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December 2012: “Living with dementia: Learning from the experiences of people with dementia”

Alliance activities

Alzheimer Europe organised its 14th lunch debate in the European Parliament on 4 December 2012. It was the first time that people with dementia led the debate as they shared their experiences of living with dementia.

Sirpa Pietikäinen, MEP (Finland) hosted Alzheimer Europe’s 14th lunch debate in the European Parliament on behalf of Heinz Becker, MEP (Austria).  It was entitled “Living with dementia: Learning from the experiences of people with dementia.”  Ms Pietikäinen emphasised the importance this debate would have in highlighting the rights and needs of people with memory disabling diseases. She called on policy makers to remember these voices when planning policy and decision-making systems. The presentations by Helga Rohra, Nina Balackova and Daphne Wallace highlighted different experiences of living with dementia. The event was supported by an audience of 60 people consisting of representatives of the European Parliament, European Commission, European Working Group for People with Dementia, national Alzheimer associations and the pharmaceutical industries.

Helga Rohra reminded the audience that the only way of hearing the authentic voice of dementia was by listening to the experts - the people who live with disease.  Ms Rohra was diagnosed in 2006 in Germany with Lewy-body dementia and has since been an advocate for the rights of people with dementia.   In 2012 she became the first Chairperson of the European Working Group of People with Dementia (EWGPWD).

The EWGPWD consists of people with dementia, who actively campaign and advise on issues surrounding dementia. She said that the capabilities of people with dementia differ, depending on the personal characteristics and age of the person as well as the type and stage of dementia. Indeed, members of the group reflect exactly this as they come from different European countries and range from people in their 40s to 70s, with different types of dementia and at different stages of the disease.  She challenged the perception that people often have of dementia as that of an elderly person at the late stage of Alzheimer’s disease. She said therefore that programmes are required which are tailored to specific needs.    

Ms Rohra explained that the EWGPWD had been formed in 2012 with the support of Alzheimer Europe.  The main aim of the group is to be listened to and integrated into society. Although the EWGPWD started work in 2012, Ms Rohra illustrated how Alzheimer Europe been giving people with dementia the opportunity to participate and be heard for over 10 years at conferences, in working groups and in articles in newsletters and magazines. Further, the Chairperson of the EWGPWD is an ex-officio member of the Board of Alzheimer Europe with full rights.  Ms Rohra was particularly delighted that so many people with dementia had been involved in Alzheimer Europe’s 2012 conference in Vienna.

Ms Rohra concluded that the foundation of the EWGPWD is an important step as well as an historic moment in the development of the Alzheimer’s movement. It illustrates how, even in dementia, we can overcome borders and become united and strong. Ms Rohra said that the more a person progresses with dementia, the stronger they become and emphasised that “a person with dementia is as valuable as a person without”. However, Ms Rohra said that people with dementia can only be strong if they are offered the right programmes by politicians and that such programmes can only be developed if people with dementia have been listened to.

Nina Baláčková is 54 and from the Czech Republic and was diagnosed with Alzheimer’s disease in 2007. She was aware of the disease because her mother had passed away with it. However, when she herself had symptoms six years ago doctors could not believe it possible that she had Alzheimer’s disease as they understood it to be a disease associated with older people. Ms Baláčková highlighted that this was worse for her younger friend, Hannah, who, because of a lack of understanding about the disease, had to wait three years and endure a stay in a psychiatric unit before a diagnosis was made. 

After diagnosis, Ms Baláčková found out more about the disease through the Czech Alzheimer’s Society.  She was given support and attended memory training sessions which, through much work, enabled her to recite 44 American Presidents! However, it also resulted in several doctors deciding that the diagnosis must be flawed as they did not believe it possible for a person with Alzheimer’s disease to do this.  On talking with friends from other countries, Ms Baláčková found that such misunderstandings were not unique to the Czech Republic.

Many people think that the only symptom of dementia is that a person forgets, but Ms Baláčková explained that there are other symptoms too.  In her case, she has also lost her sense of smell and taste. She finds that she is often tired and sometimes angry as her life is shorter and she is only too aware that time is more valuable. Ms Baláčková also highlighted the issue of care for younger people with the disease. In the Czech Republic, places in care homes are allocated for people over the age of 60 or 65. Where should she go, she asked? For now, she says she “will fight Mr. Alzheimer and win!”  Calling for action to address the lack of understanding and knowledge about dementia, Ms Baláčková closed her presentation by reminding the audience that “the past is history, tomorrow is mystery and today is a gift and it is for everyone.”

Daphne Wallace is 72 and a retired psychiatrist. At the end of 2004 she was surprised to find herself to be exhausted and stressed after carrying out some locum work. Having worked with people with dementia, she recognised some of the symptoms and after speaking with her colleagues she went to her GP who referred her to a neurologist. The outcome revealed that she had a form of vascular dementia. She believes she received a relatively quick diagnosis, but this was only because of her own personal connections.

She emphasised the importance of understanding the particular disease a person has. This is because each disease interacts with each person’s brain and personality in a unique way. Dr. Wallace explained that the losses she has experienced are not always obvious to others. One change she has noticed is a delay in the message from what she can see to the reaction from her brain. She illustrated this by saying that although she can see a glass with wine in, the message does not reach her brain in time and may result in her knocking it over. She also finds that she is unable to remember faces as well as she used to and that her ability in maths is not what it once was. She notices this loss when she tries to adjust the quantities in recipes from four to two people.  She now has to write down a sum if she wants to adjust these quantities.  Dr  Wallace also said that she used to be able to navigate quite easily but now relies on a satellite navigation system.

Unfortunately Dr Wallace did not have any professional support after diagnosis and she found the adjustment hard. Although she now has a visiting psychiatrist, initially she did not see anyone for 3.5 years after the diagnosis and this left her feeling professionally abandoned.

Dr Wallace also spoke of people who have dementia having a responsibility to speak out for those who cannot. She said that we all have human rights, including people with the advanced stage of dementia, yet their voice cannot be heard. She said that society underestimates the capabilities of people who have dementia and reminded everyone that they are still human, still present with rights to dignity and proper care.

Discussion

Ms Pietikäinen concurred and noted that although we have constitutional rights in the EU with an understanding that all of us are equally important, in reality we have not recognised equal rights to people with memory problems.

Jean Georges, Executive Director of Alzheimer Europe reiterated Helga Rohra’s comment that this event was indeed historic for Alzheimer Europe, as it was the first time we have had an event in the European Parliament where we have people with dementia from ten different organisations and where three of those gave presentations. He asked the people with dementia what would be the one thing they would ask of their MEP if they had the opportunity. Helga Rohra asked that a campaign be made to show that dementia is more than Alzheimer’s disease and that it affects people of different ages and has different symptoms. She also asked that post-diagnostic support be provided so that people were not left with just a tablet. Nina Baláčková said that she would like people to understand more about the lives of people with dementia.  Daphne Wallace said she would ask that the issue of stigma be addressed as it arises from ignorance and it makes the lives of people with dementia more difficult than necessary. Dr Wallace said that people need to understand having dementia is not entirely negative.

Iva Holmerova, Chairperson, Czech Alzheimer Society, said that it was essential that people realise it can happen to anyone, including ourselves and that we will have to cope with it.  She asked what kind of support was most useful on a personal level.  Nina Baláčková said that she found the memory training very important to her as well as being socially included.  Daphne Wallace said she wanted the right kind of support which respected her rights and beliefs as an individual.

Jean-Pierre Frognet, Vice-chairperson of the EWGPWD, explained that he has lived with Alzheimer’s disease for almost five years. He said that he has accepted the disease and told his mother that, unlike having an accident resulting in broken bones, dementia is a disease that doesn’t hurt. Mr. Frognet said he would like doctors to tell people the truth.

Henry Simmons, Chief Executive, Alzheimer Scotland, asked how people were affected when they read of another “potential cure” in the media and asked what advice they would give to researchers and journalists about how to handle research news. Jan Frederick Meijer, Vice-chairperson of the EWGPWD, said that they do give a kind of hope. He explained that he is taking part in several investigations himself but does not have so much hope now. Helga Rohra said that whilst medicine has a role, there are many other non-pharmacological programmes which can help people with dementia. Daphne Wallace said that the media coverage tends to raise people’s hopes but on closer inspection it may be something which is not so significant today. Whilst a search for treatment and/or care is carried out, people need appropriate support and care now.  People need to be able to express the talents they have or even do not know they possess!  Jean-Pierre Frognet spoke of the need for people with dementia to meet. There is a special care facility in Belgium which does not rely on the administering of medication in order to calm people with dementia. Instead, the staff try to establish the root cause of any anxiety/and or challenging behaviour and address it. Knowing this gave great comfort to Mr Frognet, who said should he need to be put into care he would want to be in a place like that.

Sirpa Pietikäinen thanked everyone for their contributions and in particular thanked the people with dementia who had provided a special moment in the Parliament by sharing their lives with everyone.

Closing, Ms Lützau-Hohlbein, Chairperson of Alzheimer Europe, said that it had been made clear during the debate how important it was to include people with dementia. She said that she was proud of the national associations work in this regard. She explained that whilst she understood dementia from the perspective of a carer, that she could only imagine how people with dementia really feel and was therefore extremely grateful to Helga, Nina and Daphne for sharing their personal experience of dementia.

 

 
 

Last Updated: Monday 08 July 2013

 

 
 

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