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Background and Objectives Despite the rapid increase in the number of people living with dementia in Brazil, dementia care is limited. This study describes how people living with dementia and their carers access care, treatment, and support, and identifies what characteristics are likely to enable or prevent access. Research Design and Methods We created 10 vignettes to illustrate fictitious but realistic scenarios involving people living with dementia in Brazil. The vignettes explore a combination of socioeconomic and demographic variables. They were completed using an in-depth desk review of the dementia care landscape in Brazil; a Strengths, Opportunities, Weaknesses, and Threats (SWOT) analysis of the desk review; and expert knowledge. The analysis focused on identifying common sources of service provision, barriers of access to care and support, and specific issues experienced by some population groups. Findings Access to a dementia diagnosis, care, and support for people living with dementia in Brazil is limited. Demographic and socio-economic circumstances play a role in determining the type of services to which a person might have access. Poor knowledge about dementia, lack of capacity in the health system, and lack of formal long-term care support are among the identified barriers to accessing timely diagnosis, care, and support in the country. Discussion and Implications Understanding the barriers and facilitators of access to diagnosis, treatment, and support for people with dementia and families with different demographic and socioeconomic characteristics is crucial for designing dementia policies that are context-specific and responsive to the care needs of different socioeconomic groups in Brazil.

India is the world’s second-most populous country and there are about 5.3 million people with dementia in India. Only one out of ten people living with dementia in India ever gets a diagnosis, care or treatment. There are various obstacles to deliver dementia care and support to people living with dementia and their carers. Furthermore, there is inadequate understanding of dementia in the general public and within the health care professionals. Studies in India indicate that people with dementia experience stigmatisation in society as well as neglect from their families. Social prejudice associated with dementia makes it a challenging experience, in addition, it makes the persons with dementia and carers feel isolated and stigmatised. Focus groups and individual interviews were used to explore perceptions, beliefs and experiences of dementia across a number of stakeholders in India, with an effort to understand stigma towards people with dementia. Participants were recruited in two diverse cities of India (Chennai and Delhi), and were comprised of a range of key stakeholders, including persons with dementia ( n = 8), caregivers ( n = 19), health care professionals ( n = 16) and the general public ( n = 15). Following a thematic analysis, we identified three overachieving themes; (1) Poor awareness, (2) Stigma and (3) Barriers to accessing care. These all occurred within the context of socio-cultural beliefs. Whilst each stakeholder group had different experiences of dementia, it was common for all participant groups to use stigmatising language associated with dementia. In many cases, stigmatising beliefs and poor understanding of dementia resulted in poor care. There is an apparent need to raise awareness of dementia in India across all stakeholder groups; the fact that participants were able to self-identify that they had a lacked awareness of the condition may indicate that these groups are receptive to learning more about dementia.

STRiDE was an ambitious four-year project in seven countries aiming to build capacity around generating and using research to support the development of policies to improve quality of life of people with dementia and their carers. The project’s innovative approach combined rigorous academic research and hands-on civil society advocacy. This paper explores the project’s unique strategy for policy change and compiles case-studies from several of the STRiDE countries. Finally, we share lessons learned and next steps to keep momentum for policy change going in each of these countries – and beyond.

In most countries, it is clear that the cost of care, treatment, and support of people with Alzheimer’s disease and other dementias will rise considerably in the next few decades. This chapter discusses dementia as an economic concern and looks at the policy questions addressed by the current literature on the costs of dementia. It then considers the policy responses to concerns about the growing cost of dementia, distinguishing between ‘hopeful’ policies that seek to reduce or contain the costs, and policies to address the capacity of the health, care, and social protection systems to respond to dementia care in a way consistent with public expectations. We conclude that the costs of dementia care do not necessarily equate to dementia care being unsustainable, but they do highlight the need for policy action. Additionally, it is relatively easier for policymakers to adopt ‘hopeful’ policies, such as investment in research to find a disease-modifying treatment for Alzheimer’s or strategies for dementia risk reduction, than it is to tackle the more politically complex decisions needed to ensure that health, care, and social protection systems have the capacity to respond to the challenge of dementia.

Involving people living with dementia in service design and planning has become more common in high-income countries. It remains rare in low- and middle-income countries where two-thirds of the world’s people with dementia live. In this commentary article, we explore the barriers to inclusion of people living with dementia in planning in low- and middle-income countries and make a case for the inclusion of people living with dementia in care and service planning. We suggest how this can be done at individual, community or national and state level using the following principles: 1) respecting the rights of people living with dementia to self-determination; 2) valuing people living with dementia’s unique understanding of dementia; 3) creating a culture of active inclusion which creates a space for people living with dementia to participate and 4) ensuring appropriate accommodations are in place to maximise participation.

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.

Context: COVID-19 has disproportionately impacted mortality in English care homes.Objectives: To examine COVID-19 policies for care homes in England and to describe providers’ experiences of those policies in May and June 2020.Methods: Mixed methods including policy analysis and an anonymous online survey of English care home providers, recruited using webinars and WhatsApp groups about their experiences of funding, testing, PPE, isolation and staffing until the end of May and early June 2020.Findings: Although social care policies in England have aligned with those advised by the World Health Organization, they were arguably delayed and were not implemented effectively. Testing had taken place in 70% of care homes surveyed but only 36% of residents had been tested, of whom 16% were positive. Managers were unable to effectively implement isolation policies and reported that workforce and funding support did not always reach them. Guidance changed frequently and was conflicting and could not always be implemented, for example when personal protection equipment was extremely expensive and difficult to source.Limitations: Although this was not a representative sample, care homes responded from across the country and we report the most consistent themes. Potentially, care homes that found it harder to implement national guidance may have been more inclined to respond to our survey than those who more easily changed practice, although those with outbreaks may also have had less capacity to respond. Some aspects of policy will have also changed since early June.Implications: Despite policies that were put in place, care homes amongst our survey respondents were still unable to access sufficient funding, testing, PPE, workforce support and practical support to isolate residents by the end of May and early June. Future cross-country policy analyses must examine policy implementation as well as content.

Cross-cultural adaptation is an important part of using validated questionnaires across countries and settings. Here we describe the cross-cultural process adopted in the STRiDE (STrengthening Responses to dementia in DEveloping countries) program.\ud \ud We adopted a cross-cultural adaptation process including forward translation, back translations, and cognitive interviews of the STRiDE toolkit. In total, 50 older adults and 41 carers across sites in Indonesia and South Africa participated in cognitive interviews; field notes and verbatim quotes are reported.\ud \ud We describe the cross-cultural adaptation process of the STRiDE toolkit. During the process, issues were identified with the translated toolkit, including aspects related to cultural appropriateness, terminology equivalence, and timings.\ud \ud The data demonstrate that a rigorous, yet pragmatic, cross-cultural adaptation process can be achieved even with limited resources. Our process should help the design and conduct of future dementia research in various contexts.

Objectives To investigate associations between level and changes in social isolation and in memory in older men and women. Methods The sample included 6,123 women and 5,110 men aged 50+ from the English Longitudinal Study of Aging (ELSA). Extended latent change score models from six measurement occasions every 2 years from 2002 were used to investigate associations between social isolation and memory. Models were adjusted for age, socioeconomic position, and health. Results Social isolation increased and memory decreased over time. Among men an initially high level of social isolation was associated with a somewhat greater decrease in memory. Among women a greater increase in social isolation predicted a greater decrease in memory and a larger change in social isolation was associated with further larger changes in isolation, although when social isolation reached a higher level it subsequently decreased. Conclusions Results suggest that the association between social isolation and memory decline arises because social isolation is associated with increased memory decline rather than poor memory leading to increases in social isolation. Men with high levels of social isolation and women with accumulated social isolation over time are especially affected as these patterns of isolation were associated with more profound memory decline.

With population ageing worldwide, dementia poses one of the greatest global challenges for health and social care in the 21st century. In 2019, around 55 million people were affected by dementia, with the majority living in low- and middle-income countries. Dementia leads to increased costs for governments, communities, families and individuals. Dementia is overwhelming for the family and caregivers of the person with dementia, who are the cornerstone of care and support systems throughout the world. To assist countries in addressing the global burden of dementia, the World Health Organisation (WHO) developed the Global Action Plan on the Public Health Response to Dementia 2017–2025. It proposes actions to be taken by governments, civil society, and other global and regional partners across seven action areas, one of which is dementia risk reduction. This paper is based on WHO Guidelines on risk reduction of cognitive decline and dementia and presents recommendations on evidence-based, multisectoral interventions for reducing dementia risks, considerations for their implementation and policy actions. These global evidence-informed recommendations were developed by WHO, following a rigorous guideline development methodology and involved a panel of academicians and clinicians with multidisciplinary expertise and representing geographical diversity. The recommendations are considered under three broad headings: lifestyle and behaviour interventions, interventions for physical health conditions and specific interventions. By supporting health and social care professionals, particularly by improving their capacity to provide gender and culturally appropriate interventions to the general population, the risk of developing dementia can be potentially reduced, or its progression delayed. publishedVersion

Background The COVID-19 pandemic has unprecedented consequences for the management of chronic diseases such as dementia. However, limited evidence exists on the condition of persons with dementia and their caregivers during the pandemic in lower-middle-income countries (LMICs). The study aimed to provide insights into the experiences of persons with dementia and their families during the early phases of the pandemic in India. Methods This study adopted a mixed-method approach. One hundred and four persons with dementia and their caregivers were evaluated via telephone using validated instruments and a semi-structured interview guide. We used the quantitative data collected to establish a baseline, whereas qualitative data were analysed thematically. Results The study revealed that persons with dementia and their caregivers experienced difficulties during the pandemic, which included worsening of behaviour, problems in accessing care, disruptions in functional activities and struggles in enforcing infection prevention contributing to caregiver distress. An important finding that emerged was the unchanging reality of caregiving for families. The relative success of the public health response to the COVID-19 pandemic contrasted with the lack of awareness and formal support for dementia. Conclusions The COVID-19 pandemic has exposed the vulnerabilities of persons with dementia and their caregivers. This calls for a collaborative reframing of medical care and public health policies to address dementia care.

IntroductionAs the largest and most rapidly ageing population, Chinese people are now the major driver of the continued growth in dementia prevalence globally. The need for evidence-based interventions in Chinese communities is urgent. Although a wide range of pharmacological and non-pharmacological interventions for dementia have been trialled in Chinese populations, the evidence has not been systematically synthesised. This systematic review and meta-analysis aims to map out the interventions for people living with dementia and their carers in Chinese communities worldwide and compare the effectiveness of these interventions.Methods and analysisThis protocol followed the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols checklist. We will search Chinese (China National Knowledge Infrastructure, WanFang DATA) and English bibliographical databases (MEDLINE, EMBASE, PsycINFO, CINAHL Plus, Global Health, WHO Global Index Medicus, Virtual Health Library, Cochrane CENTRAL, Social Care Online, BASE, MODelling Outcome and cost impacts of interventions for DEMentia (MODEM) Toolkit, Cochrane Database of Systematic Reviews), complemented by hand searching of reference lists. We will include studies evaluating the effectiveness of interventions for dementia or mild cognitive impairment in Chinese populations, using a randomised controlled trial design, and published between January 2008 and June 2020. We will use a standardised form to extract data and Version 2 of the Cochrane risk-of-bias tool for randomised trials to assess the risk of bias of the included studies. Collected data will be fully interpreted with narrative synthesis and analysed using pairwise and network meta-analyses to pool intervention effects where sufficient information is available. We will perform subgroup analysis and meta-regression to explore potential reasons for heterogeneity.Ethics and disseminationNo formal ethics approval is required for this protocol. The findings will facilitate the development of studies on interventions for dementia and timely inform dementia policymaking and practice. Planned dissemination channels include peer-reviewed publications, conference presentations, public events and websites.PROSPERO registration numberCRD42019134135.

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.

Evidence from middle-income countries indicates high and increasing prevalence of dementia and need for services. However, there has been little investment in care, treatment or support for people living with dementia and their carers. The Strengthening Responses to Dementia in Developing Countries (STRiDE) project aims to build both research capacity and evidence on dementia care and services in Brazil, Indonesia, India, Jamaica, Kenya, Mexico and South Africa. This article presents the Theory of Change (ToC) approach we used to co-design our research project and to develop a strategic direction for dementia care, treatment and support, with stakeholders. ToC makes explicit the process underlying how a programme will achieve its impact. We developed ToCs in each country and across the STRiDE project with researchers, practitioners, people living with dementia, carers and policymakers at different levels of government. This involved (1) an initial ToC workshop with all project partners (43 participants); (2) ToC workshops in each STRiDE country (22–49 participants in each); (3) comparison between country-specific and overall project ToCs; (4) review of ToCs in light of WHO dementia guidelines and action plan and (5) a final review. Our experiences suggest ToC is an effective way to generate a shared vision for dementia care, treatment and support among diverse stakeholders. However, the project contribution should be clearly delineated and use additional strategies to ensure appropriate participation from people living with dementia and their carers in the ToC process.

Jamaica’s ageing population, high prevalence of non-communicable diseases (NCDs), and associated functional impairments suggest the need for a sustainable long-term care (LTC) system. This paper describes the current LTC system in Jamaica. A review of empirical and grey literature on LTC was supplemented with consultations and interviews and group discussions for knowledge exchange, impact and engagement events with stakeholders being conducted as part of a project on dementia care improvement. Four key findings emerged: (1) Jamaica’s LTC system depends substantially on informal care (both unpaid and paid); (2) there is a need for strategic coordination for LTC across the state, cross-ministerial, private, and volunteer sectors; (3) compulsory insurance and social protection schemes appear to exacerbate rather than narrow socioeconomic inequalities in LTC; and (4) there is a lack of systematic LTC data gathering and related information systems in both the private and public sector—for both institutional and community-based care. For LTC in Jamaica and the broader Caribbean region to be sustainable, more evidence-informed policies and practices that address inequalities in access to services, ability to pay for care, direct support from government, and the risk of needing LTC are needed.

Despite many reported associations, the direct cause of neurodegeneration responsible for cognitive loss in Alzheimer’s disease and some other common dementias is not known. The normal human plasma protein, serum amyloid P component, a constituent of all human fibrillar amyloid deposits and present on most neurofibrillary tangles, is cytotoxic for cerebral neurones in vitro and in experimental animals in vivo. The neocortical content of serum amyloid P component was immunoassayed in 157 subjects aged 65 or more with known dementia status at death, in the large scale, population-representative, brain donor cohort of the Cognitive Function and Ageing Study, which avoids the biases inherent in studies of predefined clinico-pathological groups. The serum amyloid P component values were significantly higher in individuals with dementia, independent of serum albumin content measured as a control for plasma in the cortex samples. The odds ratio for dementia at death in the high serum amyloid P component tertile was 5.24 (95% confidence interval 1.79–15.29) and was independent of Braak tangle stages and Thal amyloid-β phases of neuropathological severity. The strong and specific association of higher brain content of serum amyloid P component with dementia, independent of neuropathology, is consistent with a pathogenetic role in dementia., The normal blood protein, serum amyloid P component (SAP), is toxic for cerebral neurones but normally is largely excluded from the brain. Ellmerich et al. report that higher neocortical content of SAP is strongly associated with dementia at death, consistent with a pathogenetic role of SAP in neurodegeneration., Graphical Abstract Graphical Abstract

Funder: UK Dementia Research Institute; Id: http://dx.doi.org/10.13039/501100017510, Funder: UK Research and Innovation; Id: http://dx.doi.org/10.13039/100014013, Funder: University of Worcester; Id: http://dx.doi.org/10.13039/100010022, Funder: University College London Hospitals NHS Foundation Trust; Id: http://dx.doi.org/10.13039/501100008721, Funder: NIHR Biomedical Research Centre, Royal Marsden NHS Foundation Trust/Institute of Cancer Research; Id: http://dx.doi.org/10.13039/100014461, Funder: Economic and Social Research Council; Id: http://dx.doi.org/10.13039/501100000269, Funder: Engineering and Physical Sciences Research Council; Id: http://dx.doi.org/10.13039/501100000266, Objectives: In response to a commissioned research update on dementia during the COVID‐19 pandemic, a UK‐based working group, comprising dementia researchers from a range of fields and disciplines, aimed to describe the impact of the pandemic on dementia wellbeing and identify priorities for future research. Methods: We supplemented a rapid literature search (including unpublished, non‐peer reviewed and ongoing studies/reports) on dementia wellbeing in the context of COVID‐19 with expert group members' consensus about future research needs. From this we generated potential research questions the group judged to be relevant that were not covered by the existing literature. Results: Themes emerged from 141 studies within the six domains of the NHS England COVID‐19 Dementia Wellbeing Pathway: Preventing Well, Diagnosing Well, Treating Well, Supporting Well, Living Well and Dying Well. We describe current research findings and knowledge gaps relating to the impact on people affected by dementia (individuals with a diagnosis, their carers and social contacts, health and social care practitioners and volunteers), services, research activities and organisations. Broad themes included the potential benefits and risks of new models of working including remote healthcare, the need for population‐representative longitudinal studies to monitor longer‐term impacts, and the importance of reporting dementia‐related findings within broader health and care studies. Conclusions: The COVID‐19 pandemic has had a disproportionately negative impact on people affected by dementia. Researchers and funding organisations have responded rapidly to try to understand the impacts. Future research should highlight and resolve outstanding questions to develop evidence‐based measures to improve the quality of life of people affected by dementia.

Context: Unpaid carers are the backbone of long-term care (LTC) systems around the world. The COVID-19 pandemic has further increased the pressure many unpaid carers experience; however, their experience has been largely absent from public reporting.Objective: We aim to map the available evidence of the impacts of COVID-19 on unpaid carers of adults (>18 years) with LTC needs as well as of measures implemented to mitigate these effects and how well they have worked.Method: We conducted a rapid review of the academic and grey literature on unpaid carers of adults with LTC needs during the COVID-19 pandemic, covering the period until November 2020.Findings: We identified six key themes that highlight the impacts of COVID-19 on unpaid carers of people living in the community. These are: care commitment, concerns related to COVID-19, availability of formal and informal support, financial implications, carer health and well-being, and carers’ adaptability. In addition, we captured aspects identified by unpaid carers supporting people in residential care settings under the theme ‘carers of people in residential settings’. Finally, we reported evidence of measures implemented to mitigate the impacts on carers. This included the use of technology and the receipt of financial assistance and support for working carers.Limitations: The evidence reported in this review is based largely on cross-sectional data and some of the data reported relies on convenience samples.Implications: We highlight the financial and health impacts that many unpaid carers experience. Given the vital support carers provide to adults with LTC needs, policy makers should consider supporting unpaid carers to mitigate the negative impacts on their lives.

The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link. Blanket and total bans of nursing home visitors were widespread at the beginning of the COVID-19 pandemic when governments and homes were unprepared to prevent and manage outbreaks. However, these visitor restrictions have been prolonged and often reinstated after having been lifted, despite increased home and health system readiness and mounting evidence of harms to residents. Further, in most nursing homes, visitor bans were introduced without discussion or consent from residents or their advocates, constituting a violation of the resident’s rights to have visitors.

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 STRiDE project sets out to support the development of effective dementia policy in middle-income countries (Brazil, India, Indonesia, Jamaica, Kenya, Mexico, and South Africa). As part of this it will generate new data about the prevalence of dementia for a subset of these countries. This study aims to identify the current estimates of dementia prevalence in these countries and where the gaps lie in the current literature. A systematic review was completed on 30th April 2019 across electronic databases, identifying dementia prevalence literature originating from any of the seven countries. Four hundred and twenty-nine records were identified following de-duplication; 28 studies met the inclusion criteria and were included in the systematic review. Pooled estimates of dementia prevalence ranged from 2% to 9% based on DSM-IV criteria; these figures were generally higher in studies using other diagnostic criteria (e.g. the 10/66 algorithm). Available prevalence data varied between countries. Only Brazil, Mexico and India had data derived from studies judged as having a low risk of bias. Irrespective of country, studies often were not explicit in detailing the representativeness of their sample, or whether there was non-response bias. Further transparent and externally valid dementia prevalence research is needed across the STRiDE countries.

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.

BackgroundPolicy responses to mitigate the impact of the COVID-19 pandemic on long-term care (LTC) require robust and timely evidence on mortality and spread of the disease in these settings. The aim of this living systematic review is to synthesise early international evidence on mortality rates and incidence of COVID-19 among people who use and provide LTC.MethodsWe report findings of a living systematic review (CRD42020183557), including studies identified through database searches up to 26 June 2020. We searched seven databases (MEDLINE; Embase; CINAHL Plus; Web of Science; Global Health; WHO COVID-19 Research Database; medRxiv) to identify all studies reporting primary data on COVID-19 related mortality and incidence of disease among LTC users and staff. We excluded studies not focusing on LTC. Included studies were critically appraised and results on number of deaths and COVID-19 related mortality rates, case fatality rates, and excess deaths (co-primary outcomes), as well as incidence of disease, hospitalisations, and ICU admissions were synthesised narratively.FindingsA total of 54 study reports for 49 unique primary studies or outbreak reports were included. Outbreak investigations in LTC facilities found COVID-19 incidence rates of between 0.0% and 71.7% among residents and between 0.4% and 64.0% among staff at affected facilities. Mortality rates varied from 0.0% to 17.1% of all residents at outbreak facilities, with case fatality rates between 0.0% and 33.7%. In included studies of outbreaks, no LTC staff members had died.Studies of wider LTC populations found that between 0.4% and 40.8% of users, and between 4.0% and 23.8% of staff were infected, although the generalisability of these studies is limited.There was limited information on the impact of COVID-19 on LTC in the community.InterpretationLong-term care users have been particularly vulnerable to the COVID-19 pandemic. However, we found wide variation in spread of disease and mortality rates between outbreaks at individual LTC facilities. Further research into the factors determining successful prevention and containment of COVID-19 outbreaks is needed to protect long-term care users and staff.FundingThis work was partially conducted as part of the “Strengthening responses to dementia in developing countries” (STRiDE) project, supported by the UK Research and Innovation’s Global Challenges Research Fund (ES/P010938/1). The funders had no role in the design and execution of this study, interpretation of its results, and decision to submit this work to be published.

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.

In most countries, it is clear that the costs of care, treatment, and support of people with Alzheimer’s disease and other dementias will rise considerably in the next few decades. This paper discusses dementia as an economic concern and looks at the policy questions addressed by the current literature on the costs of dementia. It then considers the policy responses to concerns about the growing cost of dementia, distinguishing between ‘hopeful’ policies that seek to reduce or contain the costs, and policies to address the capacity of the health, care, and social protection systems to respond to dementia care in a way consistent with public expectations. We conclude that the costs of dementia care do not necessarily equate to dementia care being unsustainable, but they do highlight the need for policy action. Additionally, it is relatively easier for policymakers to adopt ‘hopeful’ policies, such as investment in research to find a disease modifying treatment for Alzheimer’s or strategies for dementia risk reduction, than it is to tackle the more politically complex decisions needed to ensure that health, care, and social protection systems have the capacity to respond to the challenge of dementia.

Objective National and global dementia plans have focused on the research ambition to develop a cure or disease-modifying therapy by 2025, with the initial focus on investment in drug discovery approaches. We set out to develop complementary research ambitions in the areas of prevention, diagnosis, intervention, and care and strategies for achieving them. Methods Alzheimer's Society facilitated a taskforce of leading UK clinicians and researchers in dementia, UK funders of dementia research, people with dementia, and carer representatives to develop, using iterative consensus methodology, goals and recommendations to advance dementia research. Results The taskforce developed 5 goals and 30 recommendations. The goals focused on preventing future cases of dementia through risk reduction, maximising the benefit of a dementia diagnosis, improving quality of life, enabling the dementia workforce to improve practice, and optimising the quality and inclusivity of health and social care systems. Recommendations addressed gaps in knowledge and limitations in research methodology or infrastructure that would facilitate research in prioritised areas. A 10-point action plan provides strategies for delivering the proposed research agenda. Conclusions By creating complementary goals for research that mirror the need to find effective treatments, we provide a framework that enables a focus for new investment and initiatives. This will support a broader and more holistic approach to research on dementia, addressing prevention, surveillance of population changes in risk and expression of dementia, the diagnostic process, diagnosis itself, interventions, social support, and care for people with dementia and their families.

The COVID-19 pandemic has had a disproportionate impact, in terms of mortality, on people who live in Long-Term Care Facilities (LTCFs). This study involved compiling data on number of deaths of people who live in LTCFs and analyzing the extent to which differences between countries could be attributed to measures taken to control the spread of COVID-19 to LTCFs or to other factors. The study found that differences in how the data is collected make international comparisons difficult but that there is a clear correlation between number of COVID-19 deaths of residents in LTCFs and number of COVID-19 deaths of people living in the community. The study also found that countries that experienced a particularly high number of deaths in LTCFs during the first COVID-19 wave tended to have lower relative mortality in LTCFs in the subsequent waves, which potentially could be attributed to learning from the initial shock.

The extent to which technology may be able to support people with dementia and their carers along the care pathway and in different care settings is of interest to policy makers and governments. In this paper we provide an overview of the role of technology in dementia care, treatment and support by mapping existing technologies - by function, target user and disease progression. Technologies identified are classified into seven functions: memory support, treatment, safety and security, training, care delivery, social interaction and other. Different groups of potential users are distinguished: people with mild cognitive impairment and early stages of dementia, people with moderate to severe dementia and unpaid carers and health- and social care professionals. We also identified the care settings, in which the technologies are used (or for which the technologies are developed): at home in the community and in institutional care settings. The evidence has been drawn from a rapid review of the literature, expert interviews and web and social media searches. The largest number of technologies identified aim to enhance the safety and security of people with dementia living in the community. These devices are often passive monitors, such as smoke detectors. Other safety interventions, such as panic buttons, require active intervention. The second largest number of interventions aims to enhance people's memory and includes global positioning systems devices and voice prompts. These technologies mostly target people in the early stages of dementia. A third group focusing on treatment and care delivery emerged from the literature. These interventions focus on technology-aided reminiscence or therapeutic aspects of care for people with dementia and their carers. While the review found a range of technologies available for people with dementia and carers there is very little evidence of widespread practical application. Instead, it appears that stakeholders frequently rely on everyday technologies re-purposed to meet their needs.

IntroductionThere are more people living with dementia in low- and middle-income countries (LMICs) than in high-income countries. Evidence-based interventions to improve the lives of people living with dementia and their carers are needed, but a systematic mapping of methodologically robust studies in LMICs and synthesis of the effectiveness of dementia interventions in these settings is missing.Methods and analysisA systematic review and meta-analysis will be conducted to answer the question: Which dementia interventions were shown to be effective in LMICs and how do they compare to each other? Electronic database searches (MEDLINE, EMBASE, PsycINFO, CINAHL Plus, Global Health, WHO Global Index Medicus, Virtual Health Library, Cochrane CENTRAL, Social Care Online, BASE, MODEM Toolkit, Cochrane Database of Systematic Reviews) will be complemented by hand searching of reference lists and local knowledge of existing studies from an international network of researchers in dementia from LMICs. Studies will be eligible for inclusion if they were published between 2008 and 2018, conducted in LMICs and evaluated the effectiveness of a dementia intervention using a study design that supports causal inference of the treatment effect. We will include both randomised and non-randomised studies due to an anticipated low number of well-conducted randomised trials in LMICs and potentially greater external validity of non-randomised studies conducted in routine care settings. In addition to narrative synthesis of the interventions, feasibility of pairwise and network meta-analyses will be explored to obtain pooled effects of relative treatment effects.Ethics and disseminationSecondary analysis of published studies, therefore no ethics approval required. Planned dissemination channels include a peer-reviewed publication as well as a website, DVD and evidence summaries.Prospero registration numberCRD42018106206.

This chapter examines whether the fact that European countries are tending to make their health systems more similar, and that they have all faced a similar economic reality, is having an effect on the proportion of income that each country devotes to public health expenditures. It focuses on public health expenditures as this is where most cost containment measures have been targeted. The chapter explores the arguments for convergence and continues with the arguments against. Despite the general view of convergence in the various types of reforms, there are substantial aspects of the health systems that remain remarkably different and that are unlikely to change quickly. Further research could be done in the direction of testing the convergence hypotheses for total expenditures in health as a percentage of Gross Domestic Product because - especially in insurance-based systems - the classification of private/public may not be that clear.

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.

This chapter presents some findings from the research project ‘Modelling Needs and Resources of Older People to 2030’ (MAP2030). The project developed a set of projection models to estimate future family circumstances, incomes, pensions, savings, disability and care needs of older people in England. These projections included public and private expenditure on pensions, disability benefits and care services under different scenarios for reform of pensions and long-term care funding under a range of alternative population futures. The chapter focuses on the projected future costs and impacts for the different income quintiles of the older population of proposed reforms to the system of funding adult social care, in particular the impact of a cap on individual liability to meet care costs.

The macrosimulation model will produce projections to 2040 of the future numbers of older people with dementia in England, associated expenditures on care and outcomes in terms of quality of life for them and their family or other unpaid carers. It will take as inputs the outputs of the microsimulation model and modelling of the impact of specific interventions. A key feature is that this model will differentiate between groups of people with dementia by severity of cognitive impairment and physical disability, and it will assign packages of care to people with dementia based on their needs related characteristics. It will use data from the MRC Cognitive Function and Ageing Study (CFAS), the English Longitudinal Study of Ageing (ELSA), official data from the Health and Social Care Information Centre, baseline data from various trials of interventions for people with dementia and new data collected as part of the MODEM study.