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PL3. Changing practice – Social and care aspects

Detailed Programme, abstracts and presentations

PL3. Changing practice – Social and care aspects (Saturday, 6 October, 14.00–15.30, Europa 4)

PL3.1. The Ambient Assisted Living Joint Programme and its focus on the mobility and independence of people with dementia

Kerstin Zimmermann

The Ambient Assisted Living Joint Programme (AAL JP) is a funding activity that aims to create better conditions of life for older adults and to strengthen industrial opportunities in Europe through the use of information and communication technology (ICT). It carries out its mandate through the funding of across-national projects (at least three countries are involved) that involve small and medium enterprises (SME), research bodies and users’ organisations (representing older adults).

The motivation of this funding activity is in the demographic change and ageing in Europe, which implies not only challenges but also opportunities for the citizens, the social and healthcare systems as well as industry and the European market. Based on Article 185 of the TFEU, designed to strengthen research cooperation between Partner States’ own initiatives and those of the EU29 to financially support, the AAL JP is financially supported by 23 European countries and the EC for the duration of 2008 to 2013. Total investment over this period was planned at minimally €600m contributed in the ratio of approximately 25% from the Commission, 25% from Partner States and 50% from programme participants.

Within the broad range of AAL topics putting the end user in focus, social aspects of AAL, including independence and mobility of people with dementia, were partly addressed in different calls such as ICT-based solutions for:

  • Prevention and management of Chronic Conditions 2008
  • Advancement of Social Interaction and Participation 2009
  • Advancement of Older Persons’ Independence 2010 and Mobility 2011

Some of the first project results will be presented and discussed in this talk.

PL3.2. ALCOVE – The European Joint Action on dementia to exchange good practices

Armelle Leperre-Desplanques, Nathalie Riolacci-Dhoyen, Gloria Villar, Tomás López-Peña Ordoñez, Michal Novak, Rostislav Skabrana, Nicola Vanacore, Angela Giusti, Karim Saad, Dawn Brooker, Harriet Finne-Soveri, Matti Mäkelä, Bénédicte Gombault, Gerrit Rauws and the ALCOVE group

ALCOVE is a European Joint Action dedicated to Alzheimer’s disease and related dementia.

The ALzheimer’s COoperative Valuation in Europe (ALCOVE) project is a Joint Action co-financed by the European Commission and comprises 19 EU Member States. The seven work-package leaders – France (coordination), Spain (dissemination), Slovakia (evaluation), Italy (epidemiology), the United Kingdom (early diagnosis), Finland (care and services) and Belgium (rights and dignity) constitute the ALCOVE Executive Board which leads this ALCOVE two-year Joint Action along with its 30 partners.

ALCOVE’s main objectives are: 1) to establish a European network between member states for the exchange of experience and knowledge at the level of healthcare institutions; 2) to inform and advise policymakers, healthcare professionals, caregivers, and citizens through convergent recommendations, capitalising on previous and ongoing initiatives; and 3) to reduce the current risks associated with psychotropic drug use, particularly that of antipsychotics, for this population.

Specifically, ALCOVE hopes to improve data on: dementia prevalence; access to early-as-possible dementia diagnosis; care for those living with dementia, especially those with behavioural disorders; and the rights of people with dementia, particularly with respect to advance declarations of will. Accordingly, ALCOVE has a work package devoted to each of these key questions. In conducting this work, ALCOVE draws on previous European studies (EuroCode, Memento, Ictus, Descripa, etc) and existing networks, including the Joint Programming on Neurodegenerative Diseases (JNPD), European Alzheimer Disease Consortium (EADC), European Dementia Consensus Network (Edcon), early detection and timely Intervention in DEMentia (Interdem), and, of course, Alzheimer Europe with which ALCOVE collaborates.

The ALCOVE Tool Box will contribute to improvements in patient safety by limiting antipsychotics in dementia.

ALCOVE’s participants have decided that a special focus will be made on the inappropriate use of antipsychotics to treat the BPSD of Alzheimer’s disease and related dementia as this is an urgent issue affecting patient safety and the quality of life of individuals living with dementia and their carers. As the culmination of the project, ALCOVE will present information on the exposure of patients living with dementia to antipsychotics in Europe and an evaluation of the existing antipsychotics risk reduction strategies for people living with dementia.

The ALCOVE Tool Box will provide an operational set of improvement tools and methods (informational support, indicators, educational programmes for professionals and carers, clinical guidelines, national strategies, outstanding projects) that have been generated based on ALCOVE dementia benchmarking in EU member state countries.

ALCOVE’s first task will be to draft an updated synthesis concerning good practices in epidemiological data collection, the organisation of health systems or services for an earlier diagnosis, the support systems and educational programmes for preventing and caring for BPSD, competence assessment and the drafting of advanced declarations of will for this population. This synthesis will serve to inform and influence policy and healthcare decision-making in European countries, with the goal of improving the well-being of individuals living with dementia and their carers. This synthesis, as well as the ALCOVE Tool Box, will be shared at the ALCOVE Final Event, which will take place in Paris on March 28th, 2013 and will be made available on the ALCOVE website: http://www.alcove-project.eu.

PL3.3. European collaboration on psychosocial research – The example of the Interdem network

Bob Woods

INTERDEM is a pan-European network of researchers on timely detection and psychosocial interventions in dementia, established in 1999 (www.interdem.org). It is an interdisciplinary group, currently with members from 17 European nations. Disciplines range from mental health and gerontological nursing, clinical psychology/neuropsychology, medical sociology, social work and occupational therapy to neurology and old age psychiatry. All are actively engaged in psychosocial research. INTERDEM meetings are arranged to tie in with relevant Alzheimer’s conferences and meetings in Europe, and a close working relationship has been established with Alzheimer Europe. Although INTERDEM has no core funding, its development has been aided by a number of EU-funded projects in which it has played a leading or significant role, and by the members’ host institutions, who, in many cases, recognise the value of European collaboration in this challenging area.

The evidence-base for psychosocial interventions has increased greatly over the last decade, and they now regularly take their place alongside pharmacological interventions in treatment guidelines and protocols. INTERDEM has played a role in drawing together and synthesising the evidence, and in making available manuals and protocols for different approaches. Much of the growth of acceptance of their value has come from following the principles established for evaluating pharmacological interventions – in effect, treating the psychosocial intervention as a ‘pill’, which can be packaged and delivered at varying doses. In reality, however, a psychosocial intervention is delivered within a complex system of health and social care, heavily influenced by cultural attitudes and expectations.

This is an area where European collaboration demonstrably adds value. The implementation of psychosocial interventions across countries requires an understanding of their place within care systems, and of the role of different professional and family cultures. People with dementia and their carers need to be involved in designing cross-border implementation. Evaluation across countries requires harmonisation of outcome measures, as well as translation and validation.

Adopting the methodology of drug trials has served a purpose in bringing psychosocial interventions to the fore. The time is now ripe to recognise the ways in which methodologies need to be adapted and developed to be fit for purpose in evaluating interventions that need to be tailored to the individual and that may be trying to make a difference not only for the person with dementia but also the family and other carers. Greater emphasis on the challenge of implementation is required. As well as new research, existing findings need to be put into practice.

The inclusion of psychosocial interventions in the Joint Programme on Neurodegenerative Diseases is welcome – networks such as INTERDEM have contributed to these approaches, which can be person-centred and empowering of people with dementia, being seen as being credible and worthy of research endeavour. The next decade promises further growth and development of these approaches, with many more choices available at each point in the journey of the person with dementia.

PL3.4. Palliative care for older people with dementia

Marilène Filbet

Palliative care programmes are increasing in European countries, but these services are very often dedicated to cancer patients. Access to palliative care services for patients with dementia is a challenge for the future. The frequency of dementia is increasing with age, and as a result of ageing populations the number of people with dementia is also increasing. Do patients with dementia need palliative care?

We chose two frequent clinical situations, pain control and nutrition dilemma, to show how palliative assessment can improve the quality of life for patients and their caregivers. Symptom assessment is more difficult in patients with impaired verbal communication. The treatment is challenging in older patients and more research is needed in this specific field.

Lastly, the decision-making process can be very challenging and should involve patients’ caregivers and family members. During this long progressing disease patients’ caregivers and their families will need support and education.

 

 
 

Last Updated: Thursday 15 November 2012

 

 
 

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