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Parallel Session: National experiences

Abstracts and presentations

The image of dementia work in Finland

Satu Kalliomaa, Alzheimer Society of Finland, Finland,

As the proportion of older people increases we will need a larger work force for the care of the elderly. Most of the care workers will also encounter people with dementia and therefore every one of them should have a basic knowledge of dementia. The proportion of dementia work is relatively small compared to the full length of the degree studies. The care for the elderly does not attract young people studying for care professions. At the same time there is a crying need for qualified nurses. The Alzheimer Society of Finland is worried about the image of care for the elderly and in the spring of 2008 it carried out a national image campaign. The aim was to increase the amount of students specialising in care for the elderly. At the same time the campaign aimed at uniting the actors in the field. The image campaign was planned and carried out in cooperation with four other associations.

We created a brochure and a website where you could find study options and also interviews with young people working with older people. The campaign was carried out by the member associations of the Alzheimer Society of Finland. The events were brought to the students preparing for their Practical Nurse qualification. The event consisted of two parts: there was an exhibition where companies, municipalities and associations presented their work. Employers among the exhibitors explained what the work of a practical nurse involved.

The campaign day was carried out in nine localities. Some 1,230 students participated in the lectures. There were a total of hundred exhibitors. The campaign also gained interest in the media. There have been over 5,500 visitors on the website. According to the feedback all the exhibitors are willing to participate in similar events in the future. The campaign also helped the associations and employers in networking. The campaign was a good way to reach students and to encourage them to work with older people. The students said they had acquired new information on people suffering from dementia as well as of employment opportunities.

Centre Memory npo. – Complex assistance and care for Alzheimer´s disease patients and their relatives in Slovakia

Peter Koson, Slovak Academy of Sciences, Slovakia,
Co-authors: Maria Cunderlikova, Lubomir Lisy

Current efforts are made to improve assistance for dementia patients and their relatives for different levels of care. To meet these efforts and to help people with Alzheimer´s disease (AD) in Slovakia, the Bratislava non-profit organisation Centre MEMORY npo. (“Centrum MEMORY n.o.“ in Slovakia) was created in 2002 as the first preventive and educational centre both for the people with mild cognitive impairment and AD patients. For people with dementia a day care facility was established with a special activity programme for people with AD. The programme includes different forms of psychomotoric and cognitive training with the aim of using these non-pharmacological approaches as an additional therapeutic strategy to regular pharmacological AD treatment to slow down cognitive deterioration of the patients. Additionaly, training in activities of daily living is provided to improve the patients´ autonomy. Centre Memory activities are not solely restricted to patients as the aid programmes are also dedicated to the relatives and non-professional carers. Noteworthy, the MCI and AD patients, their relatives and other people attending Centre Memory represent a substantial part of non-medical members of the Slovak Alzheimer Society, the member organisation of Alzheimer Europe. Centre Memory has currently established new collaboration with medical and scientific institutions and shares the activities of its psychiatric consulting room with the Department of Neurology of the Slovak Medical University (Faculty Hospital Bratislava, Slovakia) and with the Institute of Neuroimmunology (Slovak Academy of Sciences, Bratislava, Slovakia) to improve the early diagnostis of new cases of dementia in Slovakia.

Living with dementia in Malta: people with dementia and their carers experiences

Anthea Innes: Dementia Services Development Centre University of Stirling, United Kingdom,
Co-authors: Charles Scerri, Stephen Abela

This paper presents initial findings from research conducted in Malta in 2008, with people with dementia who continue to live in the community and their family carers. The sample of participants was selected from the patient list of attendees of a memory clinic at the assessment hospital on the Island. Every patient had received a formal diagnosis of dementia and was over 65 years of age. The study included seventeen family carers and nine people with dementia.

Background information for each participant was recorded from the clinical files of each patient. Each person with dementia and/or their carer then participated in an audio-recorded, fully transcribed and translated interview. The paper will outline the context of dementia care provision in Malta. Drawing on data from the in-depth interviews, three key issues will then be discussed. First, the family organisation of informal care in Malta; second, the views and experiences of people with dementia and their carers about the use of anti-dementia drugs; and last, the support and information needs highlighted by both those with dementia and their carers.

This was the first funded research exploring the social aspects of living with dementia in Malta and is important as demonstrates similarities in care experiences of people living in a Southern European country, but also some distinct features in the organisation of family support. The paper will conclude by considering future research areas requiring attention in Malta and the importance of an integrated approach to providing information and support to people with dementia and their carers from the point of diagnosis onwards.

Dealing with Alzheimer's and related diseases: a transdisciplinary initiative of the King Baudouin Foundation

Bénédicte Gombault, Fondation Roi Baudouin, Belgium,
Co-authors: Gerrit Rauws, Saïda Sakali

The King Baudouin Foundation brought together an interdisciplinary group of 13 experts, chaired by Minister of State Magda Aelvoet, to find practical ways of improving the quality of life of persons with Alzheimer's disease or related disorders by giving them greater autonomy, reducing their dependence on others and strengthening social ties.

With this project, the Foundation hopes to contribute to improving quality of life for dementia patients and their care-givers. It will do so by basing its work on the cultural images of dementia and on questions relating to patients’ autonomy, relationships and dependency at different stages of dementia. Care and legal measures were examined in greater detail. Scientific studies were undertaken and patients, volunteer helpers, careworkers and legal experts were interviewed. Hundreds of points requiring attention were identified and dozens of recommendations have been drawn up with a view to pinpointing a series of specific actions to be taken. The topics covered by the project were:

  • What are the dominant pictures of dementia in society, what is their impact on people with dementia and how can we influence them?
  • How are the disorders in question perceived by people with dementia and those close to them, what are their strategies for coping with the problems associated with their disease and dealing with events that change their lives?
  • Which innovations are taking place in healthcare available in Belgium?
  • How can communication with the patients and their family be improved?
  • Which advance care planning and therapeutic projects can be adapted to people with Alzheimer's or a similar disease?
  • Which legal provisions affect people with dementia and the protection of their assets, and how can the legal position of someone with dementia be strengthened?

The working group presented its conclusions as more than 20 recommendations addressed to stakeholders and citizens to join everyone in laying the foundations for a society in which people with dementia receive the attention and quality of care they deserve.

A strategic plan for dementia care in Fife, Scotland

Brittany Ellis, Fife Council, United Kingdom,
Co-author: Louise McCabe

This paper describes a project currently running in Fife, Scotland to improve dementia care across the region. Fife Council’s Social Work department, Fife’s division of the National Health Service and the Dementia Services Development Centre, University of Stirling run the project jointly. Fife is a region in east Scotland with a population of 360,500 and over 130 settlements ranging from 21 people to 48,108. Demographically it is the third largest local authority in Scotland and has a diverse mix of urban and rural areas. People with dementia in Fife currently receive care and support from a wide range of professionals and services provided by public, private and not-for-profit sectors. The project described here concerns the development of a ten year strategy to improve dementia care by developing a coherent and integrated approach. A key characteristic of the project is partnership, between professionals and academics; between health and social care; between the different care sectors and importantly between those who use services and those who provide them. This paper describes the project to date detailing the techniques and approaches used to develop the strategy and reflecting on what has worked and what has not. The paper concludes with a discussion of a draft strategy and how it would be implemented.

Lobbying for change - the experience of Alzheimer Portugal

António Oliveira Costa, Alzheimer Portugal, Portugal,
Co-author: Maria do Rosário Zincke dos Reis

Alzheimer Portugalwas founded 20 years ago to promote the quality of life of people with Alzheimer’s disease and their carers, mainly through information and carer support and in 2003 opened the first Day Care Centre and Home Care Services in Portugal specifically created for people with dementia. Since then, the association has kept growing in terms of the number of associates, in services, in partnerships with private and public organizations, and became a reference, in Portugal, in caring people with dementia, providing training and support to families and carers. In Portugal, there is no national plan for Alzheimer’s disease and no particular policy for people with dementia. The reimbursement for specific drugs is only 40% of their cost and only a few private nursing homes are prepared to accept people with dementia. For these reasons, people expect Alzheimer Portugal to keep creating more services such as Nursing Homes and Day Care Centres.

What is our mission? What are our limits? How can we really promote the quality of life of people with dementia and their carers, considering the 70,000 people with Alzheimer’s disease in Portugal? Is it a reasonable task to a non-profit organisation, considering the tremendous financial burden and several structural changes and risks, such as increasing human resources and cost of the premises? How can we maintain a financial balance between income and expenditure? Furthermore, how can we remain independent from the ones whom we lobby for change? Should we be doing the politicians’ work, or be lobbying them to do it? The priorities of the European Alzheimer Movement are very clear in our minds. Our role is to raise awareness for the importance of a National Dementia Plan, which recognises Alzheimer associations as partners in the creation and implementation of political measures.

Alzheimer Portugal is determined to make dementia a national health priority and lobbying for change is our main goal. This presentation reflects our own experience, and aims to share our difficulties and our ideas, our projects and their results,



Last Updated: Wednesday 21 October 2009