Crisis and Care Coordination

Leader

People with dementia need different sorts of care and their need for care grows as the disease progresses. In most health and care systems dementia care will be provided by a range of different providers each working under different eligibility and funding rules and often without clear co-ordination with the outcome that the experience can feel fragmented. People who are confused due to their dementia, get confused even more by the different care providers, and their different systems and points of contact and their carers often have the experience they have to take on responsibility for care co-ordination themselves. It is also important that physical environments are adapted to help enable people to live well and safely at home.

In situations of crisis, where the person with dementia, or their primary carer has an acute episode of illness or trauma, the person with dementia may be admitted to hospital or a residential care institution. Admission to institutional care is often unnecessary and is a result of either limited access to alternative and more appropriate care, or lack of care co-ordination between health and care providers. Family care-givers often report significantly increased anxiety, apathy, resistance to care, and distress in these types of crisis situations. Crisis support models and better practice can significantly reduce strain on care-delivery systems by incorporating non-pharmacological interventions, assisting families with communication, and reducing family distress during symptom crises.

Work Package Co-Leader - Nicola Vanacore

Nicola Vanacore is a senior neuroepidemiologist at Italian National Institute of Health (INIH) (MD, PhD). He is a head of Promotion and evaluation prevention policy of chronic diseases Unit at National Centre for Disease Prevention and Promotion Disease in INIH.  He leaded the Italian National Observatory on Dementia and the National projects on dementia in collaboration with the Italian Ministry of Health. He participated as a work package leader in the first Joint Action on dementia (ALCOVE). He was member of the steering group of the Italian Post Marketing Surveillance studies on Alzheimer Disease (CRONOS) He has published 235 articles in peer-reviewed journals (Pubmed; H-index=45). He has much experience in epidemiological studies in drugs area and clinical epidemiology on dementia.

Work Package Co-Leader - Jacqueline Hoogendam

Senior policy advisor, in the Ministry of Health, Welfare and Sport, The Netherlands, working on International Dementia issues.  She is on the Management Board of the EU Joint Programme Neurodegenerative Disease Reseach (JPND) and in the Group of Governmental Experts on Dementia at DG Sante, European Commission. She is also a joint work package leader on the crisis and care co-ordination work package of the EU Joint Action – Act on Dementia.

Partners

Italian National Institute of Health

The Institute conducts scientific research in a wide variety of fields, from cutting-edge molecular and genetic research to population-based studies of risk factors for disease and disability. Research priorities are based on those set forth in the National Health Plan. The Institute is also involved in several major clinical trials, which are frequently conducted in cooperation with the Scientific Institutes for Research and Care (IRCCS) network and Hospitals.

Alzheimer Europe

Alzheimer Europe is a non-governmental organisation (NGO) aiming to provide a voice to people with dementia and their carers, make dementia a European priority, promote a rights-based approach to dementia, support dementia research and strengthen the European dementia movement.

Claude Bernard University

Claude Bernard Lyon 1 is a university that provides teaching for 45,000 students a year in the fields of science and technology, health and sport.

Claude Bernard Lyon 1 is part of Université de Lyon, the most important French University site outside the Paris region. 

Sapienza - Università di Roma

With over 700 years of history, 111,000 students, 4000 teachers and 2000 employees, technicians and librarians, in addition to 2000 administrative staff in university hospitals, Sapienza is the first university in Europe. Our mission is to contribute to the development of a knowledge society through research, excellence, quality education and international cooperation.

Ministry of Health, Welfare and Sport (Netherlands)

The Netherlands healthy and well. This is the motto of the Ministry of Health, Welfare and Sport (VWS). The ambition of the Ministry of VWS is to keep everyone healthy as long as possible and to restore the sick to health as quickly as possible. The ministry also seeks to support people with a physical or mental limitation and promote social participation.

Profiles

Nicola Vanacore

National Centre of Epidemiology, Surveillance and Health Promotion

National Institute of Health, Via Giano della Bella 34

00161 Rome, Italy

tel: +390649904243

E-mail: actondementia@gov.scot or nicola.vanacore@iss.it

Website: www.actondementia.eu

Jacqueline Hoogendam

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Make it happen

Once the evidence reviews were completed, work packages turned their attention to identifying which best practices to test and in which healthcare settings and geographical locations.  More information will become available here as this work progresses.

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