Report recognises vital role of BME-led organisations in supporting BME people with dementia
Photo by US Army Africa CC BY 2.0.
3 August, 2017
A report by The Bristol BME People Dementia Research Group* has found that:
‘the needs of people with dementia from Caribbean, South Asian and Chinese communities in Bristol are not being sufficiently met’.
However, it has praised the vital role that BME-led VCSE organisations play in educating, signposting and supporting BME people with dementia against a backdrop of mounting pressures.
BME people in the UK are more likely to suffer from dementia than their white counterparts: While the number of white, British people with dementia is expected to double by 2051, for BME people this number is expected to increase seven-fold.
The Research Group set out to find what is known about the needs of people from Bristol’s BME communities and to recommend ways in which health and social care services can meet these needs.
People of BME origins were found to experience dementia in a different way to white British people - and this should be reflected in the style and delivery of services they receive:
- Knowledge of dementia, its symptoms and the diagnosis process varied across the different communities. For example, in the Chinese and some South Asian communities, understanding is limited by the lack of an equivalent term for ‘dementia’.
- In a number of communities, dementia is a stigmatised condition, limiting the extent to which people felt able to make use of mainstream health and social services.
- Late diagnosis, inappropriate or inadequate service provision and lack of interpretation were cited as the biggest issues facing BME people with dementia.
- However, there were examples of people with dementia who continued to be actively engaged in social groups and activities. People from South Asian and Caribbean communities were found to be engaging most with these beneficial services.
The vital role of BME-led VCSE organisations
Researchers found that whilst older BME people generally had good experiences with 'mainstream' services, they preferred to use services run by BME-led VCSE organisations. The report calls for increased support for these organisations. Most were found to be under pressure as their beneficiary groups age and available funding pots diminish:
- Many BME-led organisations play a vital role in educating their members about dementia, signposting them to relevant agencies and providing on-going support and care of people with dementia and their carers.
- Whilst the majority of staff and volunteers at BME-led organisations have received some dementia training there were clear gaps in their knowledge base which they were keen to address.
Ex-Voscur employee, Subitha Baghirathan, (Research Associate at the University of the West of England), played a key role in the report’s production. She said:
“This research study was largely made possible through strong partnership working with BME-led voluntary and community sector organisations which provide services to older people of BME origins; such as Awaz Utaoh, Malcolm X Elders and Avon and Bristol Chinese Women's Group, to name only a few.
Some of the recommendations of the report urge commissioners to strengthen capacity of these organisations: such as improving links with mainstream dementia service providers; and working with these organisations to run sessions on dementia awareness, risk factors and prevention”.
Ruth Pitter, Head of Inclusion at Voscur said:
"The data in this report is alarming and demonstrates the crucial need for the provision of targeted BME-led services. The new Commission for Race Equality in Bristol champions the Bristol Manifesto for Race Equality with a key focus on health, and advocates to all those working with the BME-led sector for the benefit of BME people in the city. In order to fulfil the recommendations we need to ensure both culturally specific and comprehensive support is available, and that strategies are in place for preventative measures with appropriate promotion to BME communities".
Useful links and resources
This is a local VCSE organisation run by volunteers. It offers dementia awareness sessions for free and also lobby for better dementia inclusion and awareness.
Managed by Bristol Health Partners, BDH coordinates activities carried out by partners from local Universities; hospitals; and VCSE organisations in Bristol and South Gloucestershire. They also offer free local training events and seminars on dementia.
Watch six short films about dementia, produced by the Bristol Dementia Wellbeing Service in 5 different languages.
Also see Voscur's directory for VCSE organisations working with older people in Bristol.
*The Bristol BME People Dementia Research Group has had a flexible membership over the two years of its existence. However, amongst the members of the steering groups have been representatives from: Bristol and Avon Chinese Women’s Group; Alzheimer’s Society, Bristol Dementia Wellbeing Service; Bristol City Council Public Health; Bristol Black Carers; the Dementia Research department at the University of the West of England.
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