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Sirpa Pietikäinen (Finland)

MEPs speak out on dementia






Sirpa Pietikäinen
























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