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Support for research

Research

Practice and service provision

A number of strategies examined the way in which research could be used to make a difference to professional practice or the delivery of services for people with dementia, their families and carers.

For example, the Cypriot strategy commits to greater support in relation to the prevention of the condition (including risk factors) as well as the application of such research in the provision of services.

Comparatively, the Portuguese strategy primarily views research in the context of measurement and evaluation of different elements within the strategy, highlighting that whilst there is a need for greater research in basic and clinical research into dementia, there is also a need for research into services and policies. This was also the case within the Welsh strategy which included evaluation of its ‘teams around the individual’ approach as well as committing to ensuring research informs and shapes practice.

Similarly, Flanders proposes to ensure that research transforms into practice through better utilisation of information websites. The Finnish strategy also proposes an online portal to spread good practice and evidence. In addition, the Swiss strategy also commits to the linking of research and practice through an online platform logging research projects and findings on dementia.

Both the English and Welsh strategies identify the need for greater research into the day-to-day practical issues which affect people with dementia, their carers and families in managing the condition. Additionally, the English strategy commits to more research being conducted and disseminated in care homes, as well as a greater focus on research to inform effective service models and interventions.

The English strategy has a considerable focus on risk factors related to dementia, committing to a cure or disease-modifying therapy to be on track to exist by 2025 and an understanding of the interactions of genetic risk with comorbidities and environmental triggers that exacerbate disease progression. In addition, it contains a commitment related to prevention, including measures such as biomarkers for the stratification of disease and monitoring of disease progression, through imaging, molecular, cognitive and behavioural studies.

The Finnish strategy also has a considerable focus on research, with national health and research organisations having responsibility for producing information on the costs, effectiveness and quality of services used by people with dementia. The national body (along with public sector and third sector bodies) also has responsibility for other research areas, including developing national criteria and indicators for the quality control and supervision of care and services, the promotion of brain health among the population and producing evidence to inform the development of services which support people with dementia, their families and carers.

The Austrian strategy took a similar approach to improving the quality of care through dementia research, primarily through focusing on the causes of dementia and the needs of people with dementia as well as, communicating the recent state of research on dementia, identifying the gaps in information and data, and undertaking coordinated research to close the gaps.

The Norwegian strategy commits its national research body to establishing three new cross-disciplinary 10-year programmes, focused on services research, practice-based clinical research and prevention research.

Additionally, the Swiss strategy commits to ensuring research informs practice, supporting the trend of approaches to the treatment, care and nursing of people with dementia being scientifically evaluated to ensure quality of care, transferring research findings into practice through the establishment of a dialogue between researchers and professionals.

The Maltese strategy commits to establishing research initiatives in non-pharmacological interventions aimed at cognitive stimulation and behavioural management. In addition, it commits to carrying out research to assess the unmet needs of older adults with dementia, their families and carers, as well as creating a multidisciplinary group of experts in dementia to ensure practice is informed by an evolving evidence base.

The Spanish neurodegenerative strategy included an extensive list of research priorities including, among other themes, prevention, disease management, clinical practice, interventions, disease pathology, diagnosis and epidemiology. Specifically, the strategy identifies the need to involve scientific and professional societies related to neurodegenerative diseases in the planning and evaluation of services, as well as, committing to promoting interdisciplinary research lines.

The French neurodegenerative strategy also includes a focus on research into the prevention of conditions (both in preventing their appearance and slowing their progression). It also proposes strengthening the cohorts dedicated to neurodegenerative conditions, coordination of research priorities to identify new biomarkers of neurodegenerative conditions and understanding them using system models to identify therapeutic targets and initiate clinical trials.

Opportunities for research participation

Some strategies included elements on how to encourage more people with dementia and carers to take part in research related to dementia.

The Welsh and Maltese strategies commit to creating more opportunities for people with and affected by dementia to participate, be involved and engage with research activity. The Israeli strategy makes a similar commitment, whilst also acknowledging the need to include minority groups and other sub-groups in dementia research.

The English strategy highlighted a specific online platform (Join Dementia Research) for connecting researchers with people who were interested in participating in dementia research. Specifically, it aims to have 25% of people diagnosed with dementia registered, with 10% participating in research. Additionally, national research programmes will be encouraged to have stronger elements of patient and/or public involvement.

Research infrastructure/resources

Of the strategies which contained references to dementia research, a key priority for the majority was the need to ensure that sufficient infrastructure and resource is in place to allow for high quality research to take place. This covered a number of areas including, among others, the number of researchers available to carry out research, the dedicated funding available for research or the physical infrastructure to allow research to take place.

The Flanders strategy committed to addressing the imbalance between global academic performance norms and practical relevance as it was noted that this had the potential to diminish the impact of dementia care.

The Cypriot strategy identified that there was little funded research taking place across all disciplines, noting that some was taking place as a result of collaboration between the national Alzheimer’s association and, private and state universities. However, the strategy identifies the need for dedicated resources from the state to allow and encourage research to take place. Similarly, the Greek strategy highlights the need to build research capacity within the country, with proposed annual or bi-annual research programmes established; the strategy identifies that national and supranational funding sources will be required to achieve this.

The Israeli strategy also identified the need for specific research funding and committed to providing funds for research on issues related to dementia from the funds designated for research within its health insurance legislation. The Norwegian strategy also committed to including funding for care research and building care research infrastructure as part of its services research programme.

The Northern Irish strategy sets out actions for improving dementia research within the country, including a commitment to national support from the health and social care research organisation for the clinical research network, as well as supporting researchers in preparing submissions to the US National Institutes of Health or to funding bodies. On the latter point, the Czech strategy similarly commits to support researchers and targeting bids for funding.

The Scottish strategy also commits to supporting clinical and non-clinical research in Scotland, including supporting linkages to the UK-wide research institute, linking policy and research and providing support to national dementia research networks.

The English strategy contains a commitment to double funding for dementia by 2025, with increased investment in dementia research from pharmaceutical, biotech devices and diagnostics sectors. In addition, government research bodies will support initiatives aimed at building inter-disciplinary/professional work in health and care research for dementia.

The Slovenian strategy focuses on building the capacity of dementia research within the country across areas of basic science, health economics and clinical practice. As part of this, it commits to establishing national multidisciplinary networks of experts on dementia, regional centres for spreading good practice and national banks for brain tissue and cerebrospinal fluid. Similarly, the Spanish neurodegenerative strategy identifies the need to boost the activity of bio-banks by encouraging brain tissue donation and biological samples by people with neurodegenerative diseases.

On a related theme of establishing research infrastructure, the Danish strategy commits to making its national knowledge centre for dementia permanent, allowing for work on e-learning courses, future research and knowledge sharing to continue. It additionally identifies the need for better data in the field of dementia with funding allocated to further develop the Danish Clinical Quality Database for Dementia to construct a cross-sectorial quality data base, including municipal data. The Finnish strategy commits to examining the potential for establishing a national network of centres of expertise, in addition to working with funding bodies to ensure basic research into dementia continues.

The primary focus of the Dutch strategy is on different components of dementia research within the country, including the development and implementation of interventions and care models. Its specific “Memorabel” research programme involves health, voluntary and academic partners, providing funding for research on four themes: cause and mechanism of the disease; diagnosis; treatment and prevention; and efficient care and support. Alzheimer Nederland also supports basic research through an innovative research programme which is also part of the Dutch dementia strategy.

International/European-level research

Some of the strategies looked beyond their respective domestic contexts to identify work ongoing at an EU or international level.

This is apparent in the English strategy, which contains a number of commitments, including to establish an international dementia institute in England. Additionally, the strategy commits to the expansion of the global dementia research agenda, filling research gaps identified by the World Health Organization (WHO) and the Organisation for Economic Co-operation and Development (OECD).

The English and Scottish strategies both make reference to the UK’s role in advancing care and support for people with dementia through Scotland’s leadership of the second EU Joint Action on Dementia (2016–2019). The Norwegian strategy notes its leadership of the quality of residential care work stream in the Joint Action. The Scottish strategy also highlights the Scottish Government’s role in working with the International Consortium for Health Outcomes Measurement (ICHOM) in developing global standards for measuring and reporting on outcomes for people with dementia.

The Maltese and Greek strategies both identify the need for each country to increase participation in EU and international projects related to dementia research.

The French neurodegenerative strategy included a focus on better national coordination of neurodegenerative research, the establishment and implementation of a research structure, identifying sites of international importance and facilitating cooperation (particularly in a European context).

The Greek strategy specifically identifies collaborations such as the Joint Programme on Neurodegenerative Diseases (JPND). Three other countries highlight the JPND programme within their strategies, with the Czech and Slovenian strategies highlighting it as examples of research collaboration in which they believe they should be involved, with the Dutch strategy highlighting that the “Memorabel” research programme was a part of this work.

Other

Some strategies contained other commitments around research infrastructure which either were not in common with other strategies or distinct from the main themes previously identified. As a result, these have been included below.

Both the English and Flanders strategies identified that subsidised research should be open access. Related to this, was the Austrian commitment to ensure that research findings were disseminated to policy and decision-makers, the public and people with dementia. Similarly, the French neurodegenerative strategy highlighted the need to communicate research with the general public.

The Welsh strategy was the only one to commit to encouraging research that uses public health approaches to consider the inequalities experienced by people with dementia.

The Danish strategy committed to a new national research strategy specifically for dementia, with specific funding allocated for this purpose.

The Greek strategy proposed using incentives in the form of prizes for clinical and basic research as a means of promoting interest in the field. Although not proposing incentives or rewards, the English strategy also identified the need to promote dementia research as a career opportunity among researchers.

 

 
 

Last Updated: Monday 29 April 2019

 

 
  • Acknowledgements

    This report received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of the Yearbook represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains
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