Crowdtech × Alzheimer Nederland
“No one should have to go through dementia alone”
For more than ten years, Alzheimer Nederland has been working to make sure that people with dementia, and the carers who look after them, are never again invisible to the people who make decisions about their lives. What began as a small advocacy panel has grown into a research panel with real impact. This is their story.
A problem behind closed doors
Dementia does not announce itself. It settles quietly into households and routines, into the lives of families who often carry the weight entirely alone. Carers regularly give up their jobs, their social lives and even their own health to look after someone they love. Yet proper support for this group is still far from a given.
Around 320,000 people in the Netherlands live with dementia. Behind almost every one of them stands a carer, doing the unseen, unrelenting work of care.
Alzheimer Nederland wanted to change that invisibility.
In 2012, the Advocacy team made a strategic choice: to build an infrastructure that would help them listen better to people with dementia and their carers. Directly. Continuously. And with enough hard evidence to walk into the Binnenhof in The Hague and say: this is what thousands of people are really going through.
There was no single dramatic turning point, more a quiet realisation. Susanne’s predecessors saw that they had no figures about their own target group, and that they needed hard data to lobby credibly.
Individual stories were not enough on their own. They wanted an evidence-based approach, with experiences collected systematically and backed by data.
The answer was obvious: collect those figures themselves. A panel proved to be the best tool for the job. It was quick to set up, easy to scale, and ideal for an organisation that regularly has to respond to policy developments as they happen.
From 600 to 4,000: a decade of growth
What started as a panel of 600 carers has grown significantly. Today the Alzheimer Nederland Panel has more than 4,000 carers and over 300 people with dementia, and the ambition does not stop there. The aim is to reach 10,000 panel members in the coming years.
That growth is a sign of trust. An overall response rate of 22% says something remarkable: these people do not simply sign up, they turn up. Consistently. Because they feel heard.
One figure captures the human side of the panel better than any response rate: 47% of panel members say they feel more supported because they belong to it. The research produces valuable data, but the feeling of being heard may matter just as much.
“This group really needs a platform where they are heard. That is what the panel gives them, and I am very proud of it.”
Susanne van den Buuse, Researcher & Advocate, Alzheimer Nederland
The platform behind the panel
Building and running a panel on such a sensitive subject, and on this scale, takes an infrastructure that works as hard as the people who use it. That infrastructure is Crowdtech.
Behind the scenes, the Crowdtech platform handles everything this panel relies on:
- Three sub-panels: people with dementia, carers and care professionals, all managed seamlessly in one place, with targeted communication and segmented insights.
- A smooth experience: it works on any device and is designed for people who often have little energy and little time. When a carer can spare only a quarter of an hour, every second counts.
- Full GDPR compliance: so that sensitive medical and personal data is handled with the care this group deserves.
Impact beyond the numbers
Over ten years, the panel has produced insights that have changed lives. One study found that carers spend an average of 37 hours a week providing care, the equivalent of a full-time job. It became a cornerstone of national advocacy.
Year after year, the Dementia Monitor shows that carers still do not receive enough support, which keeps the issue alive in political and public debate.
Panel research also led directly to the creation of the ‘dementia-friendly hospitals’ working group. The panel research had shown that hospital staff often failed to recognise dementia and often did not involve carers properly in decisions about treatment.
Hospitals now also share what they know and what they have learned about becoming dementia-friendly in a dedicated knowledge network.
Panel input directly shaped the criteria for dementia-friendly housing, and those criteria now form the backbone of Alzheimer Nederland’s housing strategy.
The moment that mattered most
In policy, timing is everything. When the Social and Economic Council of the Netherlands (SER) began work on its advice on ‘Mantelzorg en Werk’ (caring and work), Alzheimer Nederland had only a few months to make the voices of working carers count.
They teamed up with MantelzorgNL and Stichting Werk en Mantelzorg, and together they got more than 700 working carers to complete the questionnaire on the Crowdtech platform within two weeks.
Along the way they gathered not only statistics but stories too. Hard data alongside personal testimony. Figures that policymakers could quote, and quotes they could not ignore.
The results went straight into the SER’s advice to the House of Representatives. The House has since committed to a broad support plan for carers.
“It is our work with partners that lets us increase our impact. With Crowdtech’s reliable software, we can concentrate on what really matters: listening to our people.”
Susanne van den Buuse, Researcher & Advocate, Alzheimer Nederland
Then and now
| Panel members (people with dementia) | 0 (2012) → 300+ today |
| Panel members (carers) | 600 (2012) → 4,000+ today |
| Ambition | Growth to 10,000 members |
| Response rate | 22% |
| Members who feel more supported | 47% |
| Policy result | Including a support plan for working carers |
| Years of partnership | 10+ |
What comes next
The Alzheimer Nederland Panel is not standing still. The ambition to reach 10,000 members is supported by active recruitment through social media, newsletters and large-scale studies such as the Dementia Monitor, which on its own brought in more than 800 new members in a single year.
The panel is also widening its reach within the organisation. Since 2018, teams beyond Advocacy, including Scientific Research, have used it to test research proposals, campaigns and websites, and to involve people with dementia and their loved ones in their plans.
The aim: that everything Alzheimer Nederland does and decides is based on the wishes and needs of people with dementia and their loved ones.
Alzheimer Nederland did not simply build a research panel. They built a movement, in which thousands of people who once went through dementia in silence now have a direct line to those who stand up for their interests.
Crowdtech is proud to be the infrastructure behind that voice.
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