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PL1. European solidarity without borders

Detailed Programme, abstracts and presentations

PL1.1. What does solidarity mean for people with dementia and their carers?

Sube Banerjee

There can be no doubt of the magnitude or importance of the public health, policy and clinical challenges posed by dementia. An estimated 35.6 million people worldwide are living with dementia in 2010. This will double every 20 years, to 65.7 million in 2030, and 115.4 million in 2050. Much of the increase is clearly attributable to increases in the numbers of people with dementia in low and middle income countries. Poor recognition, under-diagnosis and stigma cause significant problems for people with dementia and their families in countries of all sizes and communities of all income levels. The current and future challenges of dementia require policy and action at all levels: international, national, regional, local and individual. The focus of this session will be an attempt to understand how we can enable this change and this policy focus to occur.

New treatments and ways of preventing dementia need to be developed and tested and health and social policy need to be developed for people with dementia. Help-seeking and the offering of help in dementia are constrained by stigma, the false belief that it is a normal part of ageing, and by a widespread underestimation of the positive things that can be done to help people with dementia live well. In the last decade it has become clear that there are a multiplicity of positive interventions that can promote independence and give people with dementia and their family carers good life quality. It has also become clear that the large majority of people with dementia and their family carers do not benefit from these. In fact systems often seem to have been designed to result in the avoidance of diagnosis and the consequent denial of care.

Solidarity is one major weapon that we have in our arsenal with which we can use to achieve our goals. The strength of the voice of people with dementia and carers across Europe and across the world has the possibility of being a powerful agent for positive change in policy and services. However, in order to achieve this we need to work together. We need solidarity. We need one voice and one message. That message must come from the experiences of people with dementia and carers, but it also needs to speak in the language of decision-making in difficult times. We need to demonstrate clinical and cost-effectiveness. So solidarity and unity of vision and message is needed between people with dementia, carers, and those that provide services and researchers. The stronger, the simpler and the more coherent the message, the more likely it is to be heard and acted upon. This requires organisation, it will not happen by chance. It is positive that there are examples of this happening all over the world.

These issues will be considered with reference to work done to develop a National Dementia Strategy for England and the development of new models of early intervention and quality for people with dementia. Working together we should look to a time when the public and professionals alike are well informed; where the fear and stigma associated with dementia have been decreased. Where diagnosis is made well and made early. This would be a system where families affected by dementia know where to go for help and what services to expect as they live with dementia. This would be a system that enables people to live well with dementia.

PL1.2. Alzheimer’s disease - A challenge for all

Andrzej Szczudlik

Dementia raises great challenges, both in clinical and organisational terms. A person with dementia is often dependent on other people. Even the best care from a family member is not enough for the patient to maintain an active life. People with cognitive impairments have the right to be not only a family member but also, outside the home, a member of society, and to get help from other people and institutions. We need a change of attitude toward memory illnesses, both in people from the patient’s neighbourhood and also from local society opinion leaders and policy makers. The promotion of the quality of life and well-being of persons with dementia and the legal protection of persons with dementia should be a part of the strategic health policy in Poland as in every other European country.

The public awareness of Alzheimer’s disease in Poland is rather low. There are no Polish representatives in the European Alzheimer’s Alliance, the group of Members of the European Parliament who unite for the dementia cause. We have no national dementia plan as yet. We urgently need specialised support centres with highly trained professionals for people with dementia and their carers, and improved access to medical care for them. We hope that the Polish presidency of the EU will help us to make dementia a priority in health policy. Polish recommendations for the diagnosis and therapy of people with dementia have been prepared. The training of general practitioners is ongoing. We apply for building collaborative networks in research and training projects and for support to obtain epidemiological data regarding dementia in the Polish population.

 

 
 

Last Updated: Wednesday 26 October 2011

 

 
  • Acknowledgements

    Alzheimer Europe gratefully acknowledges the support of the following sponsors: Fondation Médéric Alzheimer, Fondation Roi Baudouin, Janssen, Lilly, Pfizer, Sanofi and SCA Global Hygiene
  • Fondation Médéric Alzheimer
  • King Baudouin Foundation
  • SCA Global Hygiene
 
 

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