of the care-giving situation. Male carers developed similar levels of distress but only once the care-giving situation became reality. Further research is needed to establish ways to screen for psychological distress early after onset of caregiving, to find ways to tailor proven support interventions to the individual carer, and to evaluate the effect of early detection and support provision on later carer distress.

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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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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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'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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Support groups for dementia caregivers Predictors for utilisation and expected quality from a family caregiver's point of view: A questionnaire survey PART I

Background: Support groups have proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors that influence utilisation or quality expectations of family caregivers. These questions are addressed in the following paper.

Methods: The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in Germany. Qualitative and quantitative data from 404 caregivers were analysed using content analysis and binary logistic regression analysis.

Results: The only significant predictor for utilisation is assessing how helpful support groups are for the individual care situation. Family caregivers all agree that psycho-educative orientation is a priority requirement.

Conclusions: In order to increase the rate of utilisation, family caregivers must be convinced of the relevant advantages of using support groups. Support groups which offer an exchange of experiences, open discussion, information and advice meet the requirements of family caregivers.

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Principles of participation

The video explores how service user and carer participation has become an increasingly important part of how adult social care services are developed and delivered. The video uses the example of how Manchester adult social care services are involving service users and carers. The film highlights the jigsaw model of participation, this connects four aspects of participation: Culture, Structure, Practice and Review. For further details about the jigsaw model see SCIE Guide 17. Participation operates at many different levels, from individual care packages to service design and commissioning. Any organisation wishing to develop meaningful participation must first develop a positive attitude towards the process. The process of meaningful participation can represent a real change from the previous process of service delivery and can help with the Putting People First agenda. There is a need to embed the idea of participation through all levels of social care. Service users and carers must feel that they have a stake in the service they receive.

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Simultaneous care for parents and care for children among mid-life British women and men

This article investigates care provided to parents and parents-in-law by mid-life adults with dependent children at home. Data from the General Household Survey are used first to estimate the prevalence of this 'two-way' care over the past decade, and second to develop forecasts of two-way care for a generation of women who have just finished their childbearing years. Having a higher education qualification is associated with later ages both of caring for parents and of having children at home. Increasingly late first childbearing, however, points towards a potentially greater caring 'squeeze' for higher qualified women, with a little over one in ten at age 45 projected to be caring for a parent while still having a child under 18 in the household. 

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The quality of life of female informal caregivers: from Scandinavia to the Mediterranean Sea

We analyse the impact of the provision of care on the health and quality of life (QoL) of adult female informal caregivers using a representative sample drawn from the survey of health, ageing and retirement in Europe (SHARE). We match each informal caregiver with a non-carer using propensity score matching and test whether matched individuals differ on self-assessed health and a functional indicator of QoL and whether this relationship differs across European regions. We find a North–South gradient both for self-assessed health and QoL, and our results show that the provision of caregiving to close relatives in Europe impacts on the caregivers’ QoL and health in a way that depends on their geographical location, the degree of formal care and specific cultural and social factors of the area. We find that informal caregiving is a complex phenomenon which may bring both psychological rewards and distress to providers of care and this complexity, along with the geographical gradient highlight the importance of ensuring that policies match the needs of individual carers in their own geographical areas and cultural contexts.

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Socioeconomic and demographic factors modify the association between informal caregiving and health in the Sandwich Generation

Background Nearly 50 million Americans provide informal care to an older relative or friend. Many are members of the "sandwich generation", providing care for elderly parents and children simultaneously. Although evidence suggests that the negative health consequences of caregiving are more severe for sandwiched caregivers, little is known about how these associations vary by sociodemographic factors. Methods We abstracted data from the Behavioral Risk Factor Surveillance System to determine how the association between caregiving and health varies by sociodemographic factors, using ordinal logistic regression with interaction terms and stratification by number of children, income, and race/ethnicity. Results The association between informal caregiving and health varied by membership in the "sandwich generation," income, and race/ethnicity. This association was significant among subjects with one (OR = 1.13, 95% CI [1.04, 1.24]) and two or more children (OR = 1.17, 95% CI = 1.09, 1.26]), but not in those without children (OR = 1.01, 95% CI [0.97, 1.05]). Associations were strongest in those earning $50,000-$75,000 annually, but these income-dependent associations varied by race/ethnicity. In Whites with two or more children, the strongest associations between caregiving and health occurred in lower income individuals. These trends were not observed for Whites without children. Conclusions: Our findings suggest that the added burden of caregiving for both children and elderly relatives may be impacted by income and race/ethnicity. These differences should be considered when developing culturally appropriate interventions to improve caregiver health and maintain this vital component of the US health care system.

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J15 A care model in huntington's disease: delivering care with carers

Introduction The multi-faceted nature of Huntington's disease (HD) presents an argument for professionals to work in close collaboration with care givers in training and service provision. It is argued that there is a case to further develop services where part of the required care is jointly delivered by professionals and carers at the same clinical setting. This will enhance mutual understanding of the scientific and clinical aspects of HD together with specific individual needs. While professionals are at risk of overgeneralization and ‘stereotyping’ patients, carers find it difficult to disentangle HD from the ‘person’ behind it. It is also sometimes difficult for carers to utilize the outcome of various assessments therapeutically to benefit their loved ones and ‘lighten up’ their care giving burden. Our model Carers are usually invited to give formal talks to the team and trainees. A carers’ representative is always invited to service development meetings. That person does also act as a mediator seeking other carers’ views and communicating any concerns to managers. Similarly, our team members are regular attendees to the local support group meetings. This is not only for educational purposes but also to communicate and seek views on service changes. Team members did joint publications with carers. In the context of our inter-disciplinary clinic, a carer is always available at the waiting area explaining to patients what they should expect. She also provides information about the disorder and the role of the support group using a variety of posters and leaflets. Many carers take the opportunity to discuss their concerns; often raising different matters with ‘a fellow carer’ than with other team members. She will then attend part of the meeting after the clinic to feedback on how the clinic was run. Further, that carer spends time with trainees who find talking to a carer with a firsthand experience of HD quite enlightening. They are then able to appreciate the consequences of this disorder on family dynamics. They also have a better understanding of how scientific and clinical information be personalized to help patients and families. Conclusion The value of involving carers in shaping services and tailoring individual care plans as well as training junior clinicians cannot be over estimated.

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An evaluation of the domiciliary occupational therapy service in palliative cancer care in a community trust: a patient and carers perspective

In the past 20 years there has been considerable growth in the provision of palliative care services. The shift in emphasis from hospice and hospital care to the development of community services has been significant. This enables people to be cared for at home and is in keeping with Government agenda. While this may be beneficial for the patient and fit in with the wishes of the family, it is likely to put heavy demands on the coping resources of individual carers. The views of service users are of paramount importance when discussing service evaluation and patient, family and carer empowerment. This research presents the findings of an evaluation of the domiciliary occupational therapy service provided for patients in the palliative stage of cancer care in North and West Belfast from the perspective of the patients and carers. For the purpose of this study, the palliative stage of cancer care is defined as the point from which the patient is no longer responsive to curative treatment, until death. A sample of 30 patients and their primary informal carers were selected using purposive sampling. A structured interview was carried out with both the patients and their carers to obtain views. Results suggest that although both patients and their carers value the service provided and report high levels of satisfaction, there are gaps identified in service provision and a lack of clear information among patients and their carers about the role of the occupational therapist and the range of services they can provide. There is a need to build upon the good work being done by domiciliary occupational therapists in the area of palliative cancer care and increase education and resources to ensure that a patient-centred, holistic, approach to care is used, addressing both the needs of the patient and their carers.

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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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Shifting the burden

Proposals for councils to register adult placement schemes will come as a relief to individual carers who will be spared the regulatory load. Anabel Unity Sale looks at why change is necessary and asks whether it will improve practice. [Introduction]

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The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly : a systematic review

INTRODUCTION: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly. METHODS: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in September 2010. RESULTS: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability. CONCLUSION: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.

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Respite: carers' experiences and perceptions of respite at home

Background: Informal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers’ experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions.

Method: Recorded, semi-structured interviews were undertaken with twelve carers receiving weekly four-hourly respite. Carers were either caring for a person over sixty or were over sixty themselves. Interviews were analysed thematically.

Results and Discussion: Respite sometimes alleviated carers’ constant sense of responsibility for their cared for. Trust, whether in the service provider or individual care workers, was essential. Carers lacking this trust tended to perceive respite as less beneficial. Low expectations were common with carers often unwilling to find fault. Care workers were frequently seen as very kind with some carers valuing their company. Care workers who were flexible, communicated well and responded to the cared for’s needs were valued. Stimulation of the cared for during respite was very important to most carers but the perceived benefits for carers were often very individual. Many carers used respite to catch up with routine, domestic tasks, rarely using it to socialise.

Conclusions: For many carers, respite was a way of maintaining normality in often difficult, restricted lives. Respite allowed continuation of what most people take for granted. Carers frequently viewed respite as intended to improve their cared for’s quality of life, rather than their own. This centrality of the cared for means that carers can only really benefit from respite if the cared for is happy and also seen to benefit. Future research should investigate the perspectives of carers and their cared for, focussing on different demographic groups by features such as age, gender, ethnicity and diagnostic groups. However, without greater clarity about what respite is intended to achieve, clear evidence of a positive impact of this intervention may remain difficult to identify.

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Job satisfaction and quality of life among home care workers: a comparison of home care workers who are and who are not informal carers

Background: Job satisfaction and quality of life among home care workers who serve simultaneously as informal carers for their own family members have seldom been explored. This study examined how this dual role influences job satisfaction and quality of life by comparing these dual carers with home care workers who do not provide informal care. The study also explored whether the factors related to job satisfaction and quality of life between these two groups were different.

Method: Standardized self-administered questionnaires (Job Satisfaction Survey, the World Health Organization Quality of Life (WHOQOL) scales and various social demographic questions) were administered to the two groups of home care workers in Taiwan from March to April 2009. A total of 1,641 home care workers working in 119 non-government organizations sponsored by 23 local authorities completed and returned the questionnaires.

Results: The two groups did not differ in individual characteristics, work characteristics or job satisfaction. Analysis results indicate that the lowest mean scores for all home care workers were the domains of promotion and pay within their job satisfaction and the domain of environment within their quality of life.

Conclusions: Multiple regression analysis revealed a significant effect of unpaid caregiving in terms of quality of life but not in terms of job satisfaction. Moreover, job satisfaction and quality of life among home care workers were significantly determined by both their work conditions (e.g. travelling time, salary and length of work experience) and personal variables (e.g. age, family income and family support).

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A review of the factors associated with the non-use of respite services by carers of people with dementia: implications for policy and practice

The use of respite services by carers has been shown to extend the length of time people with dementia can remain living in the community with family support. However, the use of respite services by informal carers of people with dementia is often low and does not appear to match carer need. To better understand how to address carers' unmet need for respite, the factors that impede respite service use must be identified. To achieve this, a narrative synthesis of published academic literature (1990–2011) was undertaken regarding factors associated with not utilising different types of respite services utilising Anderson's Behavioural Model of Service Use. The review reinforces the importance of the assessment and matching of services to the needs of individual carers and care recipients at the local level. It also highlights the need to move beyond care pathways for individuals. To support respite use there is a need for local action to be augmented at a community or population level by strategies to address attitudinal and resource barriers that influence sub-groups of the carer population who may be more vulnerable to service non-use.

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Understanding the information behaviours of carers of people with dementia: a critical review of models from information science

Objectives: The aim of this review is to discuss how existing models of information behaviour may help to improve provision of information to carers of people with dementia. The article analyses existing models of information behaviour derived from information science, describes studies that have examined these models in relation to health and discusses ways in which they help to understand the information behaviours of carers of people with dementia.

Methods: A comprehensive review of the literature on studies of information needs and a critical examination of models of information behaviours in relation to health were undertaken.

Results: Two dominant paradigms in information science research were identified, involving system-centred and user-centred approaches. System-centred approaches and studies are limited in that they have made assumptions on the types of information that people may require, the way in which information should be provided, the timing of information provision and have homogenous treated groups, failing to take account of individual preferences. In contrast, user-centred approaches recognise the unique needs of individuals and that information needs are subjective and affected by a variety of factors. User-centred models of information behaviour, particularly Dervin's sense-making theory and Wilson's Information Seeking Behaviour Models, could be useful in developing a better understanding of the information behaviours of carers of people with dementia.

Conclusion: Adopting a user-centred approach to study the information behaviours of carers of people with dementia will take account of individual needs. Testing existing models of information behaviour within this group may help to develop interventions to meet the needs of individual carers and people with dementia.

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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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