Caregivers can play an important role in supporting and caring for people with progressive, life-threatening, or debilitating conditions. However, this supportive role can expose caregivers to various detrimental financial, physical, and psychosocial issues. When evaluating medical technologies for reimbursement decisions, health technology assessment (HTA) agencies typically focus on the treatment’s impact on patients and ignore or downplay the impact on caregivers. Including caregiver impacts within a wider societal perspective may better enable health systems to maximize health benefits from available resources. However, the lack of clear guidance or methodological recommendations from decision makers on the inclusion of caregiver impacts limits the number of HTA submissions that consider these effects. We outline a conceptual framework based on intensity and duration of caregiving to guide researchers, industry, and decision makers when developing policies for the inclusion of caregiver outcomes and justify their inclusion based on expected caregiver burden in identified circumstances.

Rapid demographic changes and heavy reliance on informal care pose significant challenges to meeting long-term care (LTC) needs in China. Understanding changes in unmet LTC needs across different times and places can inform future LTC system planning and care resource allocation, identifying emerging care needs and services gaps in different regions. Drawing on data from 6,030 urban and 5,070 rural residents in the Chinese Longitudinal Health Longevity Survey 2005–2017/18, this study investigates variations in unmet LTC needs across different age groups, periods and birth cohorts among Chinese older adults and their place-based rural–urban differences. We applied the age-period-cohort interaction model to disentangle the three temporal processes, and found that, overall, rural older adults experienced higher risk of unmet LTC needs and had larger variation in age effects, yet the age, period and cohort effects on unmet needs among rural older people differed from their urban counterparts. Although ‘younger’ older adults (aged below 85) had fewer care needs than older adults, they had a higher risk of experiencing unmet needs. The risk of having unmet needs did not change significantly over the 12 years, though unmet LTC needs were more pronounced among more-recent cohorts than previous generations, especially in urban areas. The findings contribute to the social gerontology debate regarding changing patterns in unmet LTC needs, and provide crucial policy insights, underscoring the necessity of targeted interventions to address ‘younger’ older adults’ care needs and increased investmed in the formal LTC system to tackle the escalating care gap.

The impact of health technologies may extend beyond the patient and affect the health of people in their network, like their informal carers. The National Institute for Health and Care Excellence (NICE) methods guide explicitly allows the inclusion of health-related quality of life (HRQoL) effects on carers in economic evaluations when these effects are substantial, but the proportion of NICE appraisals that includes carer HRQoL remains small. This paper discusses when inclusion of carer HRQoL is justified, how inclusion can be substantiated, and how carer HRQoL can be measured and included in health economic models. Inclusion of HRQoL in economic evaluations can best be substantiated by data collected in (carers for) patients eligible for receiving the intervention. To facilitate combining patient and carer utilities on the benefit side of economic evaluations, using EQ-5D to measure impacts on carers seems the most successful strategy in the UK context. Alternatives to primary data collection of EQ-5D include vignette studies, using existing values, and mapping algorithms. Carer HRQoL was most often incorporated in economic models in NICE appraisals by employing (dis)utilities as a function of the patient's health state or disease severity. For consistency and comparability, economic evaluations including carer HRQoL should present analyses with and without carer HRQoL.

This article uses the well-being valuation (WV) approach to estimate and monetize the well-being impacts of informal care provision on caregivers. Using nationally representative longitudinal data from the UK, the British Household Panel Survey, we address two challenging methodological issues related to the economic valuation of informal care: (i) the anticipatory nature of informal care; and (ii) the sensitivity of income estimates used in valuation. We address the anticipatory issue by focusing on well-being impacts associated with caring for a relative who had recently suffered a serious accident. We use the fixed effects filtered (FEF) estimator to estimate a “time-invariant income” coefficient free from individual fixed effects bias, which helps to partially improve the quality of the income estimate as an alternative to using instrumental variables. This estimate is used in the calculation of shadow prices of informal care. Our estimates suggest that, focusing on the first year of unanticipated care provision, those experiencing the well-being losses from providing unanticipated informal care would be willing to pay approximately £13,167 on average to avoid it.

Growing numbers of people help and support family members, friends or others due to long-term health problems, disability or older age–related needs. While care-giving can bring fulfilment and meaning to peoples’ lives, it can negatively affect individuals’ financial wellbeing. Much of the evidence in this area is quantitative, while the subjective, in-depth experience of how unpaid care decisions affect financial wellbeing remains relatively underexplored. This scoping review explores what is known about how unpaid carers experience and understand the financial consequences of providing care. It identified 35 studies containing qualitative evidence and, through thematic analysis, identified four overarching themes: (1) direct and indirect costs of caring; (2) social, cultural and institutional care and work decision-making; (3) the unequal cost of caring; and (4) personal finance and carer wellbeing. Findings indicate that unpaid caring affects financial wellbeing in multiple, overlapping ways. The financial consequences are experienced unequally, with systems, circumstances and contexts serving to exacerbate or reduce these negative effects. Crucially, our analysis reveals the paucity of qualitative research specifically focused on unpaid carers’ financial wellbeing. There is a significant gap in the literature regarding whether, and how, individuals understand the future financial implications of unpaid care-giving, or whether longer-term financial consequences are considered when making decisions about care. Future research designed to address this gap, with greater emphasis on the personal, social and structural influences on care-related financial decision-making, could offer important insights for developing policies and practices aimed at improving the financial wellbeing of carers as they age.

There is limited research on the effect of unpaid care on the public finances, and on the inequalities present when providing support to those with caring responsibilities. The aims of this research are to estimate the overall costs to the State of providing care, and to identify sub-groups of carers with relatively greater costs to the government who may need more support. We used waves eight to ten from the United Kingdom Household Longitudinal Survey and performed two-part Generalised Linear Models and Propensity Score Matching. We found that providing care is associated with excess and potentially avoidable costs to government in terms of forgone earnings-related tax revenue, welfare benefits, and health service use. Older carers have lower healthcare costs, indicating, perhaps, issues related to accessing to services due to their role (as they may neglect their own health, worry about safety and costs of public transport). Older carers were also found to have lower levels of welfare benefits, suggesting challenges associated with applying for support (such as navigating cumbersome application processes and stigma-related barriers).

Informal care plays an important role in the provision of care. However, previous research has mainly focused on middle- or older-aged informal carers and less is known about informal care among young adults, its consequences on educational achievement and employment transitions and whether this varies across country contexts. Using data from the 2009–2018 waves of the UK Household Longitudinal Study (N = 25,856) and the German Socio-Economic Panel (N = 16,666), we investigated the influence of informal care responsibilities of 17–29 year olds on their chances of achieving a university degree using logistic regression and employment transitions using Cox proportional hazard regression models. Our results revealed that young adulthood caring was negatively associated with the likelihood of obtaining a university degree, reduced the likelihood of entering employment and increased the likelihood of unemployment. These associations were more pronounced if people reported caring for more weekly hours (especially in the UK) or caring for longer durations (especially in Germany). The potential negative influence of caring in young adulthood on education was stronger for women than for men in Germany, and the influence of caring on entering unemployment was stronger for women than for men in the UK.

Malgré l’attention renouvelée de plusieurs médias sur la question des risques liés à la COVID-19 au sein de diverses communautés marginalisées au Québec, nous entendons encore très peu parler des personnes âgées immigrantes et de leurs proches. Dans cette note sur les politiques et pratiques, nous aborderons l’expérience du contexte pandémique chez les personnes âgées immigrantes montréalaises et leurs réseaux. Nous présenterons d’abord quelques données sociodémographiques sur les immigrants âgés montréalais. Nous exposerons ensuite nos constats sur les impacts de la COVID-19 sur les personnes âgées immigrantes, en particulier en ce qui concerne l’accès aux soins de la santé et aux services sociaux, la proche-aidance, l’emploi et le logement, à partir de nos travaux et de la littérature en gérontologie sociale. Nous terminerons en proposant quelques recommandations qui permettraient d’améliorer l’inclusion sociale des personnes âgées immigrantes et de leurs proches, autant en matière de politiques publiques que de pratiques sur le terrain.

Balancing caregiving duties and employment can be both financially and emotionally burdensome, especially when care is provided to a spouse at home. Caregiving subsidies can play a role in helping caregivers to cope with such duties. This paper demonstrates how providing financial respite for caregivers can influence individuals' decisions to retire early. We investigate the impact of a reform that extended long-term care (LTC) benefits (in the form of subsidies and supports) on the intention of a caregiving spouse to retire early in Spain. We subsequently examine the effect of austerity spending cuts reducing such publicly funded benefits, and we compare the estimates to the effects of an early retirement reform among private sector workers around the same time. Our preferred estimates suggest evidence of a 10pp reduction in early retirement intentions after the extension of LTC benefits even though the effect is heterogeneous by type of benefit. Consistently, austerity spending cuts in benefits are found to weaken retirement intentions. Even more importantly, our estimates suggest that cuts in caregiving subsidies exert a much stronger effect on early retirement intentions than actual early retirement reforms.

This study examines whether the gender gap in long-term care use in the Netherlands has changed between 1995 and 2016. Previous research has shown that women use more formal care services than men, while men use more informal care. In the past decades, there have been changes in the individual determinants of care use, such as health and social resources, and care provision. This raises the question of whether gender differences in care use have also changed over time. The Longitudinal Aging Study Amsterdam (LASA) involved respondents aged 70–88 in seven waves: 1995/96, 1998/99, 2002/03, 2005/06, 2008/09, 2011/12 and 2015/16 (N = 6,527 observations). Generalised estimating equations (GEE) were used to analyse changes in the impact of gender on the use of informal and formal home care, residential care and private home care, and the non-use of care. Men used more informal care provided by a partner than women, but women used other sources of care more than men. Individual social resources explained the gender gap in informal and formal home care use, and health and social resources explained the gap in residential care. In the non-use of care and, to some extent, in residential care use, the gender gap widened over the years to the disadvantage of men and was not explained by health and social resources. The persistent and even increasing gender gap in the non-use of care over time warrants an exploration of the role of gender in seeking care and access to care, and a closer examination of the role of long-term care policies in maintaining this gap.

The general discourse in health and social care policy purports digital technology as necessary to meet growing demands for long-term care and health care as a result of an ageing population. This needs critical investigation since public policy influences people's health and wellbeing. This study aims to interrogate critically what we call the ‘digital technology solution’ discourse in local Swedish health and social care policies. The main concern of our analysis is the discursive constructions of older people and their informal carers and how the concept of health is constructed. A discourse analysis was conducted of 61 local policy documents using the ‘What's the Problem Represented to Be’ method. Our analysis revealed that so-called ‘e-health strategies’ were rarely concerned with health. Health was often referred to as an activity and seen as a means to achieve independence among older people. The norm advocated independence, with the responsibility placed upon the older person, supported by digital technology. Informal carers were constructed as a resource within an older person's environment and largely taken for granted. We argue that the digital solution discourse ignores older people's agency and capacities as contributors to society, not least with regards to being providers of informal care.

Previous research has found varied effects of informal care provision on the carer's health status. Few studies have, however, examined this relationship dynamically. This paper is the first to analyse trajectories of care among men and women in mid-life and their impact on health outcomes using a nationally representative prospective cohort study. Data from three waves of the United Kingdom (UK) National Child Development Study (N = 7,465), when the respondents were aged 46, 50 and 55, are used to derive care trajectories capturing the dynamics of care provision and its intensity. Logistic regression investigates the impact of caring between the ages of 46 and 55 on the carers' report of depression and poor health at age 55. At age 46, 9 per cent of men and 16 per cent of women provided some level of informal care; rising to 60 per cent for both genders at ages 50 and 55. Just 7 per cent of women and 4 per cent of men provided care at all observation points, with the most common trajectory being ‘starting to care’ at ages 50 or 55. New carers experienced a lower risk of depression at age 55, reflecting that they may not have experienced the caring role long enough to have an adverse impact on their wellbeing. The findings highlight that the majority of individuals with surviving parents experience caring at some point during mid-life, underlining the need for further longitudinal research to better understand the complex relationships between care-giving and health for different groups of cares.

The number of dependent older people in England, as elsewhere, is projected to rise substantially, while the number of unpaid carers is not projected to rise by an equivalent amount. Barriers to people caring for older relatives have been theorised, however, there is a lack of understanding of attitudes to providing care in the future among people who are not currently carers. This paper presents qualitative analysis of interviews with 20 people in middle age about their willingness to care for older relatives in the future. Interviewees were asked their general views about who should provide care, then to consider future scenarios in which a close relative developed care needs. Willingness to care was influenced by beliefs about reciprocity, love and identity, beliefs about who was likely to provide the best quality and most appropriate care, and beliefs about how difficult caring would be. Older relatives’ care preferences were a key consideration. While some interviewees felt the best care would always be provided by family, others considered that professional skills were needed. Interviewees saw important roles for easily accessible information and advice, sharing care, including respite care, and financial support, in making it easier to provide care. The COVID-19 pandemic and lockdown had highlighted relevant issues for interviewees, which are discussed.

The ageing of the workforce suggests that many older adults will be combining work and care. While there is extensive evidence for the impact of informal care-giving on paid employment, there is less research on how work status may influence the provision of informal care. It has also yet to be established whether work preferences may influence the uptake of care-giving responsibilities, particularly for older workers. We investigated the impact of work status congruence on taking up informal care at two-year follow-up. A sample of 1,211 employed participants aged 55–70 years was surveyed over two consecutive waves. Involuntary part-time workers were more likely to provide care at Time 1 than involuntary full-timers, voluntary part-timers and voluntary full-timers. Participants were more likely to take up care if the opportunity costs of doing so were low, however, only for those whose preferences for more work were not met. There were no moderating effects of gender and economic living standards on the relationship between work status incongruence and provision of care-giving. Understanding the decision-making processes older workers undertake when taking up informal care are complex and must consider the influence of personal work preferences. These findings have implications for care and work-based policy given the importance of informal care in sustaining ageing-in-place policies.

In the context of current and expected demographic changes, the issues of which services the welfare state should offer and, ultimately, the very function of the welfare state are currently debated in Norway. The political discourse on health and care services for older adults has morphed into an accepted reality in which the system must be altered, prompting policy makers and stakeholders to find new and novel solutions to problems associated with population ageing. In this paper, we discuss one such proposed solution: the transformation of health and care services for the older adult population through the increased involvement of volunteers. We ask how volunteer efforts are articulated and delineated through official accounts and discuss the implications of such an articulation and delineation. We seek answers to these questions through a critical discourse analysis of recent governmental white papers. We investigate, in other words, volunteer efforts as a political instrument. We argue that the official representation of how efforts in health and care services should be re-aligned take the form of a distinct discourse of ‘voluntarism’. Within this ‘voluntarism’, volunteer efforts have been altered from a third sector comprising charity and non-profit organisations that contribute within or as a supplement to the largely public-run welfare system to a limitless and extensive concept that is blurring the boundaries to informal care.

The aim of this study is to investigate Dutch citizens’ care attitudes by looking at care-giving norms and citizens’ welfare state orientation and to explore to what extent these attitudes can be explained by combinations of diversity characteristics. We combined two datasets (2016 and 2018, N = 5,293) containing citizens’ opinions regarding society and conducted multivariate linear and ordered probit regression analyses. An intersectional perspective was adopted to explore the influence of combinations of diversity characteristics. Results show that citizens’ care-giving norms are relatively strong, meaning they believe persons in need of care should receive help from their families or social networks. However, citizens consider the government responsible for care as well. Men, younger people, people in good health and people of non-Western origin have stronger care-giving norms than others, and younger people assign relatively more responsibility to the family than the government. Level of education and religiosity are also associated with care attitudes. Primary diversity dimensions are more related to care attitudes than secondary, circumstantial dimensions. Some of the secondary dimensions interact with primary dimensions. These insights offer policy makers, social workers and (allied) health professionals the opportunity to align with citizens’ care attitudes, as results show that people vary to a large extent in their care-giving norms and welfare state orientation.

As a result of the rapid ageing of societies, meeting the demands for long-term care has become increasingly difficult. In the Netherlands, informal care is recognised as a key element to compensate for cut-backs in formal care provision. Formal, informal and privately paid long-term care services, however, are not used equally across socio-economic status (SES) groups and whether these inequalities have been reduced or exacerbated over time has not been researched. This study investigates to what extent educational and income inequalities in the use of formal, informal and privately paid care have changed over time. Data from the Longitudinal Aging Study Amsterdam (LASA) was used from three points in time: 1995 (N = 787), 2005 (N = 550) and 2015 (N = 473). Participants were between 75 and 85 years of age and living independently. The results indicate that lower SES groups are consistently more likely to use formal and informal care, and less likely to use privately paid care compared to higher SES groups. An increase in inequality was only found in the use of informal care; while informal care use is stable among lower SES groups, it decreases steeply among higher SES groups. These findings highlight the importance of education for explaining variation and changes over time in care use. Governmental efforts to mobilise informal care-givers might be outweighed by trends towards less long-term care.

Care strategies for older dependants are determined by not only individuals or network characteristics, but also contextual factors. The objective of this study is to determine whether urban contexts (neighbourhoods) are linked to the use of family care (informal), public services or private care at home (formal). We applied logistic regression analysis to data from the Survey of People in a Situation of Dependence 2018. The sample was composed of 530 older people (55 years old and over) living in two types of socio-economic groups of neighbourhoods in Barcelona, Spain. The type of neighbourhood is relevant in explaining the home care that older dependants receive. In neighbourhoods with a high socio-economic level, dependants are more likely to use private services and less likely to use informal care services and public services, even after controlling for household income, degree of dependency, sex, age and the number of people in the household. Understanding the factors that determine the use of public care services, private care services or family care-giving is important due to the increment in the number of older people in the population. Our results suggest that differences in urban socio-economic contexts determine some inequalities in the use of services even after controlling for socio-economic individual differences. The characteristics of neighbourhoods should be considered to adjust care policies for older dependants.