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Informal care plays a crucial role in the social care system in England and is increasingly recognised as a cornerstone of future sustainability of the long-term care (LTC) system. This paper explores the variation in informal care provision over time, and in particular, whether the considerable reduction in publicly-funded formal LTC after 2008 had an impact on the provision of informal care. We used small area data from the 2001 and 2011 English censuses to measure the prevalence and intensity (i.e. the number of hours of informal care provided) of informal care in the population. We controlled for changes in age structure, health, deprivation, income, employment and education. The effects of the change in formal social care provision on informal care were analysed through instrumental variable models to account for the well-known endogeneity. We found that informal care provision had increased over the period, particularly among high-intensity carers (20+ hours per week). We also found that the reduction in publicly-funded formal care provision was associated with significant increases in high-intensity (20+ hours per week) informal care provision, suggesting a substitutive relationship between formal and informal care of that intensity in the English system. [ABSTRACT FROM AUTHOR]

Drawing on a 2010 analysis of the reform and costs of adult social care commissioned by Downing Street and the UK Department of Health, this paper sets out projected future costs under different reform scenarios, reviews what happened in practice from 2010-19, explores the impact of the growing gap between need and funding, and explores the relationship between future spending and economic growth. In the process, it identifies a 'lost decade' in which policy makers failed to act on the warnings which they received in 2010, draws attention to the disproportionate impact of cuts on older people (compared to services for people of working age) and calls for urgent action before the current system becomes unsustainable. [ABSTRACT FROM AUTHOR]

This paper explores telecare manager and other 'stakeholder' perspectives on the nature, extent and impact of family and other unpaid/informal carers' involvement in the provision of telecare equipment and services for older people. Data used in the paper are derived from a larger study on telecare provision by local councils in England. The paper aims to add to the growing evidence about carers' engagement with electronic assistive technology and telecare, and considers this in the context of typologies of professionals' engagement with carers. How carers are involved in telecare provision is examined primarily from the perspectives of senior managers responsible for telecare services who responded to an online survey and/or were interviewed in 2016 as part of a wider study. The perspectives of three unpaid carers were captured in a separate strand of the main study, which comprised more detailed case study interviews within four selected councils. Thematic and comparative analysis of both qualitative and quantitative survey data revealed the varied involvements and responsibilities that carers assumed during the telecare provision process, the barriers that they needed to overcome and their integration in local council strategies. Findings are discussed in the context of Twigg and Atkin's typology of carer support. They suggest that carers are mainly perceived as 'resources' and involvement is largely taken for granted. There are instances in which carers can be seen as 'co-workers': this is mainly around responding to alerts generated by the telecare user or by monitored devices, but only in those councils that fund response services. Though some participants felt that telecare devices could replace or 'supersede' hands-on care that involved routine monitoring of health and wellbeing, it was also acknowledged that its use might also place new responsibilities on carers. Furthermore, the study found that meeting carers' own rights as 'co-clients' was little acknowledged. [ABSTRACT FROM AUTHOR]

The social risk literature examines the extent to which states have provided social protection against the ‘old’ social risks of the post-war era and the ‘new’ social risks affecting post-industrial capitalist states. In this paper the contingency of the provision of informal care to people aged 65 and over is discussed. The paper deconstructs the concept of social risk to determine the characteristics and processes which contribute to states recognising specific contingencies as social risks which require social protection. This conceptualisation is applied to make the case that care-related risks associated with the informal care of older people should be recognised and treated as social risks by states. Data from a qualitative study of the English care policy system provide empirical evidence that informal care-related risks are recognised, but not treated, as social risks in England. The findings reveal informal carers, and the older people they care for, receive inadequate and inconsistent statutory protection against the poverty and welfare risks they face. Furthermore the design and operationalisation of the English care policy system generates risks for care relationships. [ABSTRACT FROM PUBLISHER]

With the continued implementation of the personalisation policy, Personal Budgets (PBs) have moved to the mainstream in adult social care in England. The relationship between the policy goals of personalisation and safeguarding is contentious. Some have argued that PBs have the potential to empower recipients, while others believe PBs, especially Direct Payments, might increase the risk of abuse.This paper provides empirical evidence about levels of uptake of PBs and safeguarding referrals in England based on in-depth analysis of national data at aggregate, local council level in England, covering 152 Councils. This is complemented by analysis of 2,209 individual referral records obtained from three purposively selected study sites. The aim is to explore whether available data could provide evidence of association between the uptake of PBs and safeguarding referrals. Analysis of the national dataset found no significant relationships between PB uptake and the level and type of alleged abuse. However, analysis of individual-level referral data, from the three selected sites did find some significant associations particularly with financial abuse; and found the main perpetrators of the alleged abuse to be home-care employees. The findings are discussed within the context of current policy and practice. [ABSTRACT FROM AUTHOR]

This paper explores the different ways in which informal carers for people with dementia negotiate their care-giving role across the changing organisational and spatial landscape of care. In-depth qualitative data are used to argue that the decisions of carers are socially situated and the result of negotiations involving individuals, families and wider cultural expectations. These decisions affect where care occurs. In addressing these issues this paper draws attention to the lack of choice some carers may have in taking on the care-giving role; how and why carers draw upon support; and the different expectations of the care-giver's capabilities across the different sites of care, specifically at home and in nursing homes. It concludes that research and policy attention should focus on how the expectations about the role and abilities of carers are affected by where, and how, care is delivered. In doing so this paper contributes to the emerging health geography literature on care-giving as well as developing the spatial perspective in the established gerontological literature. [ABSTRACT FROM PUBLISHER]

The independent sector domiciliary care market has always been an integral part of the social care system in England, but has become especially important in recent years. Its smooth running is crucial for the delivery of an effective community care policy. This paper argues that the motivations of these providers is an important aspect of this system's functioning, and derives a typology which captures the most important ingredients which theory and practice suggest should be taken into account in this regard. Four provider types are identified; they can be labelled satisfied team players; demoralised isolates; ambivalence-experiencing go-getters; and ambivalence-experiencing quiet lifers. The categories reflect both the balance of intrinsic and extrinsic motivations, and these providers' situational contexts, including the nature of the relationships developed with local authority purchasers. The latter exert exceptional power and influence in social care markets in England. [ABSTRACT FROM AUTHOR]

Background: Early intervention services (EIS) comprise low-stigma, youth-friendly mental health teams for young people undergoing first-episode psychosis (FEP). Engaging with the family of the young person is central to EIS policy and practice.AimsBy analysing carers' accounts of their daily lives and affective challenges during a relative's FEP against the background of wider research into EIS, this paper explores relationships between carers' experiences and EIS., Method: Semi-structured longitudinal interviews with 80 carers of young people with FEP treated through English EIS., Results: Our data suggest that EIS successfully aid carers to support their relatives, particularly through the provision of knowledge about psychosis and medications. However, paradoxical ramifications of these user-focused engagements also emerge; they risk leaving carers' emotions unacknowledged and compounding an existing lack of help-seeking., Conclusions: By focusing on EIS's engagements with carers, this paper draws attention to an urgent broader question: as a continuing emphasis on care outside the clinic space places family members at the heart of the care of those with severe mental illness, we ask: who can, and should, support carers, and in what ways?, (© The Royal College of Psychiatrists 2015.)

Improving responsiveness to the needs of older people from minority ethnic communities has been emphasised as a goal in England since the publication of the National Service Framework for Older People in 2001. Despite this, people from minority ethnic groups consistently give poorer ratings of their health services than ‘majority’ populations, both in England and across many other health-care systems. Language barriers have been shown to play a particularly important role, and appear to be a stronger predictor of perceived quality of care than ethnic origin per se. This paper reports findings from a larger study exploring older people's experiences of care transitions, focusing on the findings from one case study area which explored the hospital and discharge experiences of older people from minority ethnic communities. A participatory approach was adopted, with older people from the local area collaborating in the design, delivery and analysis of the research as ‘co-researchers’. Twenty-four in-depth narrative interviews were carried out with people who had experienced a recent hospital stay as a patient or a family member providing care and support. Our findings show that many aspects of the hospital experience, including the desire for personalised and humanistic approaches to care, are important to older people irrespective of ethnic background. However, older people from minority ethnic communities can also face language and cultural barriers which negatively affect the quality and experience of care. People who had limited English proficiency struggled to understand, communicate and participate in their care. Where professional services were not available or requested, interpreting was provided informally by other patients, family members, hospital staff in clinical and domestic roles, or not at all. We conclude that targeted strategies are required to ensure appropriate and effective hospital services for a multicultural population. [ABSTRACT FROM PUBLISHER]

This paper investigates the prevalence of incapacity in performing daily activities and the associations between household composition and availability of family members and receipt of care among older adults with functioning problems in Spain, England and the United States of America (USA). We examine how living arrangements, marital status, child availability, limitations in functioning ability, age and gender affect the probability of receiving formal care and informal care from household members and from others in three countries with different family structures, living arrangements and policies supporting care of the incapacitated. Data sources include the 2006 Survey of Health, Ageing and Retirement in Europe for Spain, the third wave of the English Longitudinal Study of Ageing (2006), and the eighth wave of the USA Health and Retirement Study (2006). Logistic and multinomial logistic regressions are used to estimate the probability of receiving care and the sources of care among persons age 50 and older. The percentage of people with functional limitations receiving care is higher in Spain. More care comes from outside the household in the USA and England than in Spain. The use of formal care among the incapacitated is lowest in the USA and highest in Spain. [ABSTRACT FROM PUBLISHER]

Cash-for-care schemes offering cash payments in place of conventional social services are becoming commonplace in developed welfare states; however, there is little evidence about the impact of such schemes on older people. This paper reports on the impact and outcomes for older people of the recent English Individual Budget (IB) pilot projects (2005–07). It presents quantitative data on outcome measures from structured interviews with 263 older people who took part in a randomised controlled trial and findings from semi-structured interviews with 40 older people in receipt of IBs and with IB project leads in each of the 13 pilot sites. Older people spent their IBs predominantly on personal care, with little resources left for social or leisure activities; and had higher levels of psychological ill-health, lower levels of wellbeing, and worse self-perceived health than older people in receipt of conventional services. The qualitative interviews provide insights into these results. Potential advantages of IBs included increased choice and control, continuity of care worker, and the ability to reward some family carers. However, older people reported anxieties about the responsibility of organising their own support and managing their budget. For older people to benefit fully from cash-for-care schemes they need sufficient resources to purchase more than basic personal care; and access to help and advice in planning and managing their budget. [ABSTRACT FROM PUBLISHER]

Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the wellbeing and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered how negative effects might be mitigated. We conducted semi-structured telephone interviews with 11 people with dementia and 11 family carers who were ongoing participants in the IDEAL cohort during the initial 'lockdown' period in May and June 2020, and follow-up interviews with five people with dementia and two carers as restrictions were eased in July. We analysed interview data and triangulated the findings with issues raised in dementia-specific online forums. Findings showed some people with dementia were coping well, but others experienced a range of negative impacts, with varying degrees of improvement as restrictions were eased. The need for clear personalised information relating to COVID-19 and the value of support in the form of regular 'just checking' phone calls was emphasised. This exceptional situation provides a natural demonstration of how social and psychological resources shape the potential to 'live well' with dementia. While some support is recommended for all, a personalised approach to determine needs and coping ability would ensure that further practical and emotional support is targeted effectively. [ABSTRACT FROM AUTHOR]

A key feature of population ageing in Europe and other more economically developed countries is the projected unprecedented rise in need for long-term care in the next two decades. There is, however, considerable uncertainty over the future supply of unpaid care for older people by their adult children. The future of family care is particularly important in countries planning to reform their long-term care systems, as is the case in England. This article makes new projections of the supply of intense unpaid care for parents aged 65 and over in England to 2032, and compares these projections with existing projections of demand for unpaid care by older people with disabilities from their children. The results show that the supply of unpaid care to older people with disabilities by their adult children in England is unlikely to keep pace with demand in future. By 2032, there is projected to be a shortfall of 160,000 care-givers in England. Demand for unpaid care will begin to exceed supply by 2017 and the unpaid ‘care gap’ will grow rapidly from then onwards. The article concludes by examining how far this unpaid ‘care gap’ is likely to be met by other sources of unpaid care or by developments in new technology and examines the implications of the findings for long-term care policy. [ABSTRACT FROM PUBLISHER]

There is evidence that older widowed women provide narrative accounts of the events that led up to the deaths of their husbands. These accounts are qualitatively different from other parts of their interviews. This study examines interviews from older widowers and asks what features characterise their narrative accounts of their wife's death. The data show that men do speak of the death of their wife in a qualitatively different way than they do of other matters: women speak emotionally whilst men speak of their behaviour. Using Kirsi, Hervonen and Jylhä's typology of male care-givers, we find that their interviews are characterised by four types of speech: factual, agentic, familistic and destiny speech. In addition, we find two additional speech types related to blame – one related to medical negligence (a subset of destiny speech) and one to self-blame (a subset of familistic speech). We argue that the use of these patterns of speech allow men to preserve their masculine identities at a time when bereavement puts them under intense strain. [ABSTRACT FROM PUBLISHER]

The introduction of cash-for-care schemes such as individual or personal budgets in England has been seen as central to the personalisation agenda for reforming the delivery of adult social care. However, despite there being 5.2 million carers in England and Wales, the initiative concentrates predominantly on the needs of the service user. The implementation of individual budgets (IBs) was piloted within 13 local authorities during 2005–2007 and the Department of Health commissioned an independent evaluation of this pilot (IBSEN). The focus was only on the service user in the evaluation and therefore a separate but linked study was set up to evaluate the impact and outcomes of IBs on carers. Carers of service users who had consented to take part in the main IBSEN study were identified and invited to participate in a follow-up study aimed at exploring how IBs impacted on carers and the caring role. The study found that the receipt of the budget was significantly associated with positive impacts on carers' reported quality of life and, when other factors were taken into account, with social care outcomes. These outcome gains were achieved despite no higher costs being incurred to the public purse, thus suggesting that IBs for service users are cost-effective for carers. [ABSTRACT FROM PUBLISHER]

Future increases in need of old-age care warrant research on receipt of informal care among older people in different policy and cultural contexts. Separating informal care into help provided by spouse and by children may shed more light on dynamics of informal help, important in alleviating the demands on the formal sector. Using nationally representative data from England and Finland, we performed logistic regression analyses to study receipt of help from spouse and children among community-dwelling persons aged 70+ years with functional limitations. In both countries, women and those with more functional limitations had higher odds of receiving spousal and filial help. In England – but not in Finland – those receiving formal public help had lower odds of receiving spousal help than those with no formal help. Those with low education received more filial help in England, but no association was found between formal and filial help. In Finland, the effect of education was not significant but those receiving formal help had higher odds of also receiving filial help. The results suggest that in a liberal market-led state, the role of children may be to help their parents living alone and with low financial resources. In the context of a generous welfare state, children may function more as active agents bridging the gap between their parents and formal services. [ABSTRACT FROM PUBLISHER]