Scaling-up an evidence-based intervention for family carers of people with dementia: Current and future costs and outcomes.

OBJECTIVES: The STrAtegies for RelaTives (START) intervention is effective and cost-effective in supporting family carers of people with dementia. It is currently not available to all eligible carers in England. What would be the impacts on service costs and carer health-related quality of life if START was provided to all eligible carers in England, currently and in future? METHODS: Effectiveness and cost-effectiveness data from a previously conducted randomised controlled trial were combined with current and future projections of numbers of people with newly diagnosed dementia to estimate overall and component costs and health-related quality of life outcomes between 2015 (base year for projections) and 2040. RESULTS: Scaling-up START requires investments increasing annually but would lead to significant savings in health and social care costs. Family carers of people with dementia would experience improvements in mental health and quality of life, with clinical effects lasting at least 6 years. Scaling up the START intervention to eligible carers was estimated to cost £9.4 million in 2020, but these costs would lead to annual savings of £68 million, and total annual quality-adjusted life year (QALY) gains of 1247. Although the costs of START would increase to £19.8 million in 2040, savings would rise to £142.7 million and Quality adjusted life years gained to 1883. CONCLUSIONS: Scaling-up START for family carers of people with dementia in England would improve the lives of family carers and reduce public sector costs. Family carers play a vital part in dementia care; evidence-based interventions that help them to maintain this role, such as START, should be available across the country.

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.

Household wealth, neighbourhood deprivation and frailty amongst middle-aged and older adults in England: a longitudinal analysis over 15 years (2002-2017).

BACKGROUND: frailty is a condition of reduced function and health due to ageing processes and is associated with a higher risk of falls, hospitalisation, disability and mortality. OBJECTIVE: to determine the relationship between household wealth and neighbourhood deprivation with frailty status, independently of demographic factors, educational attainment and health behaviours. DESIGN: population-based cohort study. SETTING: communities in England. SUBJECTS: in total 17,438 adults aged 50+ from the English Longitudinal Study of Ageing. METHODS: multilevel mixed-effects ordered logistic regression was used in this study. Frailty was measured using a frailty index. We defined small geographic areas (neighbourhoods) using English Lower layer Super Output Areas. Neighbourhood deprivation was measured by the English Index of Multiple Deprivation, grouped into quintiles. Health behaviours included in this study are smoking and frequency of alcohol consumption. RESULTS: the proportion of respondents who were prefrail and frail were 33.8% [95% confidence interval (CI) 33.0-34.6%] and 11.7 (11.1-12.2)%, respectively. Participants in the lowest wealth quintile and living in the most deprived neighbourhood quintile had 1.3 (95% CI = 1.2-1.3) and 2.2 (95% CI = 2.1-2.4) times higher odds of being prefrail and frail, respectively, than the wealthiest participants living in the least deprived neighbourhoods Living in more deprived neighbourhood and poorer wealth was associated with an increased risk of becoming frail. Those inequalities did not change over time. CONCLUSIONS: in this population-based sample, living in a deprived area or having low wealth was associated with frailty in middle-aged and older adults. This relationship was independent of the effects of individual demographic characteristics and health behaviours.

Receipt of help by people with cognitive impairment: results from the English Longitudinal Study of Ageing.

OBJECTIVES: We investigated whether people with dementia or low memory/orientation reported more help misaligned with needs - more unmet need and/or more unrequired help - than other people with similar levels of functional limitation, and examined associations with quality of life. METHODS: From pooled English Longitudinal Study of Ageing data from waves 6, 7, and 8, we identified community-dwelling people aged 50+ with: dementia (n= 405); low memory/orientation but no dementia (n= 4520); and intact memory/orientation (n= 10,264). Unmet need (not receiving help for the functional limitation) and unrequired help (receipt of help without the respective functional limitation) were used as outcomes in two-part regressions. Quality of life (CASP-19) was used as a continuous outcome in a linear regression. Functional limitation and its interaction with cognitive status and socio-demographic factors were included in the models. RESULTS: Those with dementia or low memory/orientation but few functional limitations reported more unmet needs and unrequired help than their counterparts with intact memory/orientation. At high levels of limitations, the needs of those with dementia or lower memory/orientation were met more often and the receipt of unrequired help was similar compared to those with intact memory/orientation. Unmet need and unrequired help were associated with poorer quality of life. CONCLUSIONS: Unmet need and unrequired help were particular challenges for those with poorer cognition and potentially at early stages of dementia; they were associated with lower quality of life. Our results highlight the importance of good-quality timely diagnosis, identification of needs, and person-centred assessment to help improve quality of life.

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.

What are the current and projected future cost and health-related quality of life implications of scaling up cognitive stimulation therapy?

OBJECTIVES: Cognitive stimulation therapy (CST) is one of the few non-pharmacological interventions for people living with dementia shown to be effective and cost-effective. What are the current and future cost and health-related quality of life implications of scaling-up CST to eligible new cases of dementia in England? METHODS/DESIGN: Data from trials were combined with microsimulation and macrosimulation modelling to project future prevalence, needs and costs. Health and social costs, unpaid care costs and quality-adjusted life years (QALYs) were compared with and without scaling-up of CST and follow-on maintenance CST (MCST). RESULTS: Scaling-up group CST requires year-on-year increases in expenditure (mainly on staff), but these would be partially offset by reductions in health and care costs. Unpaid care costs would increase. Scaling-up MCST would also require additional expenditure, but without generating savings elsewhere. There would be improvements in general cognitive functioning and health-related quality of life, summarised in terms of QALY gains. Cost per QALY for CST alone would increase from £12,596 in 2015 to £19,573 by 2040, which is below the threshold for cost-effectiveness used by the National Institute for Health and Care Excellence (NICE). Cost per QALY for CST and MCST combined would grow from £19,883 in 2015 to £30,906 by 2040, making it less likely to be recommended by NICE on cost-effectiveness grounds. CONCLUSIONS: Scaling-up CST England for people with incident dementia can improve lives in an affordable, cost-effective manner. Adding MCST also improves health-related quality of life, but the economic evidence is less compelling.

Projections of dependency and associated social care expenditure for the older population in England to 2038: effect of varying disability progression.

OBJECTIVES: to assess the effect of recent stalling of life expectancy and various scenarios for disability progression on projections of social care expenditure between 2018 and 2038, and the likelihood of reaching the Ageing Society Grand Challenge mission of five extra healthy, independent years at birth. DESIGN: two linked projections models: the Population Ageing and Care Simulation (PACSim) model and the Care Policy and Evaluation Centre long-term care projections model, updated to include 2018-based population projections. POPULATION: PACSim: about 303,589 individuals aged 35 years and over (a 1% random sample of the England population in 2014) created from three nationally representative longitudinal ageing studies. MAIN OUTCOME MEASURES: Total social care expenditure (public and private) for older people, and men and women's independent life expectancy at age 65 (IndLE65) under five scenarios of changing disability progression and recovery with and without lower life expectancy. RESULTS: between 2018 and 2038, total care expenditure was projected to increase by 94.1%-1.25% of GDP; men's IndLE65 increasing by 14.7% (range 11.3-16.5%), exceeding the 8% equivalent of the increase in five healthy, independent years at birth, although women's IndLE65 increased by only 4.7% (range 3.2-5.8%). A 10% reduction in disability progression and increase in recovery resulted in the lowest increase in total care expenditure and increases in both men's and women's IndLE65 exceeding 8%. CONCLUSIONS: interventions that slow down disability progression, and improve recovery, could significantly reduce social care expenditure and meet government targets for increases in healthy, independent years.

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.

Investigating the relationship between social care supply and healthcare utilization by older people in England.

Since 2010, adult social care spending in England has fallen significantly in real terms whilst demand has risen. Reductions in social care supply may also have impacted demand for NHS services, particularly for those whose care is provided at the interface of the health and care systems. We analyzed a panel dataset of 150 local authorities (councils) to test potential impacts on hospital utilization by people aged 65 and over: emergency admission rates for falls and hip fractures ("front-door" measures); and extended stays of 7 days or longer; and 21 days or longer ("back-door" measures). Changes in social care supply were assessed in two ways: gross current expenditure (per capita 65 and over) adjusted by local labor costs and social care workforce (per capita 18 and over). We ran negative binomial models, controlling for deprivation, ethnicity, age, unpaid care, council class, and year effects. To account for potential endogeneity, we ran instrumental variable regressions and dynamic panel models. Sensitivity analysis explored potential effects of funding for integrated care (the Better Care Fund). There was no consistent evidence that councils with higher per capita spend or higher social care staffing rates had lower hospital admission rates or shorter hospital stays.

DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND): A protocol paper.

OBJECTIVES: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers. METHOD: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort-900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care. WS3: Relationship between use and costs of services and outcomes. WS4: Experiences of self-funders of care. WS5: Decision-making processes for people with dementia and carers. WS6: Effect of diagnostic stage and services on outcomes. WS7: Theory of Change informed strategy and actions for applying the research findings. OUTCOMES: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia.

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 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.

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.

Valuing Alzheimer's disease drugs: a health technology assessment perspective on outcomes.

OBJECTIVES: Due to the nature of Alzheimer's disease (AD), health technology assessment (HTA) agencies might face considerable challenges in choosing appropriate outcomes and outcome measures for drugs that treat the condition. This study sought to understand which outcomes informed previous HTAs, to explore possible reasons for prioritizations, and derive potential implications for future assessments of AD drugs. METHOD: We conducted a literature review of studies that analyzed decisions made in HTAs (across disease areas) in three European countries: England, Germany, and The Netherlands. We then conducted case studies of technology assessments conducted for AD drugs in these countries. RESULTS: Overall, outcomes measured using clinical scales dominated decisions or recommendations about whether to fund AD drugs, or price negotiations. HTA processes did not always allow the inclusion of outcomes relevant to people with AD, their carers, and families. Processes did not include early discussion and agreement on what would constitute appropriate outcome measures and cut-off points for effects. CONCLUSIONS: We conclude that in order to ensure that future AD drugs are valued appropriately and timely, early agreement with various stakeholders about outcomes, outcome measures, and cut-offs is important.

COVID-19: Implications for the Support of People with Social Care Needs in England.

This perspective examines the challenge posed by COVID-19 for social care services in England and describes responses to this challenge. People with social care needs experience increased risks of death and deteriorating physical and mental health with COVID-19. Social isolation introduced to reduce COVID-19 transmission may adversely affect well-being. While the need for social care rises, the ability of families and social care staff to provide support is reduced by illness and quarantine, implying reductions in staffing levels. Consequently, COVID-19 could seriously threaten care availability and quality. The government has sought volunteers to work in health and social care to help address the threat posed by staff shortages at a time of rising need, and the call has achieved an excellent response. The government has also removed some barriers to effective coordination between health and social care, while introducing measures to promote the financial viability of care providers. The pandemic presents unprecedented challenges that require well-co-coordinated responses across central and local government, health services, and non-government sectors.

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.

Is late-life dependency increasing or not? A comparison of the Cognitive Function and Ageing Studies (CFAS).

BACKGROUND: Little is known about how the proportions of dependency states have changed between generational cohorts of older people. We aimed to estimate years lived in different dependency states at age 65 years in 1991 and 2011, and new projections of future demand for care. METHODS: In this population-based study, we compared two Cognitive Function and Ageing Studies (CFAS I and CFAS II) of older people (aged ≥65 years) who were permanently registered with a general practice in three defined geographical areas (Cambridgeshire, Newcastle, and Nottingham; UK). These studies were done two decades apart (1991 and 2011). General practices provided lists of individuals to be contacted and were asked to exclude those who had died or might die over the next month. Baseline interviews were done in the community and care homes. Participants were stratified by age, and interviews occurred only after written informed consent was obtained. Information collected included basic sociodemographics, cognitive status, urinary incontinence, and self-reported ability to do activities of daily living. CFAS I was assigned as the 1991 cohort and CFAS II as the 2011 cohort, and both studies provided prevalence estimates of dependency in four states: high dependency (24-h care), medium dependency (daily care), low dependency (less than daily), and independent. Years in each dependency state were calculated by Sullivan's method. To project future demands for social care, the proportions in each dependency state (by age group and sex) were applied to the 2014 UK [corrected] population projections. FINDINGS: Between 1991 and 2011, there were significant increases in years lived from age 65 years with low dependency (1·7 years [95% CI 1·0-2·4] for men and 2·4 years [1·8-3·1] for women) and increases with high dependency (0·9 years [0·2-1·7] for men and 1·3 years [0·5-2·1] for women). The majority of men's extra years of life were spent independent (36·3%) or with low dependency (36·3%) whereas for women the majority were spent with low dependency (58·0%), and only 4·8% were independent. There were substantial reductions in the proportions with medium and high dependency who lived in care homes, although, if these dependency and care home proportions remain constant in the future, further population ageing will require an extra 71 215 care home places by 2025. INTERPRETATION: On average older men now spend 2·4 years and women 3·0 years with substantial care needs, and most will live in the community. These findings have considerable implications for families of older people who provide the majority of unpaid care, but the findings also provide valuable new information for governments and care providers planning the resources and funding required for the care of their future ageing populations. FUNDING: Medical Research Council (G9901400) and (G06010220), with support from the National Institute for Health Research Comprehensive Local research networks in West Anglia and Trent, UK, and Neurodegenerative Disease Research Network in Newcastle, UK.

Investigating the impact of primary care payments on underdiagnosis in dementia: A difference-in-differences analysis.

OBJECTIVE: In England, two primary care incentive schemes were introduced to increase dementia diagnosis rates to two-thirds of expected levels. This study assesses the effectiveness of these schemes. METHODS: We used a difference-in-differences framework to analyse the individual and collective impacts of the incentive schemes: (1) Directed Enhanced Service 18 (DES18: facilitating timely diagnosis of and support for dementia) and (2) the Dementia Identification Scheme (DIS). The dataset included 7529 English general practices, of which 7142 were active throughout the 10-year study period (April 2006 to March 2016). We controlled for a range of factors, including a contemporaneous hospital incentive scheme for dementia. Our dependent variable was the percentage of expected cases that was recorded on practice dementia registers (the "rate"). RESULTS: From March 2013 to March 2016, the mean rate rose from 51.8% to 68.6%. Both DES18 and DIS had positive and significant effects. In practices participating in the DES18 scheme, the rate increased by 1.44 percentage points more than the rate for non-participants; DIS had a larger effect, with an increase of 3.59 percentage points. These combined effects increased dementia registers nationally by an estimated 40 767 individuals. Had all practices fully participated in both schemes, the corresponding number would have been 48 685. CONCLUSION: The primary care incentive schemes appear to have been effective in closing the gap between recorded and expected prevalence of dementia, but the hospital scheme had no additional discernible effect. This study contributes additional evidence that financial incentives can motivate improved performance in primary care.

The cost of diagnosis and early support in patients with cognitive decline.

OBJECTIVE: Recent research indicates considerable heterogeneity in the provision of memory assessment services (MAS). However, little is known on the extent of variation in the costs of the services MAS provide. We investigated the costs of supporting patients with suspected dementia, including assessment and support over the following 6 months. METHODS: Clinic costs were estimated on the basis of an organisational survey reporting staff roll, grade and activities. Costs of primary health and social care were estimated from questionnaire data reported by carers of patients at baseline, 3 and 6 months after referral. RESULTS: Mean monthly staff costs at MAS were £73 000. Imaging at assessment costs an additional £3500 per month. Monthly clinic cost per new patient assessed varied from £320 to £5400 across clinics. Additional primary health and social care costs of £130-220 a month between baseline and 6 months were reported by carers. Costs of pharmacological and non-pharmacological treatments reported by carers were small. Informal care costs dwarfed health and social care costs when valued at a modest unit cost. The overall mean cost of supporting a patient for 6 months varied from £1600 to £2500 dependent on assumptions regarding the proportion of MAS intervention and review costs accrued at 6 months. CONCLUSIONS: There is considerable variation in the intensity and associated costs of services provided by MAS. Further research should ascertain to what extent such variation is associated with differences in patient outcomes. Copyright © 2016 John Wiley & Sons, Ltd.

MODEM: A comprehensive approach to modelling outcome and costs impacts of interventions for dementia. Protocol paper.

BACKGROUND: The MODEM project (A comprehensive approach to MODelling outcome and costs impacts of interventions for DEMentia) explores how changes in arrangements for the future treatment and care of people living with dementia, and support for family and other unpaid carers, could result in better outcomes and more efficient use of resources. METHODS: MODEM starts with a systematic mapping of the literature on effective and (potentially) cost-effective interventions in dementia care. Those findings, as well as data from a cohort, will then be used to model the quality of life and cost impacts of making these evidence-based interventions more widely available in England over the period from now to 2040. Modelling will use a suite of models, combining microsimulation and macrosimulation methods, modelling the costs and outcomes of care, both for an individual over the life-course from the point of dementia diagnosis, and for individuals and England as a whole in a particular year. Project outputs will include an online Dementia Evidence Toolkit, making evidence summaries and a literature database available free to anyone, papers in academic journals and other written outputs, and a MODEM Legacy Model, which will enable local commissioners of services to apply the model to their own populations. DISCUSSION: Modelling the effects of evidence-based cost-effective interventions and making this information widely available has the potential to improve the health and quality of life both of people with dementia and their carers, while ensuring that resources are used efficiently.