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With contributions from a range of experts across OECD countries, this book examines changes in long-term care systems throughout those countries, discussing and comparing key changes in national policies and examining the main successes and failures of recent reforms.

AbstractFollowing more than a decade of intense debate, the long‐term care system in England may be on the verge of major change. We argue that the current system can be characterized as a residual system where care is free only to those who cannot afford to pay for themselves, with access heavily targeted to those with the highest levels of needs and with no informal care, and with substantial local variation in access and means‐testing for home care. It is also characterized by a mixed economy of supply of care and a mixed economy of finance. The government Green Paper has proposed a major shift from diverse local systems to a new National Care Service, with a national entitlement to some public support for all those who are assessed as needing it. The government has also recently announced that it will make personal care at home free to those with the highest needs. If implemented, the proposals included in the Green Paper would, at minimum, introduce a 'quasi‐universal' system, in which some level of assistance is provided to all those with eligible social care needs.

AbstractThe projected increase in older dependent adults will continue straining formal care services whilst increasing the reliance on unpaid carers, in England and internationally. While motivations and willingness to care among unpaid carers have been explored, expectations around the caregiving role remain under‐researched. This article delves into expectations of middle‐aged individuals around providing care to an older parent in the future. Data collected through six focus groups with 35 mid‐life individuals, a mix of individuals with and without caring experience, were analysed thematically, cross‐sectionally, and with reference to different phases in the caregiving trajectory. Participants showed predicted, in some cases normative, expectations about taking on the role of carer for an older parent. Such expectations were rooted in emotional and socio‐cultural factors and influenced how people self‐identified as a carer. Expectations about what the role would entail were unformed: they were described as conditional on the uncertain and changing care needs of the older parents ('caregiving creep'). Those with caring experience highlighted that, in hindsight, their prior expectations did not match their actual experience of the role, requiring greater time commitment and impacting their life in ways they had not anticipated. When thinking about the future, participants envisaged stepped changes in care arrangements to meet increasing, albeit uncertain, care needs, but acknowledged their lack of awareness around the care options available to them. Policies aiming to improve general awareness about caregiving, support early identification of carers, and address their information need throughout their caregiving journey should be a priority.

The UK Government recently announced plans to reform the system that determines how much the state contributes to people's long-term care costs. The reforms will start in 2016 and introduce a lifetime cap on the costs an individual will need to pay towards 'eligible' care and support needs. They will also increase the upper capital threshold above which care home residents are ineligible for local authority help with their care home fees. This increase will extend the possibility of state support to those care home residents who are currently excluded from state help because they have capital, usually including the value of their home, above the current capital threshold of £23,250. The lifetime cap is expected to be £75,000 in 20171, and the upper capital threshold in residential care will be increased to £123,000. This paper examines projected costs and distributional effects of these plans compared with the current system. It also contrasts these costs and distributional effects with the central recommendation of the Commission on the Funding of Care and Support (Dilnot Commission) which was set up by the Government and reported in 2011. The Commission's central recommendation was for a cap of £35,000 and upper capital threshold of £100,000 in 2010 prices. We also consider two variants on the Government's plans which would give additional help to recipients of residential care with capital below the proposed higher capital threshold (see Box 1 for how these compare with the current system, the Government's plans and the recommendations of the Dilnot Commission).

Many long-term care systems in economically developed countries are reliant on informal care. However, in the context of population ageing, there are concerns about the future supply of informal care. This article reports on projections of informal care receipt by older people with disabilities from spouses and (adult) children to 2032 in England. The projections show that the proportions of older people with disabilities who have a child will fall by 2032 and that the extent of informal care in future may be lower than previously estimated. The policy implications, in the context of the Dilnot Commission's report, are explored.

The future market costs of long-term care for older people will be affected by the extent of informal care. This paper reports on projections of receipt of informal care by disabled older people from their spouses and (adult) children to 2031 in England. The paper shows that, over the next 30 years, care by spouses is likely to increase substantially. However, if current patterns of care remain the same, care by children will also need to increase by nearly 60 per cent by 2031. It is not clear that the supply of care by children will rise to meet this demand.

The personalisation of residential care services is based on three broad principles of valuing personal identity, empowering resident decision-making and fostering care relationships. We analysed 50 Care Quality Commission care home inspection reports to identify factors that the reports indicate facilitate or hinder the delivery of personalised residential care in England. Findings suggest that the provision of personalised services is affected by staff skills, attitudes and availability, as well as the quality of care home leadership. Future care policy should consider addressing external pressures facing the care home sector, including inadequate funding and too few staff, to mitigate barriers to delivering high-quality, personalised care.

This study examined people's perceptions and behaviours in relation to planning for their social care needs, and their values and priorities concerning how social care should be funded. Eight deliberative focus groups were conducted in May 2018 with 53 participants, aged 25-82 years, in London, Manchester and rural locations near York and Sheffield. Multiple uncertainties created barriers to planning for social care needs including not knowing how much to save, not thinking it possible for an average person to save enough to meet significant needs, reluctance to plan for something potentially unnecessary, lack of suitable and secure ways of saving, and a perception of social care policy as unsettled. Participants also had significant concerns that they would not be able to obtain good-quality care, regardless of resources. In addition, it was commonly thought unrealistic to expect families to provide more than low-intensity, supplementary care, while use of housing assets to pay for care was considered unfair, both for home-owners who could lose their assets and non-home-owners who were left reliant on the state although it was more acceptable where people were childless or had substantial assets. Participants thought any new arrangements should be inclusive, personally affordable, sustainable, transparent, good-quality and honest. They preferred to contribute regularly rather than find considerable sums of money at times of crisis, and preferred to risk-pool, with everyone obliged or heavily encouraged to contribute. Transparency was valued so those better at 'working the system' were not able to benefit unfairly and participants wanted to know that, if they contributed, they would be assured of good-quality care. Trust in Government and other institutions, however, was low. New funding arrangements should incorporate measures to increase transparency and trust, be clear about the responsibilities of individuals and the state, provide meaningful options to save, and place significant focus on improving actual ...

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Context: Direct payments (DP) – cash for care – have been promoted in England as a mechanism to enhance the choice and control of service users living in community settings who are eligible for state-funded care. In 2011, the government decided to pilot DPs in residential care in a few areas and to commission an evaluation of the pilot programme. Objective: To explore the experiences of care home residents and their families offered a DP, in terms of choice of and control over their care and of their consumer power in local care home markets. Methods: We held 34 semi-structured interviews with care home residents and family members as part of the evaluation. Interviews were analysed using the "Antagonisms of Choice" framework to study the frictions caused by promoting self-directed care via private market mechanisms within publicly funded systems. Findings: Findings suggest unequal access to DPs according to residents' access to family networks, level of cognitive function and underlying physical health. Some participants expressed concern about the effects of DPs on quality of care home services. Several family members using DPs perceived enhanced power in relation to the care providers; others saw no benefit from DPs. Limitations: Uptake of DPs was lower than expected, potentially limiting the generalisability of these findings.

This article reports findings from the evaluation of the Direct Payments in Residential Care Trailblazers in England (2014–16). It focuses on the perspective of residential care providers on implementing direct payments, which aimed to improve the level of choice and control over care available to their residents. The article explores the views of providers, using interviews and survey responses of care home managers and owners. Concerns expressed by providers include issues that have arisen in domiciliary care but also issues specific to residential care, especially challenges in facilitating greater choice and control in settings that provide care collectively for substantial numbers of residents.

BACKGROUND: The UK government introduced two financial incentive schemes for primary care to tackle underdiagnosis in dementia: the 3-year Directed Enhanced Service 18 (DES18) and the 6-month Dementia Identification Scheme (DIS). The schemes appear to have been effective in boosting dementia diagnosis rates, but their unintended effects are unknown. AIM: To identify and quantify unintended consequences associated with the DES18 and DIS schemes. DESIGN AND SETTING: A retrospective cohort quantitative study of 7079 English primary care practices. METHOD: Potential unintended effects of financial incentive schemes, both positive and negative, were identified from a literature review. A practice-level dataset covering the period 2006/2007 to 2015/2016 was constructed. Difference-in-differences analysis was employed to test the effects of the incentive schemes on quality measures from the Quality and Outcomes Framework (QOF); and four measures of patient experience from the GP Patient Survey (GPPS): patient-centred care, access to care, continuity of care, and the doctor–patient relationship. The researchers controlled for effects of the contemporaneous hospital incentive scheme for dementia and for practice characteristics. RESULTS: National practice participation rates in DES18 and DIS were 98.5% and 76% respectively. Both schemes were associated not only with a positive impact on QOF quality outcomes, but also with negative impacts on some patient experience indicators. CONCLUSION: The primary care incentive schemes for dementia appear to have enhanced QOF performance for the dementia review, and have had beneficial spillover effects on QOF performance in other clinical areas. However, the schemes may have had negative impacts on several aspects of patient experience.

AbstractIn 2012, the Government invited local councils in England to participate in a pilot programme to test direct payments in residential care. While the programme was set up to allow for comprehensive summative evaluation, the uptake of direct payments in residential care was substantially lower than anticipated, with only 40 people in receipt of one at the end of the programme. Drawing on qualitative data collected for the evaluation, this paper aims to understand better the barriers to implementing direct payments in residential care. Evidence from the use of direct payments in domiciliary care identified gatekeeping by council frontline staff as a major barrier for service users to access direct payments. Our findings suggest that, whilst selectivity of both service users and providers was an integral part of the programme design, gatekeeping does not fully explain the poor take-up. Other factors played a part, such as lack of clarity about the benefits of direct payments for care home residents, the limited range and scope of choice of services for residents, and concerns from care providers about the financial impact of direct payments on their financial sustainability.