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P17. Policies and strategies: Cost/funding of dementia research and care

Detailed programme, abstracts and presentations

P17.1. Mind the Gap: gender & unpaid dementia care in Europe


Global Alzheimer's & Dementia Action Alliance, London, United Kingdom

Across the EU, 80% of care is provided by informal carers. The majority are women, typically wives, middle-aged daughters or daughters-in-law, aged 45 to 75 - often part of the so-called ‘sandwich generation’. At least two thirds of informal dementia carers are women.

This presentation will explore why unpaid dementia care so often falls to women and discuss the wider implications for Europe. We will showcase GADAA’s 4-minute short film ‘And Then I Looked Up Dementia - Women Speak Out’ ( featuring Oscar-nominated actor Carey Mulligan and sector experts.

Nowadays, unpaid care work is still primarily seen as a women’s responsibility and is unequally distributed between genders. European tax benefit systems and a lack of investment in quality long-term care services can disproportionally affect women. European time-use surveys reveal persistent and growing inequalities between women’s and men’s activities. In 2015 the situation had become more unequal than ten years before. On average, working women in Europe spend 26 hours a week on unpaid caregiving, compared with just nine hours for the average working man.

Those who support people living with dementia often have to reduce paid work, and women are more likely than men to go part-time, or stop work completely. More women than men also provide more demanding and intensive forms of daily caring, such as bathing and dressing, care with incontinence and walking.

Dementia care is vital social infrastructure that must be recognised throughout policymaking to achieve sustainable economic growth and equitable societies across Europe, especially as populations age.  Yet few national European dementia policies recognise this fact.

In this session we will share global perspectives on how European dementia organisations can harness current debates over gender, care and pay gaps to demand fair and dignified care systems for everyone affected by dementia.

P17.2. A model to simulate the cost and outcome consequences of improvements in the dementia care pathway

COMAS-HERRERA Adelina, REHILL Amritpal, LORENZ Klara, KING Derek, SHI Cheng, KNAPP Martin

London School of Economics and Political Science, London, United Kingdom

Following increased investment in research on what works in the care, treatment and support of people with dementia and their carers, it is important to consider how interventions for which there is strong evidence can be made more widely available.

Methods: As part of the MODEM (a comprehensive approach to modelling outcome and cost impacts of interventions for dementia) project, we have developed a “dementia care pathways model” that aims to simulate, in a series of linked decision tree models, the pathway that people with dementia in England follow.

The model is structured in five parts: pre-diagnostic and referral to diagnostic services, diagnostic, post-diagnostic support, ongoing care and end of life care. We have developed a version of the pathway for carers. We have used official data, analysis of primary level data and consultations with academics, clinicians, charities, people with dementia and family carers.

The model estimates how many people are currently accessing key dementia services and interventions and can be used to identify the necessary actions or services that need to occur before someone can access a service or treatment, so that modelling the cost of scaling up an intervention can consider the cost of reaching the point of access (for example diagnostic), as well as the cost of the intervention itself.

Results: We will present some examples of using the model to simulate increased access to a number of cost-effective dementia interventions. Also, we will reflect on the relationship between the lack of availability of national data about what happens to people with dementia in England beyond the point of diagnostic, and the fragmented nature of the health and social care system in England.

P17.3. Research investment and a UK Reseach roadmap to deliver change for people affected by dementia by 2025

PICKETT James, on behalf of the Alzheimer's Society Research Taskforce

Alzheimer's Society, London, United Kingdom

The ambition to find a cure or disease-modifying treatment for dementia by 2025 has been a powerful catalyst for the construction of national and international research strategies and increases in research funds. By contrast, research in to other areas has languished behind. For example, a global database of dementia research projects (International Alzheimer's Disease Research Portfolio) finds only 3.4% of the 5,837 research projects added over the last three years’ address care, support and health economics of dementia. During 2017 Alzheimer's Society, UK convened an expert taskforce of 16 leading UK researchers, public and patient involvement and other stakeholders to develop additional goals for dementia research to sit alongside the existing ambition to find a disease-modifying treatment by 2025. The 5 goals are supported by 30 detailed recommendations for their delivery, and are in line with the World Health Organisation recommendation for nations to implement national research agendas on prevention, diagnosis, treatment and care of people with dementia (Pickett et al, 2018). We have now developed a comprehensive implementation plan which involves addressing barriers and infrastructural needs for the delivery of person-focused research. This abstract will present research funding investment, drawn from UK, European and global data, against different research aims and areas identified in the Research Roadmap. It will provide advances in progress of the Research Roadmap in building an holistic research agenda. The challenges of funding, research methods, stakeholder involvement and access to resources and data for non-biomedical research are of high importance, as recognized by initiatives such as JPND and the World Dementia Council, and will be best solved by global collaboration.

P17.4. A toolkit to support and inspire researchers and people with dementia/ carers to collaborate more


Alzheimer Nederland, Utrecht, Netherlands

Introduction: To ensure the relevance of the results of scientific research for people with dementia and carers, Alzheimer Nederland wants them to participate in dementia research in the Netherlands. This is why we want to stimulate researchers and people with dementia/carers to work towards a partnership. In the past several years we have noticed both are motivated to work together but they are struggling to do so. Therefore, we aimed to develop a toolkit for both parties to support and inspire them.

Method The Toolkit was developed using years of experience with patient participation within the national research program Memorabel in which Alzheimer Nederland is responsible for the involvement of people with dementia and carers. Amongst others, information was gathered via the progress reports of dozens of research projects and by interviews with lay-experts and researchers. The Toolkit was developed in close collaboration with a science-journalist.

Results: For both researchers and people with dementia and carers four information articles (the what-why-when and how) and four interview stories were written. The articles give an insight on which parts of the project people with dementia and carers can be involved, why it’s important to involve them, when in the research cycle it’s best to involve them and how they can be involved. The inspiring interviews give an insight in the more personal experience of both parties.

Discussion/Evaluation: The Toolkit was launched at the start of 2018 and the first researchers have used the toolkit in the application phase of the 7th grant cycle of Memorabel. This year we will evaluate and further develop the toolkit.



P17.5. Projections of long-term care expenditure for older people living with dementia in England, 2015 to 2040

HU Bo1, WITTENBERG Raphael1, KING Derek1, REHILL Amritpal1, COMAS-HERRERA Adelina1, JAGGER Carol2, KNAPP Martin1

1PSSRU, London School of Economics (LSE), London, United Kingdom, 2Newcastle University, London, United Kingdom

Objectives: Like other European countries, the UK has a rapidly ageing population and is faced with increasing demand for dementia care. This study projects the receipt of and the expenditure on long-term care services for older people living with dementia in England between 2015 and 2040.

Methods: We built a projection model using a macrosimulation approach. Our analyses drew on three sources of data: (1) numbers of older people with dementia projected by the Population Ageing and Care Simulation (PACSim) model; (2) the Cognitive Function & Ageing Study II (CFAS II) which collected information on cognitive function and receipt of long-term care services for older people; (3) the Modelling Outcome and Costs Impacts of Interventions of Dementia (MODEM) project cohort which includes 300 people with a clinical diagnosis of dementia and their main carers in Sussex England.

Results: The total number of older people who live with dementia and need long-term care is projected to more than double by 2040. Long-term care expenditure will increase almost threefold by 2040 due to both demographic pressure from population ageing and the expected real rises in wages in the social care sector.   

Conclusion: Both the demand for and the expenditure on long-term care services are expected to increase substantially over the coming decades in England. Better health and social care integration, effective prevention programmes, and a productive workforce of carers will be essential to promote healthy ageing, improve the quality of life of people with dementia, and address the economic challenges associated with dementia care.

P17.6. Dementia Diagnostic Services; Findings from a 2017 Review of Irish Memory Clinics

GIBB Matthew1, BEGLEY Emer2

1Dementia Services Information and Development Centre, Dublin, Ireland, 2National Dementia Office, Dublin, Ireland

In 2017 the Dementia Services Information and Development Centre (DSIDC) and the National Dementia Office (NDO) published the 4th Edition of a Guide to Memory Clinics in Ireland. The guide includes information from a review of existing memory clinics operating across the country.

Memory clinics were identified and asked to complete an on-line questionnaire. A total of 25 clinics were invited to participate and all responded. The review examined the location and composition of the memory clinic teams and the extent and type of service provided.  

Findings show that the vast majority of clinics were hospital based, with one third located in the Dublin area. 50% of counties did not have a memory clinic. 24 of the 25 memory clinics offered assessment and diagnostic services for dementia.

The majority did see people aged under 65 years (N=21), however there was a small number with a restricted service to those aged 65 years and over.  While the majority operated with a Multi-Disciplinary Team, the type and extent of health and social care input was not standardised across the sample.  Clinics also varied considerably in the frequency of their service, in one case operating five days a week. The majority ran once a week. Findings also show considerable differences in the type of post-diagnostic support offered to those who received a diagnosis of dementia.

Results show the evident inequality in access to memory clinics across the country. The review builds on findings from previous DSIDC memory clinic research and provides valuable data to support improved planning and delivery of dementia diagnostic services. It also offers important insights into the extent and type of dementia post-diagnostic support currently offered through memory clinics in Ireland. 



Last Updated: Wednesday 14 November 2018


  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche