Luxembourg, 22 October 2020
The second day of the 30th Alzheimer Europe Conference (#30AEC) “Dementia in a changing world”, on 21 October 2020, focused on diagnosis and medical management and on building dementia–inclusive societies.
Diagnosis and medical management
The second plenary of the conference was on “Diagnosis and post-diagnostic support” and opened with a presentation on “Improving the diagnosis of neurocognitive disorders: implementing the recommendations of the 2ndEuropean Joint Action on Dementia”, given by Pierre Krolak-Salmon, President of the French Federation of Memory Centres. We are still facing an under-diagnosis of Alzheimer’s disease and dementia in the field of primary care in Europe, he stressed, noting that the Joint Action recommends new training programmes to help in the fight against the major diagnosis gaps present in primary care. He also shared that a new graduated and personalised diagnosis strategy had been adopted by the Joint Action, which can be adapted to any and all European countries. Finally, he said that advanced practice nurses could help to better detect neurocognitive disorders in primary care.
During the next presentation, on ethical issues linked to the disclosure of diagnosis, clinical neurologist Edo Richard, offered a different perspective, highlighting the impact of a diagnosis and the importance of considering that “timely” diagnosis may not always be synonymous with early diagnosis. The introduction of a biomarker-based diagnosis of Alzheimer’s disease blurs the boundary between health and disease, he said. Finally, he highlighted the widening gap between research and clinical practice around diagnosis of Alzheimer’s disease.
In the third presentation, Simon Lovestone, Vice-President, Disease Area Leader, Neurodegeneration, Janssen, looked at the pharmacological treatment of Alzheimer’s disease and at what we have learned in recent years. Developing therapies for Alzheimer’s disease is particularly challenging for many reasons, he said. The brain is the least understood organ in the body and the disease is inherently complicated, so there are a number of hurdles to overcome when doing clinical trials in this population. He also noted, however, that while clinical trials have not produced a disease-modifying drug, “we have gained tremendous knowledge from years of research and promising efforts are underway that it should only be a matter of time before we see therapies that should delay onset or progression of disease.”
The final presentation was delivered by Gunhild Waldemar, Professor of Neurology and Chair of the Danish Dementia Research Centre at Rigshospitalet, University of Copenhagen. She was one of the leading forces in the establishment of the new European Academy of Neurology (EAN) and her presentation, on medical management issues in dementia, shared the new recommendations from the EAN.
She began by pointing out that people with dementia are at increased risk of infections, malnutrition, incontinence, dehydration, adverse effects of certain medications, epileptic seizures, and neuropsychiatric symptoms, and said that medical conditions may go unnoticed in some cases. A lack of treatment, or mis-management of medical conditions may worsen symptoms of dementia, and lead to pain, physical disability, psychiatric symptoms, hospitalisations or even death, she continued. The new EAN guideline, “Medical management issues in dementia”, was developed by a multidisciplinary working group with the aim of helping to guide physicians on five selected topics: The need for medical follow-up of people with dementia; when and how to treat severe psychiatric symptoms with antipsychotics; the treatment of epilepsy; of vascular risk factors; and of pain.
All plenary sessions at the conference are co-moderated by Jean Georges, Executive Director of Alzheimer Europe and Kim Coppes from Live Online Events.
Following this plenary session, delegates had the chance to join a choice of four parallel sessions: One on psychosocial interventions; another on the subject of training care professionals; and one focusing on ethnic minorities. The fourth parallel session was organised by the VirtualBrainCloud project, and looked at “AI approaches for dementia research, diagnosis and treatment”.
European Working Group of People with Dementia (EWGPWD): “My second new life: adapting after COVID-19”
One of the highlights of the second day of the virtual Alzheimer Europe Conference was a special symposium organised by the European Working Group of People with Dementia (EWGPWD). Members of the group shared individual videos, in which they talked about how the pandemic has affected them personally, and how they have managed to adapt to new circumstances and a “new life”.
The members of the group who shared videos were:
Idalina Aguiar (Portugal), Nina Baláčková (Czech Republic), Stefan Eriksson (Sweden), Tomaž Gržinič (Slovenia), Carol Hargreaves (United Kingdom – Scotland), Bernd Heise (Germany), Angela Pototschnigg (Austria), Helen Rochford-Brennan (Ireland) and Geert Van Laer (Belgium).
The group hopes that these video clips will inspire people with and without dementia and give them hope that it is possible to find new ways to adapt during this pandemic, and beyond.
The videos are available on demand (to registered delegates), via the Alzheimer Europe conference platform: https://30aec.alzheimereuropevirtual.org/
Following this and other symposia organised in the early afternoon, delegates had the choice of a further four parallel sessions, covering diagnosis and disclosure: awareness campaigns: a session organised by the NEURONET initiative (Efficiently Networking European Neurodegeneration Research): and one by the INTERDEM network.
Building dementia-inclusive societies
The third plenary of the conference explored “Building dementia-inclusive societies”. Dianne Gove, Director for Projects at Alzheimer Europe, opened with a presentation on “Patient and public involvement approaches in dementia research: the experiences and contributions of the European Working Group of People with Dementia” (EWGPWD).
She emphasised that public involvement (PI) is about involving people with dementia throughout the whole research process, as advisors; carrying out research together with people, rather than on or for them. PI provides an opportunity for researchers to learn from people with dementia and the first step in that learning is to render issues and materials accessible to people who have cognitive and other impairments typically associated with dementia. She stressed that “equity is not about simply providing everyone with the same opportunities but about ensuring fairness and equality in outcomes. Reasonable adjustments and adaptations must be made to promote inclusion, in a similar way to the concept of reasonable accommodation in relation to disability.”
Members of the EWGPWD and others like them have a clear desire to have a real impact on dementia research and to influence decision making, whilst also empowering researchers to do good research by sharing with them their unique insight into dementia, she stated. Dianne Gove encouraged researchers and research bodies to “reach out, meet half way, adapt to and learn from each other and from mistakes, respect and value each other´s contribution and make sure that public involvement is not only valuable to research and society but also accessible, rewarding and enjoyable for all involved.”
Sabine Jansen, Executive Director, Deutsche Alzheimer Gesellschaft (DAlzG) shared some of the experiences of her organisation, with regards to promoting dementia-inclusive hospitals. She shone a light on how difficult hospital stays can be for people with dementia, stressing that one of the elements that could help to mitigate this would be to involve family carers more in the treatment and care of their loved ones. There are many good practice models which can be used, and although it can be a long road to change structures and approaches for the better, it is possible, she insisted. One of the main barriers, however, is the economic pressure hospitals are under, which prevents them from investing much-needed time into improving infrastructure and care for their patients with dementia.
The third presentation was given by Jacqueline Hoogendam, who is the co-ordinator for dementia policy and international affairs on Long-Term Care at the Ministry of Health, Welfare and Sport in the Netherlands. She listed some of the learnings from the Dutch dementia strategy – the “Deltaplan Dementie” – with regards to making Dutch society more dementia-friendly. First and foremost, she stressed that “persons with dementia matter”, that their wants and needs must be listened to and that they are valuable members of society, who still have abilities, despite some of the negative impacts their condition might have had on their memory, their capacity to carry out certain tasks and to interact with others in the same way they would have previously. One of the focuses of the Dutch National Dementia Strategy 2021-2030 is “Dementia Friendly 2.0: facilitate persons with dementia to use their abilities, to be part of society.”
The final presentation of plenary three was given by John Keady, who leads the inter-disciplinary Dementia and Ageing Research Team at the Division of Nursing, Midwifery and Social Work. He was the Chief Investigator on the multi-site ESRC/NIHR Neighbourhoods and Dementia Study and it was this study and the outcomes of the project which were the main focus of his talk.
He emphasised that neighbourhoods are social spaces as well as physical places, where “mundane” activities take on importance. For the study, people living with dementia used a range of creative methods and approaches to share their own neighbourhood experiences, as well as helping to develop a Core Outcome Set to communicate what matters most in their everyday lives at home.
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