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Toespraak minister Helder tijdens de World Dementia Council Summit 2022
Minister Helder (Langdurige Zorg en Sport) sprak op 28 maart 2022 bij de World Dementia Council Summit in Londen. De tekst is alleen in het Engels beschikbaar.
|Verantwoordelijke||Ministerie van Volksgezondheid, Welzijn en Sport|
Ladies and gentlemen,
A woman with only mild symptoms of dementia is diagnosed at a very early stage. The diagnosis is immediately followed by personalised treatment and support.
The goal is to slow the progression of the disease. To help her make the most of her abilities instead of focusing on her disabilities. This means- fitting out her home with home automation devices that will give her more independence. Complemented with the necessary home care. Imagine her being seen as a valued member of society, participating in society, without stigma. So I’d say: Diagnosed yes; stigma no!
Thank you for the opportunity to share my vision on the future of dementia. In my former role as CEO I always said I was in a hurry. In my current role as minister I’m even more in a hurry, to cure this disease. Imagining an ideal future is only a start. To get there we must travel a long and winding road. But if we don’t start walking now, we will never arrive. And if the projections are right, we better start walking now.
These projections say dementia will be the most important ánd most expensive cause of death in The Netherlands in 2040. Even more important: a change in lifestyle could prevent many cases of dementia.
And of course, if we want to make progress without getting lost, we need a road map. Which brings us to our national approach on dementia in The Netherlands.
Nearly a year ago we presented the 4th dementia plan, the National Dementia Strategy 2021-2030. Which is our roadmap in the Netherlands.
It is a 10-year plan that focusses on 3 main themes:
First: A world without dementia: supporting pioneering research, on a national and international level, into treating, curing and preventing dementia. The ultimate goal is – of course - to eradicate dementia altogether. But for the time being, we have to accept that dementia cases are still increasing.
This brings me to the second theme in our national strategy: personalised support for people living with dementia. Support that meets our dementia care standard, which was revised in 2020. This means: high quality support and care that meets the preferences and needs of people living with dementia and their families and caregivers. This support and care should focus on their abilities, because…
Persons with dementia, as we see it, matter.
And that’s our third theme. They are valued members of society.
We should help them make the most of their abilities, like Arthena just mentioned, instead of focusing only on compensating for disabilities. By the way, Arthena, every time I’m in London I’m lost as well.
To sum up: The national dementia strategy aims first of all to improve the quality of life of those living with dementia. But the ultimate goal is a world without dementia. To reach this goal we need research - lots of research. We doubled the national dementia research budget to 140 million Euros over the next 10 years. This enables us to fund ground-breaking research by multidisciplinary consortia. Each research consortium has a specific research area: fundamental research; diagnostics and disease prognostics; risk reduction; and young-onset dementia. We offer four years of funding, with the option of a 4-year extension for research that shows promising results. And within this research programme, we promote public-private collaboration as well.
We have set ambitious goals for our research programme. And we are well aware that it’s impossible to reach these goals if we don’t work together, internationally. Right now, 30 countries worldwide collaborate in JPND, the Joint Programme on Neurodegenerative Diseases Research. It’s a very successful programme and I’d like to take this opportunity to call upon you, here in the room, to participate, if you haven’t done so yet. I happen to know that both JPND’s chair (prof Philippe Amouyel) and vice-chair (Jacqueline Hoogendam) are present today, so feel free to reach out to them during the breaks and connect.
Ambitious goals require ambitious funding. That’s why the Dutch government intends to organise an international high-level conference on dementia this autumn. The aim of this conference is to generate renewed interest in the challenges that dementia poses to post-Covid society and to initiate concrete actions, such as increased governmental investment in dementia research.
So much for the future. Let’s consider where we stand today. For the past 2 years we had to prioritize the Covid-19 pandemic over other pressing health issues, like dementia. Unfortunately, dementia wasn’t stopped by this pandemic.
No one should be in any doubt: dementia is one of the biggest medical and social challenges we’ll face in the years ahead. We have to take more action now! As I said, as a CEO I was in a hurry, as a minister I’m even more in a hurry. Our societies are ageing and the number of people living with dementia will grow. But we shouldn’t forget about the people living with dementia right now. That brings us back to themes two and three in our Dementia Strategy: ‘People living with dementia deserve personalised support.’ And ‘People with dementia are valued members of society.’
In The Netherlands care professionals have recently revised our national dementia care standard. This standard gives an overview of the support and care for people living with dementia, and focuses on personalised support and care. That has already made a difference, for both professionals and patients. But I think, I truly believe, we can do even more.
I feel that we can take an extra step and introduce more technology in our support and care. Not to replace the human in care, but to enable the client to live more independently, while still ensuring a safe environment. A smart environment. And this environment isn’t necessarily a nursing home. In my experience as a former CEO of a care provider, it is possible to teach people to make better use of their abilities. And this can delay - or even avoid - the need for nursing home care. Which also addresses important labour market issues!
And if we train people with dementia so they can continue to live more independently, they can continue to take part in society as well. Which brings us to our third main theme: People with dementia matter. People with dementia have talents. Sometimes they just need a helping hand to make use of their abilities. In The Netherlands we have a national dementia friends programme, which not only supports ‘traditional’ dementia friends but also provides training for groups in neighbourhoods and for younger people.
On top of that we have what we call Dementia Talent Projects, in which people with dementia are encouraged to do volunteer work, as you mentioned also, Arthena. At local clubs, community centers, in shops or by doing maintaince work in parcs and woodland. All tailor made to the wishes and capabilities of individuals living with dementia.
Research shows that participating in this Dement Talent Programme is beneficial. People experience a higher quality of life and it eases the burden on informal carers.
Over the past 4 years in my capacity as CEO of TanteLouise, I shared some examples with you, of how people with dementia can still learn and relearn. How this helps them, even at an advanced stage of dementia, to regain some of their independence. Thus improving their self-esteem and their willingness to be more active.
And research shows that those programmes are significantly able to improve the quality of life. So even with advanced dementia, people can enjoy freedom, avoiding forms of forced care. Living with dementia in as much individual freedom as possible should be part of how we shape the future, but also how we care today.
Ladies and gentlemen,
This is where we stand today, when we look to the future and consider the dementia landscape. I’ve sketched a primarily Dutch landscape, but that doesn’t mean that it’s flat and easy to navigate.
I trust that its contours will be familiar to many of you and perhaps even inspiring.
And I’m certain that the Dutch participants in this summit will learn a great deal from what other countries are doing. And that is what we should do. We should build this network even further, learn from each other and steadily go forward in building as much knowledge as we can, to fight dementia.
Thank you very much for your attention.