Improving dementia and Alzheimer's support in Black communities

Moïse Roche grew up in Guadeloupe, before moving to the UK in 1993. He worked in tourism, then IT, before returning to higher education where his interest in dementia began.

Studying Psychology at City University, Moïse wrote his final year dissertation about memory. This set him on a path to learning more about dementia and, later, its relationship to ethnicity.

After completing his degree, Moïse started volunteering with Alzheimer's Society in 2013. He worked as a dementia adviser and as a community engagement officer.

Alzheimer's Society is funding his latest research project, which seeks to understand how dementia services can better meet the needs of Black African and Black Caribbean people.

This sorely under-researched area is especially important given the facts:

3 key facts about dementia for Black African and Black Caribbean people in the UK:

1. Black African and Black Caribbean people are more likely to develop dementia and at younger ages than White people.   
2. Black African and Black Caribbean people tend to access dementia services much later on, when they are in crisis or no longer able to cope alone.   
3. Black African and Black Caribbean people are also less likely to receive drug treatments, take part in dementia research studies or move into a care home.  

The access problem

While working with Alzheimer's Society in the culturally diverse boroughs of Lambeth and Wandsworth, Moïse soon noticed these worrying patterns of who wasn't accessing dementia support.

‘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 nearly no illustration or people representing these populations in (or on the cover) of the printed materials available at the Society. I remember raising the question with the managers at the two offices where I volunteered.’

Moïse also found that existing dementia research often misrepresented people in Black communities as unwilling or failing to engage with dementia services. But, in his research, Moïse found that was not necessarily the case, and that services were equally likely to fail Black communities in how they presented, structured and delivered services.

His research is about understanding how these communities perceive and react to dementia, so that dementia support can become more culturally informed, diverse and inclusive.

Changing the narrative  

One obstacle to understanding the relationship between ethnicity and dementia is a lack of good data. Much of the existing research has tended to group B.A.M.E populations together and compare them to White populations. But B.A.M.E populations are very diverse and cannot be grouped or treated as one. This makes it impossible to extract robust conclusions from data.

For a better understanding, Moïse has interviewed Black African and Black Caribbean people living with dementia, their carers, clinicians, care home staff and other people involved in dementia care in Black communities. These conversations will bring context to the existing data:

‘Black communities are often reported to hold misconception, poor knowledge and inappropriate beliefs about dementia, as well as being less likely to participate in research or engage with services.'

‘It is evident that the lack of knowledge so often reported in the literature does not show in the group of participants I have interviewed. There are a number of themes that emerge from the data around reciprocity and expectation of care, as well as questions around identity, integration in a foreign place and much more.

'I hope this research will highlight the need to reconsider the current narrative about dementia and ethnicity; but more importantly, improve experiences and outcomes for Black families living with dementia.'

Moïse is in the process of analysing the data, so it’s unclear at this stage what direction his conclusions will take. But the picture appears more complex than dominant narratives suggest.

Time for action

With so much research being investigative and exploratory in nature, Moïse also recognises the need for work that is intervention-based.

In light of the Black Lives Matter movement, and the news that Black, Asian and other Minority Ethnic groups have been at a greater risk of death from COVID-19, this has never felt more urgent.

‘In light of current social climate, I am inclined to say that any intervention will need to be all encompassing and include much wider context,' says Moïse.

'My personal feeling has always been that when services are developed, they should take into consideration the whole population of the country, and acknowledge its diversity.

'At present, services, support and treatments are created and tested, by – for – and with the White majority population. Then, later, they are reframed and adapted for other communities. 

'This approach is ineffective, costly and divisive as it dismisses a large portion of the population. There should be requirements from funding bodies, organisations and Government that services, support, interventions, and so on are developed for and with a proportionate representation of the entire population of the country.'