Speech by Martin van Rijn, Deputy Minister for Health, Welfare and Sport, at the EU-conference 'Living with(out) dementia'
Ladies and Gentleman,
Look around. What you see are the portraits of people suffering from dementia.
They were painted by the artist Herman van Hoogdalem in honor of his mother. These are paintings of patients in the nursing home where they passed the last years of their lives.
A few weeks ago I was honored to open the accompanying exhibitions in a small theater in The Hague. It was impressive, but it was also confrontational. This is probably also true for you as you regard these portraits. Almost certainly you will also know somebody suffering this disease. Perhaps a neighbor or a slight acquaintance, but perhaps equally, as in my case, one of your parents.
This is the face of dementia, the face of an illness that we must defeat. And it must be done together, of necessity, internationally, because, and I need to tell you one thing: Otherwise we don’t stand a chance against dementia.
For this reason, it is so good that we have come together here for this European conference on dementia. Not only for the struggle against dementia as an illness but also for a meaningful life for those people suffering from dementia. Already in the whole of Europe these total more than seven million. How are they able, also after the diagnosis, to live a meaningful and dignified life?
Throughout Europe and the rest of the world many scientist are occupied everyday trying to answer these questions.
Some of them are mainly busy searching for a cure. They are saying: Let us invest all our money in research into the cause and the means to cure it. And they are right. That has to happen, and I am totally sure that you will agree with me.
But other scientists are saying: Of course that is true, but there is a high probability that it’ll be a very long time before we are successful. In the meantime, let us mainly spend our money on meaningful life for dementia sufferers. And of course, these people also have a point.
Therefore The Netherlands does it differently. We want both. Shall we call it the Dutch Approach. We want both more research into a cure, and better care which leads to a more meaningful life right now.
The first task we can leave to science. Within Dutch Universities centers there are diverse research groups active into both course and medicine. With our Deltaplan Dementia and together with colleagues from your countries because dementia research is fortunately now very internationally orientated.
The Dutch government is supporting this research with many millions. And I'll assure you we'll keep doing precisely that!
But The Netherlands is doing more because the second task, better care and then place amongst us, we cannot just leave to science. Naturally this is the job for medical care, for the specialist and family doctor and nurse. However is it not also the task of the partner, the family and friends and the neighbors the bus driver, the community policeman and shopkeeper? It is the job of us all.
This is really my main theme for today.
Dementia is an illness of many stages. I compare it sometimes with journey in which you stop at almost every station in the landscape of healthcare.
The first stage: that is the moment that the partner notices that there is something strange happening. A forgotten appointment or the name of a good friend. But of course everyone can be forgetful from time to time. Then comes then second stage: the diagnosis. The doctor who says : this is not forgetfulness . Your partner is ill. You have to be very attentive and find somebody who can help you in this.
Between these second and subsequent stages the traveller can remain very long. He fights against the signs and it can go well for a long time maybe with guidance and support from the family doctor, obviously medicine. And later; more care and more professional help.
Therefore we have two questions to answer: How can we postpone the arrival at the last stage for as long as possible, who knows even prevent it at some point in time? And until that time, how can we make sure the journey is as comfortable and uneventful as possible?
We can all help. As I said: care of elderly people with dementia is something that concerns us all. In the Netherlands, 70 per cent of people with dementia live at home. In your country the figure may be even higher. They live in our village, our neighbourhood, our street. Many of them continue to function quite well for a long time. They don’t want to be regarded as ill, an object of pity. They play sports or cards, sing in the local choir.
The only thing they sometimes need is a little extra attention, a gentle nudge in the right direction. They benefit from people who realise what’s going on when someone is confused at the hairdresser’s or boards a bus having forgotten their destination.
And this is what brought us to the idea of a dementia-friendly society. And a campaign we are proud to present here today. Actually, the idea behind this campaign sprung from a telephone conversation. A year ago a nice and proper lady in Amsterdam got a phone call from the police in Doorn, a small town in the middle of our country.
Her mother lived there. The police officer said: Your mother has been arrested for shoplifting can you please come along? The woman was understandably shocked.
On the way to the police station she realized that her mother was, after all, not just a little forgetful. She forgot not only appointments and friends’ names . She was now also forgetting to pay at the supermarket. She was ill. Her train had left the first station.
But however regrettable this incident was for the woman and her mother, it was also the start of something very special. The owner of the supermarket had received and understood the signal. He called all his staff together and said: we’re not going to report people who are forgetful to the police, we’re going to help them. So from now on we’re going to say ‘Shall I just put that back for you?’ ‘Would you like me to help you pay?’ ‘Can I help you find anything?’.
A year after this incident I went to that shop in Doorn to award it the title of ‘dementia-friendly supermarket’. A large sign in the window now announces the fact, and the manager is rightly proud of it.
And because the shop is part of the largest supermarket chain in the Netherlands, there are now lots more doing the same thing. Staff at many branches have been trained in how to deal with people with dementia. And so we found we had a major partner in our quest for a dementia-friendly society.
After the supermarket chain came the biggest bus company. And after that various municipalities among which Amsterdam the largest city of The Netherlands, where we are guests today. And new partners are joining all the time: from banks and insurance to campsite owners. We are organizing courses for the police, the fire service. We are starting a movement; together we are making a dementia friendly society.
As Deputy Minister for Health, Welfare and Sport I have my own responsibility.
To ensure good home support, appropriate to the circumstances. An expert district nurse who helps and keeps an eye on how things are going in the home.
A family doctor who is trained in the treatment of dementia. A case manager you can call at any time. So that your partner always knows: I’m not alone in this.
During this whole journey that the patient finally has to complete there is always one professional to fall back on. Somebody who knows the route, but also the traveller him\herself. This is why I’ve sketched out these conditions, this is my task.
Ladies and gentlemen,
Europe takes dementia very seriously. We are looking very carefully at all potential cures, because you and I know what it is like when this disease hits one of your parents so hard that every visit is a challenge. When you wonder every time whether you should take the children, because you would really prefer them to remember grandma as she was. This is the harsh reality. And it is why I say: we are taking this disease seriously and investing more in research.
But it is also time to take the person with dementia seriously. The vast majority of patients live at home, and that works pretty well. We are currently talking about 260,000 people in the Netherlands, but in thirty years’ time it will be 400,000. They will be living in our towns, our villages and our neighbourhoods. We will have to learn to cope and to look out for them.
The people in these images have passed that stage. I am well aware of that. They are approaching the final station. But my message is: we also have to focus on the earlier legs of the journey. The time after diagnosis, when there is still plenty of scope for moments of joy that brighten up a person’s life.
The people on this journey are the people in our lives: our relatives, friends and neighbours. Let’s help them as much as we can along the way.
You. Me. Us. Together, in a dementia-friendly society.