Unpaid carers of people with dementia and information communication technology: Use, impact and ideas for the future.

OBJECTIVES: Several 100,000s of people living with dementia in the UK are cared for at home by a spouse or relative. Few studies have considered the ICT needs and experiences of unpaid carers. This study explores the types of ICT unpaid carers use, the ways they use ICT, the impact of ICT-use, and their ideas for how ICT could be more supportive of their role as a carer. METHODS: Six focus groups with 32 unpaid carers of people living with dementia discussed their experiences of - and barriers to - using ICT. Transcripts were analysed thematically according to three types of ICT (mainstream, accessible and formal) and five functions (supporting domestic tasks, care management, monitoring, communication and information and education). RESULTS: Participants predominantly used mainstream ICT devices such as laptops and smartphones and internet-enabled applications including videoconferencing and social media platforms to support their daily activities and assist them in their caring role. A few participants discussed using accessible devices such as memory clocks and formal telecare and care-phone services for care management and monitoring functions. Participants' ideas for improvements centred on personalised communication applications that facilitate remote interactions and promote persons living with dementia's independence. Others expressed concerns about the growing need to use ICT to access formal care services and the inadequacy of the ICT infrastructure in some care homes. CONCLUSIONS: Unpaid carers mostly turn to readily available mainstream ICT to support their personal and care activities. Further research is required to understand the social impact of the increasing reliance of ICT across health, social and residential care service sectors. Improved cooperation between unpaid carers, technology developers and care services providers could align ICT development to the needs and experiences of families living with dementia and assist unpaid carers with identifying ICTs that optimally support their personal circumstances.

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

INTRODUCTION: Few studies have longitudinally mapped quality of life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during coronavirus disease-2019 (COVID-19). METHODS: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and 2 years later. Latent growth curve modelling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). RESULTS: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. 'Confidence in future' and 'Feeling supported' were the only carer QoL subscales to show some recovery post-pandemic. DISCUSSION: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

The relationships between informal and formal social care for older people in England: A comparison before and after the Care Act 2014.

Social care is an integral part of the UK welfare system and plays an imperative role in promoting the well-being of older people. This study investigates the impacts of receiving informal social care on formal social care use among community-dwelling older people in England before and after the implementation of the Care Act 2014. Data came from the Health Survey for England for the years 2011 to 2018 (N = 17,292). Bivariate probit models were used to address the endogeneity issue. The analysis shows that receipt of informal care substitutes for formal care. Informal care had a strong substitution effect on formal personal care before 2015, which was significantly weakened after 2015. While the receipt of formal personal care has been increasingly "carer-blind," that of formal domestic care depends on the availability of informal carers and personal affordability, which may result in unmet care needs.

Effects of mental health status during adolescence on primary care costs in adulthood across three British cohorts.

PURPOSE: This study examines the association between mental health problems in adolescence and general practice (GP) costs during adulthood up to age 50 in the UK. METHODS: We conducted secondary analyses of three British birth cohorts (individuals born in single weeks in 1946, 1958 and 1970). Data for the three cohorts were analysed separately. All respondents who participated in the cohort studies were included. Adolescent mental health status was assessed in each cohort using the Rutter scale (or, for one cohort, a forerunner of that scale) completed in interviews with parents and teachers when cohort members were aged around 16. Presence and severity of conduct and emotional problems were modelled as independent variables in two-part regression models in which the dependent variable was costs of GP services from data collection sweeps up to mid-adulthood. All analyses were adjusted for covariates (cognitive ability, mother's education, housing tenure, father's social class and childhood physical disability). RESULTS: Adolescent conduct and emotional problems, particularly when coexisting, were associated with relatively high GP costs in adulthood up to age 50. Associations were generally stronger in females than males. CONCLUSION: Associations between adolescent mental health problems and annual GP cost were evident decades later, to age 50, suggesting that there could be significant future savings to healthcare budgets if rates of adolescent conduct and emotional problems could be reduced. TRIAL REGISTRATION: Not applicable.

Influence of stigma, sociodemographic and clinical characteristics on mental health-related service use and associated costs among young people in the United Kingdom.

This study examined the influence of stigma, psychopathology, and sociodemographic characteristics on mental health-related service use and costs related to service use in a cohort of young people in the UK. Using data from a community sample of young people aged 9-17 years and their caregivers, we assessed 407 young people's use of services due to mental health problems, young people's psychopathology, demographic characteristics, maternal education and caregivers' stigma-related beliefs. Unit costs related to services were gathered from national annual compendia and other widely used sources. We assessed predictors of service use through logistic regression analysis and developed generalised linear models to identify factors associated with costs of mental health-related service utilisation. Persistent psychopathology, socioeconomic disadvantage, and low caregiver intended stigma-related behaviour were associated with increased likelihood of service use among young people. Older age and socioeconomic disadvantage were associated with increased costs. Different factors influenced contact with services and the cost associated with their use - persistent psychopathology and socioeconomic disadvantage increased, and caregivers' intended stigma-related behaviour decreased the likelihood of using services, whereas socioeconomic disadvantage and older age were associated with increased costs. Social determinants of mental health problems play an important role in the use and costs of different types of mental health-related services for young people. Discordance between drivers of service use and costs implies that young people who are more likely to access services due to mental health problems do not necessarily receive care at the intensity they need.

A systematic review of evidence-based interventions for child and adolescent mental health problems in low- and middle-income countries.

BACKGROUND: Treatments for mental health problems in childhood and adolescence have advanced in the last 15 years. Despite advances in research, most of the evidence on effective interventions comes from high-income countries, while evidence is scarce in low- and middle-income countries (LMICs), where 90% of world's children and adolescents live. The aim of this review was to identify evidence-based interventions tested in LMICs to treat or prevent child and adolescent mental health problems. METHODS: We conducted a systematic review of seven major electronic databases, from January 2007 to July 2019. We included randomised or non-randomised clinical trials that evaluated interventions for children or adolescents aged 6 to 18 years living in LMICs and who had, or were at risk of developing, one or more mental health problems. Results were grouped according to the studied conditions. Due to the heterogeneity of conditions, interventions and outcomes, we performed a narrative synthesis. The review was registered at PROSPERO under the number CRD42019129376. FINDINGS: Of 127,466 references found through our search strategy, 107 studies were included in narrative synthesis after the eligibility verification processes. Nineteen different conditions and nine types of interventions were addressed by studies included in the review. Over 1/3 of studied interventions were superior to comparators, with psychoeducation and psychotherapy having the highest proportion of positive results. One-third of studies were classified as presenting low risk of bias. INTERPRETATION: This review shows that different interventions have been effective in LMICs and have the potential to close the mental health care gap among children and adolescents in low-resource settings.

Utilisation and costs of mental health-related service use among adolescents.

BACKGROUND: The high level of care needs for adolescents with mental health conditions represents a challenge to the public sector, especially in low and middle-income countries. We estimated the costs to the public purse of health, education, criminal justice and social care service use associated with psychiatric conditions among adolescents in Brazil; and examined whether the trajectory of psychopathology and its impact on daily life, and parental stigma towards mental illness, was associated with service utilisation and costs. METHODS: Data on reported service use among adolescents from a prospective community cohort (n = 1,400) were combined with Brazilian unit costs. Logistic regression and generalised linear models were used to examine factors associated with service use and associated costs, respectively. RESULTS: Twenty-two percent of those who presented with a psychiatric disorder used some type of service for their mental health in the previous twelve months. Higher odds of service use were associated with having a diagnosed mental disorder (either incident, [OR = 2.49, 95%CI = 1.44-4.30, p = 0.001], remittent [OR = 2.16, 95%CI = 1.27-3.69, p = 0.005] or persistent [OR = 3.01, 95%CI = 1.69-5.36, p<0.001]), higher impact of symptoms on adolescent's life (OR = 1.32, 95%CI = 1.19-1.47, p<0.001) and lower parental stigma toward mental illness (OR = 1.12, 95%CI = 1.05-1.20, p = 0.001). Average annual cost of service use was 527.14 USD (s.d. = 908.10). Higher cost was associated with higher disorder impact (ß = 0.25, 95%CI = 0.12-0.39, p<0.001), lower parental stigma (ß = 0.12, 95%CI = 0.02-0.23, p = 0.020) and white ethnicity (ß = 0.55, 95%CI = 0.04-1.07, p = 0.036). CONCLUSION: The impact of mental health problems on adolescents' daily lives and parental stigmatising attitudes toward mental illness were the main predictors of both service use and costs.

Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study.

BACKGROUND: Research to date offers mixed evidence about the relationship between quality of life and severity of cognitive impairment in people with dementia. We aimed to investigate longitudinal changes in patient- and proxy-rated health-related quality of life (HRQL) by severity of dementia and explore factors associated with changes in HRQL over a one-year period. We used data from the MODEM longitudinal cohort study which recruited dyads of persons with clinically diagnosed dementia and their principal carer and interviewed them face-to-face at baseline and again 1 year later. METHODS: Quota sampling was used to generate balanced numbers (target n = 100 for each severity level) of people with mild cognitive impairment (20+ on the standardised Mini-Mental State Examination (sMMSE)), moderate cognitive impairment (score 10 to 19), and severe cognitive impairment (score 0 to 9). Persons with dementia without an identifiable family carer or other informant (e.g., a formal/professional/paid carer) were excluded from the study. Participants answered a series of questions measuring their HRQL: DEMQOL, DEMQOL-proxy, EQ-5D-3 L, EQ-5D-3L proxy. Multiple regression models were built to understand the effects of baseline demographics and dementia symptoms (cognitive impairment, neuropsychiatric symptoms) on change in HRQL over 1 year. RESULTS: Two hundred and forty-three dyads of people with clinically diagnosed dementia and carers completed baseline and follow-up interviews. Most measures of HRQL remaining relatively stable between time-points, but one index of HRQL, EQ-5D proxy, significantly declined. Depending on the HRQL measure, different factors were associated with change in HRQL. The only factor consistently associated with decline in HRQL (when compared to improvement) was having a diagnosis of a non-Alzheimer's dementia. CONCLUSIONS: Deterioration in HRQL is not an inevitable part of the dementia journey. However, people with non-Alzheimer's dementias may be more susceptible to HRQL decline. This may indicate that those with non-Alzheimer's dementia may benefit from specific support focussed on maintaining their quality of life.

The impact of child psychiatric conditions on future educational outcomes among a community cohort in Brazil.

AIMS: Mental health problems early in life can negatively impact educational attainment, which in turn have negative long-term effects on health, social and economic opportunities. Our aims were to: (i) estimate the impacts of different types of psychiatric conditions on educational outcomes and (ii) to estimate the proportion of adverse educational outcomes which can be attributed to psychiatric conditions. METHODS: Participants (N = 2511) were from a school-based community cohort of Brazilian children and adolescents aged 6-14 years enriched for high family risk of psychiatric conditions. We examined the impact of fear- (panic, separation and social anxiety disorder, specific phobia, agoraphobia and anxiety conditions not otherwise specified), distress- (generalised anxiety disorder, major depressive disorder and depressive disorder not otherwise specified, bipolar, obsessive-compulsive, tic, eating and post-traumatic stress disorder) and externalising-related conditions (attention deficit and hyperactivity disorder, conduct and oppositional-defiant conditions) on grade repetition, dropout, age-grade distortion, literacy performance and bullying perpetration, 3 years later. Psychiatric conditions were ascertained by psychiatrists, using the Development and Well-Being Behaviour Assessment. Propensity score and inverse probability weighting were used to adjust for potential confounders, including comorbidity, and sample attrition. We calculated the population attributable risk percentages to estimate the proportion of adverse educational outcomes in the population which could be attributed to psychiatric conditions. Analyses were conducted separately for males and females. RESULTS: Fear and distress conditions in males were associated with school dropout (odds ratio (OR) = 2.76; 95% confidence interval (CI) = 1.06, 7.22; p < 0.05) and grade repetition (OR = 2.76; 95% CI = 1.32, 5.78; p < 0.01), respectively. Externalising conditions were associated with grade repetition in males (OR = 1.66; 95% CI = 1.05, 2.64; p < 0.05) and females (OR = 2.03; 95% CI = 1.15, 3.58; p < 0.05), as well as age-grade distortion in males (OR = 1.66; 95% CI = 1.05, 2.62; p < 0.05) and females (OR = 2.88; 95% CI = 1.61, 5.14; p < 0.001). Externalising conditions were also associated with lower literacy levels (ß = -0.23; 95% CI = -0.34, -0.12; p < 0.001) and bullying perpetration (OR = 3.12; 95% CI = 1.50, 6.51; p < 0.001) in females. If all externalising conditions were prevented or treated, we estimate that 5.0 and 4.8% of grade repetition would not have occurred in females and males, respectively, as well as 10.2 (females) and 5.3% (males) of age-grade distortion cases and 11.4% of female bullying perpetration. CONCLUSIONS: The study provides evidence of the negative impact of psychiatric conditions on educational outcomes in a large Brazilian cohort. Externalising conditions had the broadest and most robust negative impacts on education and these were particularly harmful to females which are likely to limit future socio-economic opportunities.

The high cost of unpaid care by young people:health and economic impacts of providing unpaid care.

BACKGROUND: Many countries worldwide have experienced reductions in provision of formal long-term care services amidst rising need for care. Provision of unpaid care, meanwhile, has grown. This includes care provided by young people. Care responsibilities can affect a young people's health, education and employment. We aimed to investigate the impacts on the employment and health of young people aged 16 to 25 of providing care, and the associated individual and public expenditure costs. METHODS: We examined employment, earnings and health impacts for individuals, and a range of economic impacts for society, focusing on young people aged 16 to 25 providing unpaid care in England. We applied regression analysis to data from three waves of the UK Household Longitudinal Study (2013/2015, 2014/2016, and 2015/2017) to compare employment and health outcomes among carers and non-carers, and two-part Generalised Linear Models to estimate costs. To address potential selection bias, we then used propensity score matching methods to explore outcomes for a matched sub-sample of young adult carers who started providing care at baseline (2014/16). RESULTS: Young people aged 16 to 25 who provided care at baseline (2014/16) were less likely to be in employment, had lower earnings from paid employment, and had poorer mental and physical health at follow-up (2015/17) compared to young people of the same age who were not providing care at baseline.. There were substantial costs to the state of young adults providing care from lower tax revenue, welfare benefit payments, and health service use. In aggregate, these costs amounted to £1048 million annually in 2017. CONCLUSIONS: High individual impacts and costs to the state of providing unpaid care, and the potential of such impacts to compound existing inequalities, have many implications for policy and practice in the health, social care, employment and welfare benefits sectors. In particular, the findings reinforce the case for reducing the need for young people to provide unpaid care, for example through better provision of formal care services, and to provide ongoing support for those young people who do provide care. As impacts are seen in a number of domains, support needs to be multidimensional.

Disease severity accounts for minimal variance of quality of life in people with dementia and their carers: analyses of cross-sectional data from the MODEM study.

BACKGROUND: Due to the progressive nature of dementia, it is important to understand links between disease severity and health-related outcomes. The aim of this study is to explore the relationship between disease severity and the quality of life (QoL) of people with dementia and their family carers using a number of disease-specific and generic measures. METHODS: In the MODEM cohort study, three-hundred and seven people with clinically diagnosed dementia and their carers were recruited on a quota basis to provide equal numbers of people with mild (standardised Mini-Mental State Examination (sMMSE), n = 110), moderate (sMMSE 10-19, n = 100), and severe (sMMSE 0-9, n = 97) cognitive impairment. A series of multiple regression models were created to understand the associations between dementia severity and the QoL of people with dementia and the QoL of their carers. QoL was measured using self- (DEMQOL, EQ-5D, CASP-19) and proxy-reports (DEMQOL-Proxy, EQ-5D) of disease-specific and generic QoL of the person with dementia. Carer generic QoL was measured by self-report (EQ-5D, SF-12). RESULTS: Disease severity, as measured by the sMMSE, was not significantly associated with the QoL of the person with dementia or the carer (p > 0.05), even after controlling for potential confounding variables for self-reported instruments. Proxy measures (rated by the carer) differed systematically in that there were small, but statistically significant proportions of the variance of QoL was explained by severity of cognitive impairment in multiple adjusted models. We also found little in the way of statistically significant relationships between the QoL of people with dementia and that of their carers except between DEMQOL-Proxy scores and the carer EQ-5D scores and carer SF-12 mental sub-scores. CONCLUSIONS: The data generated supports the somewhat counterintuitive argument that severity of cognitive impairment (and therefore severity of dementia) is not associated with lower QoL for the person with dementia when self-report measures are used. However, in absolute terms, as judged by the variance in the multivariate models, it is clear that the contribution of dementia severity to the QoL of people with dementia is minimal whatever the measurement used, be it self- or proxy-rated, or disease-specific or generic.

Effective/cost effective interventions of child mental health problems in low- and middle-income countries (LAMIC): Systematic review.

BACKGROUND: This systematic review protocol aims to examine the evidence of effectiveness and cost-effectiveness of interventions for children and adolescents with, or at risk of developing mental disorders in low- and middle-income countries (LAMICs). METHODS: We will search Medline Ovid, EMBASE Ovid, PsycINFO Ovid, CINAHL, LILACS, BDENF and IBECS. We will include randomised and non-randomised controlled trials, economic modelling studies and economic evaluations. Participants are 6 to 18 year-old children and adolescents who live in a LAMIC and who present with, or are at high risk of developing, one or more of the conditions: depression, anxiety, behavioural disorders, eating disorders, psychosis, substance abuse, autism and intellectual disabilities as defined by the DSM-V. Interventions which address suicide, self-harm will also be included, if identified during the extraction process. We will include in person or e-health interventions which have some evidence of effectiveness (in relation to clinical and/or functional outcomes) and which have been delivered to young people in LAMICs. We will consider a wide range of delivery channels (e.g., in person, web-based or virtual, phone), different practitioners (healthcare practitioners, teachers, lay health care providers) and sectors (i.e., primary, secondary and tertiary health care, education, guardianship councils). In the pilot of screening procedures, 5% of all references will be screened by two reviewers. Divergences will be resolved by one expert in mental health research. Reviewers will be retrained afterwards to ensure reliability. The remaining 95% will be screened by one reviewer. Covidence web-based tool will be used to perform screening of references and full text paper, and data extraction. RESULTS: The protocol of this systematic review will be disseminated in a peer-reviewed journal and presented at relevant conferences. The results will be presented descriptively and, if possible, meta-analysis will be conducted. Ethical approval is not needed for anonymised secondary data. CONCLUSION: the systematic review could help health specialists and other professionals to identify evidence-based strategies to deal with child and adolescents with mental health conditions.

The future incidence, prevalence and costs of stroke in the UK.

BACKGROUND: we project incidence and prevalence of stroke in the UK and associated costs to society to 2035. We include future costs of health care, social care, unpaid care and lost productivity, drawing on recent estimates that there are almost 1 million people living with stroke and the current cost of their care is £26 billion. METHODS: we developed a model to produce projections, building on earlier work to estimate the costs of stroke care by age, gender and other characteristics. Our cell-based simulation model uses the 2014-based Office for National Statistics population projections; future trends in incidence and prevalence rates of stroke derived from an expert consultation exercise; and data from the Office for Budget Responsibility on expected future changes in productivity and average earnings. RESULTS: between 2015 and 2035, the number of strokes in the UK per year is projected to increase by 60% and the number of stroke survivors is projected to more than double. Under current patterns of care, the societal cost is projected to almost treble in constant prices over the period. The greatest increase is projected to be in social care costs-both public and private-which we anticipate will rise by as much as 250% between 2015 and 2035. CONCLUSION: the costs of stroke care in the UK are expected to rise rapidly over the next two decades unless measures to prevent strokes and to reduce the disabling effects of strokes can be successfully developed and implemented.

Clinical effectiveness of the START (STrAtegies for RelaTives) psychological intervention for family carers and the effects on the cost of care for people with dementia: 6-year follow-up of a randomised controlled trial.

BACKGROUND: The START (STrAtegies for RelaTives) intervention reduced depressive and anxiety symptoms of family carers of relatives with dementia at home over 2 years and was cost-effective. AIMS: To assess the clinical effectiveness over 6 years and the impact on costs and care home admission. METHOD: We conducted a randomised, parallel group, superiority trial recruiting from 4 November 2009 to 8 June 2011 with 6-year follow-up (trial registration: ISCTRN 70017938). A total of 260 self-identified family carers of people with dementia were randomised 2:1 to START, an eight-session manual-based coping intervention delivered by supervised psychology graduates, or to treatment as usual (TAU). The primary outcome was affective symptoms (Hospital Anxiety and Depression Scale, total score (HADS-T)). Secondary outcomes included patient and carer service costs and care home admission. RESULTS: In total, 222 (85.4%) of 173 carers randomised to START and 87 to TAU were included in the 6-year clinical efficacy analysis. Over 72 months, compared with TAU, the intervention group had improved scores on HADS-T (adjusted mean difference -2.00 points, 95% CI -3.38 to -0.63). Patient-related costs (START versus TAU, respectively: median £5759 v. £16 964 in the final year; P = 0.07) and carer-related costs (median £377 v. £274 in the final year) were not significantly different between groups nor were group differences in time until care home (intensity ratio START:TAU was 0.88, 95% CI 0.58-1.35). CONCLUSIONS: START is clinically effective and this effect lasts for 6 years without increasing costs. This is the first intervention with such a long-term clinical and possible economic benefit and has potential to make a difference to individual carers. DECLARATIONS OF INTEREST: G.L., Z.W. and C.C. are supported by the UCLH National Institute for Health Research (NIHR) Biomedical Research Centre. G.L. and P.R. were in part supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart's Health NHS Trust. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Z.W. reports during the conduct of the study; personal fees from GE Healthcare, grants from GE Healthcare, grants from Lundbeck, other from GE Healthcare, outside the submitted work.

Projections of care for older people with dementia in England: 2015 to 2040.

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.

Estimated societal costs of stroke in the UK based on a discrete event simulation.

BACKGROUND: there are around 100,000 new stroke cases and over a million people living with its consequences annually in the UK. This has large impacts on health and social care, unpaid carers and lost productivity. We aimed to estimate associated costs. METHODS: we estimated 2014/2015 annual mean cost per person and aggregate UK cost of stroke for individuals aged ≥40 from a societal perspective. Health and social care costs in the first and subsequent years after stroke were estimated from discrete event simulation modelling, with probability of progression and length of receipt of different health and social care services obtained from routine registry and audit data. Unpaid care hours and lost productivity were obtained from trial data. UK unit costs were applied to estimate mean costs. Epidemiological estimates of stroke incidence and prevalence were then applied to estimate aggregate costs for the UK. RESULTS: mean cost of new-onset stroke is £45,409 (95% CI 42,054-48,763) in the first year after stroke and £24,778 (20,234-29,322) in subsequent years. Aggregate societal cost of stroke is £26 billion per year, including £8.6 billion for NHS and social care. The largest component of total cost was unpaid care (61%) and, given high survival, £20.6 billion related to ongoing care. CONCLUSION: the estimated aggregate cost of stroke substantially exceeds previous UK estimates. Since most of the cost is attributed to unpaid care, interventions aimed at rehabilitation and reducing new and recurrent stroke are likely to yield substantial benefits to carers and cost savings to society.

The costs of dementia in England.

OBJECTIVES: This study measures the average per person and annual total costs of dementia in England in 2015. METHODS/DESIGN: Up-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. RESULTS: There 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. CONCLUSIONS: Dementia 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.

Advance care planning in England: Is there an association with place of death? Secondary analysis of data from the National Survey of Bereaved People.

OBJECTIVES: To explore whether advance care planning is associated with place of death in England, as well as with sufficiency of support to care for a dying person at home, overall quality of care and pain management. METHODS: We undertook secondary analysis of data from the National Survey of Bereaved People, 2013, based on a stratified random sample of 49 607 people selected from 150 111 eligible registered deaths (n=22 661, 46% response rate). The indicator of advance care planning used was having expressed a preference for place of death and this being recorded by healthcare staff. Analysis was conducted using logistic regression models. RESULTS: Decedents with a recorded preference for place of death had significantly greater odds of dying at home rather than in hospital (OR 6.25; 99% CI 5.56 to 7.14) and in a care home rather than in hospital (OR 2.70; 99% CI 2.33 to 3.13). They also had significantly greater odds of receiving sufficient support to be cared for and to die at home, of receiving 'outstanding' or 'excellent' care, and of having pain relieved 'completely, all the time' while being cared for at home. CONCLUSIONS: Advance care planning was found to be strongly associated with lower rates of hospital death and a range of quality outcomes. These findings provide support for the emphasis on advance care planning in end of life care policy in England, while also suggesting the need for further research to better understand the mechanisms underlying these relationships.

Financial disincentives? A three-armed randomised controlled trial of the effect of financial Incentives in Diabetic Eye Assessment by Screening (IDEAS) trial.

OBJECTIVE: Conflicting evidence exists regarding the impact of financial incentives on encouraging attendance at medical screening appointments. The primary aim was to determine whether financial incentives increase attendance at diabetic eye screening in persistent non-attenders. METHODS AND ANALYSIS: A three-armed randomised controlled trial was conducted in London in 2015. 1051 participants aged over 16 years, who had not attended eye screening appointments for 2 years or more, were randomised (1.4:1:1 randomisation ratio) to receive the usual invitation letter (control), an offer of £10 cash for attending screening (fixed incentive) or a 1 in 100 chance of winning £1000 (lottery incentive) if they attend. The primary outcome was the proportion of invitees attending screening, and a comparative analysis was performed to assess group differences. Pairwise comparisons of attendance rates were performed, using a conservative Bonferroni correction for independent comparisons. RESULTS: 34/435 (7.8%) of control, 17/312 (5.5%) of fixed incentive and 10/304 (3.3%) of lottery incentive groups attended. Participants who received any incentive were significantly less likely to attend their appointment compared with controls (risk ratio (RR)=0.56; 95% CI 0.34 to 0.92). Those in the probabilistic incentive group (RR=0.42; 95% CI 0.18 to 0.98), but not the fixed incentive group (RR=1.66; 95% CI 0.65 to 4.21), were significantly less likely to attend than those in the control group. CONCLUSION: Financial incentives, particularly lottery-based incentives, attract fewer patients to diabetic eye screening than standard invites in this population. Financial incentives should not be used to promote screening unless tested in context, as they may negatively affect attendance rates.

Long term economic impact associated with childhood bullying victimisation.

Being bullied is associated with mental health problems in childhood, with increasing evidence of persisting negative impacts, and increased mental health service use, into adulthood. There are also impacts of bullying victimisation on employment, income and being in poverty, but little is known about the long-term economic impacts. We therefore aimed to estimate the most important economic consequences at age 50 of being bullied in childhood: to our knowledge this is the first study that does so. Using 1958 British birth cohort data collected in 1965, 1969, 1991, 2003 and 2008 (study samples size 7323-9242), we find substantial and durable individual and societal economic impacts four decades after the childhood bullying occurred. Both men and women who were bullied in childhood were less likely to be in employment and had accumulated less wealth in the form of home-ownership or savings than participants who were not bullied. Individual earnings from paid employment were lower for women who were bullied in childhood. Frequent bullying in childhood was also associated with higher societal employment-related costs for men and higher health service costs for women. Our findings underline the importance of preventing bullying in childhood and, as the consequences are so long-lasting and pervasive, supporting people still experiencing the negative consequences in the decades that follow.