What is dementia and how does it impact on BAME Communities?
Dementia is a collective term for a number of conditions. Popularly known as Alzheimer and Vascular Dementia, but there are many others. Dementia affects people in different ways. For some people there is memory loss. Other people may lose the ability to communicate, they may lose awareness of time and place, they become angry or very quiet. Others may lose their usually reserved nature and begin to show behaviours that are just not their usual self.
As the number of BAME older people increases in the UK, there is to be an expected 7 to 8 fold increase in dementia amongst these communities. Currently there are about 25,000 BAME people in the UK living with dementia.
Dementia and stigma
Stigma around dementia means that it is a taboo subject for many BAME people living with dementia and their family carers.Some think it is madness, possession by jinns or witchcraft, others think it may be a punishment from God. So the family carers and the person with dementia hide it and do not easily seek support. This leads to service provides thinking the BAME communities are happy to look after their own because their numbers are very low at the point of seeking help and support.
BAME communities and dementia in the UK
Black Asian and Minority Ethnic (BAME) refers to communities other than indigenous English, Welsh, Scottish or Northern Irish people living in the UK. This usually implies people who are of Asian, Arab, African, Far Eastern, Caribbean, Central and Eastern European origin of heritage.
Minority ethnic communities have an increasing ageing population which points to a seven to eight fold increase in dementia (and dementia care) in the next few decades. Whilst BAME communities are seen to have English as a barrier to accessing services (or support), it is important to recognise the barriers that exist. Social and economic deprivation, social constructs of dementia and care as well as prejudice and discriminatory practices (directly or through well-meaning but ignorant practices) can all hinder access to the right support.
- No word for dementia in the main BAME languages
- Absent at the point of care
- Project increase 7 or 8 fold in BAME dementia in the UK
- Often managing co-morebidities e.g. diabetes, dementia and blood pressure
- Social stigma and family pressure prevents carers getting the right help
- Services are often not able to provide culturally competency in their support
- Carer and BAME person with dementia voices are missing in research and service development
Social construct of dementia based on migratory experiences
Although many (if not most) of the Black Asian Minority Ethnic people who migrated to the United Kingdom in the 1950’s onwards through to the 1970’s, did so with a view to return home, they were not able to do so. The main reason for this was the changes in the immigration laws of the 1960’s and 70’s. They forced the migrant labour to choose between staying in the UK (and inviting their families to join them) or to return home knowing they may not be able to return.
But how does migration affect people with dementia? Well the answer is not as simple as it may seem. There are people who may revert back to their first language ‘mother tongue’ as many people call it. There is also the issue of migrant communities holding on to their values, beliefs and customs relating to what is dementia, how it is to be cared for and how the family is affected by the stigma from other family members, relatives, friends and society in general.
Migrating to another country can also have result in issues such as experiencing prejudice and racism. This in turn can lead to a mistrust of institutions that are public or state organisations and services designed to help folk when there is a need. Social Services and the take up of residential, nursing or respite care is limited mainly due to anxiety of language, faith and appropriate care from a cultural perspective.
Awareness of dementia is very important if the person with (potential) dementia and their family carers are able to access appropriate and timely information as well as services. Depending on whose perspective you take, you will see from the infograph below that there is a wide variation between the views of service providers who might feel they are doing a good job with the recipients of that information. The communities may not be able to access the information (awareness) as it may not be timely, in the appropriate format or language.
The person with (potential) dementia may not come along to find out about (or search for the) information relating to dementia, memory problems of cognitive impairments due to a fear or stigma. Similarly, family carers may not see the need to access information if they are not aware of dementia and its impact – at least not until matters get to crisis point.
Conscious or unconscious bias exists in all of us. However the biggest issue that we see lies in the assumptions that service providers have when it comes to understanding the needs of the BAME communities. Where we have the narrative of ‘the other’, we tend to fall back on prejudiced ideals of how that ‘other’ lives and thinks. Many people within health and social care sector have been under the assumption that BAME communities live in extended families and thereby they look after their older relatives.
Whilst this may be true for many families, the housing stock and the need for younger generations to follow education and career prospects leads to the extended family networks giving way to nuclear family households. This is often at the expense of close family support. For those who may be lucky enough to family a wider family network, questions should be asked regarding the willingness, preparedness and the obligation to care.
In order to challenge prejudicial viewpoints it is import for all of us to question and challenge our own perspectives – whether as service users fearful of perceived discrimination from services or as practitioners thinking ‘they look after their own’.
This can be as simple or as complicated as you want to make it. We all talk about a person-centred approach, which can be quite a euro-centric take on how the person needing support is at the centre of their care, decision making, best interests and so on. However, many in the BAME communities have an Asia-centric or Afro-centric stance when it comes to taking care of their relatives. Some feel that the person at the centre is a key part of the wider family network. They are no less nor any more important than others in the family.
So, when it comes to providing care and support, the issue of family decisions, shared responsibilities, delegated duties can become evident. The problem this can create for services (practitioners) is that we like the ‘next of kin’ approach. The reality for families is one where a different person may be the appropriate person to talk to depending on the issue ranging from appointments, medicines, care tasks or general communication. This is more of a family or relationship-centred approach.