Q & A with Moïse Roche, PhD researcher from the Division of Psychiatry

What influenced your decision to work in the field of dementia and what inspires you most working in this field?

After my degree in Psychology at City, University of London, where I became interested in how memory works and wrote my dissertation on autobiographical memory, I started volunteering with the Alzheimer’s Society. What became strikingly apparent at the time was an almost complete invisibility of people from Black backgrounds (African, Caribbean, and other Black) and South Asians making use of the service and support available. I was also surprised to see very little representation of these populations on materials available at The Society. I remember raising the question with the managers at the two offices where I volunteered.  
My motivation for working in this field is that I am able to ensure that people seldom heard and often misrepresented in research and the media have a voice. People have often told me that they felt they were misrepresented in the research they participated and did not recognise the ideas and opinions they conveyed.

Can you very briefly tell us about your journey into mental health research?
After a long career in IT, I returned to higher education to study Psychology at City, University of London. I then began to volunteer with Alzheimer’s Society as dementia adviser and community engagement officer. I later went on to work as a research assistant at UCL on the IDEMCare project, a 3-year project funded by the CLAHRC North Thames (now rebranded as ARC) seeking to improve dementia care in Black African and Black Caribbean people. I also occupied various other research assistant roles at St George’s, University of London, NHS and UCL, while completing a master’s degree in dementia at UCL. This sort of set me on the path of my PhD which I am currently writing up.  

Can you tell us about your research involving better understanding how dementia services can better meet the needs of Black African and Black Caribbean people?

My research is a qualitative study with semi-structured interviews and participant observations that explores how Black African and Black Caribbean families conceptualise and manage dementia, their expectations of and attitudes towards treatment and care, and the lived experience of the individuals with dementia who stay at home or move to a care home, and their family carers. I began this research with a systematic review of the perception and experiences of dementia of the people that studies have variously described as “Black”. One of the interesting points that came out of the review is that so many different and nonspecific terms and categories are used to describe Black populations that it is difficult to make sense of the information available and understand to whom it applies. Additionally, because most of research is conducted by people with limited direct experience of these populations little cultural nuance and representativeness are brought out of research.

After the systematic review I interviewed 34 participants who were people with dementia, family carers, and professionals from 3^rd sectors, NHS and social care; in community and care home settings. I did this because I wanted to approach the topic from different perspectives to better understand the lived experience of Black African and Black Caribbean families with dementia, their outlook of the condition, their beliefs around personhood and continuity of self in dementia, and their experience around moving to a care home.

I have completed the data analysis and working on the interpretation. At this point, it is apparent from the data and the systematic review that the common narratives around “lack of knowledge”, “misconception of dementia” and so on, that are often reported in the literature about BME people does not show in the group of participants I have interviewed. There are a number of themes that are coming up around reciprocity and expectation of care, the call of home, and questions around identity, integration, and position in a foreign place and much more, but I cannot really say at this point what direction the interpretation will take.

What has been the impact of your research so far?
It is still early in the research for an impact as I am yet to publish my findings and with the current COVID situation, opportunities to disseminate or present early findings are affected. However, with the published systematic review, which opened up new ways of thinking about this area of research and the upcoming findings, I hope my research will highlight the importance to pay closer attention to how we investigate, report and represent various populations in research. We may be tempted to endorse existing narratives without considering the contexts in which studies are carried out. This is particularly important in ethnicity focused dementia research and qualitative research. But more importantly, I hope my research will help improve experiences and outcomes for Black families living with dementia.

What’s next for your research in this field?
Next is to complete my write-up of the final results and the thesis; and hopefully use my findings to develop a model or intervention that will make dementia services more diverse and inclusive to better meet the needs of Black African and Black Caribbean families living with dementia. Also, there is some interest from a publisher for me to convert my thesis into a monograph.