Toespraak van minister De Jonge bij de topbijeenkomst van de World Dementia Council

Toespraak | 05-12-2018

Ladies and gentlemen,

I’d like to thank our hosts for the warm welcome we’ve received, and for organising a summit on this very important issue. 

Let me start by telling you a story. A few years ago, in the Dutch town of Doorn, an elderly man was arrested for shoplifting. He’d recently started forgetting things. His keys, his wallet, his appointments. And now he’d forgotten to pay for his groceries. Instead, he’d simply taken them.

The store manager was very understanding. In fact, he was a little embarrassed that his staff had called the police on his elderly customer. To him it was clear that the man hadn’t meant to steal anything. He’d just forgotten to pay. He didn’t need to be punished for it. All he needed was a little help and kindness. So the manager told his staff not to call the police anymore on people who showed signs of dementia. And not to make a big deal about it if they forgot to pay for something. 

The shop was part of a large chain, which from then on started training all its staff to deal with people who looked like they needed help or might have dementia. And this practice soon spread beyond supermarkets. It was adopted by a public transport company. And by the municipalities of Doorn, Amsterdam and many others. 

So 1 small act of kindness and understanding made by 1 store manager, caused a ripple effect across the entire nation. As a result, people suffering from dementia are treated with more dignity.

We now have a nationwide programme to make the Netherlands dementia friendly. It teaches people what to do when they come across someone with dementia.

Dementia takes many forms.

And in 1 form or another, it affects 250,000 people in the Netherlands. By 2040 that number will have doubled. Worldwide almost 50 million people live with dementia. More than half of them in low or middle income countries. And while dementia is a major problem today, we know it will be an even bigger problem tomorrow.

To solve that problem, we need to find a cure, find treatment that works, find answers to all the questions.We’re well aware that we haven’t even found all the pieces of the puzzle yet. Let alone started solving it.

Finding those answers is like running a marathon.You have to start at the beginning and keep putting one foot in front of the other. We crossed the start line 5 years ago at the G8 summit. But we still have a long way to go before we reach the finish line. Like a marathon, there are different priorities at each stage. What’s important today is raising awareness. What’s important today is offering the best possible care and support to people with dementia and their relatives. And what’s important today is reducing the social stigma that surrounds this disease. 

I’ve told you how that’s being done in the Netherlands. And I’m eager to find out about other countries’ efforts. Dementia poses many challenges to communities worldwide. What’s key to the Dutch approach is recognising that people with dementia can have meaningful lives and participate in their community. In the early stages of the disease, people are often able to keep working. In their old jobs or as volunteers. 

The DemenTalent projects in the Netherlands are an excellent example of this. In 1 project, people with dementia do woodland maintenance. In another they work at a farmers’ market. 1 older man reads to preschool children. He now feels accepted and part of the community. Not only at the preschool, but in his neighbourhood as a whole. When the children see him in the street, they call out: ‘Hi Grandpa! When are you coming to read to us again?’ These seemingly small things are very important!

Meaningful activities like these make someone with dementia more active and lively. That benefits informal carers as well. And it gives them something to talk about together. Their lives are no longer confined to the walls of their home. We also shouldn’t underestimate the challenges informal carers face. Supporting them is vital. By helping them understand dementia, but also allowing them to live their own lives. 

In the Netherlands, we guide informal carers by helping them with practical information, by involving them in formal care, and by showing them ways of sharing the burden. We provide respite care to allow primary care givers a chance to catch their breath for a few days, knowing their loved ones are safe and cared for. Or we help find volunteers who take a partner out for an afternoon, so that a caregiver has his hands free for a few hours. 

For patients and their informal carers, dementia is not only a medical condition. The social aspects are equally important. 4 projects focusing on these aspects were recently launched in different municipalities. 

These projects address major questions: 

• What does it mean to have dementia? 
• How do you see the rest of your life?
• How can you participate in society and maintain a social life?
• When do you ask for help? What type of help do you need? And how can you get it?

We’re confident that these projects will lead to lasting improvements in care and support for people with dementia and their families. But providing the best care to people facing dementia now, is not our – and your – only challenge. 

Another important task is finding answers. Finding a cure. Or even finding a way to prevent dementia altogether. That won’t be easy. Dementia research is still in its infancy. To have even the slightest chance of finding answers we will need many expert research groups. It will take the combined efforts of all our best knowledge institutions, and then some.

So cooperation is key. Perseverance is key. And as always, ladies and gentlemen, funding is key.

In recent years, the Netherlands and several other countries have increased their budgets for dementia research. We know that the number of people suffering from dementia will double the next few years. We know that dementia is on its way in becoming common disease number one in the near future. We know this, but we are not doing enough to anticipate this future. 

And to my astonishment, in some high-income countries funding has been reduced or redirected to other research. 

Ladies and gentlemen, To me it is clear as day. If we cut back on funding for research, we’ll never cross that finish line.

I call on all of you to invest, and invest substantially, in joint research on this very important issue. Research in dementia can’t be seen as a pet project, it should be regarded as one of the key priorities in funding for medical research. 

And to live up to these words, the Netherlands today is looking into increasing its investment into Alzheimer’s research. 

Ladies and gentlemen,

I’m sure that every one of us knows at least 1 person whose mind and memories have slowly faded away. Some of you may have parents or grandparents who have gradually stopped recognising you. Who no longer know the people who once meant the world to them.

People with dementia today can participate in research to find a cure, but they won’t benefit from the outcomes. So investing in their care is equally important. And that includes investing in research on how best to shape that care. 

Because when those close to us have dementia, all we want is for them to be as happy as possible. We want them to receive a gentle helping hand when they’re feeling confused. 

And we want them to be cared for compassionately, when they can no longer care for themselves. But what we want most of all, is to make sure that one day dementia will be a thing of the past. 

So, in every decision we make, let’s focus on that goal. Let’s focus on the finish line we’re heading for. 

Like marathon runners, we know that every step is worth it. 

Thank you.