Since August 2024, Ellis Bartholomeus has been a PhD researcher within the QoLEAD consortium. In her research, co-design is central: how do you develop AI solutions for people living with dementia with them, instead of about them? With a background in design, a strong affinity for communities, and personal experiences with dementia, Ellis brings a unique perspective on technology and care. We spoke with her about her motivation, her research, and her view on the future of dementia care.
From design to dementia care
Ellis studied at the Design Academy Eindhoven and lives in Amsterdam, although she currently works mainly in Eindhoven. She feels at home in large cities and moves effortlessly between different worlds: design, technology, care, and research.
Early on, she became fascinated by processes and systems. Not so much the ‘solution’ itself, but the path towards it interests her most.
“That focus on process was always there. At the time, design thinking didn’t even have a name yet, but that was already how I worked.”
This process-oriented perspective also shaped her work with digital products and games.
“Games are never finished. You keep learning, testing, improving. That fits very well with how I look at innovation.”
A personal drive
Her involvement in dementia care is deeply personal. Dementia runs in her family: both her grandmothers, several aunts, and her mother lived with dementia.
“The fear of losing my cognition one day has been part of my life for a very long time.”
Based on these experiences, Ellis began experimenting with technology — initially in very practical ways to support her mother, but also to help herself cope with loss and remembering.
“Many people don’t live against dementia, but with dementia. Their loved ones sometimes struggle with it more than they do.”
Why a PhD – and why QoLEAD
The PhD position at QoLEAD immediately caught her attention and stayed with her. Although an earlier attempt in academia had not worked out, this opportunity felt different.
“I’m very practical and come from the private sector. Back then, I didn’t quite fit within the university. But my curiosity about how systems work — and how you move within them — actually fits research very well.”
What particularly intrigues her is the contrast between artificial intelligence and dementia: technology that ‘thinks’ and learns, versus human cognition that changes.
“That tension between the growing ‘cognition’ of AI and the declining cognition in people with dementia continues to fascinate me.”
Research: co-design as a starting point
In her research, Ellis focuses on co-design: designing together with care professionals, organisations, people living with dementia, and their loved ones. Not testing at the end, but jointly determining what is needed from the very beginning.
“When do we actually ask what the real needs are? An end-user test at the end is often already too late.”
Within QoLEAD, she was among the first to deliver a concrete product: a community plan centred on collaboration. She noticed how different the ‘languages’ within consortia can be.
“Finding common ground is essential. Without it, there is no support and no credibility.”
Working together in QoLEAD
Ellis experiences working in a large consortium as educational, but also challenging. She feels a strong connection with the team at the Expertise Centre Dementia & Technology (ECDT), where there is ample room for exchange and experimentation. Workshops play an important role in this.
At the same time, she sometimes describes her position as ‘Ellis in Wonderland’: occasionally naively lost, searching for connections between disciplines, organisations, and perspectives.
Community, creativity and inclusion
Outside her PhD, community building has been a recurring theme in Ellis’ life for more than ten years. Inviting everyone to contribute in their own way is a core belief.
“Not because they have to, but because people want to.”
This philosophy is also reflected in her view on co-design: working together on something that is ultimately carried by the community itself. Autonomy, connection, equality, and diversity are key values.
A surprising fact?
Ellis is a ‘graffiti knitter’: she creates soft, warm street art.
Looking ahead: dementia care with room for difference
Ellis hopes that dementia care will fundamentally change in the coming years, with more attention for neurodiversity, talents, and different ways of being.
“Not thinking: you have dementia, but: hey, you do things differently — and we can learn from that.”
She sees hopeful developments: the stigma around dementia has decreased and more positive stories are emerging. Through her research, she herself has also come to view dementia differently.
“It is part of life, part of evolution. It doesn’t immediately mean that you lose yourself, but that something changes.”
A message for future researchers
For future PhD candidates and professionals in dementia care, Ellis has one key message: seek connection, especially where it does not seem obvious. Cohesion and genuine involvement ultimately make the difference.