Creating a dementia research agenda with impact

Wednesday, September 11th 2019 – Den Bosch, The Netherlands

In a theatre hall all seats are aligned in a so-called ‘fishbowl’, several circles of seats set close to each other. Our guests trickle into the hall. The room is filled with about 30 informal carers of people with dementia. In several assignments they’re having a conversation about the hurdles they encounter. What are their challenges in caring for people with dementia?

Result: a table full of papers with hurdles and personal experiences.

Friday, September 27th 2019 – Utrecht, The Netherlands

In a church hall, all chairs are again aligned in a ‘fishbowl’. Again, we’re receiving many guests, about 100. This time the room is filled with scientists, healthcare professionals, policy makers, informal cares, and other relevant stakeholders. In smaller groups they talk with each other and come up with all kinds of topics that should be the focus of future dementia research.

Result: lists full of topics and possible themes for dementia research.

Monday, September 30th 2019 – Hekendorp, The Netherlands

In a centre for day care activities for people with dementia, located at a ‘care farm’, we sit at a long coffee table in a living room. There are about seven people with dementia, a couple of volunteers and counsellors, and a moderator. The group has a conversation about what they think about their situation living with dementia. If you could make one wish, what would you wish for?

Result: inspiring conversations and more insight into the situation of people with dementia. They confirm the hurdles mentioned in the previous sessions. They emphasize that they want to live a meaningful life. A life that matters.

Research priorities – Alzheimer Nederland:

  • Prevention and cure of dementia
    • Medical treatment
      • Targets for prevention or treatment
      • Translational research
      • Early diagnosis
    • Risk reduction through lifestyle changes
  • Better care and support
    • Caregiver stress / overburdening
    • Activities for people with dementia
    • Person-centred care in nursing home

These situations are a selection of the meetings that Alzheimer Nederland has organised in the context of creating a new research agenda. They form the fundament for this new agenda, which has a clear focus. Instead of many topics and small steps for each topic, we now focus on just a few topics and bigger steps. In this way, we hope to finance scientific research which has the greatest impact. Our most important message:

Involve the people with dementia and their carers, put them at the helm. In this way, an agenda is created with research topics that really are relevant and that are in line with practice. This will have the greatest impact on the daily lives of people living with dementia and their carers.

Would you like to know more about the process towards our new research agenda? Or are you curious about the research agenda? Take a look at our website:

Minke Kooistra. Advisor scientific research at Alzheimer Nederland