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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Cost-effectiveness of donepezil and memantine in moderate to severe Alzheimer's disease (the DOMINO-AD trial).

OBJECTIVE: Most investigations of pharmacotherapy for treating Alzheimer's disease focus on patients with mild-to-moderate symptoms, with little evidence to guide clinical decisions when symptoms become severe. We examined whether continuing donepezil, or commencing memantine, is cost-effective for community-dwelling, moderate-to-severe Alzheimer's disease patients. METHODS: Cost-effectiveness analysis was based on a 52-week, multicentre, double-blind, placebo-controlled, factorial clinical trial. A total of 295 community-dwelling patients with moderate/severe Alzheimer's disease, already treated with donepezil, were randomised to: (i) continue donepezil; (ii) discontinue donepezil; (iii) discontinue donepezil and start memantine; or (iv) continue donepezil and start memantine. RESULTS: Continuing donepezil for 52 weeks was more cost-effective than discontinuation, considering cognition, activities of daily living and health-related quality of life. Starting memantine was more cost-effective than donepezil discontinuation. Donepezil-memantine combined is not more cost-effective than donepezil alone. CONCLUSIONS: Robust evidence is now available to inform clinical decisions and commissioning strategies so as to improve patients' lives whilst making efficient use of available resources. Clinical guidelines for treating moderate/severe Alzheimer's disease, such as those issued by NICE in England and Wales, should be revisited. © 2016 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.

Incentives in Diabetic Eye Assessment by Screening (IDEAS): study protocol of a three-arm randomized controlled trial using financial incentives to increase screening uptake in London.

BACKGROUND: Diabetes is an increasing public health problem in the UK and globally. Diabetic retinopathy is a microvascular complication of diabetes, and is one of the leading causes of blindness in the UK working age population. The diabetic eye screening programme in England aims to invite all people with diabetes aged 12 or over for retinal photography to screen for the presence of diabetic retinopathy. However, attendance rates are only 81 %, leaving many people at risk of preventable sight loss. METHODS: This is a three arm randomized controlled trial to investigate the impact of different types of financial incentives (based on principles from behavioral economics) on increasing attendance at diabetic eye screening appointments in London. Eligible participants will be aged 16 or over, and are those who have been invited to screening appointments annually, but who have not attended, or telephoned to rearrange an appointment, within the last 24 months. Eligible participants will be randomized to one of three conditions: 1. Control condition (usual invitation letter) 2. Fixed incentive condition (usual invitation letter, including a voucher for £10 if they attend their appointment) 3. Probabilistic incentive condition (invitation letter, including a voucher for a 1 in 100 chance of winning £1000 if they attend their appointment). Participants will be sent invitation letters, and the primary outcome will be whether or not they attend their appointment. One thousand participants will be included in total, randomized with a ratio of 1.4:1:1. In order to test whether the incentive scheme has a differential impact on patients from different demographic or socio-economic groups, information will be recorded on age, gender, distance from screening center, socio-economic status and length of time since they were last screened. A cost-effectiveness analysis will also be performed. DISCUSSION: This study will be the first trial of financial incentives for improving uptake of diabetic eye screening. If effective, the intervention may suggest a cost-effective way to increase screening rates, thus reducing unnecessary blindness. TRIAL REGISTRATION: ISRCTN14896403, 25 February 2016.

The relationship between changes in quality of life outcomes and progression of Alzheimer's disease: results from the dependence in AD in England 2 longitudinal study.

OBJECTIVE: The relationship between conventional indicators of Alzheimer's disease (AD) progression and quality of life (QoL) outcomes is unclear. Dependence on others has been recommended as a unifying construct in defining AD severity. This study examined the relationship between indicators of disease severity (including dependence) and changes in QoL and utility over 18 months. METHODS: A multi-centre, cohort study was conducted across 18 UK sites. One hundred and forty-five patients with possible/probable AD and their caregivers completed assessments of disease severity (Dependence Scale, Mini-mental state examination, Neuropsychiatric Inventory, Disability Assessment for Dementia), dementia-specific QoL (DEMQOL, DEMQOL-Proxy) and generic health-related utility (EQ-5D) at both time points. RESULTS: There was evidence of individual change in QoL over 18 months, with over 50% of patients reporting either maintenance or improvement of life quality. The EQ-5D proxy suggested a mean decline in QoL, whereas the DEMQOL-Proxy indicated overall improvement. In the subsample of people who self-reported QoL and utility, no mean change was evident. Changes in dependence did not explain changes on any QoL or utility outcome. There was a weak association between the EQ-5D proxy and changes in cognition, whereas changes on the DEMQOL-Proxy were partly explained by changes in behavioural disturbance. CONCLUSIONS: The natural progression of AD over 18 months does not lead to inevitable decline in QoL or utility. There are no clear or consistent direct relationships between changes in disease severity and QoL outcomes. The impact of increasing dependence and worsening disease severity is likely buffered by a combination of psychological, social and environmental factors.

Dependence in Alzheimer's disease and service use costs, quality of life, and caregiver burden: the DADE study.

BACKGROUND: Most models determining how patient and caregiver characteristics and costs change with Alzheimer's disease (AD) progression focus on one aspect, for example, cognition. AD is inadequately defined by a single domain; tracking progression by focusing on a single aspect may mean other important aspects are insufficiently addressed. Dependence has been proposed as a better marker for following disease progression. METHODS: This was a cross-sectional observational study (18 UK sites). Two hundred forty-nine community or institutionalized patients, with possible/probable AD, Mini-Mental State Examination (3-26), and a knowledgeable informant participated. RESULTS: Significant associations noted between dependence (Dependence Scale [DS]) and clinical measures of severity (cognition, function, and behavior). Bivariate and multivariate models demonstrated significant associations between DS and service use cost, patient quality of life, and caregiver perceived burden. CONCLUSION: The construct of dependence may help to translate the combined impact of changes in cognition, function, and behavior into a more readily interpretable form. The DS is useful for assessing patients with AD in clinical trials/research.

Exploring resource use and associated costs in end-of-life care for older people with dementia in residential care homes.

OBJECTIVE: The goals of this study are to describe end-of-life care costs of older people with dementia (OPWD) residents in care homes (CHs) with no on-site nursing and evaluate the economic case for an intervention designed to improve end-of-life care for OPWD in CHs. METHODS: Phase 1 tracked for a year, from March 2009, health services received by 133 OPWD in six residential CHs in the East of England. CH and resident characteristics were obtained through standardised assessment tools, interviews with CH managers and publicly available information from the independent regulator of social care services in England. Phase 2 used a modified Appreciative Inquiry intervention that ran for 6 months from January 2011, in three of the six CHs. Wilcoxon matched-pairs sign-rank tests were conducted to compare total cost and cost components during Phases 1 and 2 for those residents who had participated in both. RESULTS: Costs for each resident in Phase 1 were about £2800 per month, including service, accommodation and medication. Resource use was associated with resident characteristics. The intervention was perceived as having a positive impact on working relationships between CHs and visiting health care practitioners. Following the intervention total service costs fell by 43%. Hospital care costs fell by 88%. CONCLUSIONS: Results presented here represent early work in an under-researched area of care. Appreciative Inquiry appears to improve and change working relationships with promising outcomes, but more research is needed to test these findings further with larger samples and more robust controls.

Emergency ambulance service involvement with residential care homes in the support of older people with dementia: an observational study.

BACKGROUND: Older people resident in care homes have a limited life expectancy and approximately two-thirds have limited mental capacity. Despite initiatives to reduce unplanned hospital admissions for this population, little is known about the involvement of emergency services in supporting residents in these settings. METHODS: This paper reports on a longitudinal study that tracked the involvement of emergency ambulance personnel in the support of older people with dementia, resident in care homes with no on-site nursing providing personal care only. 133 residents with dementia across 6 care homes in the East of England were tracked for a year. The paper examines the frequency and reasons for emergency ambulance call-outs, outcomes and factors associated with emergency ambulance service use. RESULTS: 56% of residents used ambulance services. Less than half (43%) of all call-outs resulted in an unscheduled admission to hospital. In addition to trauma following a following a fall in the home, results suggest that at least a reasonable proportion of ambulance contacts are for ambulatory care sensitive conditions. An emergency ambulance is not likely to be called for older rather than younger residents or for women more than men. Length of residence does not influence use of emergency ambulance services among older people with dementia. Contact with primary care services and admission route into the care home were both significantly associated with emergency ambulance service use. The odds of using emergency ambulance services for residents admitted from a relative's home were 90% lower than the odds of using emergency ambulance services for residents admitted from their own home. CONCLUSIONS: Emergency service involvement with this vulnerable population merits further examination. Future research on emergency ambulance service use by older people with dementia in care homes, should account for important contextual factors, namely, presence or absence of on-site nursing, GP involvement, and access to residents' family, alongside resident health characteristics.

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.