The 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.

Ensuring distributive fairness in the long-term care sector is vitally important in the context of global population ageing and rising care needs. This study, part of the DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) programme, investigates socioeconomic inequality and inequity in the utilisation of long-term care for older people with and without dementia in England. The data come from three waves of the English Longitudinal Study of Ageing (ELSA, Waves 6–8, N = 16,458). We find that older people with dementia have higher levels of care needs and a lower socioeconomic status than those without dementia. The distribution of formal and informal care is strongly pro-poor. When care needs are controlled for, there is no significant inequality of formal or informal care among people with dementia, nor of informal care among people without dementia, but there is a significant pro-rich distribution of formal care among people without dementia. Unmet care needs are significantly concentrated among poorer people, both with and without dementia. We argue that the long-term care system in England plays a constructive role in promoting socioeconomic equality of long-term care for people with dementia, but support for older people with lower financial means and substantial care needs remains insufficient. Increased government support for older people is needed to break the circle between care inequality and health inequality.

BackgroundWhile medical costs of chickenpox have been researched, little is known about indirect costs. Understanding total costs is important for decisions about vaccination. This study estimated the value of lost productivity of adults missing work to care for children with chickenpox.Research design and methodsIt comprised an international literature review, an online survey of 1,526 parents of children aged 1-11 years, and computation of indirect costs of chickenpox in the UK. The survey covered chickenpox episodes amongst respondents' children, time children took off school/nursery, and work absenteeism by parents/caregivers caring for them.ResultsRespondents reported on 2,283 children, of whom 52% (1185/2283) experienced chickenpox. Almost half (591/1185) missed days of school/nursery, averaging 5.6 days missed. In 260 cases of 542 adults providing data with such a child, an adult missed work to care for the child. The daily value of this lost productivity was 170 pound. There were approximately 200,000 GP consultations for chickenpox and 625,000 births annually, suggesting the annual chickenpox incidence lies between these figures. The estimated annual UK productivity loss due to chickenpox is 20- pound 70 pound million ($25-$90 million).ConclusionsAnnual value of lost productivity due to chickenpox is in range 20 pound to 70 pound million.

We examined the costs and cost-effectiveness of the Meeting Centre Support Programme (MCSP) implemented and piloted in the UK, Poland and Italy, replicating the Dutch Meeting Centre model. Dutch Meeting Centres combine day services for people with dementia with carer support. Data were collected over 2015-2016 from MCSP and usual care (UC) participants (people with dementia-carer dyads) at baseline and 6 months. We examined participants' health and social care (HSC), and societal costs, including Meeting Centre (MC) attendances. Costs and outcomes in MCSP and UC groups were compared. Primary outcomes: Persons with dementia: quality-adjusted life years (EQ-5D-5L-derived); QOL-AD. DQoL was examined as a secondary outcome. Carers: Short Sense of Competence Questionnaire (SSCQ). Incremental cost-effectiveness ratios (ICER) and cost-effectiveness acceptability curves were obtained by bootstrapping outcome and cost regression estimates. Eighty-three MCSP and 69 UC dyads were analysed. The 6-month cost of providing MCSP was €4,703; participants with dementia attended MC a mean of 45 times and carers 15 times. Including intervention costs, adjusted 6-month HSC costs were €5,941higher in MCSP than in UC. From the HSC perspective: in terms of QALY, the probability of cost-effectiveness was zero over willingness-to-pay (WTP) ranging from €0 to €350,000. On QOL-AD, the probability of cost-effectiveness of MCSP was 50% at WTP of €5,000 for a one-point increase. A one-point gain in the DQoL positive affect subscale had a probability of cost-effectiveness of 99% at WTP over €8,000. On SSCQ, no significant difference was found between MCSP and UC. Evidence for cost-effectiveness of MCSP was mixed but suggests that it may be cost-effective in relation to gains in dementia-specific quality of life measures. MCs offer effective tailored post-diagnostic support services to both people with dementia and carers in a context where few evidence-based alternatives to formal home-based social services may be available.

Loneliness and social isolation have become significant concerns in many countries, particularly amongst people experiencing mental health problems. A social intervention-Connecting People-has been found to increase their access to social capital, though it has been difficult to implement with high fidelity in community mental health teams (CMHTs) in England. This study aimed to evaluate outcomes for mental health service users of a practitioner-led implementation of Connecting People in CMHTs. It used a pragmatic non-randomised two-group pre-post study to evaluate the implementation process in CMHTs. Implementation materials co-produced with service users were provided to the intervention teams for practitioners to use with the support of a senior social worker in each mental health National Health Service Trust (n = 5). Service users were interviewed at baseline (n = 151) and at six-month follow-up (n = 127), and their outcome and cost data were analysed on an intention-to-treat basis. Analysis of primary and secondary outcome variables found no differences between the intervention and control groups. The economic evaluation found no significant differences between groups in mean costs or outcomes. The findings suggest that it could be difficult for social workers to implement Connecting People in CMHTs or that it does not improve outcomes for CMHT users.

Modelling Outcome and Cost Impacts of Interventions for Dementia (MODEM) study (www.modem-dementia.org.uk).

Abstract Background The number of older people with dementia and the cost of caring for them, already substantial, are expected to rise due to population ageing. Objective This study makes projections of the number of older people with dementia receiving unpaid care or using care services and associated costs in England. Methods The study drew on up-to-date information for England from multiple sources including data from the CFASII study, output from the PACSim dynamic microsimulation model, Office for National Statistics population projections and data from the MODEM cohort study. A simulation model was built to make the projections. Results We project that the number of older people with dementia will more than double in the next 25 years. The number receiving unpaid or formal care is projected to rise by 124%, from 530,000 in 2015 to 1,183,000 in 2040. Total cost of dementia is projected to increase from £23.0 billion in 2015 to £80.1 billion in 2040, and average cost is projected to increase from £35,100 per person per year in 2015 to £58,900 per person per year in 2040. Total and average costs of social care are projected to increase much faster than those of healthcare and unpaid care. Conclusion The numbers of people with dementia and associated costs of care will rise substantially in the coming decades, unless new treatments enable the progression of the condition to be prevented or slowed. Care and support for people with dementia and their family carers will need to be increased.

ObjectivesThis study measures the average per person and annual total costs of dementia in England in 2015.Methods/DesignUp‐to‐date data for England were drawn from multiple sources to identify prevalence of dementia by severity, patterns of health and social care service utilisation and their unit costs, levels of unpaid care and its economic impacts, and other costs of dementia. These data were used in a refined macrosimulation model to estimate annual per‐person and aggregate costs of dementia.ResultsThere are around 690 000 people with dementia in England, of whom 565 000 receive unpaid care or community care or live in a care home. Total annual cost of dementia in England is estimated to be £24.2 billion in 2015, of which 42% (£10.1 billion) is attributable to unpaid care. Social care costs (£10.2 billion) are three times larger than health care costs (£3.8 billion). £6.2 billion of the total social care costs are met by users themselves and their families, with £4.0 billion (39.4%) funded by government. Total annual costs of mild, moderate, and severe dementia are £3.2 billion, £6.9 billion, and £14.1 billion, respectively. Average costs of mild, moderate, and severe dementia are £24 400, £27 450, and £46 050, respectively, per person per year.ConclusionsDementia has huge economic impacts on people living with the illness, their carers, and society as a whole. Better support for people with dementia and their carers, as well as fair and efficient financing of social care services, are essential to address the current and future challenges of dementia.

Economic research on autism and implications for Scotland, including how the economic cost of autism can inform strategy and planning.

MethodsWe used a two-pronged approach for this study of the economics of caring, combining a review of existing international evidence with quantitative modelling of unpaid care demand and supply, and of the impact of a small number of possible policy reforms aimed at supporting carers.We used two linked projections models. For the demand side, we used our existing PSSRU long-term care projections model. It produces projections of the overall numbers of disabled older people, the numbers receiving unpaid care and/or formal services, and public and private expenditure on long-term care for older people. For the supply side, we developed a new model for the present study to project the numbers of adults providing unpaid care to older people, with a detailed breakdown by the characteristics of the carer.

Objectives: Identify if cost-effectiveness of Maintenance Cognitive Simulation Therapy (MCST) differs by type of living arrangement and cognitive ability of the person with dementia. Next, a value of information analysis is performed to inform decisions about future research. Methods: Incremental cost-effectiveness analysis applying seemingly unrelated regressions using data from a multicentre RCT of MCST versus treatment as usual in a population which had already received 7 weeks of CST for dementia (ISRCTN: 26286067). The findings from the cost-effectiveness analysis are used to inform a value of information analysis. Results: The results are dependent upon how quality adjusted life years (QALYs) are measured. MCST might be cost-effective compared to standard treatment for those who live alone and those with higher levels of cognitive functioning. If a further RCT was to be conducted for this sub-group of the population, value of information analysis suggests a total sample of 48 complete cases for both sub-groups would be required for a two-arm trial. The expected net gain of conducting this future research is £920 million. Conclusion: Preliminary results suggest that MCST may be most cost-efficient for people with dementia who live alone and/or who have higher cognition. Future research in this area is needed.

ObjectivesMEETINGDEM investigated whether the Dutch Meeting Centres Support Programme (MCSP) could be implemented in Italy, Poland, and the UK with comparable benefits. This paper reports on the impact on people living with dementia attending pilot Meeting Centres in the 3 countries. MethodsNine pilot Meeting Centres (MCs) participated (Italy5, Poland2, UK2). Effectiveness of MCSP was compared with Usual Care (UC) on outcomes measuring behavioural and psychological symptoms (NPI), depression (CSDD), and quality of life (DQoL, QOL-AD), analysed by ANCOVAs in a 6-month pre-test/post-test controlled trial. ResultsPre/post data were collected for 85 people with dementia and 93 carers (MCSP) and 74 people with dementia /carer dyads' receiving UC. MCSP showed significant positive effects for DQoL [Self-esteem (F=4.8, P=0.03); Positive Affect (F=14.93, P<0.00); Feelings of Belonging (F=7.77, P=0.01)] with medium and large effect sizes. Higher attendance levels correlated with greater neuropsychiatric symptom reduction (rho=0.24, P=0.03) and a greater increase in feelings of support (rho=0.36, P=0.001). ConclusionsMCSPs showed significant wellbeing and health benefits compared with UC, building on the evidence of effectiveness from the Netherlands. In addition to the previously reported successful implementation of MCSP in Italy, Poland, and the UK, these findings suggest that further international dissemination of MCSP is recommended.

Objectives: The MEETINGDEM research project aimed to implement the combined Dutch Meeting Centre Support Programme (MCSP) for community-dwelling people with dementia and caregivers within Italy, Poland and UK and to assess whether comparable benefits were found in these countries as in the Netherlands. Method: Nine pilot Meeting Centres (MCs) participated (Italy-5, Poland-2, UK-2). Effectiveness of MCSP was compared to usual care (UC) on caregiver outcomes measuring competence (SSCQ), mental health (GHQ-12), emotional distress (NPI-Q) and loneliness (UCLA) analysed by ANCOVAs in a 6-month pre-test/post-test controlled trial. Interviews using standardised measures were completed with caregivers. Results: Pre/post data were collected for 93 caregivers receiving MCSP and 74 receiving UC. No statistically significant differences on the outcome measures were found overall. At a country level MC caregivers in Italy showed significant better general mental health (p = 0.04, d = 0.55) and less caregiver distress (p = 0.02, d = 0.62) at post-test than the UC group. Caregiver satisfaction was rated on a sample at 3 months (n = 81) and 6 months (n = 84). The majority of caregivers reported feeling less burdened and more supported by participating in MCSP. Conclusion: The moderate positive effect on sense of competence and the greater mental health benefit for lonely caregivers using the MCSP compared to UC as found in the original Dutch studies were not replicated. However, subject to study limitations, caregivers in Italy using MCSP benefitted more regarding their mental health and emotional distress than caregivers using UC. Further evaluation of the benefits of MCSP within these countries in larger study samples is recommended.

Globally and locally, ongoing demographic, sociocultural and economic changes have implications for unpaid carers. For those who provide unpaid care, particularly at higher intensities, there is substantial evidence of negative effects on employment, health and wellbeing, with associated individual and societal costs. For these reasons, there is increasing policy emphasis on supporting unpaid care in the UK, mirrored, and in some cases exceeded, internationally.This paper aims to provide an overview of the international evidence on effective support for unpaid carers. This evidence synthesis finds an extensive literature on a wide range of potentially effective interventions to support unpaid carers under the broad categories of indirect support (services for the care-recipient), direct support (such as psychological therapies), work conditions, and combinations of these. However, there are significant gaps in the evidence base with regards to interventions, outcomes and types of caring situation studied, with a dearth of evidence on cost-effectiveness and few evaluations of key recent policy initiatives. Evidence is strongest and most consistent for formal care services for people with care needs (so-called ‘replacement’ or ‘substitution’ care); flexible working conditions; psychological therapy, training and education interventions; and support groups. In many cases it may be that a combination of interventions is most effective. These findings have implications for social care policy and practice which aims to support carers, particularly in the context of the changing landscape of global macro-level processes and recent policy, legislative and funding changes for local authority and voluntary sector providers of support and services for carers in the UK.

MEETINGDEM is a JPND project (2014–2017) focussed on the adaptive implementation and evaluation of the Meeting Centres Support Programme (MCSP) for community dwelling people with dementia and their carers. MCSP was developed in the Netherlands demonstrating benefits for people with dementia and their family carers and is now provided in 144 Dutch centres with a national help-desk and training available. MEETINGDEM took the learning from the Dutch experience to assess whether it would work in Italy, Poland and UK, and whether comparable benefits would be achieved. Researchers worked together across the three countries using the same methods and measures. Each country established at least two Meeting Centres. Implementation facilitators and barriers were inventoried. User satisfaction was ascertained utilising questionnaires and focus groups. Effectiveness of MC was compared to usual care (UC) and evaluated in a 7 months pre/post controlled trial. Cost-effectiveness was calculated based on health, social and unpaid care costs. 13 MC's were successfully implemented across all countries (Italy-8, Poland-3, UK-2). MCSP was well adopted. Users had high attendance levels and were highly satisfied. Pre/post data were contributed by 85 people with dementia and 93 carers attending MCs and 74 people/carers receiving UC. After six months MC participants showed significant positive effects on QoL (self-esteem, positive affect and feelings of belonging). No significant differences were found for depression or social inclusion although post-hoc analyses show depression decreased over time in the MC group and increased in UC. While at baseline the number and severity of neuropsychiatric symptoms was higher for the MC group, at follow-up these decreased for the MC group and increased for UC. MC carers reported significantly reduced loneliness. Overall costs in the MC group, including intervention costs, were higher than those in the UC group, showing that the benefits of MCSP are associated with additional costs. The implementation of MCSP in other countries is feasible and was highly rated by users showing significant health and wellbeing benefits compared to those receiving UC. The benefits are associated with additional costs. Further investigation is needed to assess potential longer term savings of MCSP.

Economic research on autism and implications for Scotland, including how the economic cost of autism can inform strategy and planning.

Background Dementia is a national priority and this research addresses the Prime Minister’s commitment to dementia research as demonstrated by his 2020 challenge and the new UK Dementia Research Institute. In the UK > 800,000 older people have dementia. It has a major impact on the lives of people with dementia themselves, on the lives of their family carers and on services, and costs the nation £26B per year. Pharmacological cures for dementias such as Alzheimer’s disease are not expected before 2025. If no cure can be found, the ageing demographic will result in 2 million people living with dementia by 2050. People with dementia lose much more than just their memory and their daily living skills; they can also lose their independence, their dignity and status, their confidence and morale, and their roles both within the family and beyond. They can be seen as a burden by society, by their families and even by themselves, and may feel unable to contribute to society. This programme of research aims to find useful interventions to improve the quality of life of people with dementia and their carers, and to better understand how people with dementia can be supported at home and avoid being admitted to hospital. Objectives (1) To develop and evaluate the maintenance cognitive stimulation therapy (MCST) for people with dementia; (2) to develop the Carer Supporter Programme (CSP), and to evaluate the CSP and Remembering Yesterday, Caring Today (RYCT) for people with dementia both separately and together in comparison with usual care; and (3) to develop a home treatment package (HTP) for dementia, to field test the HTP in practice and to conduct an exploratory trial. Methods (1) The MCST programme was developed for people with dementia based on evidence and qualitative work. A randomised controlled trial (RCT) [with a pilot study of MCST plus acetylcholinesterase inhibitors (AChEIs)] compared MCST with cognitive stimulation therapy (CST) only. The MCST implementation study conducted a trial of outreach compared with usual care, and assessed implementation in practice. (2) The CSP was developed based on existing evidence and the engagement of carers of people with dementia. The RCT (with internal pilot) compared the CSP and reminiscence (RYCT), both separately and in combination, with usual care. (3) A HTP for dementia, including the most promising interventions and components, was developed by systematically reviewing the literature and qualitative studies including consensus approaches. The HTP for dementia was evaluated in practice by conducting in-depth field testing. Results (1) Continuing MCST improved quality of life and improved cognition for those taking AChEIs. It was also cost-effective. The CST implementation studies indicated that many staff will run CST groups following a 1-day training course, but that outreach support helps staff go on to run maintenance groups and may also improve staff sense of competence in dementia care. The study of CST in practice found no change in cognition or quality of life at 8-month follow-up. (2) The CSP/RYCT study found no benefits for family carers but improved quality of life for people with dementia. RYCT appeared beneficial for the quality of life of people with dementia but at an excessively high cost. (3) Case management for people with dementia reduces admissions to long-term care and reduces behavioural problems. In terms of managing crises, staff suggested more costly interventions, carers liked education and support, and people with dementia wanted family support, home adaptations and technology. The easy-to-use home treatment manual was feasible in practice to help staff working in crisis teams to prevent hospital admissions for people with dementia. Limitations Given constraints on time and funding, we were unable to compete the exploratory trial of the HTP package or to conduct an economic evaluation. Future research To improve the care of people with dementia experiencing crises, a large-scale clinical trial of the home treatment manual is needed. Conclusion There is an urgent need for effective psychosocial interventions for dementia. MCST improved quality of life and was cost-effective, with benefits to cognition for those on AChEIs. MCST was feasible in practice. Both CSP and RYCT improved the quality of life of people with dementia, but the overall costs may be too high. The HTP was useful in practice but requires evaluation in a full trial. Dementia care research may improve the lives of millions of people across the world. Trial registrations Current Controlled Trials ISRCTN26286067 (MCST), ISRCTN28793457 (MCST implementation) and ISRCTN37956201 (CSP/RYCT). Funding This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research ; Vol. 5, No. 5. See the NIHR Journals Library website for further project information.

ObjectiveAlthough available evidence is modest, exercise could be beneficial in reducing behavioural and psychological symptoms of dementia. We aim to evaluate the cost‐effectiveness of a dyadic exercise regimen for individuals with dementia and their main carer as therapy for behavioural and psychological symptoms of dementia.MethodsCost‐effectiveness analysis within a two‐arm, pragmatic, randomised, controlled, single‐blind, parallel‐group trial of a dyadic exercise regimen (individually tailored, for 20–30 min at least five times per week). The study randomised 131 community‐dwelling individuals with dementia and clinically significant behavioural and psychological symptoms with a carer willing and able to participate in the exercise regimen; 52 dyads provided sufficient cost data for analyses.ResultsMean intervention cost was £284 per dyad. For the subsample of 52 dyads, the intervention group had significantly higher mean cost from a societal perspective (mean difference £2728.60, p = 0.05), but costs were not significantly different from a health and social care perspective. The exercise intervention was more cost‐effective than treatment as usual from both societal and health and social care perspectives for the measure of behavioural and psychological symptoms (Neuropsychiatric Inventory). It does not appear cost‐effective in terms of cost per quality‐adjusted life year gain.ConclusionsThe exercise intervention has the potential to be seen as cost‐effective when considering behavioural and psychological symptoms but did not appear cost‐effective when considering quality‐adjusted life year gains. Copyright © 2011 John Wiley & Sons, Ltd.