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The lifecycle and care

The following resources examine transitions in and out of care over the life course.

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).

Perceptions of health and well-being among older adult caregivers: Comparisons of current caregivers with former and never caregivers

• Current caregivers had less health satisfaction than never caregivers. • Former caregivers experienced better well-being than current caregivers. • There were no differences in depression scores amongst caregiver types. • Income is an important contributor to health outcomes across caregiver types. Older adults with physical and/or cognitive limitations frequently rely on informal caregivers who are often other older adults. This study compared health and well-being outcomes of self-identified, current older adult caregivers with those of former older adult caregivers and older adults who were never caregivers. The study was observational, using cross-sectional survey data. The sample consisted of 186 adults age 65 and older. Survey questions measured perceptions of depression, health satisfaction, and well-being. Regressions compared the outcomes of respondents in the three groups. Controlling for demographic factors, never-caregivers reported greater odds of health satisfaction compared to current caregivers. Former caregivers reported greater well-being compared to current caregivers. Findings suggest that older adulthood caregiving has impacts on health and well-being, both positive and negative. Because older adults are increasingly relied upon to provide informal caregiving, community and provider-based resources, policies, and interventional research addressing unique needs of older caregivers are needed.

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Life Course Stage and Social Support Mobilization for End-of-Life Caregivers

Caregivers of terminally ill patients are at risk for anxiety, depression, and social isolation. Social support from friends, family members, neighbors, and health care professionals can potentially prevent or mitigate caregiver strain. While previous research documents the importance of social support in helping end-of-life caregivers cope with caregiving demands, little is known about differences in social support experiences among caregivers at different life course stages. Using life course theory, this study analyzes data from in-depth interviews with 50 caregivers of patients enrolled in hospice services to compare barriers to mobilizing social support among caregivers at two life course stages: midlife caregivers caring for parents and older adult caregivers caring for spouses/partners. Older adult caregivers reported different barriers to mobilizing social support compared with midlife caregivers. Findings enhance the understanding of how caregivers' life course stage affects their barriers to mobilization of social support resources.

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Informal Caregiving and Network Turnover Among Older Adults

Objectives Personal network turnover, a combination of lost and added network contacts, is suggested to affect health as well as moderate access to social support and resources. This article tests whether the caregiving process is associated with network turnover in later life and whether the process is different for men and women. Methods Network turnover was assessed using two waves of personal network data from the National Social Life, Health, and Aging Project. Network contacts were uniquely identified in each wave making it possible to document contact loss and addition. Rates of change were modeled using Poisson regression. Results Respondents transitioning into caregiving lost and added network contacts at higher rates than non-caregivers. Conversely, respondents providing care during both waves and respondents transitioning out of the role saw no significant levels of network turnover. The analysis provided minimal evidence of gender differences. Discussion Findings suggest that the initial shift into the caregiving role is associated with notable personal network change. This is an important consideration given that long-term network instability may lead to poor health and limited access to social resources whereas adaptive network change tends to elicit more positive outcomes.

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The heterogeneous effect of retirement on informal care behavior

It is often argued that the increased labor market participation of seniors threatens family support provided to dependent elderly people. The purpose of this paper is to assess the causal effect of retirement on the frequency of care provided by individuals aged 55-69 years to their elderly parent. Using data from the Survey of Health, Aging and Retirement in Europe (SHARE), we estimate an endogenous switching model that allows the retirement effect to be heterogeneous with respect to observed and unobserved characteristics. To tackle the possible endogeneity of selection into retirement, we use the heterogeneity of retirement rules between and within European countries. On average, being retired does not significantly impact the probability of providing care but significantly increases the frequency of care conditional on being caregiver. The same pattern is observed regardless of the individual observed characteristics, even if the provision of informal care appears to be less sensitive to the retirement status when the child cannot rely on the other parent to provide care or when both parents are in poor health. These results suggest that pension system reforms should not affect the number of caregivers. Some adverse effects on the intensity of involvement among caregivers are nevertheless expected.

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The pains and reliefs of the transitions into and out of spousal caregiving. A cross-national comparison of the health consequences of caregiving by gender

Spousal caregiving offers a unique opportunity to investigate how gender shapes the influence of care responsibilities on health at older ages. However, empirical evidence supporting a causal link between the transitions into and out of caregiving and health is mixed. This study investigates the influence of spousal care transitions on the health of older men and women living in 17 European countries. We use five waves of the Survey of Health, Ageing and Retirement in Europe (SHARE) between the years 2004 and 2015 for a total of 43,435 individuals and 117,831 observations. Health is defined as a Frailty Index calculated from 40 items. Caregiving is defined as intensive help with personal care provided to spouses. Results from asymmetric fixed-effects linear regression models show that the transitions into caregiving have a detrimental effect on health. On the contrary, the transitions out of caregiving have in most cases no beneficial consequences on health. Most importantly, we found evidence supporting differential effects of caregiving transitions by gender and welfare arrangement: the transitions out of caregiving are associated with better health conditions only for Southern and Eastern European women. Our study highlights the asymmetric and gendered nature of care transitions and suggests that the impact of caregiving is somewhat permanent and has long lasting effects for the caregiver. Policies should account for this asymmetry when assessing the impact and consequences of caregiving.

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Experiences and perspectives of the parents of emerging adults living with type 1 diabetes

Introduction Whereas it is widely recognized that emerging adulthood can be a difficult time in the life of an individual living with type 1 diabetes, relatively little is known about the experiences of their parents or guardians. These individuals once shouldered much of the burden for their child's diabetes 'self'-management, yet their contribution is often overlooked by the adult healthcare system. Here, we set out to gain an understanding of the perspectives of parents of emerging adults living with type 1 diabetes. Research design and methods Semi-structured interviews were performed with a purposeful sample of parents of emerging adults with type 1 diabetes recruited from two urban young adult diabetes clinics and through a national diabetes charity. Thematic coding was derived using a constant comparative approach. Results Analysis of interviews with 16 parents of emerging adults with type 1 diabetes identified three themes: parental experiences of the transition to adult care; negotiating parent-child roles, responsibilities and relationships; and new and evolving fears. Parents spoke in detail about the time surrounding their child's diagnosis of type 1 diabetes to emphasize the complexity of diabetes care and the need to establish a 'new normal' for the family. In turn, adolescence and emerging adulthood required a renegotiation of roles and responsibilities, with many parents continuing to play a role in high-level diabetes management. Several parents of emerging adults with type 1 diabetes (particularly those of young men) vocalized worries about their child's readiness to assume responsibility for their self-care, and some expressed frustration with the apparent dichotomy in the role expectations of parents between the pediatric and adult care settings. Conclusions Adult healthcare providers should recognize both the ongoing involvement of parents in the 'self'-management of emerging adults with type 1 diabetes and the unique aspects of the caregiver burden that they experience.

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Experiences of being a former young carer: effects in the transition into adulthood and in the present life situation

This qualitative study aims to describe the experiences of adults with caring responsibilities during their childhood. 16 semi-structured interviews with former young carers were conducted and analyzed using open and axial coding procedures and constant comparison techniques. Being responsible as a child in terms of caregiving has an impact on every person concerned. When entering adulthood, most former young carers maintain the responsibility for the ill person. They feel torn between the effort of trying to arrange their life in a different way and holding on to a life where responsibility is still a dominant concern. They remain silent about caregiving due to the fear of painful memories, or the inability to recognize themselves as former young carers. Knowledge of former young carers’ situation can improve the understanding of how caring shapes the transition into adulthood and can help to prevent an inappropriate caring role of actual caregiving children.

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Applying Relational Turbulence Theory to Adult Caregiving Relationships

Although the quality of the relationship between caregivers and care recipients predicts the well-being of both people, gaps exist in understanding the interpersonal dynamics of adult caregiving. We introduce relational turbulence theory as a conceptual framework for understanding how caregivers and care recipients relate to each other. We searched for research on relational turbulence theory as well as research on the relationships of adult care partners. Then, we integrated the two bodies of work. Our review suggests initial support for the theory's three central tenets: (a) transitions, including the transition to caregiving, are key periods within relationships; (b) relational uncertainty and interdependence are relationship parameters that complicate relating during transitions; and (c) relational turbulence predicts outcomes. Recommendations for practice include (a) helping care partners focus on relationship continuity, (b) gearing clinical services toward both people, (c) educating them about relational uncertainty and interdependence, and (d) teaching them communication strategies for diminishing relational turbulence. Making care partners aware of interpersonal challenges may bolster relationship satisfaction. 

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"I've always been the one who drops everything": the lived experiences and life-course impacts of young adult women carers

Based on findings from a Canadian-based study, this article examines the stories of young adult women carers. Young adult women caring for a parent or grandparent were interviewed using social network maps, participant-driven photography and care timelines. The findings reveal numerous impacts on the women's lives, which we categorise according to three temporal periods: the past (how they came to be carers); the present (their daily realities of care); and the future (how they imagine what is ahead). We conclude with a discussion regarding the tensions between the women's personal stories and the social forces that shape young women's caring.

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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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Just Like Any Other Family? Everyday Life Experiences of Mothers of Adults with Severe Mental Illness in Sweden

This study explores experiences of mothers in Sweden who care for their adult children suffering from severe mental illness. Using 15 interviews with mothers from 40 to 80 years old, the article examines how predominant professional knowledge and sanism constructs the mothers and their children as deviant and what counterstrategies the mothers develop as a response to these experiences of discrimination. The findings show that the mothers’ experiences are characterized by endless confrontations with negative attitudes and comments that have forced them to go through painful and prolonged processes of self-accusations for not having given enough love, care, support and help in different stages of their children's life. But the mothers’ experiences also reveal important aspects of changes over the life span. As the mothers are ageing, the relationship between them and their children becomes more reciprocal and the ill child may even take the role as family carer.

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Supporting Active Aging for Persons with Severe Disabilities and Their Families Across the Life Course

Individuals with severe disabilities and their families can engage in person-centered and family-centered planning for aging using a life course view. Viewing aging within the context of the family and disability is essential because many people with severe disabilities depend on their families for supports in daily living, social relationships, and for activities within communities. Since eligibility-based supports are often limited, parents and other family members play large roles both financially and socially in helping their family member move through the life course into active and healthy aging. Charting the LifeCourse is a framework that both people with disabilities and their families can use to achieve desired life outcomes over time. Issues that impact active and healthy aging for people with disabilities include the aging of caregivers, death of a caregiver, limited resources for supporting physical and health concerns, staying active in the community following retirement, and maintaining social emotional connections.

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"Everybody Takes Care of Everybody": Care Circulation and Care Relations in Three-Generation Cohabitation

Demographic changes in Western societies have enabled long-term relationships between more generations and have significantly affected the structure and dynamic of family lives and contemporary families. This article presents a case study of three-generation cohabitation, the situation in which three generations live together in the same place at the same time. Drawing on in-depth interviews with three generations—grandparents, parents, and adult grandchildren—the article illuminates the characteristics of intergenerational caregiving and care-receiving. It uses the concept of care circulation to explore the everyday repeated exchanges of care among all family members and the caregiving constellations, arrangements, and distributions across the generations. We argue that the care is not unidimensional and unidirectional; rather, the care circulates among the family members cohabiting in three-generation households who are at the same time both caregivers and care-receivers. 

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Early caregiving experiences and the impact on transition into adulthood and further life: a literature review

Internationally, there is a growing body of knowledge about young carers, but there is a lack of research about their experiences in later life and about how their caregiving responsibility influences their transition into adulthood and affects them in their future life. The aim of this literature review is to present the experiences of young adult carers in the phase of life in which many decisions are made for one's own life as an adult. In addition, the retrospective perspective of former caregivers will be described, too. Thirteen studies, published in English or German, were included after critical appraisal. Of these, six focused on the phase of transition and seven gave their attention to the retrospective. The analysis was performed explorative in line with the Grounded Theory Method. The findings of the literature review provide insights into the family situations at the time of caregiving and into the tasks of former young carers. They also impart the positive and negative effects. Former young carers assumed responsibilities they did not want to take over. They often took on the parental role. In retrospective, especially older female siblings felt that they had to change roles, often taking over the mother's role. In this role, they sometimes felt overwhelmed and left alone. Adult former carers feel mentally less healthy and insufficiently strengthened due to the long-term care or support they have given. But there are also positive effects pointed out by former young carers. Many of them are distinguished by outstanding social skills in adulthood. They feel well prepared for life through the care experiences and appreciate the practical skills they have learned. The results of this literature review show that the caring experiences influence the life of former young carers and determine their further life course.

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Life course trajectories of family care

More than 30 years ago, Elder theorised multiple life-course trajectories in domains such as family and work, punctuated by transitions that create the structure and rhythm of individual lives. We argue that in the context of population ageing, family care should be added as a life-course domain. We conceptualise life courses of family care with core elements of 'care as doing' and 'care as being in relationship', creating hypothetical family care trajectories to illustrate the diversity of life-course patterns of care. The framework provides a basis for considering influences of care on cumulative advantage/disadvantage for family carers.

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Caregivers of older adults with dementia and multiple chronic conditions: Exploring their experiences with significant changes

Family caregiving is considered a social transition as changes in the health of the care recipient create a process of transition for the caregiver when they are more vulnerable to threats to their own health. Family and friend caregivers take on many responsibilities and experience high levels of burden when caring for community-dwelling older adults living with dementia and multiple chronic conditions. However, little is known about the changes they experience in their caring roles or how they cope with these changes. This qualitative descriptive study was part of a larger mixed methods randomized controlled trial evaluating a web-based caregiver support toolkit. Multiple semi-structured phone interviews were conducted with caregivers of older adults with dementia and multiple chronic conditions. Content analysis was used to generate thematic descriptions. Six themes were generated and grouped into two categories. Significant changes experienced by caregivers are described by the following themes: 'everything falls on you - all of the responsibilities,' 'too many feelings' and 'no time for me.' The themes describing how caregivers coped with these changes include: seeking support, self-caring, and adapting their caregiving approach. Study results indicate that caregivers of older adults with dementia and multiple chronic conditions experienced many changes in their caregiving journey resulting in increasing complexity as they tended to the care recipients' declining health and well-being. These caregivers used several creative strategies to cope with these changes. Health care providers should consider both the caregiver and care recipient as clients in the circle of care, and facilitate their linkage with health and community support services to help address the increasing complexity of care needs.

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The continuum of dependent family care: a theoretical explanation and model

Caring for dependents with disabilities and how this type of care differs from the care of typically developing dependents has largely remained unaddressed in the work–family literature, partly because of a lack of theoretical development on the concept of dependent family care. Studies examining dependent family care often apply a life course perspective, missing key disability factors influencing dependent family care demands and need for resources. This article develops a theoretical framework of dependent family care that accounts for both typical care, which follows the life course trajectory, and exceptional care, which follows a disability trajectory. The authors position dependent family care as based on a continuum, achieved by adapting life course theory, family adjustment to chronic illness, ecological systems theory, stigma theory and the social model of disability into a model. They explain how dependent family care occurs and what contributes to whether one is engaging in typical or exceptional care. The authors draw broad constructs representing predictors of different types of dependent family care and they provide specific examples to illustrate how one might test theoretical propositions, an agenda for further research and discuss implications for family–work–community research and practice.

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Transitioning into spousal caregiving: contribution of caregiving intensity and caregivers’ multiple chronic conditions to functional health

Background: Both caregiving intensity and caregivers’ multiple chronic conditions (MCCs) are important aspects of caregiving that might affect the health and well-being of older spousal caregivers, but few investigations have simultaneously modelled their impact during the transition into spousal caregiving. Objective: To examine the differential effects of caregiving intensity and caregivers’ MCCs on functional health over time among individuals entering the spousal caregiver role. Methods: A total of 1,866 non-caregivers at the baseline were followed over a 4-year period (2011–2015). The effects of transitioning into caregiving (transitioned into low-intensity and transitioned into high-intensity versus never-caregiver) and caregivers’ MCCs (reported before and during the transitioning period versus no MCCs) on functional health at the follow-up were estimated using mixed-effects regression models. Results: Transitioning into spousal caregiving was associated with a decline in functional health, particularly for those transitioned into high-intensity caregiving, and for those who reported MCCs when transitioning into the caregiver role. The association between transitioning into spousal caregiving and functional decline was strongest for high-intensity caregivers reporting MCCs when transitioning into caregiving, followed by low-intensity caregivers reporting MCCs when transitioning into caregiving. Conclusion: The results highlight the contribution of transitioning into high-intensity caregiving and caregivers’ MCCs to the functional health decline of spousal caregivers. Caregiver support interventions should target spousal caregivers who have newly entered a demanding caregiving role; clinical attention should be emphasised for the development of caregivers’ own MCCs coinciding with the transitioning period.

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Intergenerational flows of support between parents and adult children in Britain

Understanding patterns of intergenerational support is critical within the context of demographic change, such as changing family structures and population ageing. Existing research has focused on intergenerational support at a given time in the individuals' lifecourse, e.g. from adult children towards older parents and vice versa; however, few studies have focused on the dynamic nature of such support. Analysing data from the 1958 National Child Development Study, this paper investigates the extent to which the receipt of parental help earlier in the lifecourse affects the chances of adult children reciprocating with support towards their parents later in life. The findings show that three-quarters of mid-life adults had received some support from their parents earlier in life, and at age 50 more than half were providing care to their parents. Patterns of support received and provided across the lifecourse differ markedly by gender, with sons being more likely to have received help with finances earlier in the lifecourse, and daughters with child care. The results highlight that care provision towards parents was associated with support receipt earlier in life. However, the degree of reciprocity varies according to the type of care provided by children. Such findings have implications for informal care provision by adult children towards future cohorts of older people, and by extension, the organisation of social care.

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It's Interpersonal: Family Relationships, Genetic Risk, and Caregiving

My research program considers family relationships across the life course: in early life, with a focus on disease prevention -- leveraging genetic risk information and relationships to motivate health-promoting behaviors -- and in later life, with a focus on informal caregiving -- identifying characteristics of those most vulnerable to, or resilient from, caregiver stress. It is fortuitous, if not tragic, then, that my research and personal worlds collided during my mother's final 8 months of life. Here, I discuss how this experience has shifted my thinking within both arms of my research program. First, I consider the state of the science in family health history, arguing that the current approach which focuses on an individual's first- and second-degree relatives does not take us far enough into the relational landscape to activate communal coping with disease risk. Second, I discuss caregiving from a family systems perspective. My family's experience confirmed the importance of using a systems approach and highlighted a need to identify underlying variability in members' expectations of caregiving roles. In so doing, I capture the significance of understanding the multiple perspectives that frame a context in which families adapt and cope with risk and disease diagnoses.

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“Self-Employed” in Caregivinghood: The Contribution of Swedish Informal Caregivers’ Environmental and Contextual Resistance Resources and Deficits

Informal caregivers provide the majority of care for older adults residing in their own homes. Caregivinghood, a new evidence-based concept, describes a time of life when relatives provide care at home. These caregivers need knowledge regarding resources to help them resolve the challenges they encounter. The theoretical framework underpinning this study is Antonovsky’s salutogenic theory of health. This study had two aims: (1) to examine the salutogenic core concepts Generalized and Specific Resistance Resources and Deficits (GRRs/SRRs and GRDs/SRDs) described by Swedish informal caregivers as originating from the environmental and contextual domain of caregivinghood and (2) to discuss how this new knowledge might contribute to the development of health promotion initiatives. This qualitative and theory driven study used inductive and deductive data analysis. Data were gathered through salutogenically guided face-to-face interviews of 32 Swedish informal caregivers. In addition, the study relied on the salutogenic core concepts Specific and Generalized Resistance Resources and Deficits originating from their environment and context. Being in empowering surroundings reflects the presence of usable SRRs/GRRs, whereas Struggling in impeding surroundings reflects the presence of SRDs/GRDs. The results indicate that health-enhancing support has to be individualized (SRRs/SRDs) and generalized (GRRs/GRDs). This study’s salutogenic approach and the methodology enhance the understanding of the mechanisms behind the development of Sense of Coherence. The results contribute both empirically and theoretically to strengthen health promotion research and practice when developing activities and support for caregivers in stressful situations, such as informal caregiving.

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"Please listen to me": A cross-sectional study of experiences of seniors and their caregivers making housing decisions

Background: Little is known about the decision-making experiences of seniors and informal caregivers facing decisions about seniors' housing decisions when objective decision making measures are used.; Objectives: To report on seniors' and caregivers' experiences of housing decisions.; Design: A cross-sectional study with a quantitative approach supplemented by qualitative data.; Setting: Sixteen health jurisdictions providing home care services, Quebec province, Canada.; Participants: Two separate samples of seniors aged ≥ 65 years and informal caregivers of cognitively impaired seniors who had made a decision about housing.; Measurements: Information on preferred choice and actual choice about housing, role assumed in the decision, decisional conflict and decision regret was obtained through closed-ended questionnaires. Research assistants paraphrased participants' narratives about their decision-making experiences and made other observations in standardized logbooks.; Results: Thirty-one seniors (median age: 85.5 years) and 48 caregivers (median age: 65.1 years) were recruited. Both seniors and caregivers preferred that the senior stay at home (64.5% and 71.7% respectively). Staying home was the actual choice for only 32.2% of participating seniors and 36.2% of the seniors cared for by the participating caregivers. Overall, 93% seniors and 71% caregivers reported taking an active or collaborative role in the decision-making process. The median decisional conflict score was 23/100 for seniors and 30/100 for caregivers. The median decision regret score was the same for both (10/100). Qualitative analysis revealed that the housing decision was influenced by factors such as seniors' health and safety concerns and caregivers' burden of care. Some caregivers felt sad and guilty when the decision did not match the senior's preference.; Conclusion: The actual housing decision made for seniors frequently did not match their preferred housing option. Advanced care planning regarding housing and better decision support are needed for these difficult decisions.

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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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Informal caring in England and Wales - Stability and transition between 2001 and 2011

Informal caring is of significant and increasing importance in the context of an ageing population, growing pressures on public finances, and increasing life expectancy at older ages. A growing body of research has examined the characteristics associated with informal care provision, as well as the impact of caring for the carer's physical and mental health, and their economic activity. However, only a relatively small body of literature has focused on the study of ‘repeat’ or continuous caring over time, and the factors associated with such trajectories. In 2001, for the first time, the United Kingdom census asked about provision of informal care, enabling identification of the prevalence of informal caregiving at a national level. This paper follows up informal carers from the 2001 Census in order to examine their characteristics and circumstances 10 years later using a nationally representative 1% sample of linked census data for England and Wales, the Office for National Statistics Longitudinal Study. The analysis classifies the range of possible combinations of caring and non-caring roles between 2001 and 2011, focusing on the characteristics of those who were providing care at one, or both, time points. Among other results, the analysis identified that, among those who were carers in 2001, caring again in, or continuing to care until, 2011 was associated with being female, aged between 45 and 54 years in 2011, looking after the home, and providing care for 50 hours or more per week in 2001. Such results contribute to our understanding of a particular group of informal carers and provide a more nuanced picture of informal care provision at different stages of the life course.

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Caregiver roles in families affected by Huntington's disease: a qualitative interview study

Aim: The objective of this study was to explore family caregivers' experiences with the impact of Huntington's disease (HD) on the family structure and roles in the family.

Methodology: We interviewed 15 family caregivers in families affected by HD, based on a semi-structured interview guide. The participants were recruited through hospital departments and a lay organisation for HD in Norway. Data from the interviews were analysed with systematic text condensation.

Results: Huntington's disease could have a substantial impact on the family system, the shape of roles among family members and the hierarchical order between spouses, partners, and parents and children. The relationship between spouses and partners changed during the course of the disease. A reciprocal relationship was difficult to maintain, as the role as carer overshadowed other roles. Children of an affected parent could compensate for impairments by taking on adult responsibilities, and in some families, a child had the role as main caregiver. The increasing need for care could cause conflicts between the role as family member and family caregiver. The burden of care within the family could fragment and isolate the family.

Conclusions: Huntington's disease has a major impact on family systems. Caregiver roles are shaped by impairments in the affected family member and corresponding dynamic adoption and change in roles within the family. Making assessments of the family structure and roles, professionals may understand more about how to care for and support individuals in their role as family members and caregivers in different stages of the disease and family life cycle.

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Transitions to informal care in Great Britain during the 1990s

Objectives: To estimate annual changes and trends in the population of informal carers and to investigate transitions to caregiving by age, gender, locus of care, and level of involvement.

Design: Longitudinal analysis of data from the British household panel survey, 1991 to 1998, an annual prospective survey of a nationally representative sample of more than 5000 private households in England, Scotland, and Wales.

Subjects: Over 9000 adults over 16 years interviewed personally in successive waves of the survey, including around 1300 informal carers each year.

Results: One third of co-resident carers and 40% of extra-resident carers start caregiving each year and similar proportions cease to provide care. Five year period rates are at least 75% higher than the one year prevalence estimates. Almost everyone is involved in caregiving at one time or another and over half are likely to provide 20 hours or more care per week at some point in their lives. Recent trends indicate that more adults are becoming heavily involved in providing longer episodes of care. Although the onset of caregiving peaks in late middle and early older age, above average incidences span three decades or more of adult life. Age variations in the start of caring relationships are driven by the changing demands for care within and between generations over the life course. There is no firm evidence that carers increase their involvement in caring activities over the first three years of a caring episode.

Conclusions: The population of carers is constantly changing as some people stop providing care and others take on a caring role or vary their level of involvement. Policy measures responsive to the diversity of caring roles, and geared around key transitions, are likely to be most effective in supporting carers through changing circumstances. Recognition and support for carers who are heavily involved in caring activities from the outset should be a priority.

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S09-05 Beyond family burden - the complexities of carer roles

In her talk, Sigrid Steffen will speak about the core aims of EUFAMI in respect to family members and carers. Sigrid will base a lot of her talk around her own personal experience as a carer of a son who was diagnosed with schizophrenia, and she will augment this with experiences of other members of EUFAMI from across Europe. She will elaborate on the stresses and strains under which family members (the carers) come under and will discuss the challenges which carers face on a daily basis. Her talk will also include a description of a typical 'journey' which carers and families travel in the execution of their caring role in an attempt to describe the various feelings and pressures they experience. Sigrid will also discuss what she understands to be the critical needs of carers and the level of support required. In particular Sigrid will concentrate on the stigma which families feel and experience during their lifetime, a aspect which is little understood and appreciated by the wider public. In conclusion, Sigrid will detail some of the work which EUFAMI has been and is involved with and which is related to the subject of her talk. 

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Family caregivers' distress levels related to quality of life, burden, and preparedness

Objective: Family caregivers (FCGs) caring for loved ones with lung cancer are at risk for psychological distress and impaired quality of life (QOL). This study explores the relationship between FCGs' distress, per the distress thermometer (DT) and FCGs' QOL, burden, and preparedness. The purpose is to identify types of problems unique to FCGs in cancer care.

Methods: Family caregivers of patients diagnosed with non-small cell lung cancer were recruited from an adult outpatient setting at a comprehensive cancer center. Questionnaires included demographic information, City of Hope QOL Scale-Family Version, Caregiver Burden Scale, FCG preparedness, and DT. Baseline data were utilized for this analysis.

Results: Of the FCGs (N = 163), 68% were spouses, 64% female, and 34% worked full-time. FCG age ranged from 21 to 88 years with a mean of 57 years. FCGs cared for patients with non-small cell lung cancer stage I–III (44%) and stage IV (56%). Psychological distress (DT mean = 4.40) was moderate. DT scores were highly correlated with seven of the eight explanatory variables. Secondary principal components analysis of the explanatory variables combined correlated variables into three constructs identified as self-care component, FCG role component, and FCG stress component. Simultaneous multiple regression of distress onto the three components showed they accounted for 49% of the variance in distress.

Conclusion: This exploration of FCGs' concerns associated with elevated distress scores, as measured by the DT, helped identify three component problem areas. These areas warrant further psychosocial assessment and intervention to support FCGs as they care for the patient with cancer. Copyright © 2014 John Wiley & Sons, Ltd.

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Using the life course perspective to study the entry into the illness trajectory: the perspective of caregivers of people with Alzheimer's disease

The research community is showing increasing interest in the analysis of the care trajectory of people with chronic health problems, especially dementias such as Alzheimer's disease. However, despite this interest, there is little research on the initial phases of the care trajectory. The fact that the first symptoms of dementia are generally noticed by those surrounding the elderly person suggests that the recognition of the disease is intimately linked to interactions not only amongst family members but also amongst friends, neighbours and health professionals. This study focuses on the period beginning with the first manifestations of cognitive difficulties and ending with the diagnosis of Alzheimer-type dementia. Interviews with 60 caregivers in Montreal, Canada were used to reconstruct how older people with Alzheimer-type dementia enter into the care trajectory. Our methods consisted of the analysis of social networks, social dynamics and action sequences. Our findings are presented in the form of a typology comprised of 5 pathways of entries into the care trajectory that are structured around the following four principles of the Life Course Perspective: family history, linked lives, human agency and organisational effects. We believe that analyses of the initial phases of the care trajectory, such as this one, are essential for the application of effective early detection and intervention policies. They are also central to informing future studies that seek to understand the care experience in its entirety.

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A gendered approach to workforce participation patterns over the life course for an Australian baby boom cohort

Population ageing and its future implications for governments and individuals have been central to much policy debate and research targeted to retain older people in the workforce. This study identified workforce participation patterns across the adult life course for women and men entering later life, and explored the influences of various early and adult life socio-demographic circumstances. Data were collected from 1261 men and women aged 60 to 64 years in the Life History and Health (LHH) Survey (a sub-study of the Sax Institute's 45 and Up Study, Australia) in 2010–11. LHH provides detailed information on personal histories of paid work, socio-economic resources from childhood (number of books and father's occupation) and adult life factors such as educational attainment, marital histories, childcare and informal caring. Latent class analysis (LCA) was undertaken to identify patterns of workforce participation for participants across their adult life. Significant gender differences were confirmed. Further analysis (LCA with covariates) showed that women who reported having books during childhood, and those who had post-school qualification, were more likely to have mostly been in paid work and less likely to have not been in paid work; while ever partnered women had significantly higher odds of increasing part time work over time. Men who had reported ever having had informal caring activities were likely to have had decreasing participation in paid work over time, and were highly likely to be not in paid work after 55 years. Ever partnered status was protective for being in paid work for men. These findings indicate the need for gender-specific policies and strategies to enable continued workforce participation throughout adult life and into later working years, particularly for people who had fewer social or economic opportunities earlier in life.

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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 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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Knowledge generation about care-giving in the UK: a critical review of research paradigms

While discourse about care and caring is well developed in the UK, the nature of knowledge generation about care and the research paradigms that underpin it have been subjected to limited critical reflection and analysis. An overarching synthesis of evidence – intended to promote debate and facilitate new understandings – identifies two largely separate bodies of carer-related research. The first body of work – referred to as Gathering and Evaluating – provides evidence of the extent of care-giving, who provides care to whom and with what impact; it also focuses on evaluating policy and service efficacy. This type of research tends to dominate public perception about caring, influences the type and extent of policy and support for carers and attracts funding from policy and health-related sources. However, it also tends to be conceptually and theoretically narrow, has limited engagement with carers' perspectives and adopts an atomistic purview on the care-giving landscape. The second body of work – Conceptualising and Theorising – explores the conceptual and experiential nature of care and aims to extend thinking and theory about caring. It is concerned with promoting understanding of care as an integral part of human relationships, embedded in the life course, and a product of interdependence and reciprocity. This work conceptualises care as both an activity and a disposition and foregrounds the development of an ‘ethic of care’, thereby providing a perspective within which to recognise both the challenges care-giving may present and the significance of care as a normative activity. It tends to be funded from social science sources and, while strong in capturing carers' experiences, has limited policy and service-related purchase. Much could be gained for citizens, carers and families, and the generation of knowledge advanced, if the two bodies of research were integrated to a greater degree.

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Financial well-being of US parents caring for coresident children and adults with developmental disabilities: An age cohort analysis*

Background Understanding how financial well-being changes through the life course of caregiving parents of children with developmental disabilities is critically important. Methods We analyse SIPP (U.S. Census Bureau) data to describe income poverty, asset poverty, income, net worth, and liquid assets of US parents ( N = 753) of children with developmental disabilities. Results Income and asset poverty was greatest for the youngest and oldest parents. Liquid assets were relatively flat across cohorts, while net worth declined sharply for elderly parents. Income was highest among parents aged 45-54. Conclusion These findings signal significant financial vulnerability among parents of children with developmental disabilities. Policy makers should consider targeted measures to improve the financial well-being of these parents, particularly the youngest and oldest.

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The New Caring

Increasing longevity and the growing proportion of the aged in the population in most countries have served to focus on the question of how governments and older people can finance living, health, and care options in retirement. Prudent management of income and assets is an increasingly complex and important aspect of aging as assets and expectations of self-financing increase. Although many informal caregivers act as asset managers and/or substitute decision-makers for older people, little attention has been paid to this increasingly important aspect of care. This paper summaries key findings of a broad research program exploring family involvement in the management of older people's assets and the practices that constitute good practice as well as financial mismanagement and abuse. It identifies multi-level and multi-strategy responses needed to address the issues raised by the research and outlines an innovative community demonstration project aimed at improving financial management practices in relation to older people's assets.

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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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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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Kinkeeping and Caregiving: Contributions of Older People in Immigrant Families

Older people can be important members of immigrant households because they do housework and give emotional support to younger family members. Caregiving is a means of symbolic kin-keeping, reinforcing the meaning of family relationships through native foods, language, and religion. Caring for grown children and their families is demanding business for older people, who are sometimes called on to take on new and unanticipated roles. Because older people can expect to become the recipients of family care, they have a big stake in the economic success of their offspring and strength of family ties. 

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Family Caregivers of Older Adults: A Life Span Perspective

When faced with changes in physical health, cognition, and daily functioning, older adults most frequently rely on family members for instrumental support and more intense care activities. Using a life span perspective as our guiding framework, we identified several developmental themes across the late-life caregiving research including individual well-being, relational effects, and caregiver growth. In addition, we examined the effectiveness of education and intervention programs as well as policy initiatives designed to assist middle-aged and older family members care for their aging relatives. The multiple dimensions of, influences on, and the variability in response to the caregiving experience presents multilayered challenges that can best be addressed through the intentional integration of sound research investigations, practice initiatives, and policy directives.

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A lifetime of caring: Dimensions and dynamics in late-life close relationships

This review of research on close relationships in old age is informed by principles of life span developmental psychology and life course theory in sociology. It begins with an elaboration of life span and life course concepts as applied to relationships and an analysis of the multiple forms that caring can take. The discussion continues with presentation of research on the effects of sociohistorical contexts on relationships in old age and studies of the effects of personal development and life events on relationships as well. A section examining problems in late-life close relationships is followed by examples of new directions for research on the intersections of personal development and close relationships.

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Is There a Trade-Off Between Caring for Children and Caring for Parents?

Adult's decision to care for aging family members has an aggregate effect on public income support programs as well on as health care services and costs. Families have continuously been the primary source of support and care of elderly members. It is estimated that adult children constitute 41.3% of all informal caregivers (Wolff & Kasper, 2006). However, recent demographic trends have changed the landscape of parental caregiving by placing unprecedented levels of competing demands for care, potentially limiting the availability of adult children to provide parental care. This examination explores parental care behavior in four European countries (Norway, England, Spain, and Germany) and Israel, emphasizing a potential trade-off between care for offspring and care for aging parents.

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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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Informal care, health and mortality

Informal care provision is an activity in which individuals are increasingly likely to become involved across their life course, and particularly in later life, as a result of demographic changes such as increasing longevity and changes in co-residential living arrangements in later life. Academic research so far has highlighted the adverse impact of informal care provision on the financial position of the carer, however, the evidence on the impact of informal care provision on the carer's physical, mental and emotional health, and on their mortality, presents a more complex picture. This paper reviews research from the UK and beyond on the provision of informal care and its subsequent impact on health and mortality outcomes. Two key findings emerge from this review paper. Firstly, the cross-sectional analysis of data shows mixed associations between informal care provision and poor health outcomes for the carer. Such research highlights the importance of the demographic and socio-economic characteristics of the carer and the person cared for, and of the specific characteristics and nature of the care provided (e.g. duration, level). Secondly, longitudinal analysis, which typically benefits from a longer timeframe to follow up the impact of caring, shows that although informal care provision is not per se associated with adverse health and mortality outcomes, nevertheless particular types and durations of caring have shown negative outcomes.

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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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Changing families, changing childhoods: changing schools?

This paper reports key findings from a study of young people’s engagement in ‘atypical’ activities in their families. The project focused on young caring and language brokering as two roles that are not assumed to be ‘normal’ activities for children and young people. The findings presented are from a survey of 1002 young people and from one‐to‐one interviews with a sample selected from the survey sample. The voices of young people in the interview study are used in the paper to illustrate the diverse range of childhood experiences. The paper discusses some of the ways in which pastoral systems in schools can take account of diverse childhoods and family needs more effectively than they have done in the past.

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Socioeconomic factors associated with trajectories of caring by young and mid-aged women: a cohort study

Background: The health and socioeconomic outcomes from being a caregiver are well described. In contrast, the long-term trajectories of caring undertaken by women, and the demographic, socioeconomic status, health status and health behaviour characteristics associated with these trajectories is not well known.

Methods: The data were from the Australian Longitudinal Study on Women’s Health. Participants were 14,202 women born 1973–78 followed for 13 years, and 12,282 women born 1946–1951 followed for 9 years. Latent class analyses and multinomial logistic regression were used.

Results: Five distinct trajectories of caring were identified for the younger women: these represented ‘ongoing’, ‘starting’, ‘never’ and 2 types of ‘transitional’ caring. While traditional indicators of poorer socioeconomic status were associated with trajectories representing ‘ongoing’ and ‘starting’ caring, they were not associated with ‘transitional’ caring trajectories. Three distinct trajectories of caring were identified for the mid-age women: these represented ‘ongoing’, ‘starting’ and ‘never’ caring. For the mid-age women, poorer socioeconomic status indicators were associated with the ‘ongoing’ caring, but not ’starting’ caring.

Conclusions: Women in the 1973–78 cohort showed more varying and transitional caring trajectories compared to those in the 1946–51 cohort, and these trajectories were not associated with traditional socioeconomic indicators. An ‘opportunity cost’ theory for who become carers does not support young transitional carers or mid-aged women beginning new caring. Health policies, education and awareness campaigns for women carers need to target outside previously identified populations.

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