Toespraak van minister Helder (VWS) bij de defeating dementia conferentie in Den Haag. Deze vond plaats op 2 oktober 2023.
Toespraak van minister Helder (VWS) bij de defeating dementia conferentie in Den Haag. Deze vond plaats op 2 oktober 2023.
Ladies and gentlemen,
We all know the cold hard facts, and they are sobering.
Worldwide, 55 million people have dementia.
A figure that’s set to increase to 139 million people by 2050, according to the World Health Organization and Alzheimer’s Disease International.
By 2040, dementia will be the main cause of death in the Netherlands.
And it will also take up the biggest chunk of the healthcare budget.
The burden on healthcare systems and healthcare workers is already enormous, and will only continue to grow.
And then there’s the immeasurable suffering of patients as they slowly lose their grip on life – and ultimately on themselves.
And the immeasurable sorrow of patients’ families and carers. And the pressure they are under.
Ruthless, overwhelming, sobering facts.
But may I put a face and a name to these bare facts?
My father's face, for example.
My father was a very resourcefull and energetic person. But he deteriorated sharply later in life.
At one point he could no longer be stay at home with my mom, with whom he was married for over 60 years.
He was almost blind due to macula degeneration, quite deaf and became more and more trapped inside.
Was he bored, depressed or was it dementia?
His behavior became more and more erratic and the diagnosis dementia was set.
He was admitted at a nursing home and I still remenber the one tear down his cheek upon arrival. Are you sad? Yes. Why?
Because this is the end station, i’m put away. But much to our surprise the nursing home brought structure, reduced medication, a little bit of exercise and when he passed away at 90 his cognital skills were almost normal.
Looking back he could have had better care, at an earlier stage, and maybe more happy times with my mother.
But this was fifteen years ago, and we did not yet have the knowledge we have now.
Let’s give dementia a second face.
Christa's. She lives with her husband and two children in Amersfoort.
Christa was diagnosed with Alzheimer's at the age of 47.
She was having difficulty at work and she thought she was having a burn-out.
Having the diagnosis was confrontational but also a relief.
Last year I met Christa at the launch of the Dementia Friendly Together youth program.
This program teaches young professionals how to recognize people with dementia and how to deal with it.
For instance when attending a person with dementia in a restaurant or at the hairdresser.
Christa is a busy mom, trying to keep everyday life organized with notes, tricks and a disarming honesty.
She uses her humor to combat the sadness and anger she feels about her illness.
She does that very courageously.
If you ask her how she sees the future, she says: 'What is the future? All the plans I had are no longer possible. I live day by day."
Another face is Rob's. A resident of the House of Time in Amsterdam.
This is a community center for people with and without dementia.
Rob is featured in the impressive television documentary Human Forever by Teun Toebes.
You can see a brief summary today at this conference.
Until recently, Rob was one of Europe’s leading cardiologists.
Until young-onset dementia put an end to his career.
When he explains that he used to fly around the world for his profession, there’s a word he can’t come up with. “What is the word for getting together?” he asks, seeking for help.
“Conference’ is the elusive word.
But he doesn't mind that this happens sometimes. "It’s not going to go away anyway", he says.
So, you see dementia has many faces, different faces, familiar faces.
It could be the face of the person across from you at the table, or the person lying next to you in bed.
The person you’ve shared your whole life with, raised your children with.
And let’s be honest: it could also be the face you see in the mirror.
Because dementia doesn’t discriminate.
The maker of ‘Human Forever’ wonders: when it comes to tackling dementia, do we just look away until it’s our turn?
My answer to that question is: no. And I know that also goes for everyone here.
All of us here today have an important, shared mission to carry out. A mission to accelerate our collective efforts.
I’m driven, in particular, by a feeling of impatience.
Impatience, because I can no longer explain to society at large why we’re not stepping up our efforts.
Because we know exactly what we need to do.
- We need to promote and financially support scientific research, both nationally and internationally.
- We need to join forces worldwide to renew the priority we give to dementia. And make sure it stays a priority.
- We need to continue working on high-quality, person-centred care and support for people with dementia.
- So we can improve their quality of life, improve their outlook and shift the balance towards defeating this disease.
In 2013 during the G8 Dementia Summit in London we’d already agreed to work together on these goals, and we were well on the way to achieving them.
And then, in 2020, the COVID-19 pandemic erupted.
It would be great if this conference could serve to revive our collaboration, and take it to a higher level.
Allow me to list the actions we need to take.
We can only beat dementia if we keep investing in research.
New technologies, risk reduction and new medicines demand international cooperation and coordination.
This will yield results more quickly and ensure the solutions are more affordable.
So I call on everyone here today to increase our investment in research. Ambitious goals require ambitious funding.
What’s needed, too, is international cooperation.
This ministerial conference reflects our wish to achieve results together.
But in a turbulent world, it’s not easy to stay focused on stepping up our efforts.
It would help if we built a more permanent framework for cooperation.
An expert group at government official level, for instance, to keep our efforts on track.
Working closely, of course, with all the international organisations involved in the fight against dementia.
It’s also vital that we keep working in the years ahead to ensure that people with dementia are treated as valued members of society.
That they’re able to take part in social life, engage in meaningful activities.
That they’re challenged and stimulated.
Science shows that this can enhance cognitive functioning in many people with dementia.
Effectively giving them their lives back.
All this requires a major change in thinking among many of the parties involved.
We need to promote and facilitate this new approach. It’s not easy, but necessary.
And of course we need to ensure that people with dementia have access to high-quality care and support.
With professionals working in harmony with informal carers – a patient’s partner, family and friends.
Without isolating them from society making sure they’re part of society. This too demands ongoing investment.
I’m very much aware that this is quite an ambitious list. But to me it’s not really just a wish list. It’s a moral obligation.
An obligation to people with dementia, to society and to ourselves.
We want to be able to look all those people in the face. Not only the face at the table or in bed, but our own face in the mirror, too.
Knowing we’re doing everything we can to beat dementia.
Thank you.