Basket | Login | Register

 
 
 
 

Special Symposia

Detailed programme, abstracts and poster presentations

SS1. "Music for the Memory"

The main objective of the research is to improve people's health and quality of life. One of the objectives of the ACE Foundation is the comprehensive approach to dementia research, in general, and Alzheimer's disease (MA) in particular. That is why we do research in aspects as diverse as molecular and cellular biology, diagnosis, pharmacological and non-pharmacological therapy, and everything related to ethical-legal aspects and social implications.

It is well known that psycho-stimulation programs with people suffering from AD and other dementias have proved to be beneficial. If we speak of cognitive parameters, more limited clinical benefit, as well as the pharmacological treatments we currently have. But it is not so in terms of quality of life and well-being. The Comprehensive Stimulation Program (PPI) and FACE-Estimul'Art Project aims to show how the beauty of art and music provide knowledge that can help them live more fully, when AD and other diseases affect our cognitive abilities. This initiative has a rigorous scientific background and scientific follow-up.

Following this model, "Music for Memory", supported by Festival Castell de Peralada, wants to establish a close collaboration between the Festival's artists and people with dementia.

The program that is going on this year, is based on the value of music as the driving force that integrates the two groups. It has been the famous Toast of La Traviata the chosen one to put it on the scene.

The educational program was divided into three phases:

1) Testing the toast for a month at the “Chorus FACE Day Care Unit”

2) Sing the toast with the Intermezzo Chorus of the Liceo in Barcelona, conducted by Jose Luis Basso

3) Responded to the survival of learning and its sensations from participants and their families.

Have we won with emotional memory? Did they feel full, excited and respected on their stage? And the heart? That meant for a heart of such high-level singing with people with Alzheimer's.

This special symposium is Sponsored by Foundacion ACE.

SS2. Alzheimer Café on hospital care and dementia

GERRARD Nicci, HOOGEVEEN Frans

Netherlands

In a special edition of an Alzheimer Cafe, the famous writer Nicci Gerrard is interviewed about her latest book ‘What Dementia Teaches Us about Love’. The book gained a lot of awareness in the media and the general public. After the interview attendants of this lunch symposium are invited to raise questions and discuss with each other. At the end, Nicci Gerrard will be asked to reflect on the discussion and give her thoughts on the future of dementia care.
 After her own father's death from dementia, Nicci Gerrard set out to explore the illness that now touches millions of us, yet which we still struggle to speak about. What does dementia mean, for those who live with it, and those who care for them? Her book is an attempt to understand. It is filled with stories, both moving and optimistic: from those living with dementia to those planning the end of life, from the scientists unlocking the mysteries of the brain to the therapists using art and music to enrich the lives of sufferers, from the campaigners battling for greater compassion in care to the families trying to make sense of dementia. It explores memory, language, identity, ageing and the notion of what it truly means to care. And it asks, how do we begin to value those who become old, invisible, forgotten? What do we owe them, and each other as humans? What, in the end, really matters?

This special symposium is organised by Alzheimer Nederland.

SS3. Clinical trials in Alzheimer’s disease

SS3.1. My experience of Alzheimer’s research as a research participant

INGLIS Brian

EPAD, Scotland, United Kingdom

The presentation is a short talk on my experiences (good and bad) directly related to the EPAD research study. What actually motivated me to get involved in Alzheimer’s research in the first place. An overview of what’s involved being an EPAD participant, and the role of the EPAD participants panel. I will also provide and share a summary of other unexpected yet significant personal benefits, opportunities and learnings that I would not have otherwise gained had I not become involved in Alzheimer’s research.

SS3.2. Taking stock – what can we learn from unsuccessful Alzheimer’s trials?

LOVESTONE Simon

Janssen-Cilag, Brussels, Belgium

Recent years have seen multiple trial failure with compounds developed for Alzheimer’s disease modification. What can we learn from this experience and what can we do to maximise our chances of success? Learning is never over and striving for success is a continuous process. But there are three points that will be emphasized in this presentation. First, develop better drugs. A case will be made that the field is doing this both by increasing the types of therapy in development and focusing on good targets for intervention. Second, treat the right people. It was a shock to discover that many people in clinical trials seemed not to have the pathology that the trial-drug was made to counter. Great progress is being made in the development and use of biomarkers that are already transforming how we diagnose Alzheimer’s, even before the onset of dementia and this will very significantly improve prospects for clinical trials. Third, work together. The cost – in terms of money, time and human resources – of developing new drugs is phenomenal and trying to do this independently is a huge challenge even for the largest pharmaceutical companies. Working together, in public-private, precompetitive consortia such as the European Prevention of Alzheimer’s Disease and in data-sharing initiatives such as the European Medical Information Framework and others is one important way to accelerate the development of therapies for Alzheimer’s disease. We need such acceleration if we are to mirror the progress that has been made elsewhere in medicine.

SS3.3. Beyond amyloid – new avenues for Alzheimer’s research

SCHELTENS Philip

Netherlands

This special symposium is supported by a grant from Janssen.

SS4. EWGPWD: “Inspired by connections”

ROCHFORD-BRENNAN Helen1, POTOTSCHNIGG Angela2, ERIKSSON Stefan3, ROBERTS Chris4, GRŽINIČ Tomaž5, LAMPINEN Petri6, AGUIAR Idalina7, VAN LAER Geert8

Members of the EWGPWD, 1Ireland,2Austria, 3Sweden, 4United Kingdom, 5Slovenia, 6Finland, 7Portugal, 8Belgium

Members of the European Working of Group of People with Dementia will be giving a series of speeches and short video clips on the topic of connections. This will cover how people with dementia connect to their communities and the importance of these connections to maintaining a meaningful and full life and to carry on contributing towards society. They will also emphasise transport as a key facilitator in getting to places and staying connected but also that the “journey” itself is often important. These short speeches and clips will hopefully inspire people with and without dementia to find new ways to connect with each other.  There will be time at the end of the session to connect with the speakers and presenters, as well as their supporters. The presenters will be: Helen Rochford-Brennan, Angela Pototschnigg, Stefan Eriksson, Chris Roberts (for the speeches) and Tomaž Gržinič, Petri Lampinen, Idalina Aguiar and Geert van Laer (for the clips).

SS5. WYLD: Technological innovations in dementia diagnosis and care

LEIST Anja1, MC ARDLE Ríona2, NEWMAN Haza3, LANCASTER Claire4, DAWN FREIESLEBEN Silka5, HESS-WIKTOR Katarzyna6

1University of Luxembourg, Esch-sur-Alzette, Luxembourg, 2Newcastle University, Newcastle Upon Tyne, United Kingdom, 3Geras Solutions, Stockholm, Sweden, 4University of Oxford, Oxford, United Kingdom, 5Charité – Universitätsmedizin Berlin, Germany, 6Minnity, Stockholm, Sweden

Researchers and entrepreneurs present technological innovations in dementia diagnosis and care, particularly through the use of wearables, apps, and novel data analysis techniques. These innovations address complex challenges of differential dementia diagnosis and ensuring high-quality and safe home and formal care.

Ríona Mc Ardle: Wearable technologies and differential dementia diagnosis

We only observe a snapshot of individuals’ behaviours in clinic. With wearable technology, we can unobtrusively monitor behaviour in the real world. Ríona will present clinical applications of wearable technology for differential diagnosis of dementia subtypes.

Haza Newman: A medical device for diagnosis and post-diagnostic support

Geras Solutions is an AI-based medical device that objectively measures cognition via thousands of digital data points, and simplifies post-diagnostic support for patients and professionals. Following FINGER recommendations, the device enables patients to engage in lifestyle changes for risk reduction.

Claire Lancaster: Understanding healthy cognition to detect early signs of dementia

GameChanger is a research project that analyses touch, movement, and voice data to understand cognition in healthy volunteers in order to detect early signs of dementia.

Silka Dawn Freiesleben: Testing end-users’ experience of GPS devices for people with dementia

There is a lack of research and quality standards on design of and user guidelines for GPS devices in home dementia care. This makes it difficult for end-users to select and clinicians to recommend GPS technology. Silka presents on user experience of people with dementia and their caregivers, including evaluations of clinical effectiveness.

Katarzyna Hess-Wiktor: Facilitating learning and person-centered professional dementia home care

Formal caregivers of people living with dementia often lack knowledge and skills to follow the person-centered approach to care. By using the Minnity app, professionals will understand better the people they provide care for, and be able to acquire relevant skills to ensure high-quality home care.

This special symposium is organised by World Yound Leaders on Dementia (WYLD)

SS6. Deltaplan Dementie: National strategy in the Netherlands DeltaPlan

SCHELTENS Philip1, DE VISSER Marianne2, BEKKENKAMP Dinant3, KWINT Karlijn4

1Deltaplan Dementie, Amersfoort, Netherlands, 2ZonMW Program Committee, The Hague, Netherlands, 3Alzheimer Nederland, Amersfoort, Netherlands, 4Vilans, Utrecht, Netherlands

In this session you will learn about the Dutch dementia strategy, called the ‘Deltaplan Dementie’. The Deltaplan Dementie was installed in 2012 to address and manage the growing problem of dementia in the Netherlands. This second national strategy was launched by the ministry of Health, Welfare and Sports and will last until 2020. It relies on three main pillars, focussing on respectively scientific research (from basic research into prevention and finding a cure for dementia to research with a focus on treatment, support and quality of life), improving care and creating a dementia friendly society. The total amount of budget of the plan is approximately € 90 million, coming both from the government and private organisations. The Deltaplan Dementie is also a cooperative network with member organisations in the field of science, education, healthcare institutions, patient organisation, healthcare insurance and business. All speakers are closely involved in the implementation and give you an insight into the design, implementation, results and impact of the Deltaplan Dementie.

This special symposium is organised by Deltaplan Dementie and Alzheimer Nederland.

SS7. Joint Action on Dementia

HUGGINS Geoff1, NUTTAL David2, KROLAK-SALMON Pierre3, VANACORE Nicola4, KIRKEVOLD Oyvind5, ESTRADA SABADELL Maria-Dolores6, ESPALLARGUES Mireia 6, SERRA-SUTTON Vicky6, BARCLAY Gillian7

1NHS Education Scotland, Edinburgh, United Kingdom, 2Department of Health and Social Care, UK Government, London, United Kingdom, 3Institut du Vieillissement, Lyon, France, 4National Institute of Health, Rome, Italy, 5Aldring og helse, Oslo, Norway, 6Avaluació Sanitàries de Catalunya (AQuAS), Barcelona, Spain, 7Scottish Government, Edinburgh, United Kingdom

Act on Dementia is an EU Joint Action to promote collaboration among EU Member States to improve the lives of people living with dementia and their carers.

Act on Dementia provides practical guidance on developing and implementing national dementia plans, policies and strategies, with practical examples of good dementia diagnosis, care and support.

Priorities:

  • Improving dementia diagnosis rates and post-diagnostic support using collaborations and agreements with international experts, and detailed analysis of current scientific literature and pilot projects.

Addressing delays in detection and diagnosis in ambulatory care settings - GP training around dementia and enhanced competence; primary care collaboratives, involving nurse interventions, were established; detection and diagnosis among nursing-home residents were enhanced through teleconsultations and specialist interventions.

  • Improving crisis response services and care coordination by developing good practice recommendations based on literature reviews and guidelines on dementia care using a standardised tool.

Pilot programmes in care settings in Bulgaria, France, Scotland, Italy and the Netherlands, included education packages for professionals, support for GPs through connections to dementia specialists and coordinators, and support for informal carers.

  • Addressing behavioural and psychological symptoms (BPSD) in residential care settings, promoting biopsychosocial model and person-centred care.

Pilot projects in Bulgaria, Greece and Romania adapted and developed models then tested their feasibility and usefulness in residential care homes. In the Netherlands and Norway, wider implementation of existing models was used to address BPSD, with evaluation of an e-learning programme on palliative care in nursing homes in Norway.

  • Collating evidence-based information and recommendations on promoting, nurturing and sustaining dementia-friendly communities (DFC) through adopting system-wide approaches, sustaining good practice and promoting benefits for communities.

DFC piloted in Bulgaria, Greece and Italy is based on people, places, networks and resources, with people living with dementia being central. The sites represent a mix of population size, urban/rural settings, and cultures.

This special symposium is organised by Joint Action on Dementia

SS8. SMART4MD: Tablet application for people with mild dementia and their carers, pre-liminary 12-month results of its´ clinical trial and potential commercial usage

SS8.1. Support, Monitoring and Reminder Technology for Mild Dementia (SMART4MD) platform: Tablet application developed specifically for people with MCI and dementia and their informal carers

ŠTEFAN Michal

DEX Innovation Centre, Liberec, Czech Republic

Background: SMART4MD is an EU-wide research project involving 11 international partners, focusing primarily on improving quality of life of people with mild cognitive impairment (MCI) or mild dementia and their carers. The project developed the eponymous (SMART4MD) digital platform including an application which was specifically designed for people with MCI or mild dementia, their informal carers, and healthcare professionals. The SMART4MD app, pre-installed at 7inch tablets, is available in 5 different languages, and includes features to increase treatment compliance, reduce missed health appointments, reduce functional decline, reduce hospital re-admissions and increase efficiency savings.

Method: The development proces of SMART4MD platform included focus groups and interviews done with 62 people with MCI and dementia, 57 informal carers and 39 healthcare professionals across 5 countries of Europe – UK, Sweden, Spain, Belgium and the Czech Republic. Feasibility study has been carried out with the prototype of the platform in Sweden and Spain with 20 persons before it has been finalized for the main clinical study.

Results: SMART4MD application has been developed with 7 core functionalities:  My reminders (for medicines, appointments and general tasks), My health (with multiple symptoms tracking), People I know, Games & Resources (with cognitive games and interesting news), About Dementia, personalize my app (with options to increase size of text, volume, disable functionalities, change colours etc.) and Share with others (e.g. carers and healthcare professionals). The application itself is highly customizable based on the conditions and preferences of each users and is developed to be used by both people with MCI or dementia, their personal carers, and also by their healthcare professionals.

SS8.2. Preliminary 12-month results of a large scale pilot randomized controlled clinical trial of the SMART4MD platform

ANDERBERG Peter2, BARNESTEIN-FONSECA Pilar 3, GUZMAN-PARRA Jose3, GAROLERA Maite4, QUINTANA María4, MAYORAL-CLERIES Fermin3, GARCÍA-BETANCES Rebeca5, LEMMENS Evi6, SANMARTIN BERGLUND Johan2

2Department of Health, Blekinge Institute of Technology, Karlskrona, Sweden, 3Research Unit, La Unidad de Gestión Clínica de Mental Health, Instituto de Investigación Biomédica de Málaga, Hospital Regional Universitario Málaga, Malaga, Spain, 4Brain, Cognition and Behavior - Clinical Research, Consorci Sanitari de Terrassa, Barcelona, Spain, 5Life Supporting Technologies (LifeSTech), ETSI Telecomunicaciones, Universidad Politécnica de Madrid, Madrid, Spain, 6University Colleges Leuven-Limburg, Research Expertise Centre Health Innovation, Genk, Belgium

Background: SMART4MD platform and its objectives are currently being tested through a large scale randomized controlled clinical trial with more than 1000 dyads including both people with MCI or dementia and their informal carers. As the SMART4MD clinical study comes nearly to the end, the aim of this session is to present and discuss preliminary 12-month results of the study with the potential to prove the research hypotheses, i.e. the SMART4MD platform being able to improve QoL-AD by 1.28, increase adherence to medication by 10%, reduce functional decline by 10%, increase adherence to appointments and decrease informal carers‘ burden.

Method: SMART4MD platform is based on a preexisting global health management platform and was re-engineered to be used daily at home by people living with MCI or dementia. A feasibility study was done and the 18-month trial of the SMART4MD platform is currently running to test several research hypotheses providing basis for further exploitation of the SMART4MD platform in EU territories. More than 1000 dyads (people with MCI or dementia and their carer) were recruited to either the intervention group (with the platform) or control group (receiving usual care). Regular 6-month visits at health centres are providing data on quality of life (by using QoL-AD), cognitive function (MMSE), functional decline (EQ-5D), medication (dose and pill counts) and appointments adherence combined with data gathered from the application on user behaviour.

Results: Currently, 6-month data from more than 1000 researched people with MCI or mild dementia with an average age of 74 years, their starting average MMSE score of 25,5 points and GDS-15 at 3 points, shows a slight increase of MMSE score among the intervention group as compared to control group and average MMSE year-to-year decrease. It also pinpoints the most frequently used functions of the SMART4MD application being MyReminders, MyHealth and Games&Resources.

SS8.3. Workshop on value definition for commercial use of the SMART4MD platform for healthcare professionals, healthcare providers, people with MCI and mild dementia and their carers, technology companies and researchers

STEFAN Michal1 , AHMED Ifty2

1DEX Innovation Centre, Liberec, Czech Republic, 7Healthbit, Londong, United KIngdom

Background: There exist multiple scenarios of how the SMART4MD platform could be commercially used in EU countries after the end of the clinical trial, depending on its´ benefits and values to different target groups – including people with MCI and dementia, their carers, healthcare professionals, healthcare providers and other groups – including researchers, technology companies and public authorities. The aim of this workshop session is to discuss different value propositions that SMART4MD platform could offer to selected relevant target groups.

Method: Participants of the workshop session will be divided into several discussion groups based on their profile fit to selected target groups for SMART4MD, including healthcare professionals, healthcare providers, carers, technology companies, researchers, and other, depending on the composition of the participants´ group. 2 key challenging questions will be selected for all discussion groups: i) what are the top values/benefits you see of using SMART4MD platform for your group and why, and ii) what are the key challenges/barriers for a possible adoption of SMART4MD by your group? Inputs from different groups will be summarised among all participants.

This special symposium is sponsored by SMART4MD.

SS9. Innovations in dementia care in the Netherlands

MIESEN Bere1, WILLEMSE Bernadette2, DE BRUIN Simone3, DANEN Saskia4, DRAAISMA Willem4

1The Hague, Netherlands, 2Reigershoeve, Heemskerk, Netherlands, 3RIVM, Bilthoven, Netherlands, 4Participe, Amstelveen, Netherlands

The Netherlands is well known for its innovation strength in health care. With the field of dementia, the concept of the Alzheimer Cafe and its rapid development both in the Netherlands as in other countries serves as a good example of these kind of innovations. In this session we will start of with presentation on the Alzheimer Cafe on its origins and evolution by Bere Miesen, the founding father of the Alzheimer Cafe. In addition, we want to share new developments in small scale housing and care farms as an alternative to regular day care and nursing home facilities. Small scale housing is nowadays the state of the art in nursing home care. Care farms are more recently come into practice and there are some promising initiatives which serve as good examples for other, both in the Netherlands but also internationally. Because innovation can also mean ‘expanding on ideas from other countries’ we will show how the Danish concept of a Odensehouse is picked up in the Netherlands and developed into a new facility in the dementia field.

This special symposium is organised by Alzheimer Nederland

SS10. Data sharing in dementia research

SS10.1. Clinical data sharing landscape in dementia research: Benefits and experiences of data sharing and future perspectives

VISSER Pieter Jelle

Maastricht University, Amsterdam UMC, Netherlands

Alzheimer’s disease is the most common form of dementia. There is yet no treatment available and many clinical studies investigate the underlying pathophysiology, prognosis, and diagnosis of AD. In order to speed up research it is essential to have access to large datasets of research participants and patients. In the past few years a number of initiatives have started to facilitate data sharing. hese include the Dementia Platform UK (DPUK), ROADMAP, the Medical Information Framework of the Human Brain project, EMIF-AD, the Amyloid Biomarker Study Group, and the Netherlands Consortium of Dementia cohorts. The presentation will give an overview of how these initiatives provide access to existing data. In addition, a few examples will be given of how data sharing has advanced our understanding of Alzheimer’s disease.

SS10.2. Legal frameworks underpinning data sharing: impact of the GDPR on health research

MAYRHOFER Michaela

BBMRI-ERIC, Austria

This talk aims to shed some light on the impact of the GDPR on health research. Often forgotten, the objective of the GDPR is to strike a balance between both the protection of personal data of individuals and the free movement of personal data (Art.1). Thus, the complexity and comprehensive reach across sectors make the GDPR a hard nut to crack in practice. Although the GDPR overall creates fewer variations in interpretation between Member States, national derogations for example from data subject rights are allowed especially in relation to processing for scientific/historical research or statistical purposes (Art.89.2).  

In the research sector, the GDPR applies to any type of scientific research that uses personal data, such as studies in (bio)medicine, the social sciences, as well as the arts or the humanities. It affects EU researchers who need to be able to collect, process, and re-process personal data and to collaborate globally. It affects European citizens whose data is used in international research projects as well as non-EU citizens whose data has been collected in Europe. It imposes obligations and responsibilities on researchers to provide research participants with detailed information on what will happen to their personal data that is collected. It also requires the organisations, which are legally responsible for compliance, to ensure that the data are properly protected, minimised, and ultimately destroyed when no longer needed. Most obligations have already been in place prior to the GDPR but gained a new sense of urgency due to the general awareness raised by various data scandals and practices (e.g., Cambridge Analytica) but perhaps more so by the threat of extensive fines (Art.83). This makes data sharing practice embedded between research integrity and the protection of privacy of research participants, situated in a clinical, health care or health research context.

SS10.3. The views of patients and the general public on data sharing – The DataSavesLives campaign and the European Patients’ Forum

BEDLINGTON Nicola

European Patients’ Forum, Brussels, Belgium

The European Patients’ Forum is an umbrella organisation bringing together European Disease Specific Organisations and National Patient Coalitions. Alzheimer Europe is a founding member. Digital health and health data have become prominent topics for the EPF over the last few years. This presentation will explore the work we have undertaken with our members on this topic, enabling us to understand the general views of patients on data sharing.

It will also introduce a new initiative called ‘Data Saves Lives’, a multi-stakeholder platform hosted by EPF which aims to provide neutral, quality, state of the art information about health data in an accessible format on a web portal, and also create a health data community to provide a useful space for discussions on how hard and soft policy on health data impact on patients’ lives.

The presentation will also provide a snapshot of the various projects in which EPF is engaged on digital health and health data, all of which aim to ensure a strong patients voice in driving change for the benefit of patients. This special symposium is supported by a grant from Gates Ventures.

This special symposium is supported by a grant from Gates Ventures.

SS11. Roche: “Tip of the Iceberg: A Panel Discussion on Confronting the Hidden Costs of Alzheimer’s Disease"

ATRI Alireza1, WILEY Ryan2, MARTENSSON Birgitta3, TRABER Martin4, POT Anne-Margriet5

1Banner Sun Health Research Institute, Sun City, USA, 2 Shift Health, Toronto, Canada, 3ADI, Switzerland, 4F. Hoffmann-La Roche, Switzerland, 5 Ministry of Health, Netherlands

A diverse panel of experts will explore the implications of the review article “Tip of the Iceberg: Assessing the Global Socioeconomic Costs of Alzheimer’s Disease and Related Dementias and Strategic Implications for Stakeholders” (Journal of Alzheimer's Disease, vol. 70, no. 2, pp. 323-341, 2019).

A central theme in this review is that it is challenging to gauge the true value of ADRD-related interventions given the long-term, progressive nature of the disease; its broad socioeconomic impact beyond the formal healthcare system; and the complexities in accurately calculating the full costs to society. The study further highlights that a potentially massive component of the total cost of ADRD is ‘hidden’ from current cost estimates—including those related to caregiver burden and the long pre-diagnosis stage of the disease. There is an urgent need for all stakeholders to define approaches to measure these costs more accurately including by: 

  • Leveraging new technologies to more accurately measure the time and burden of caregiving-related activities.
  • Promoting better coordination and data sharing across sectors to gain a deeper understanding of who is shouldering the burden at every stage of the disease.   
  • Developing more accurate cost-of-illness frameworks to support rational resource allocations and investment decisions
  • Preparing guidelines for the use of fluid-based biomarkers and neuroimaging markers that could be employed in the use of potential future disease-modifying therapies.
  • Exploring innovative approaches to assessing the costs and benefits of diagnostics and disease-modifying therapies.

Lead author Dr. Ali Atri will present a summary of key findings from the article and then participate in a moderated panel discussion alongside experts from patient groups, government and industry to explore perspectives on the impact of potential solutions to improving our understanding and management of ADRD burden. The session will conclude by engaging the audience around prioritizing core recommendations for the near term.

 

 
 

Last Updated: Friday 25 October 2019

 

 
  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

Options