Report on Exchange By Jem Bhatt

I am a PhD student at University College London supervised by Dr Georgina Charlesworth, Dr Katrina Scior and Professor Paul Higgs. Through my research, I seek to support people who are worried or fearful about disclosing their diagnosis of dementia. In particular I have developed a programme focussed on helping people think about ‘who to tell, how and when?’ about a diagnosis of dementia. Through my work, I am trying to measure and understand how stigma stops people from telling others about a diagnosis, and how we can effectively support people in decisions that are right for them.

My INTERDEM Academy Fellowship was an extension of one of my PhD work packages. During my fellowship, I was based at VUmc with Professor Rose-Marie Dröes. Together we investigated the stigma experience of people living with dementia through three research questions: 1) Are stigma measures valid and reliable for people living with dementia; 2) Does the stigma experience differ between the Netherlands and UK and if so 3) what predicts this difference. We have now completed the data collection and plan to analyse and publish our findings to inform the dementia-related stigma literature.

Through the INTERDEM Academy Fellowship, I was able to develop not only my research skills but understand the nuances in dementia care between the Netherlands and UK. Whilst in the Netherlands, I visited several Meeting Centres for people with dementia and their carers set up by Professor Dröes. One in particular stood out to me: Ontmoetingscentrum Zandstroom. A centre created by Leontine Trijber, an artist who set up the centre based on the rationale that every person has a creative side to them, and through the arts, people living with dementia can explore their identity amongst other things. I went to Ontmoetingscentrum Zandstroom to promote my research study and to talk to the group about dementia-related stigma. It was interesting to meet such a variety of people who all acknowledged stigma as a barrier but did not shy away from dealing with it in a way that was right for them.

During my fellowship visit, I was able to present my PhD work to the VUmc Psychosocial care and support in Dementia Research Lab. It was a great opportunity to engage with other researchers at different career stages. I was able to discuss and problem solve some challenges I had faced in terms of stigma measurement, recruitment and data analysis. Whilst at VUmc I had the opportunity to attend a PhD examination as an audience member. The examination was hosted by the Department of Psychiatry VUmc at the Vrije Universiteit. As I too will be defending my thesis soon, it was valuable for me to witness.

After my fellowship visit, I felt inspired to be a part of the field and excited that there is more work to be done. It was great to make connections with other early career researchers at VUmc. I thank Professor Dröes for her hospitality.