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Special Symposia

Detailed programme and abstracts

SS1. Living well with dementia “We are still here and I am still…”

ROHRA Helga, HAJRIČ Amela, AGUIAR Idalina, HARGREAVES Carol

When hit by a dementia diagnosis, one fear is that one shall lose oneself. But our experience tells us that although we meet with losses of competence and skills, we continue to be Amela, Helga, Idalina or Carol. We continue to be ourselves - persons still able to contribute to society, still able to do things for ourselves, still able to feel, laugh, work, take part in everyday life. Sometimes with the help and support of others, sometimes quite under our own steam. This symposium is about everyday life, seen from the perspective of people who have lived with dementia for some time, and who continue to be Amela, Helga, Idalina and Carol.

  • Employment: I am still able to work – Helga Rohra
  • Stigma: I am still experiencing stigma - Amela Hajrič
  • Social media: I am still active on social media - Idalina Aguiar
  • Humour: I am still a person with a sense of humour – Carol Hargreaves

This symposium is organised by the European Working Group of People with Dementia

SS2. Carers’ experiences of the diagnosis of dementia: is there a gender issue?

PETERSSON Sofia, SCHUMACHER Annemarie, WOODS Robert, MOSSMAN Jean

This interactive session will explore the impact of Alzheimer’s disease (AD) on the people who support patients – the family and friends who act as caregivers.  It will include the personal experience of a person who cared for her father with AD and is now living with the disease herself, it will highlight the caregiver burden on women, and will include gender differences identified in a 2017 European study of caregivers.

The impact of AD (responsible for 60–70% of dementia cases) on women is two-fold.  Firstly, women make up the majority (two thirds) of AD patients worldwide and they experience poorer cognition and faster progression of symptoms compared to men with the disease. Secondly, women constitute 60-70% of AD caregivers.  As the disease progresses, the burden on caregivers becomes greater, leading to a reduced quality of life and the burden on women caregivers for people with AD is greater than that experienced by male caregivers.

Informal care is a major contributor to societal costs in AD; Kenisgsberg et al. estimated that in 2008, on average 55% of the total cost of care was attributable to informal care.  Here again the impact on females is disproportionate: among working women caregivers, 20 percent have gone from working full-time to part-time, compared with only 3 percent of working male caregivers.

The session will include short presentations giving different perspectives on caregivers’ experiences in AD followed by an open discussion with the audience.

This symposium is sponsored by Roche

SS3. Engaging with patient organisations within IMI consortia to inform quality, relevance and value in Alzheimer’s research – insights from MOPEAD, EPAD and ROADMAP

There is a need for better treatment options and for addressing the economic, caregiver and societal impact of Alzheimer’s disease (AD). Innovations in clinical development are focusing on earlier identification of AD and timely interventions to slow or prevent progression of the disease. However, there are challenges in the identification of individuals at the early stages of AD given the subtleness of presenting symptoms and lack of availability and/or sensitivity of assessment tools. With multiple new interventions in development, there are opportunities to identify and prepare those suitable to participate in clinical trials. At the same time, approaches to improve the value of health care delivery in AD are challenged by how to evaluate any early disease intervention in a slowly progressive disorder within current health technology assessment and payer systems.

Individuals with AD and caregivers provide their time and data for research and will be the main beneficiaries for effective treatments. They should be involved in the decision making process, along with payers, regulators and healthcare providers as key stakeholders.

This symposium will explore how MOPEAD, EPAD and ROADMAP, three public-private consortia sponsored by Horizon 2020 under the auspices of IMI and EFPIA, are tackling AD across its continuum. The panellists will provide their perspectives regarding the rationale for each project, engaging in a discussion on the concrete multipronged actions to improve timely diagnosis through citizens’ participation, pioneering novel approaches to clinical trials and providing evidence of the value of new medications.

SS4. Early intervention in Alzheimer’s disease: For a new understanding of AD across its spectrum

DESAINT Nilsy, MILTON Alex, HANDELS Ron

Alzheimer’s disease (AD) is a progressive disorder that spans over many years, in other words: the brain starts deteriorating years before symptoms emerge. When are affected people becoming “patients” across the spectrum of AD and what can we do about it? Between the early signs of being affected by AD and the ability to provide treatment, many years will pass and many things could have been done. Amidst the call for early intervention and putting knowledge and resources in the hands of patients and care givers, we are still faced with a number of societal, ethical, technical and medical challenges. These are the premises of our lunch session, where we would like to discuss the concept of “early intervention” across its many facets and develop a new understanding of AD.

If “knowledge is power”, the first step is to ask whether we are collectively ready to receive such knowledge. Simply put, if we would able to know, would we want to know that we live with AD? The second step is acting on this level of awareness: What are the tools and interventions that are already available and that could guide a proper route of action to support both patients and care givers? Finally, as new treatments addressing the biological origins of AD, i.e. disease-modifying therapies, are being developed and will eventually become available, how can we assess the societal and medical value of such treatments?

In this short session, experts and stakeholders will present the scientific rationale for this new understanding of Alzheimer’s disease and the ethical challenges it holds; explore the opportunities to monitor and control the risk factors through eHealth interventions; and to assess the potential socio-economic impact of treating AD before the onset of dementia.

This special symposium is organised by EBC and supported by MSD.

 

 
 

Last Updated: Thursday 09 November 2017

 

 
 

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