Sirpa Pietikäinen (Finland)
MEPs speak out on dementia
Sirpa Pietikäinen (Finland) talks to AE about her priorities for the European elections (May 2009)
In the run up to the elections, Alzheimer Europe asked Members of the European Parliament the following questions:
1. As the mandate of this European Parliament draws to a close, we would be very interested in hearing which you consider to be the key accomplishments of this Parliament which had a direct impact on people with Alzheimer’s disease and their carers?
2. After the European Parliament elections in June, which are the main policy initiatives that will be important for people with dementia and their carers?
3. If you are re-elected, do you have any personal priorities that would be of particular interest to people with dementia and their carers?
Sirpa Pietikäinen: France's high prioritising of Alzheimer's disease during its EU presidency in 2008 brought forward a general debate about Alzheimer's disease in Europe and put a dynamic development programme in place in this area. The European Parliament has also been active in the field. The written declaration on the fight against Alzheimer's disease adopted by the Parliament in February 2009 is an important step forward in making Alzheimer's disease a European public health priority and especially in developing a European action plan on the issue. The green paper on Improving the mental health of the population voted for in 2006 gives special attention to carers and suggests that they should be consulted when developing Commission proposals in the future.
The first priority is to ensure a more effective mechanism to defend patients and caregivers’ rights. We need to legally strengthen the role of Alzheimer associations as defenders of the rights of people with dementia and caregivers. The same principles that guarantee NGO´s rights of access to information and public participation in decision-making in environmental matters, as stated by the Århus convention, should be applied to Alzheimer's disease. Secondly, caregivers' support systems should be enhanced and their legal status improved. Thirdly, a united European action in prevention, early diagnosis and support should be created. Fourthly, the resources for research need to be substantially increased in all fields related to dementia.
The main priorities are to strengthen the role of advocacy groups and to invest in research and precautionary care. Just as it is important, or even more so, to underline the need for high-quality, medical care, one needs to emphasize the role of decent everyday-life and routines for each individual. The much-appreciated work of family carers should be evaluated and supported by the provision of required services. My personal priority in general is to fight against the stigma related to memory diseases and to fight for self determination and other rights of people with memory-related disorder.
Sirpa Pietikäinen, MEP, member of the European Alzheimer’s Alliance, talks with Alzheimer Europe about the challenges facing people with dementia in Finland (April 2010)
Alzheimer Europe (AE) : Ms Pietikäinen, what are the key challenges that people with dementia and their carers face in Finland ?
Sirpa Pietikäinen (SP) : I would like to focus on three keypoints. They are early diagnosis, quality of care and services and looking after the carers.
Early diagnosis allows for many of the symptoms to be treated and thus enhances the possibilities to sustain normal daily life. Also, it is of vital importance to the patient, and his or her family, to understand the nature of the disease which reduces the stress that rises from uncertainty. It also allows them more time for many critical decisions in life to be made.
The level of care and services still vary a lot locally. Despite of nationwide standards there is an urgent need of better monitoring institutions and services locally.
Caregiving is one of the hardest jobs one can imagine and looking after the carers is of utmost importance. It consists not only of guaranteeing the financial resources but especially taking care of the physical and mental well-being of the carers.
AE : Governments across Europe are starting to pay more attention to the demographic changes in our societies and the resulting increase in the number of people with dementia in the future. Are there similar discussions in your country on a governmental or parliamentary level ?
SP : Yes, there are. The public attention is mainly on demographic change and its fiscal consequences. Much less has been discussed about how to cope with the rising amount of people with memory related illnesses.
But, I´m convinced that the awareness is about to rise and there are good signs of it in the political arena. The Ministry of Social and Health Care has given some recommendations and it is preparing a new law considering elderly people, so, at governmental level, I see that the issue is rising on the political agenda.
AE : Do you believe that Finland will follow the example set by France, Norway, the Netherlands and England and create a National Alzheimer's Plan?
SP : I am quite convinced that Finland will follow. I have taken up the issue of the plan into public discussion and I have had conversations about it with many of our politicians. Our Minister of Health and Social Services has taken the initiative very seriously and her Ministry has given a promise of a national memory-illness plan.
The plan should follow the guidelines of the famous Finnish North-Carelia -project which combined research and guidance and managed to reduce significantly cardiovascular diseases. In the same manner, we can combine the general research on memory-related illnesses with the monitoring of personal brain health, with information on the living-habits and thus rise the public knowledge of these illnesses.
AE : What do you believe should be the three policy priorities for Finnish policy makers to improve the lives of people with dementia and their carers in your country ?
SP : The main priorities are linked to the three points I mentioned earlier and the national plan. As a part of the plan I would like to emphasize one very important issue: the status of the national Alzheimer or other memory-illness organisations.
Organisations have experience and knowledge on the overall situation and all aspects of the quality of care, including practices in institutions and support provided by the local authorities. This knowledge can be utilised if organisations could be legally recognised advocates in issues considering the memory-illnesses and the overall situation of the patients.
The principle is same that the environmental organisations were given in the treaty of Århus. They can start a legal process on behalf of patients' interests, for example in cases of neglect. This is even more important now, when we have noticed in Finland that there is an urgent need to introduce adequate quality control of long term care.
AE : Finally, a last question on the need for a European response to the growing numbers of people with dementia. Would you support the development of a European Action Plan in this field and, if so, what should the priorities for such a European collaboration be ?
SP : Yes, I will support it with great pleasure. I have discussed the issue also in European Parliament and I hope that it wouldn´t be too long before the new commission present the plan Parliament has asked for.
Priorities of collaboration start from preventing brain diseases. Special attention should be paid on information to the public, with guidance on the ways to avoid these diseases. Through research we also need more information on the mechanisms of brain diseases and get new means to prevent and treat them.
Last, but not least, comes the question of quality of life. We simply have to make sure that as many people as possible can maintain their functional capacity. We also have to secure the best possible quality of life for people with memory-related illnesses and their carers and close ones. From my own experience as a carer I know that there are also always many small happy moments in everyday life. With the right and adequate support these moments are not too much overshadowed."
Last Updated: mercredi 28 mars 2012