Toespraak van minister De Jonge bij de topbijeenkomst van de World Dementia Council 2019

Toespraak | 18-10-2019

Ladies and gentlemen,

I would like to thank our hosts for the warm welcome we have received, and for organising this second summit on the important theme of dementia.  It is an honour for me to speak to all of you today.

Dementia has already had a tremendous impact on our society. As this will only grow in the decades to come, it calls for our full attention.

Let me start by telling you a little about the Netherlands. My country’s a small one, home to 17 million people. That’s only 3 million more than the population of the city of Tokyo. But, just like Japan and many other countries, the Netherlands is undergoing enormous demographic changes. Currently, one out twelve inhabitants is over 75 years old.  By 2040, this figure will double and become similar to what Japan is already facing today. And with an increasing number of elderly, both in relative and absolute terms, we expect to see a strong rise in chronic conditions, like dementia.

At present, about 50 million people are living with dementia worldwide. While dementia is a major challenge today, it will be an even bigger challenge tomorrow. On a global scale.

We can already foresee how big the impact of dementia will be. On the people directly affected. On those close to them.  On our societies as a whole.

Because many people who have dementia end up requiring round-the-clock care. Dementia progressively changes a person. As its Latin origin literally says: being out of one’s mind. This is a far too harsh and superficial way of putting it.  But the fact is, that dementia is a failure of the function of the brain, the suffering from multiple cognitive deficits, with many severe consequences.  Anyone who has seen loved ones struggle with dementia knows what a cruel process it is. And with the fading of the functioning of a person’s brain, his or her personality often fades away too.
We must make sure patients receive good care and support. Therefore we need good professionals, working together. But we also need innovative solutions. Because while the number of patients is growing, our labour force is not.

It’s our moral obligation to ensure that people with dementia and those close to them don’t become shut off from the rest of society.  Everyone has a right to grow old with dignity. And that includes feeling part of society.

Yet, at the same time the money and efforts we put into researching ways to prevent, treat and cure dementia is pitifully little compared to that for other diseases.

Going forward, that must change. Not only for the current people and their loved ones, but also for future generations.

But before I say more about the future, I’d first like to take you on a journey into the past. To the 1980s and 90s to be exact. Those were the years when global health and wealth started to increase strongly.  Those were the years when the decades-long Cold War finally came to an end.  It seemed things could only go better year after year.

That’s what we saw.

What most of us did not see, however, was that a new disease was rearing its head. At first, medical researchers were not keen to devote their time to what many called ‘Gay-related immune deficiency’.  They only had vague ideas about why so many of these young men were dying. And what made it even more difficult was the lack of support and interest from governments and universities.

Only when it became clear how quickly the epidemic of HIV/AIDS was taking hold,  - it spread like wildfire, taking milions of lives around the globe - did a global awareness emerge. A huge sense of urgency arose for international cooperation in HIV/AIDS research. Bridging borders, cultures and differences. And that could not happen without funding. From governments, from other financial partners but, mainly, from large donors and fundraising efforts. And those efforts were not without success. Around 15 years after the epidemic first took hold, an effective treatment had been found and – in the West at least – HIV no longer the same as a death sentence.

Today, we are on the verge of another epidemic. One that is quite different. This time, it is not young men who are the victims, but mainly older, vulnerable people. This time, it is not a disease that attacks our immune systems, but our brain, our memory, our personality, ourselves.

Obviously, one cannot directly compare HIV/AIDS to a disease like Alzheimer’s. But there are parallels.

Like in the early days of HIV/AIDS, we still don’t know exactly what causes dementia. And even though dementia already has a huge impact on the lives of many around the world, it still does not spark great interest. Instead, we tend to consider dementia merely as a sad fact of life, even an inevitable part of growing older.

Like HIV/AIDS in its early days, dementia is a globally underfunded area of medicine. The global ratio of publications on neurodegenerative disorders versus cancer, for example, is an astonishing 1 to 12. Let us be honest, what we have been prepared to invest in dementia research so far is next to nothing.

And like HIV/AIDS, the burden of the disease will be more and more unequally distributed. We tend to think of dementia as a ‘rich country disease’. But that’s changing rapidly. In the years to come, dementia will increase most in low and middle-income countries. In 2015, 58 percent of people with dementia lived in low and middle income countries. In 2050 that will be 68 percent.

Dementia’s impact on our societies is enormous. If all people with dementia would live in one country, this country would have as many inhabitants as Spain today. It would rank as the 28th country of the world, in terms of population. By 2030 nearly 75 million  people would live in this virtual country, roughly the present population of Germany. By then, it should become a member of the G7, so to speak. The costs of dementia care, by that time, are estimated at a staggering 2 trillion dollar.

No one should be in any doubt: dementia is one of the biggest medical and social challenges we’ll face in the years ahead. In some countries it already is the main cause of death.

Dementia should be in the hearts and minds of all of us. It is not a rich world phenomenon but concerns all of us: EU, G7, G20 and the UN.

We cannot go on allowing this disruptive disease to destruct our societies. It may not leave us indifferent, we should not accept it as a fact of life, that simply is part of getting older.

Ladies and gentlemen,

We must raise the bar drastically. First and foremost: we should not cope with such challenges as countries on our own. If we do not join hands globally, if we keep looking to others to solve the problem, we will not succeed.

A global epidemic requires a globally coordinated response. Here’s another parallel with the AIDS/HIV epidemic. A few years after the first medicines became available , the Joint United Nations Programme on HIV and AIDS (UNAIDS) was set up. In a similar vein, dementia requires an approach on a global scale.

Of course we see an increasing sense of urgency over the years. But we are still nowhere near a global, effective approach.

If we want to take the battle against dementia seriously. If we really want to have impact, we must stop to do it halfheartedly. We can’t afford to waste more time. We must not hesitate,  we must act now.

So, here is what we need to do:

First of all, we need to strengthen and broaden the impact we have by scaling up the research budget. It is essential that we commit ourselves to increasing our investments to find a cure and develop treatment.

I am ready to do so.

In the Netherlands, we’re working on doubling our research budget in the next few years. Following the footsteps of countries as the US and the UK. The sad thing is, some countries chose to lower their budgets in the past years. If we want to make even a hint of a difference, we have to start taking funding seriously.

Secondly, to succeed we need to focus and coordinate our approach to fight dementia. If we all run our own race, our increased funding will have less of an impact. We have to set up a shared and coordinated strategy in various ways:

• Joint research on a global scale is key to succes. To do so, we have the Joint Programme Neurodegenerative Diseases (JPND). EU countries participate  in this programma as well as a number of non-EU countries like Canada, Australia and Switzerland.  Tommorrow, at the G20 meeting I’ll be calling on all G20 members to play their part and join JPND.  I hope that more countries will take responsibility and invest substantially in JPND.
• In 2013, the G8 took the initiative to establish the World Dementia Council. It now plays an important role in terms of advocacy, promoting the sharing of research data, and gathering the evidence of dementia-friendly communities, among other things.The Council’s ambitions are high, but its resources limited. The WDC efforts should be strengthened, to raise global awareness and advocacy, to foster leadership and capacity.
• The WHO recognizes dementia as a public health priority. In 2017, the World Health Assembly endorsed the Global action plan on the public health response to dementia. But in essence, it is merely a form of policy advice and some practical tools how to address the issue of dementia in individual countries.

I would say: let us build upon these initiatives and combine them in one global strategy. In my view this should be our priority. Let us use the opportunity of  the next Council meeting, in July 2020 in my home country The Netherlands, to work on this new strategy for a worldwide and intensified dementia approach. To that aim I will also invite other relevant key players to this meeting.

Let me finish by making one last remark about the parallels between AIDS and dementia.  As I’ve said, we need to start taking funding seriously, we need to join forces in a common and intensified approach. But that is not all. On top of that, we need to have the fierce and firm believe that we can make a difference. That our struggles will not be in vain.

It took just 1 generation to conquer our panic and fear and to find hope through a new treatment of AIDS. I believe that we are able to overcome the epidemic of dementia. It is my strong conviction that we should and that we can.

Thank you.