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P25. Policies and strategies: Global and European collaborations on dementia

Detailed programme, abstracts and presentations

P25.1. Act on dementia -  An EU joint action to improve the lives of people living with dementia and their carers

BARCLAY Gillian1, MILLER Michelle2, TATLER Rona1

1Scottish Government, Edinburgh, United Kingdom, 2NHS Healthcare Improvement Scotland, Glasgow, United Kingdom,

In March 2016 the EU Joint Action – Act on Dementia, part-funded by the EU, and coordinated by the Scottish Government, commenced work to ‘promote coordinated actions in Member States to improve the lives of people living with dementia and their carers.’ 

Work package 4 has focused on bringing about improvements in dementia diagnosis rates and post diagnostic supports which can enhance quality of life and reduce preventable hospital and residential care admissions. 

Work package 5 – Crisis and Care Coordination – has considered the adoption of a case-management model of care to reduce unnecessary hospital or residential care home admissions, and improve effective use of medications, wellbeing of carers and integration of services.

At the last stages of dementia, many people will need 24-hour care and many may have to move to a nursing home or into residential care.  Work package 6 has focused on person-centred care, proper use of antipsychotics in treatment and best practice in end of life care for people with dementia.

Work package 7 has examined Dementia Friendly Communities (DFCs).  The core of this work is structured around a model which identifies four different aspects of DFCs: ‘People’, ‘Place’, ‘Networks’ and ‘Resources’, with the voices and experiences of people living with dementia at the centre of each.

Evidence reviews, and surveys have been undertaken, and work is now under way to test these models in pilot sites across Europe to provide cost-effective and practical examples of the core components of good dementia diagnosis, care and support to Governments, healthcare professionals and providers, third sector organisations, Patient/Family/Carers’ Associations etc. The presentation will provide an overview of the developments of the EU Joint Action, learning to date, and next steps to inform practice, followed by an opportunity for questions.

P25.2. Dementia doesn’t stop: Protecting people with dementia in humanitarian emergencies


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

Each year, an estimated 26 million older people are affected by natural disasters alone. During humanitarian emergencies (including natural disasters, conflicts and large-scale accidents) the international response all too frequently ignores those most vulnerable in our communities – people living with dementia.

During a humanitarian emergency, those with dementia can be hit hardest of all as the societal networks around them are suddenly cut loose. People living with dementia, an often ‘hidden’ vulnerability, can be overlooked in the desperation and speed of a humanitarian emergency response. Action is needed to ensure emergency response systems are designed to understand and protect people living with dementia. Humanitarian workers need to be aware of the symptoms of dementia and available screening and diagnostic tools, such as WHO’s mhGAP. Family separation; disruption of social networks; destruction of community structures, resources and trust are all by-products of typical emergencies. Psychological burdens and distress caused by emergencies are often increased for persons with dementia and their care supporters.

Humanitarian actors must take into account people living with dementia at every stage of the process, from disaster preparedness (including dementia awareness) to community rebuild and all interventions in-between. This session will present efforts to bring about awareness and change in humanitarian emergency response to protect and support people living with dementia. We will focus on the key issues that those affected by dementia face before, during and after humanitarian emergencies, and highlight the steps that international humanitarian actors can take to protect the rights and ensure access to healthcare for all those they serve.

P25.3. Global dementia action plan; national responses


Alzheimer's Disease International, London, United Kingdom

The adoption of the Global action plan on dementia at the World Health Assembly in May 2017 and the subsequent initiation of the Global Dementia Observatory (GDO) later that year ensured that dementia became an international priority. The Global action plan is ambitious in scale and scope, with 7 key action areas. Data has also started to be uploaded to the GDO through 21 pilot countries.  By Octtober 2018, 18 months on, what progress is being made?  This presentation will review progress, identfying what is working well and what are the barriers to progress. How are Member States, that have signed up to the plan, progressing; how many countries have developed national plans or are integrating key action plan indicators into deemtnia strategies, policies or frameworks; how many are in development; and critically, how many are funded?  At the time of submission there are 31 countries with identified plans or frameworks, against a target of 146 by 2025. The presentation will review progress in each area of the Global action plan, including dementia awareness and friendliness; risk reduction; diagnosis, treatment & care; support for carers; information systems; and research & innovation. Finally, the presentation will exlpore the data that is being uploaded to the GDO and consder how this is being monitored; how robust it is; and crucially what role civil society can play in encouraging and supportting data collation and analysing country data.

P25.4. General practitioners-Nurses cooperation improves early detection of neurocognitive disorders in primary care


1Clinical and Research Memory Centre of Toulouse, Gérontopôle, Toulouse University Hospital, Inserm UMR1027, Toulouse University III Paul Sabatier, Toulouse, France, 2Clinical and Research Memory Center of Lyon, Lyon Institute for Elderly, Hospices Civils de Lyon, Lyon University Hospital, Inserm UMR1028, CNRS UMR 5292, Lyon University, Lyon, France, 3National Center for Disease Prevention and Health Promotion, National Institute of Health, Rome, Italy, 4Clinic of Neurology, UH Alexandrovska, Medical University, Sofia, Bulgaria

Background - Clinicians do not readily diagnose neurocognitive disorders (NCD) during clinic visits suggesting insufficient detection practices. The reason for the inadequacy of detection may be associated with multiple factors such as time constraints during visits, unawareness of current assessment guidelines, insufficient knowledge of available assessment instruments and their administration by providers. At the same time, recent years have revealed an increased interest and use of advanced practice nurses. Models of best practices of supervision and collaboration have been promulgated by many organizations. Thereby, one possible solution to improve the early detection of NCD in clinical practice is to promote de collaboration between general practitioner (GP) and nurse.

Methods - In this context, the “Act on Dementia” European Joint Action worked to support several innovative actions in France (Toulouse and Lyon), Italy (Modena) and Bulgaria (Sofia). GPs were trained and we implemented, into primary care, nurses trained in detection of cognitive impairment.

Results - Almost 500 patients were assessed. Overall, the mean age was 81.3 (±5.92) years. More than half were female (66%), and 32% of participants lived alone. The average Mini-Mental State Examination score was 25.2 (±4.23); 16.7% had major NCD; 12% of minor NCD were identified. Based on this action, we were also able to highlight a number of barriers and facilitators in the implementation of this model into clinical practice.

Conclusion - The need to implement other strategies to detect NCD into everyday clinical practice is required. The involvement of all primary care health professionals is essential to provide early NCD recognition and management. This action showed the feasibility of the GP/nurse cooperation to detect earlier the cognitive impairment. This cooperation is extraordinarily positive and there is a need to develop more wide-ranging research to highlight the added value of these inter professional collaborations in clinical practice.

P25.5. Challenges of including patient-relevant outcomes in funding decisions for Alzheimer’s disease drugs, and consequences – A health technology assessment perspective


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

Which outcomes (and outcome measures) to include in health technology assessments (HTA) is a crucial issue especially when those findings are used to determine whether an intervention should be publicly funded. Particular challenges arise for interventions for Alzheimer’s disease (AD) due to the nature of the condition, which has long pre-clinical and prodromal stages, affects over time the person’s cognition, function and behaviour, and - if at a severe stage – their ability to assess their quality-of-life.

This research was carried as part of the Roadmap project (‘Real world Outcomes across the Alzheimer’s disease spectrum for better care: Multi-modal data Access Platform’), a large private public partnership in Europe. Our aim was to understand which outcomes (and measures) were likely to be prioritised during technology assessments for AD drugs. We gathered data for three countries (England, Germany and the Netherlands). Our data sources included: peer-reviewed studies; publicly available documents of HTA agencies; and interviews with representatives of HTA or regulatory agencies.

Our findings suggest that outcomes that can be measured with clinical scales (e.g. cognition) predominated reimbursement or price-setting decisions; this was despite their limited ability to capture what stakeholders considered patient-relevant changes in disease progression. This was partly due to process and method requirements of the HTA agencies. Carer-relevant outcomes did not influence decisions. Cost-utility modelling allowed some of the challenges to be addressed but raised other methodological issues. In conclusion, whilst there have not been any recent HTAs of new drugs in the AD field, our findings suggest that without important changes to current HTA processes there could be substantial challenges for governments to decide about the value of innovative, disease-modifying interventions for AD. We will discuss some of the implications of our findings.

P25.6. “Act on Dementia” - A new European educational training on neurocognitive disorders in primary care

CARTZ-PIVER Leslie1, KROLAK-SALMON Pierre2, MAILLET Audrey2, CALVET Benjamin3, COURATIER Philippe3, CLEMENT Jean Pierre3, RAYCHEVA Margarita4, REJDAK Konrad5

1Clinical and Research Memory Centre of Limousin, Limoges University Hospital, Limoges, France, 2Clinical and Research Memory Centre of Lyon, Lyon Institute for Elderly, Hospices Civils de Lyon, Lyon University Hospital, Inserm UMR1028, CNRS UMR 5292, Lyon University, Lyon, France, 3Clinical and Research Memory Centre of Limousin, Esquirol Hospital Center, Limoges, France, 4Clinic of Neurology, UH “Alexandrovska”, Medical University, Sofia, Bulgaria, 5Department of Neurology, Medical University of Lublin, Lublin, Poland

Background: Detection and diagnosis of Neurocognitive Disorders (NCDs) remain a challenge. However, NCDs are often diagnosed late or undiagnosed. Among the most powerful breaks is the lack of knowledge about the benefits of timely diagnosis and post-diagnosis care for concerned people. It is therefore crucial to offer GPs an educational program to empower them to diagnose and act on NCDs.

Methods: In the context of the“Act On Dementia” European Joint Action, four sites (Limoges and Lyon, France; Sofia, Bulgaria; and Lublin, Poland) elaborated an educational program aiming to improve knowledge and skills, and reduce stigma in primary care. This training has detailed several contents (classicalvs. “anti-stigma” package) and organizations (plenary sessionsvs. workshops), and is currently tested within the different sites.

Results: Five sessions have been already done (i.e., 2 in Limoges, 2 in Sofia, 1 in Lublin). Three additional sessions are scheduled in May, 2018 (i.e., 1 in Lyon, 1 in Limoges, 1 in Lublin). In total, approximately 350 GPs are exposed to this training. The objectives of the pre- and post-questionnaires analyses are twofold: (1) to explore the evolution of stereotypes and stigma (which are expected to decrease) and sense of competence (which is expected to increase) after training; and (2) to identify the most efficient format among all tested in order to develop this program in Europe.

Conclusion: The GPs are in the core of NCDs management process. Through the development and the sustainability of this European educational training, we hope to reinforce the positive attitudes and practices towards NCDs in GPs but also to harmonize them across Europe.



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