Sat on the plane headed home after a very positive (and a little information overload) dementia conference. I’m thinking about the type of people that were there and what their respective interests might have been. I’m reflecting on the fantastic work that was presented and showcased from work being done across Europe. But I can’t help but wonder where ‘back home’, is with the concept of providing intercultural care for the diverse communities in the UK.
Now if I was to tell you that there is to be a seven to eight fold increase in cancer over the next 30 years or so, you would be shocked – and rightly so! So why is it that when it comes to the BAME communities in the UK there is no outcry on the expected seven to eight fold increase in the dementia rates amongst the BAME communities?
At the end of the last century the Department of Health worked on the National Service Framework for Older People and one of the sections in there was mental health. We have moved on from seeing dementia as a mental condition to one where there is a wider consensus that is it should be referred to as a physical condition. After all it affects cognition and daily functions. There is still an awful lot of work to do in raising the awareness amongst communities that have no word for dementia. Not having a word for dementia has meant that educational endeavours have not always been successful without some prior work to create an awareness of the condition.
Raising awareness of dementia hasn’t been easy because those very communities can not see the condition as a physical state, rather still a mental affliction. To some extent it is understandable that ‘they’ look at the cognitive impact on their relative instead of the physical impact or symptoms. Minority ethnic communities will often have a different social construct because they will have brought with them the values, expectations and norms from their place of origin. As such, when there is no word for dementia, coupled with the societal stigma attached to mental ill heath, it becomes difficult for family carers to tackle the social pressures restricting them from accessing information and support services.
Not only is there a problem in accessing appropriate information and culturally competent services, but where health practitioners ‘fob’ them off saying this comes with the normal ageing process, it exacerbates the difficulties and the barriers preventing assessment, a diagnose, information and support. ‘But they look after their own!’ is what we often hear. But do they? On what basis is this substantiated? Well, what doesn’t help is when a health minister in the UK holds a view that we should be learning from the BAME communities because ‘they look after their own’. This is something that I came across 18 years ago and have been trying to speak up against. Why? Well if we accept the concept, it tells us that we do not need to reach out to help make a difference to these communities. Evidence suggests that there are a number of factors that influence the ability to look after our own – for ALL of us. And ALL of us are impacted by the difficult decisions on when, where and how we decide when we need to move the care for a member of the family to institutionalised care.
Whether minority ethnic or majority (yes we are all an ethnic – either from the minority communities or from the majority community), there are factors such as decrease in extended family homes, young chasing an education and jobs elsewhere, societal pressures to manage our own household matters rather than also take on matters relating to extended family members. But more so than that I would ask – would you not want to look after your older mum or dad if you could? Is it easy to put them in longterm care or does it create stress and anxiety for you when you are compelled to have to make such a decision? In the same way we all want the best for our elders. But why then might it be difficult to have BAME family caregivers struggle to think of respite, sheltered housing schemes, residential care and ultimately nursing care for their older relatives?
Well again this isn’t as easy to answer as some might tell you. Social constructs of health, of care, duty and expectation all contribute to social stresses and stigma challenging family caregivers. Religious influence and obligations might add to the burden of caregiving – ‘I must care for my mum because my faith says I should look after my parents’. Others see this as a test from God in that they are being tested for their deeds and attitude towards looking after their relatives. This can however be both positive or negative. Positive in the sense that some carers might see this as a ‘tool’ to help them cope with the caregiving; whilst others might feel burdened or trapped from being able to break away from this responsibility.
Another influencing factor is the actual or perceived prejudice – will they understand my diet, language, likes and dislikes in music or art? What if I can’t explain the what and the why? People are often worried that the ‘difference’ may be misunderstood or simply avoided. You might relate to the fact that we tend to say our services are open for all to access and then wonder why ‘they’ are not using our services when we have no concept or awareness of cultural competency. Having a service offering equality in access is not the same as a service offering equity to get to equality in access – and trust me you don’t need a PhD to access some training and awareness (though a new endeavour now offers this – hint hint!!).
So I come back to the point – if cancer was to increase seven or eight fold, would you be alarmed? If so, should we be alarmed that there is a projected increase of this magnitude for dementia in BAME communities in the next few decades?
Should we therefore not seek expertise from those with some qualification to make sure that we support individuals, families, carers? And if this doesn’t help sway the argument, surely it also costs the state less to support families and individuals, to live and to be care for at home for longer.
Mohammed Akhlak Rauf MBE
PhD Student (School of Dementia, University of Bradford)