From recognition to action: young carers make their voices heard in Berlin
Young carers across Europe and the world convened in Berlin from 20 to 22 October, to participate in Eurocarers Young Carers Working Group and 5th International Young Carers Conference (IYCC). Under the theme “From recognition to action: Supporting young carers in a changing world”. Over 300 researchers, professionals, policymakers and young carers came together, highlighting the importance of this topic.
Co-chair of the Eurocarers’ Young Carers Working Group
During the Working Group meeting, a co-chair was elected for the very first time. The honour went to Marjet Karssenberg from the Netherlands, who has been a member of the group since 2019.
“I’m honoured to have been elected,” says Marjet. “After so many years as a member, it’s wonderful to take on this role and contribute in a different way.” Together with Svetlana Atanasova (EYCWG Coordinator) and Michael Buynsters (EYCWG Chair), she will continue to shape the Working Group. How the coming period will be organised is something she is keen to decide together with the group.
Her mission is clear: to keep young carers as closely involved as possible in what happens at European level. “For young people, that often still feels rather abstract. I’d love to see it become clearer where we can actually have influence, and for there to be more feedback on what we’ve already achieved. If the Working Group’s impact becomes more visible, more young carers will stay involved and more young people will be willing to make their voices heard.”
Pre-conference: from collage to key message
The pre-conference, too, was dedicated entirely to young carers. Guided by Canadian partners Oliver Fitzpatrick and Rebekah Gold (Canadian Centre for Caregiving Excellence), the young carers worked on the message they wanted to deliver at the end of the conference. They did so creatively: through collages.
Each young carer made their own collage in response to questions such as: What does being a young carer mean to you? What other issues and identities have shaped your experience? These led naturally to the final question: Why should young carers have a voice in shaping the future?
When the collages were brought together, five key messages emerged, which the young carers presented at the closing plenary:
- See Us – both within their families and beyond, young carers feel invisible.
- We Exist in Systems that Don’t Understand Us – being seen is not enough; it is also about understanding the complexity, and the highs and lows, of caring.
- We Worry About Our Futures – what goes misunderstood today shapes how young people look ahead to tomorrow.
- We Are Learning to Navigate Chaos – especially in uncertain times, that resilience deserves to be valued.
- Advocacy is Already Our Job – their experiences bring knowledge and perspectives that must be heard wherever decisions are made.
A global conference full of recognition
Over two days, around 100 sessions took place and 42 posters were presented. Of the roughly 300 participants, more than 50 were young carers. Keynote speeches were given by, among others, Prof. Saul Becker, Elke Büdenbender, First Lady of Germany, and Stefan Evers, Deputy Governing Mayor of Berlin and Senator for Finance.
What stood out was that, despite different care systems and cultures, the challenges are strikingly familiar across the world. That created plenty of room to share knowledge and inspire one another. And one lesson came through again and again: the voice of young people is indispensable. It is not just about participation, but about genuine co-creation with young carers themselves. Nothing about us, without us.
Marjet saw this reflected throughout the programme: “You could tell this conference was shaped together with young carers and researchers. In Manchester in 2024, the focus was still mainly on the impact of caring at a young age. This time, it was also about how we can reduce or prevent the negative effects, and what we ourselves can contribute. It’s a growing movement – together with us!” Many Working Group members were also actively involved in various parts of the conference, including through contributions from their own countries.
Loss and grief: caring doesn’t stop when someone dies
One of the most powerful moments was the day-two panel discussion on Loss and Grief, chaired by Andy McGowan (Carers Trust), with two young carers. Personal, inspiring and confronting, it made clear that you do not stop being a young carer when the person you cared for dies. The impact of caring carries on, and in the aftermath there is still so much that needs care and attention, especially at a young age. It is a theme we should certainly be doing more with in the time ahead.
Awareness, Support, Choice – and now: action
In the opening plenary, the young carers reiterated their statement from Manchester 2024: Young carers are usually the group of young people that are seen, but very rarely heard. Their three pillars remain as relevant as ever:
- Awareness – without recognition, there can be no support. Professionals and policymakers need to know who young carers are, what they do and what they need.
- Support – unconditional and available to every young carer who needs it, so that the young carers of today do not become the cared-for of tomorrow.
- Choice – not the choice of whether to care, but the right to their own identity and a life beyond caring.
This year, they went one step further: from recognition to action. They challenged the audience to reflect, throughout the conference, on what “a changing world” means for young carers. Which changes – from money and mental health to technology, conflict and migration – affect them most, and what policymakers and professionals could do differently. They shared their own answers at the closing plenary, with a clear call to action:
In this changing world: we are the next generation. Don’t assume what we want and what our future has to hold. Let us have a choice. Let us use our voice. Let us shape our future.
More information about the conference: www.iycc2026.org
