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Six special symposia held during #30AEC

Tuesday 20 October 2020

On 20, 21 and 22 October 2020, during the 30th Alzheimer Europe Conference (#30AEC), six special symposia were held:

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:

Lessons from COVID-19 for AD health system readiness

The response to the COVID-19 pandemic offers important lessons for health system readiness for Alzheimer's disease (AD) in Europe. Across countries, the COVID-19 pandemic has clearly shown that without the right measures in place, even highly-resourced healthcare systems can become rapidly overwhelmed by an unpredictable healthcare crisis that affects a large population. The pandemic illustrates the importance of analysing robust data correctly and responding quickly to changing scenarios by using healthcare resources effectively and efficiently. Specifically, the AD community itself has been directly affected by the prevailing COVID-19 situation, as individuals are often considered at higher risk of mortality and morbidity. This highlights the fragility of the current approaches to diagnosis, treatment and care for people living with AD. The number of people with AD is growing, and as illustrated by the COVID-19 pandemic, action needs to be taken to prepare health systems for the future rising demand from patients and their families as new diagnostic and treatment innovations emerge.

This special symposium, sponsored by Roche, brought together an expert panel to share their perspectives on and experiences of the lessons to be learned from COVID-19 for AD health system readiness, and to explore a range of topics, from healthcare access and service coverage, capacity constraints, the respective roles of primary and specialist care, and how to ensure medical innovation can support a patient-centred care model in AD.

Dementia care and COVID-19

This special symposium brought together four speakers to discuss the impact of the pandemic on people living with dementia and specifically on their access to care, from the perspectives of: a research institution (Fundació ACE); two national Alzheimer associations (Alzheimer Scotland and The Alzheimer Society of Ireland); and migrant family carers.

Mercè Boada detailed the sequence of events and actions undertaken within the Fundació ACE Memory Clinic to swiftly adapt to telemedicine consultations. She shared data on individuals under follow-up by the Memory Unit between 2017 and 2019, comparing this data with the number of weekly visits in 2020, before and after lockdown. Videoconference visits have become the norm, and neurologist and neuropsychologist evaluation protocols have rapidly been adapted to the new situation.

Carolien Smits (Pharos, Netherlands) shared that the COVID-19 era and ensuing government measures have resulted in anxiety and increased burden for migrant family carers. Professional care quality is under pressure and is becoming less culturally sensitive, in some cases.

Nicola Cooper presented the experience of Alzheimer Scotland which, in a few short weeks, transformed its care approaches through the use of technology, experiencing a paradigm shift in how it delivers services. Over 200 staff undertook digital skills training and now use the NHS approved Attend Anywhere video platform to deliver 1:1 support and a range of therapeutic group activities, including cafes and ceilidhs, for service users at home and in care settings.

Bernadette Rock (The Alzheimer Society of Ireland) in turn discussed Ireland’s experience of emergency psychosocial supports for people with dementia and their families. The outbreak of COVID-19 forced the closure of almost all community-based dementia-specific services and supports in Ireland, leaving thousands of people with dementia and family carers to fend for themselves. Specific needs of people with dementia, family carers and other stakeholders were identified via online and telephone surveys and, using this data, The Alzheimer Society of Ireland developed a new suite of emergency supports and services.

It is time for European healthcare systems to prepare for Alzheimer’s breakthroughs?

Currently, health systems in Europe are not ready to get the most out of potential breakthroughs in disease modifying therapies for Alzheimer’s disease and other dementias. To be able to fully benefit from these therapies, complex health systems will have to adapt and change and will have to ensure that they can detect and diagnose dementia early, deliver new medicines by infusion, and monitor treatment. While most of these improvements will need to be undertaken locally, by national and regional governments, there are also significant steps that can be taken at the European level.

The panel discussion in this symposium, which was organised by The European Federation of Pharmaceutical Industries and Associations (EFPIA), was an opportunity to raise awareness about the need for European healthcare systems to plan for Alzheimer’s breakthroughs and to identify solutions. “The time for action is now”, was the overriding message.

From brain health to Alzheimer’s disease – Addressing the challenges early in the patient journey

Over the course of the last decade, research into the pathophysiology of Alzheimer’s disease has shown that early intervention will be important to maximise outcomes for the patient. Currently, detection, diagnosis and care planning all start once symptoms start to become more apparent, which is very often late in the disease course. To benefit from future advances in treatment and care, healthcare systems will need to appropriately recognise, diagnose and support people at the earliest stages of the disease – perhaps even before symptoms appear. Creating a policy response to drive the healthcare system to meet the emerging science will require support at both the regional and country levels to take urgent action.

In a time of social distancing and uncertainty in the world of healthcare, collaboration and communication among all stakeholders is more important than ever. This symposium sponsored by Biogen, offered perspectives from a variety of stakeholders, to better understand the current state of treatment and care, and where challenges exist in the patient journey. Participants examined ways in which healthcare systems are improving detection and diagnosis and reviewed policy actions to address barriers to challenges, such as late stage or misdiagnosis.

Medical management of dementia

People with dementia are at an increased risk of a number of comorbidities together with symptoms of dementia. Although no disease-modifying therapy exists for the neurodegenerative brain disorders causing dementia, adequate management of these issues may improve the quality of life, and slow down the progression of the disease. A number of challenges exist, however, such as lack of insight meaning that people may not seek medical assistance; and lack of access to medical staff, which may mean that people with dementia do not receive proper treatment and management.

The sixth and final symposium at the virtual Alzheimer Europe Conference explored the guideline of the European Academy of Neurology on “Medical management issues in dementia”. The Guideline aims to support physicians on a number of important medical management issues in the care of patients with dementia, including: systematic medical follow-up; treatment of vascular risk factors; management of pain; treatment of agitation and aggression with anti-psychotics; and management of epilepsy.

Four of the authors of the Guideline were present, to answer questions.