Dr Moïse Roche on building more inclusive services for dementia
Dr Moïse Roche is working to improve experiences and outcomes among Black African and Caribbean families when it comes to dementia care by helping to design inclusive services.
It was a third-year undergraduate lecture on semantic dementia that solidified Dr Moïse Roche’s decision to go into the field of dementia research. He had always been fascinated by memory and its functions, but learning about this disorder, which sees patients lose the ability to match words or images to their meanings, sparked a curiosity that saw Dr Roche volunteer for the Alzheimer’s Society. Whilst volunteering, Dr Roche noticed a significant shortage of representation and awareness about dementia in minority ethnic communities, particularly among Black African and Caribbean populations.
“I remember noticing a lack of representation of minority ethnic populations in the dementia materials available, particularly among Black African and Caribbean populations. Not only this, but I was also surprised to see less awareness around dementia, with very few Black and South Asian families making use of services and support available.”
These observations led Dr Roche to pursue a research project at UCL seeking to improve dementia care in Black African and Black Caribbean people, and ultimately on to his PhD studies.
Much of Dr Roche’s research is qualitative, allowing him to interact and make connections with people living with dementia and their families to better understand their experiences. He explains that this methodology gives him insight into attitudes towards dementia, which in turn help to shape his research. It was this methodology that Dr Roche used in his PhD to conduct a systematic review to explore how Black African and Black Caribbean families conceptualise and manage dementia. One of the main findings to come out of his research was around the gap in culturally appropriate care and support services.
“I found that there is a significant lack of care services that are culturally sensitive and tailored to the needs of Black African and Caribbean people with dementia. This gap often leads to feelings of isolation and inadequate support for both the individuals with dementia and their families. Only by listening to the experiences of people within these communities can we develop truly inclusive services.”
This sentiment is also echoed in his plea to other researchers carrying out dementia research. “Time and time again I see outdated views about Black African and Caribbean adults living with dementia perpetuate in research. For me, this highlights the need to be inclusive at the outset, when designing research studies. It should not be a secondary thought. If you want to make something truly inclusive, then you have to test it with an inclusive pool of people; you wouldn't develop a shopping center and put in only male toilets because you only asked males about what they wanted. We need to make sure that we represent every community that we intend to serve with the findings of our research.”
Stemming directly from the findings of his systematic review, Dr Roche is now working to develop more inclusive services and materials for people living with dementia and their families. As a first step, he is speaking with minority ethnic families, particularly Black, African and Caribbean, to find out both how they find services now, and to discuss what they want and need from services. He is keen to understand the current barriers to access, to guide the development of better materials and services.
Dr Roche is eager to note that making materials more inclusive for one group does not detract from the service that other groups receive. “This is not about creating services or materials specifically for Black communities, it is about looking at the existing services that we have and opening them up in such a way that more people from different backgrounds can access and benefit from them.”
Biography
Dr Moïse Roche is a Senior Research Fellow in Health, Social and Psychological Sciences, with a focus on dementia, ageing and ethnicity. He is also a Senior Atlantic Fellow for Equity in Brain Health at Global Brain Health Institute (GBHI) and a Research Consultant. His work and involvement in the promotion of ageing well and older adults’ health and wellbeing include advocating for diversity and inclusion in research and knowledge, ensuring that output and information are relevant and applicable to a wider audience.