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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

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."

Sirpa Pietikäinen, MEP (Finland), talks about the need to reform current coercive measures to protect constitutional human rights of people with memory diseases

Austerity measures all over Europe greatly affect the lives of people with memory-disabling diseases. As the care of older people is mostly seen as a burden, it is often on the front line of budget cuts - or “rationalisation of activities”.

Whereas the rights-based approach towards the lives of older people has never been strong enough, the fundamental rights of most disadvantaged people need defending more than ever. The voice of those unable to speak for themselves can never be too loud.

One of the latest examples of forgetting fundamental rights comes from my own home country, Finland. The Ministry of Social Affairs and Health is preparing a law permitting the use of coercive measures in the care of people with memory diseases and people with disabilities. Ironically, the official purpose and title of the revision is to strengthen the rights of people to decide on their own lives.

The main argument for legalising coercive measures is the following: as the existing practice is uncontrolled and probably widely used, it is better to restrict its use and, at the same time, legalise it. This approach has good intentions: restrict and limit every day violations of those fundamental rights which go unnoticed due to common (and tolerated) practices. However, you should never legalise unjustified breaches of constitutional human rights. Memory disabled people are not secondclass citizens whose rights can be restricted just because we are used to doing so and are unable to understand or communicate with them.

It is sad but true that the use of coercive measures form part of everyday care of people with memory diseases - doors are locked and in the worst cases, patients are restrained in their beds either with straps or with medication. Possibilities to go outdoors are often minimal. I often use a comparison to “imprisonment” when talking about the rights of people with memory diseases - the right to
breathe fresh air is better enforced in prisons than in old-age homes.

With this same principle, we could legalise many other kinds of discrimination in our societies. What is most striking is the fact that the proposed legalisation of coercive measures with regard to the care of older people and people with intellectual and developmental disabilities would breach fundamental rights - especially those of disadvantaged people, unable to defend their own rights.

Arguments for the use of coercive measures also reflect the idea of safety of patients and carers. It is true that the outside world may be a dangerously cold place in the wintertime for a person with memory disease, or that a carer may get punched by a frustrated patient. However, legalising the use of coercive measures with regard to the care of people with memory diseases is not really about the safety of the patients and their carers. It is more about a lack of human resources and this is something that needs to be tackled by other measures. The problem is that we do not understand the needs of people with memory diseases. Accordingly, we react to behaviour that makes complete sense from the perspective of memory disabled people with our own rationale and interpretation. How would you react if you were restricted in some way from using the toilet?

Where can one draw the line between the safety and the freedom of the patient? The Alzheimer Europe working group on ethical issues took a closer look at the concept of “reasonable accommodation” which was defined in the UN Conventions on the Rights of People with Disabilities as “the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms”.

What would the fundamental rights of people with memory diseases be in practice? I have been drafting a practical list of rights that need to be secured for older people, including people with memory diseases. The list is nonexhaustive and thus I invite you all to help me completing it.

• The right to make choices.
• The right to decide on one’s place of living.
• The right to eat sufficient and tasty food in peace.
• The right to assistance to maintain one’s physical condition.
• The right to participate in outdoor activities.
• The right to a mind-refreshing activity at least once a week.
• The right to live by one’s own habits andpreferences.

I mentioned other alternative measures which could ensure the security of patients with memory disease and their carers. One of the most useful is education. Obviously, we need more trained professionals to work with people with memory diseases - I call them “memory nurses”. Also, general practitioners and nurses need more information and training on how to treat people with memory diseases.

We need more people to understand the frustration, anxiety, fear and aggressiveness that people with memory disease experience every day. Instead of restraint and psychotropic medicines, these people need comfort and security. These people need to be understood. They need to be respected and their self respect needs to be supported.



Last Updated: Wednesday 28 March 2012