I was recently invited to give a talk organised by Dementia Action Alliance specifically focusing on the London Borough of Richmond. The Dementia Action Alliance is aiming to create a dementia friendly Richmond where people with dementia and their carers can feel better understood, respected and supported. There were a number of very interesting presentations on the day and the focus of my talk was on black and ethnic communities in the borough.
Growing Threat of Dementia
At Multicultural Richmond we have been working with the local community for over 20 years. As you can imagine we have faced different challenges including issues which are becoming much more prevalent for a variety of reasons. With a growing and ageing black and ethnic minority (BME) community in Richmond dementia is definitely one of these areas. Nationally the rate of Dementia in BME communities is expected to increase 7 fold in the next 40 years which compares to only a 2 fold increase in the white communities in England in Wales. National research estimates that 25,000 BME people already have Dementia in England and Wales and predict 50,000 by 2026 and over 172,000 by 2051. In Richmond the BME population represents around 15% which is nearly 30,000, it is predicted to rise to 17% in 2025 and 10% of them will be over 65. The chances that some of the 10% will develop Dementia is definitely likely to be high.
Challenges in BME Communities
The task of getting a more accurate picture of Dementia in the BME population is multi-layered. Firstly there is no word for Dementia in some languages and there is a considerable lack of knowledge and awareness of the condition. Secondly any strong association with mental problems has a huge stigma attached to it. This leads to underreporting and late diagnosis and even misdiagnosis and being labelled mentally ill. Which they certainly are not. Together with barriers to access services due to culture and language, we urgently need to develop programmes to increase awareness in BME communities, encourage reporting and earlier diagnosis.
What has also been noticed is that people with Dementia whose first language is not English, revert back to their mother tongue as the disease progresses and so become even more isolated and increasing the chances of their needs not being met.
Other issues include carer duties which may increase as the impact of Dementia progresses. There may be reluctance on the carer to accept outside help, who may feel it is their duty. In fact they may not even think they are a carer, because in many BME communities people who look after their loved ones don’t see themselves as carers, they see it as their duty. Sometimes there are also family and community pressures to continue caring, even when the burden of caring is considerable. These attitudes though are beginning to change slowly.
“In some cultures, dementia is not widely recognised as being caused by diseases of the brain, and words such as ‘pagal’ – meaning ‘mad’ in some south Asian languages – are still used. I sometimes show people images of brain scans to help dispel these kinds of myths and stigma about dementia, such as it being a curse or punishment” – Atiq Hassan, Dementia Adviser in Bradford
What can be Done?
- Train relevant staff in cultural sensitivities and requirements
- Identify who you will be talking to
- Ask how they would like to be treated
- Identify and address their sensitivities
- Match health professionals for certain ethnic groups who can understand and speak to them in the right language. This will help a lot and go a long way in supporting that person
- Develop a programme of Dementia awareness sessions across the borough in partnership with Multicultural Richmond to access hard to reach BME communities – we used to have a Happy Soul programme in the past to reduce the stigma of mental health in BME populations perhaps we need a specific one for Dementia
- BME communities and carers are more likely to visit places of worship than the indigenous population, it is worthwhile partnering up with local temples, mosques and gurdwara’s to increase awareness of Dementia and what support is available and to reduce the stigma which is attached to it.
- Ensure care services provided to people with Dementia are culturally sensitive to belief and their backgrounds.
Summary
Dementia doesn’t discriminate. The rate of Dementia nationally is expected to increase 7 fold in the BME community in the next 40 years. People are quite likely to hide the condition due to it being associated with a mental illness which is a huge stigma – let’s remove it! To tackle dementia in Richmond we should consider culturally sensitive services and develop a programme to increase awareness across the borough with our help
Thanks and if you have any questions or queries please leave a comment below.
Ravi Arora
