Adelina Comas Herrera

London School of Economics and Political Science | LSE · Care Policy and Evaluation Centre (CPEC) Department of Health Policy

Increasing demand for long‐term care (LTC) in Europe amid population ageing has challenged how states will evolve to respond to changing needs and questions the younger generations' willingness to support future care for older people. Using novel data from the InCARE survey (September 2021–March 2022), we investigate age‐related attitudes towards t...

Objectives: This work was aimed at characterizing the experiences of discrimination, and report initial psychometric properties of a new tool to capture these experiences, among a global sample of people living with dementia. Methods: Data from 704 people living with dementia who took part in a global survey from 33 different countries and territor...

The WHO Dementia Global Action Plan states that rehabilitation services for dementia are required to promote health, reduce disability, and maintain quality of life for those living with dementia. Current services, however, are scarce, particularly for people with young-onset dementia (YOD). This article, written by an international group of multid...

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...

Background: During the first wave of the COVID-19 pandemic, it is estimated that around 25% of infected residents in Nursing Homes in Catalonia died, which accounted for more than 50% of total COVID-19 deaths in the region. This devasting impact not only highlights the structural deficits of the long-term care facilities system, but it also provide...

Background There is a scarcity of information about the care pathways of people living with dementia under different circumstances in Low and Middle Income Countries (LMICs) countries. This knowledge is important to effectively improve system responses and processes for people living with dementia and their families. Method During a workshop with...

Background The Dementia Severity Rating Scale (DSRS) is an informant report, dementia staging tool that is quick to administer and has previous been shown to differentiate between people with dementia and healthy controls. However, it is not clear how accurate the tool is screening against diagnostic criteria in middle-income settings. Methods Emb...

Background: The recent World Health Organization (WHO) blueprint for dementia research and Lancet Commission on ending stigma and discrimination in mental health has identified a gap around dementia-related measures of stigma and discrimination that can be used in different cultural, language and regional contexts. Aims: We aimed to characterise...

Background: Limited evidence exists on how people living with dementia and their family/unpaid carers navigate care and support in India. Aim: This study used case vignettes to illustrate likely pathways to care for dementia, from receiving a diagnosis to long-term support, in India and to highlight gaps and challenges associated with current ca...

Objectives More people with dementia live in low- and middle-income countries (LMICs) than in high-income countries, but best-practice care recommendations are often based on studies from high-income countries. We aimed to map the available evidence on dementia interventions in LMICs. Methods We systematically mapped available evidence on interven...

There is a need in South Africa to understand the status of available care and support to strengthen responses to dementia. This study provides a situational analysis of the current provisions of health, care and support for older persons, people living with dementia and their families in South Africa. It is a first step towards describing the land...

Background: A core element of the Strengthening Responses to Dementia in Developing Countries (STRiDE) programme was to generate novel data on the prevalence, cost and impact of dementia in low- and middle-income countries, to build better health policy. Indonesia and South Africa are two middle-income countries in need of such data. Aims: To pr...

Introduction: Numerous studies have previously estimated the dementia prevalence in India. However, as these estimates use different methodologies and sampling strategies, generating definitive prevalence estimates can be difficult. Methods: A Delphi process involving eight clinical and academic experts provided prevalence estimates of 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 e...

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:...

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 in...

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...

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 t...

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. We adopted a cross‐cultural adaptation process including forward translation, back translations, and...

Notwithstanding the terrible price the world has paid in the Coronavirus pandemic, the fact remains that longevity at older ages is likely to continue to rise in the medium and longer term. This volume explores how the private and public sectors can collaborate via public-private partnerships (PPPs) to develop new mechanisms to reduce older people’...

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. De...

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 COV...

This is a Living report, “wiki-style”, addressing 68 questions on characteristics of Long-Term Care (LTC) systems, impacts of COVID-19 on LTC, measures adopted to mitigate these impacts and new reforms countries are adopting to address structural problems in LTC systems and to improved preparedness for future events. It is compiled and updated volu...

Context – Throughout the Covid-19 pandemic, long-term care researchers have aimed to generate evidence rapidly to inform the pandemic response. It is unclear which areas were prioritised during this period of rapid evidence generation. Objective(s) – We aimed to map the international scientific evidence on interventions and policy measures to mitig...

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 fro...

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 m...

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 wit...

Introduction As 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...

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...

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 capac...

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 literatu...

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 adult...

Across Latin American and Caribbean countries (LACs), the fight against dementia faces pressing challenges, such as heterogeneity, diversity, political instability, and socioeconomic disparities. These can be addressed more effectively in a collaborative setting that fosters open exchange of knowledge. In this work, the Latin American and Caribbean...

Objectives: In response to an NHS England enquiry, a UK-based working group, comprising dementia researchers from a range of fields and disciplines, aimed to describe the impact of the COVID-19 pandemic on dementia wellbeing and identify priorities for future research. Methods: We supplemented a rapid literature search (including unpublished, non-p...

This report provides an overview of the impact of COVID-19 so far on people who use and provide long-term care in England and of the policy and practice measures adopted to mitigate its impact. It finds that the initial policy responses did not adequately consider the social care sector and that the pandemic has laid bare long-standing problems in...

Context: COVID-19 has disproportionately impacted mortality in English care homes. the end of May and early June. Findings: Although social care policies in England have aligned with those advised by the World Health Organisation, they were arguably delayed and were not implemented effectively. Testing had taken place in 70% of care homes surveyed...

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...

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 m...

Background: Policy 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...

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-b...

Unpicking the costs of dementia care in care homes - Volume 32 Issue 3 - Sarah Cullum, Adelina Comas-Herrera

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 th...

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...

Objectives To investigate associations between level and changes in social isolation and in memory in older men and women. Methods The sample included 6123 women and 5110 men aged 50+ from the English Longitudinal Study of Ageing. Extended Latent Change Score models from six measurement occasions every two years from 2002 were used to investigate...

The World Alzheimer Report 2019: Attitudes to dementia analyses findings of the world’s largest survey on attitudes to dementia, as well as expert essays and case studies from across the world. The report reveals the results of the largest attitudes to dementia survey ever undertaken, with almost 70,000 people across 155 countries and territories...

Introduction In low/middle-income countries (LMICs), the prevalence of people diagnosed with dementia is expected to increase substantially and treatment options are limited, with acetylcholinesterase inhibitors not used as frequently as in high-income countries (HICs). Cognitive stimulation therapy (CST) is a group-based, brief, non-pharmacologica...

Introduction There 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 de...

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...

Background: Existing models for forecasting future care needs are limited in the risk factors included and in the assumptions made about incoming cohorts. We estimated the numbers of people aged 65 years or older in England and the years lived in older age requiring care at different intensities between 2015 and 2035 from the Population Ageing and...

Introduction Countries across the developed world are recognising the need to reconsider and reform their policies for older people, driven in large part by concerns over their future affordability and sustainability in the face of rising demand and decreasing potential support ratios (the number of people in a conventional working age range such a...

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 achiev...

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 achievi...

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 exp...

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 F...

MODEM is an ambitious project that is projecting how future costs, health and quality of life of people living with dementia and their family and other caregivers (carers) could be improved by wider availability of evidence-based interventions. It projects numbers, needs, costs and outcomes for people with dementia and carers over the period to 204...

The MODEM Dementia Evidence Toolkit is a public resource that gives access, via a website, to scientific evidence gathered as part of a systematic mapping of the literature on evaluations of interventions for treatment, care and support of people with dementia and carers. The Toolkit has two components: a bibliographic database and plain English ev...

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, targ...

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. Meth...

Dramatic global increases in future numbers of people with dementia have been predicted. No multicentre population-based study powered to detect changes over time has reported dementia incidence. MRC Cognitive Function and Ageing Study (CFAS) undertook baseline interviews in populations aged 65 þ years in England and Wales (1989–1994). Three areas...

"This paper is based on a European Commission-funded study of future long-term care expenditure in Germany, Italy, Spain and the United Kingdom. It investigates how sensitive long-term care expenditure is to assumptions about demographic trends, future dependency rates, care arrangements, and real inflation. Macro-simulation projection models for e...

We know that in the next decades there will be a huge increase in the numbers of people requiring long-term care, which will be a challenge to most long-term care systems. There are three key ways to respond to this challenge: the first is to moderate future need for care, through finding ways to moderate or even reduce the need for long-term care....

A high proportion of people with severe mental health problems are unemployed but would like to work. Individual Placement and Support(IPS) offers a promising approach to establishing people in paid employment. In a randomized controlled trial across six European countries, we investigated the economic case for IPS for people with severe mental hea...

Many long-term care systems in economically developed countries are reliant on informal care. However, in the context of population ageing, there are concerns about the future supply of informal care. This article reports on projections of informal care receipt by older people with disabilities from spouses and (adult) children to 2032 in England....

We present a methodology to measure the risk of incurring extremely large individual lifetime costs of long-term care (LTC). We show a method that can be used to compare the risk reductions achieved by alternative LTC protection plans. Our proposed methodology is illustrated with a case study. Our estimates show that, according to our proposed risk...

In England, Local Authorities (LAs) contribute to the care home fees of two-thirds of care home residents aged 65+ who pass a means test. LAs typically pay fees below those faced by residents excluded from state support. Most proposals for reform of the means test would increase the proportion of residents entitled to state support. If care homes r...