The 29th Alzheimer Europe Conference, “Making valuable connections” was held in The Hague in October. A record 954 participants travelled to the conference from 46 countries.
Iva Holmerová, Chairperson of Alzheimer Europe, opened the conference, extending a special welcome to the 36 people with dementia who were among the delegates, as well as their supporters. She noted that public awareness of dementia has increased in recent years, and that the number of national dementia strategies is growing across Europe, as is the number of dementia-friendly initiatives in many countries. She was also pleased to share that policy-makers have begun to acknowledge that, due to the complex nature of dementia, better coordinated research is needed, coupled with increased funding. All of this needs to happen in the modern, fast-paced and sometimes confusing context in which we all live. As a final point, she highlighted the importance of better awareness of dementia, not only for the sake of people with dementia and their relatives, but for the sake of society as a whole, which must find ways to overcome hurdles and to fill the gaps in its understanding.
Myrra Vernooij-Dassen spoke on behalf of INTERDEM (Early detection and timely INTERvention in DEMentia). She emphasised the importance of taking responsibility to move the field forward, mentioning three ways in which this could be done: Firstly, more individualised interventions need to be developed, based on a better understanding of both the variety of ways in which people may be affected by dementia and of the mechanisms of change underlying effective interventions. These interventions include cognitive, functional and social interventions and can use adapted new technologies. Secondly, models of co-production in dementia research and in implementation of research findings could also be developed. Finally, the next generation of dementia care researchers could be stimulated, educated and mentored.
Helen Rochford-Brennan addressed delegates from her perspective as a person living with dementia. She highlighted the value of the voice of people living with dementia, in particular drawing attention to the benefits of patient and public involvement (PPI). She also stressed that more communication and knowledge-sharing in the research community is vital, to avoid “reinventing the wheel”. Researchers need to branch out beyond their current pool of contacts, to move things forward, she said.
We know Europe is becoming more diverse, but researchers need to seek out those new voices and not take the easy option by asking the same people over and over again.
The second day of the conference focused on diagnosis, post-diagnostic support, technology and e-health.
Gerjoke Wilmink (Netherlands), led the first plenary session with a presentation on “Improving the diagnosis, post-diagnostic support, care and inclusion of people with dementia: the findings of the 2nd European Joint Action on Dementia”, given by Geoff Huggins, the Director of the NES Digital Service. The findings of the Joint Action that he shared, were: There is already knowledge in place about how to offer good quality care for people living with dementia, so the challenge for health care systems is not about knowing what to do, but rather it is about implementation and change; The Joint Action demonstrates that implementing the same or a similar evidence base in different environments will get different outcomes; Properly involving people living with dementia and their families is always of value and leads to outcomes more in line with their wishes; and finally, local leadership really matters. The EU Joint Action “Act on Dementia” began in March 2016 and ends this year. Its main aim is to promote collaborative actions among Member States to improve the lives of people with dementia and their carers.
Wiesje van der Flier, head of clinical research at the Alzheimer Center Amsterdam at Amsterdam UMC, presented a session entitled, “Research leading to better diagnosis and care in memory clinics – findings from the ABIDE project”. The Alzheimer’s Biomarkers In Daily practicE (ABIDE) project found that, while advances in early and accurate diagnosis of Alzheimer’s disease are among the largest research successes in the field, they also come with new challenges – for example, the advance of diagnostic tests means there are more choices to be made. Wiesje van der Flier shared that an audiotape study, completed by the ABIDE researchers, revealed that shared decision-making in the context of dementia diagnosis is not yet common practice. In response to this, the project has developed a simple list of topics to discuss during the diagnostic process and a “conversation-starter” for the diagnostic encounter, both of which aim to empower patients and carers, and to promote shared decision-making. Finally, she said that, through the use of “big data”, the project developed statistical models that can be used to enhance interpretation of diagnostic test results (e.g. MRI, CSF biomarkers). This will support clinicians to provide personalised diagnostic care and to explain what results mean to patients and carers. The project developed an online tool, “ADappt”, to help facilitate the use of these models.
“After the diagnosis… what next? Postdiagnostic support for people with dementia and their families” was delivered by Henry Brodaty, Professor of Ageing and Mental Health, at the University of New South Wales (UNSW Sydney). He drew delegates’ attention to the fact that, despite multiple guidelines about making a diagnosis being available worldwide, guidance for the diagnostic process and post-diagnostic care and communication is sadly lacking. People diagnosed with dementia and their families and carers frequently voice dissatisfaction with the lack of communication, guidance, referral, information about management and prognosis, as well as the lack of support for living well with dementia. He introduced the COGNISANCE project, which aims to fill this gap by co-designing with people living with dementia, families and health care practitioners, and looking to implement and evaluate a package to improve post-diagnostic care. The project, which covers five countries (Australia, UK, Netherlands, Poland and Canada), is funded by the EU Joint Programme – Neurodegenerative Disease Research (JPND) and funded within each participating country. The aim, once the project is completed, is to make a successful package available for local adaptation worldwide.
Charles Scerri (Malta) chaired the plenary session on “Technology and e-health”. Wijnand IJsselsteijn, Professor of Cognition and Affect in Human-Technology Interaction at Eindhoven University of Technology, opened the session, looking at “Warm technology and co-design with people with dementia”. He emphasised that, while some of us, as we age, will experience cognitive decline and/or dementia, this does not define who we are.
As we are focusing our scholarly and design efforts to improve the lives of people living with dementia, we are acutely aware that ageing does not equate to deterioration.
It may, however, be a part of it, he conceded. The best technology design efforts should, therefore, not focus solely on the support, substitution or amelioration of functional decline, but on better ways of affirming old age. With this in mind, there is a need to reimagine the roles of technology in old age, and to challenge the dominant but problematic rhetoric of technology as a solution for an ageing population. He highlighted the concept of “warm technology” – a framing of technology that intentionally challenges the prevalent connotation of technology as rational and efficient, yet impersonal, complicated and disconnected from an individual’s lived experience – and looked at its possible applications in dementia care.
Dag Aarsland, Head of Department of Old Age Psychiatry at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London presented a talk, “What role for ‘wearables’ in the detection of people at risk of dementia and in monitoring disease progression?”. He began by stating that measures of functional impairment in Alzheimer’s disease (AD) are made less accurate, or at least more difficult to achieve, by the fact that they rely on direct clinical observation or on caregiver recall. This is especially relevant because the presence of functional impairment is required for a diagnosis of AD, yet studies of activities of daily living have found functional impairment occurs during pre-clinical AD. Measuring cognition, behaviour and other clinically relevant domains in people diagnosed with AD in their everyday environments through the use of Remote Measurement Technologies, provides the opportunity to capture detailed data over numerous time points, which is a distinct improvement on the current means of assessment, he said. He then introduced the RADAR-AD project (Remote Assessment of Disease And Relapse – Alzheimer’s Disease). “RADAR-AD’s tailored combination of devices and smartphone applications will act as a powerful new tool in personalised medicine by offering the right treatments to the right patients for maximum effectiveness and minimum waste”, he concluded.
Marco Blom, Scientific Director and Head of National Services at Alzheimer Nederland presented on “Identifying the needs and views of carers of people with dementia: the online platform of Alzheimer Nederland”. With the help of many family carers, and with the driving principle of delivering relevant information and functionalities for carers, Alzheimer Nederland has been able to develop a highly successful online platform. Emma Ferguson-Coleman, a Deaf research associate within the Social Research with Deaf People (SORD) group at the University of Manchester, closed the session, giving some insight into “Navigating everyday challenges of life-story work with Deaf sign language users with dementia”. She drew attention to the fact that “Deaf British Sign Language (BSL) users consistently experience unequal access to health and social care provision, because their language and communication needs are inadequately met and their cultural identity is not recognised by the mainstream.
On day three of the conference, a plenary session on “Making our societies more dementia-inclusive” was chaired by Jim Pearson (Scotland, UK) and opened with a presentation by Bernd Heise, a member of the European Working Group of People with Dementia (EWGPWD), who shared his expectations from dementia-inclusive communities, with the audience. A dementia- friendly community, he said, may be built from several single initiatives, if they can work together towards a common goal. “Such communities are founded on the consensus of all responsible persons and on greater persistence”, he stressed. He also emphasised that a truly “dementia-friendly” community requires the full inclusion of people with dementia (hence the term “dementia-inclusive”) and must promote their existing skills and interests. “How can research lead to better prevention?” – the final plenary – chaired by Marco Blom (Netherlands) began with a presentation on “Multidomain lifestyle interventions to prevent cognitive impairment and dementia: From FINGER to World-Wide FINGERS,” given by Tiia Ngandu, Research Manager and leader of the Dementia Prevention group at the Finnish Institute for Health and Welfare in Helsinki. She emphasised the importance of finding effective preventive interventions for dementia and Alzheimer’s disease (AD), given the growing number of cases, worldwide. The multifactorial etiology of dementia and late-onset AD mean that multi-domain interventions targeting several lifestyle-related and vascular risk factors are most likely to be effective, she said. “FINGER” is a pioneering trial providing the first evidence that a multi-domain lifestyle intervention may prevent cognitive impairment. The implementation of the FINGER model in a public health context is ongoing and the FINGER model is being adapted and tested in new trials around the world, within the framework of “Word- Wide FINGERS” network.
Meike Vernooij, Professor of Population Imaging at the Erasmus University Medical Center, discussed “The role of imaging in epidemiological studies: findings of the Rotterdam Scan Study.” She stated that the use of non-invasive imaging in population studies can help unravel preclinical brain changes in asymptomatic people, and as such can improve our understanding of the aetiology of Alzheimer’s disease, as well as improving risk stratification and prediction of the disease. Besides informing researchers about (preclinical) disease, this so-called “population imaging” can also help us to better understand the (normal) brain ageing process, she asserted. This has value in clinical practice in the context of assessing whether an individual has brain tissue loss that is normal for their age. New advanced image processing methods that apply artificial intelligence techniques “may lead to detection of new biomarkers that may further improve risk prediction,” she said.
Sebastian Köhler, Associate Professor at the School for Mental Health and Neuroscience at Maastricht University and Senior Researcher at the Alzheimer Centrum Limburg at Maastricht UMC+ ended the session, stressing the importance of immediate action, where dementia prevention is concerned. “Our own research shows that most people think dementia is inevitable. We need to inform the public better about what can be done to reduce the risk and create awareness,” he urged. There is consistent evidence that several lifestyle factors improve brain health later in life, he said, and that, while there is currently no sure way of predicting who will or will not develop dementia and that a healthy lifestyle is not a guarantee, it does lower the risk.
Clinical trials in Alzheimer’s disease This Special Symposium, which was sponsored by a grant from Janssen, focused on the past, present and future of clinical trials in Alzheimer’s disease. To complement the Special Symposium, conference bags included a copy of the Clinical Trials Supplement, accompanying the October 2019 edition of our Dementia in Europe magazine. The Symposium was chaired by our Executive Director, Jean Georges.
Brian Inglis, a Scottish participant in the EPAD (European Prevention of Alzheimer’s Disease) longitudinal cohort study, opened the Special Symposium by speaking about his experiences of this clinical study. He spoke about what motivated him to participate in Alzheimer’s disease research, giving an overview of what is involved in being an EPAD participant. He then highlighted some of the personal benefits, opportunities and learnings that he gained from participating in EPAD. The next speaker, Simon Lovestone, Professor of Translational Neuroscience at the University of Oxford, is one of the academic partners of the EPAD consortium. In his presentation, he took stock of what we have learned from unsuccessful clinical trials for Alzheimer’s disease. He emphasised three important points: firstly, we have learned that better drugs need to be developed, by diversifying the types of therapy under development and by focusing on improved targets for intervention. Secondly, we have learned that it is important to treat the right people: in the past, trials have recruited participants who are not affected by the pathology that the drug aims to treat. Clinical trials should therefore capitalise on recent advances in biomarker research, which will improve our ability to monitor the efficacy of treatment and accurately diagnose Alzheimer’s disease at much earlier stages of disease development. Thirdly, we have learned that collaboration is key: drug development is a hugely costly process but by working together in public-private consortia such as EPAD and EMIF (European Medical Information Framework) we can accelerate the development of new therapies for Alzheimer’s disease.
Philip Scheltens, Director of the Alzheimer Center Amsterdam at Amsterdam UMC, closed the Special Symposium with a talk on new avenues for Alzheimer’s research. He spoke about the failure of clinical trials investigating drugs such as crenezumab, solanezumab, verubecestat and lanabecestat, all of which target amyloid beta. He finished his presentation by highlighting some of the clinical investigations currently underway, identifying new targets for therapy and lifestyle interventions aimed at preventing or delaying the onset of Alzheimer’s disease dementia.
The achievements of the 2nd European Joint Action on dementia A Special Symposium was organised by the 2nd European Joint Action on dementia – “Act on Dementia”. The session began with an overview of the main priorities of the Joint Action, which include improving dementia diagnosis process and delivery; post-diagnostic support; addressing delays in detection and diagnosis in ambulatory care settings; improving crisis response services and care coordination; addressing behavioural and psychological symptoms in residential care settings; and collating evidence-based information and recommendations on promoting, nurturing and sustaining dementia-friendly communities.
The presenters highlighted some of the strategies used to address these priority areas, such as collaborating with international experts, training GPs, nurses and nursing home staff, and developing good practice recommendations and dementia care guidelines based on literature reviews. The Joint Action pilot programmes in care settings in Bulgaria, Romania, France, Scotland, Italy and the Netherlands include education packages for professionals, as well as support for GPs and informal carers. Details of pilot projects in Bulgaria, Greece and Romania were shared. These projects adapted and tested models to address the behavioural and psychological symptoms of dementia in residential care homes.
The next Alzheimer Europe Conference (#30AEC) “Building bridges” will take place in Bucharest, Romania from 20 to 22 October 2020.