Dementia has quickly become a worldwide issue. People are living longer, healthcare has improved, education is more available and the world is more connected. This has led to us becoming acutely aware of social issues affecting our populations, one of which is dementia amongst our growing numbers of older people.
Dementia is a collective term for a number of conditions that affect the brain. Whilst Alzheimer’s disease is probably the best known of the dementia variants, each one has it’s own associated behaviours or characteristic symptoms. These can range from being forgetful, finding it difficult to communicate, losing a sense of direction and orientation or adverse behaviour. It is not just an ‘older’ persons’ disease but can (and does) affect younger adults too.
In the UK there are approximately 820,000 to 850,000 (depending on whose figures you quote), people living with dementia. Of these it is estimated that around 14,000 to 15,000 people are from the Black and Minority Ethnic communities. However, it is also recognised that a proportion of the community do not recognise the symptoms and are therefore unable to access the appropriate information and support services available.
So what has this got to do with dementia you ask? Sadly, South Asian people are more prone to a number of ill-health conditions due to lifestyle choices – such as diabetes, poor heart health, stroke and obesity. These conditions are also being put forward as potentials for leading to future risk of dementia. Together with a range of societal factors that create barriers to accessing information or access to care services, such as language, literacy, attitudes, stigma, sense of cultural or religious duty and notion of care-giving, carers struggle to get the help they need.
Coming from India, Pakistan and Bangladesh our elders came as migrant labour with a notion of returning home once they had earned enough money. However, the changes in the immigration laws, increasing numbers of family members joining fathers and husbands in the UK, meant that families became British; settling for good. Years later these earlier migrants have had a dichotomy in their historical experiences – earlier years in the sub-continent and the latter years in the UK. This is where the ‘apna’ (implies one of your own kind ie South Asian in this instance) and the ‘British’ create a difficulty for some practitioners working in the field of dementia.
Services are often unable to fully comprehend the cultural competencies required in meeting the needs of diverse communities. It is also usually easier to say that some communities are ‘hard to reach’, but I would ask whether this should be ‘easy to avoid’ due to ones own ignorance. Being able to deliver appropriate and timely services requires the understanding of community dynamics and the way that the health and social care is envisaged and managed from a community perspective.
The acceptance of someone having dementia is usually done through a ‘test or assessment’ for mental ability or cognition. A few of these are being worked on to make them culturally competent to assess the level of memory impairment of people who are not indigenous White British. Hence the title of this blog – without looking can you remember the three English items in the title and or the three Punjabi words? Some of the tests are ambiguous for the BME older person who perhaps has lower education attainments or a different life experience. This can, and often has, misdiagnosed someone of the South Asian, or from other non-White British backgrounds, being able to answer all the questions. [By the way recalling the three items is a question in one of the tests.]
The problem that this can create is not so much at the pre-diagnosis stage, but the help that can be afforded (or missed out on) at the post-diagnostic stage. Whilst there is as yet no known cure for dementia, there is a lot that can be done to support families and carers of people living with dementia so that everyone can live well with dementia. Not getting a diagnosis can mean families struggling to come to terms with behavioural changes, aggression or apathy of the person with dementia through to a lack of medical intervention to slow down the progression of dementia – the physical impact on the brain.
Step in Meri Yaadain Dementia Team, a local Council initiative in Bradford, having beavered away to raise awareness of dementia amongst the South Asian communities over the last ten years. Meri Yaadain, meaning ‘My Memories’, has used a community development approach to reaching out to communities and working in partnership with statutory and voluntary services to raise awareness of dementia, work towards improvements in service provision and how practitioners understand the social, cultural and religious dynamics of how South Asian families understand dementia and it’s care. Having being successful with a number of national awards the team have helped set up similar initiatives in other localities across the country.
But the work is still at the ‘tip of the iceberg’ stage. Communities are not homogenous – communities within communities deserve the same opportunities to access culturally appropriate information and services. Not having a word for dementia in the five main South Asian languages has led to an accepted usage of the word ‘dementia’ to refer to the condition. The focus now is to spread the good practice across the region and the nation – as practicalities of the Meri Yaadain approach are universally transferable. In the same way, the focus on post-diagnostic support is the next step in making sure all people get the best possible opportunity to live well with dementia irrespective of recalling ‘table, apple and penny’ or ‘haathi, roti and chacki’.
Mohammed Akhlak Rauf MBE
PhD Student (School of Dementia, University of Bradford)