Creating a culture of involvement for the UK Dementia Research Institute

Professor Bart De Strooper has been announced as the head of the UK's first Dementia Research Institute. Find out what this means for dementia research.

Announced today, Professor Bart De Strooper has been selected from a competitive pool of international candidates to lead the UK’s first Dementia Research Institute (DRI).

People living with dementia and carers from the founding charity networks supported the recruitment process, demonstrating a commitment to involving people affected by dementia in the creation and running of the Institute from the outset.

Bart De Strooper

What is the Dementia Research Institute?

The Dementia Research Institute marks a combined investment of £250m from the Medical Research Council, Alzheimer’s Society and Alzheimer’s Research UK that will transform the landscape of dementia research in the UK.

As Director, Bart has set out his vision to build an institute of international repute with a central focus on the biological mechanisms underpinning dementia, coupled with a broad vision and strategy to support research in care, technology and public health.

Involving people affected by dementia

At Alzheimer’s Society we have pioneered patient and public involvement in dementia research through our award-winning Research Network. We are bringing this expertise to the DRI to ensure the voices and experiences of people affected by dementia shape its work throughout. Recruiting the DRI Director provided the first opportunity for meaningful involvement.

Six people with dementia, carers and former carers were invited to form a panel to meet with each of the shortlisted candidates. Sara Gregson from the Alzheimer’s Society Research Network and a former carer for her mother with dementia chaired the panel:

‘It was an honour to be asked to chair the lay interview panel and to hear and speak to the potential candidates, all of whom had significant backgrounds and experience in dementia research. It was slightly daunting - but then that was why we were interviewing them – to see if they could tailor their language and ideas so that we, as lay people, could understand their vision and assess their suitability for the role.’

Before they met the candidates, the panel discussed and agreed the questions they wanted to ask. As a group, they decided to focus on:

  • The candidates’ views on what should be the priority in dementia research
  • The use and sharing of patient data
  • How to encourage more diversity in research participation
  • The role of patient and public involvement in the DRI
  • The candidates’ approach to communication

Dementia Research Institute

The panel requested to be introduced using first names only so that no prior knowledge about the candidates would influence their discussions. Each candidate gave a short presentation of their vision for the institute and then the panel asked their questions, which inspired four fascinating and very different conversations.

Kathy Gill took part in the panel with her husband Paul who is living with dementia. She reflected:

'All the candidates took the lay panel interview very seriously, listened attentively and answered the questions in language that I could easily understand, without being patronising. It was very empowering to know that our experience as service users was important and our contributions of use,’ 

At the end of the day, Sara presented the group’s feedback to the Directorship Advisory Panel.  This included the highlights on each candidate including their preference to appoint Professor De Strooper to the role.

Professor Bart De Strooper commented:

‘It was a motivating experience to talk about my vision for the Institute with people personally affected by dementia. The panel asked insightful questions, and formulating answers while considering their close experience was a challenge; the urgency to bring change was clear to see,’

Bart comes to the DRI from Leuven in Belgium where he is a clinician, researcher and Scientific Director of the Vlaams Instituut voor Biotechnologie. His work focuses on the mechanisms that cause cell death in Alzheimer’s and Parkinson’s disease and has made a major contribution to our understanding of the role of the protein gamma secretase in the production of amyloid plaques.

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May I utter a caution about selecting Dr De Strooper? His research is severely restricted in scope, as he confines himself to genes and disease mechanisms. He does no research into the root causes of, for example, Alzheimer's or Parkinson's, for which there is much emerging evidence of simple and avoidable nutritional causes [refined seed oils and fatty diet, respectively]. His leadership is therefore extremely unlikely to ever lead to the discovery or confirmation of simple nutritional causes of neurodegenerative disease, and without knowing these, there can be no prevention.

Hi Dr Peers, many thanks for sharing your feedback with us.

The Dementia Research Institute will focus on a range of different research angles, with an emphasis on multidisciplinary research. You may be interested in this Q&A that Professor De Strooper did with AlzForum, about his vision for the Institute:

Thanks again, and best wishes.

I have lived with Alzheimer's Disease for 6 years and as an Alzheimer's Society Ambassador I was delighted to serve as a member of the interview panel for this post. Prof de Strooper answered all of our questions extremely thoroughly on a range of issues connected to dementia research. It was a strong field and he was clearly the best candidate for this exciting role.

[…] In recent years we have made significant and exciting progress, from the UK leading the first ever G8 summit on dementia in 2013 to the commitment of £250million investment in the first Dementia Research Institute (DRI). […]

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