Report recommends BME led voluntary and community organisations for older people work closely with statutory services
Research funded by Bristol City Council and carried out by the University of the West of England (UWE Bristol) in collaboration with local groups found that BME (Black and other Minority Ethnic) community leaders are increasingly aware of how dementia affects many people from BME communities. The research found that community led VCSOs (Voluntary and Community Sector Organisations) are open to training and partnership working to enable them to provide better service to their members.
Bristol has a culturally diverse and ageing population. People from many BME communities in the UK are disproportionately affected by risk factors for dementia, including diabetes and cardio-vascular disease as well as being affected by a range of health inequalities. The number of people living with dementia is expected to increase significantly over the next 30 years, with a faster rate of increase amongst people of BME origins. A seven-fold increase in dementia cases is predicted for people of BME origins in comparison with a two-fold increase amongst people of white UK origins.
The eight-month study set out to establish the dementia experiences and needs of people of BME origins. The study focused on the experiences of people from Caribbean, Chinese and South Asian communities in Bristol. Forty-eight participants were interviewed and eight Focus Groups were held between April and August 2016.
One of the research team overseeing the project, Professor Richard Cheston from UWE Bristol, says, “People of BME origins often experience dementia in very different ways from white British people. For example, diagnosis is more likely to occur at an advanced stage of the illness, there is lower take-up of mainstream dementia services and the availability of culturally appropriate forms of post-diagnostic support is variable.
“Our research found that many examples of good practice, spreading across the NHS, voluntary and community sector groups. However, we also found instances where there was a lack of knowledge of dementia and its symptoms and that the diagnosis process varied within different communities. At times, dementia was stigmatized and people were reluctant to seek mainstream help.
“Older people of BME origins were more likely to use groups or services run by BME-led voluntary and community sector organisations (VCSOs), as they were familiar with these services and felt they were more likely to meet their needs (for example around language).
“When mainstream services were used, some people experienced problems such as a lack of interpreters, inappropriate or inadequate service provision and, on occasion, a lack of understanding.
“We also found gaps in knowledge for some staff and volunteers at BME-led VCSOs and staff were keen to receive further training around dementia. VCSOs provide important services such as educating members about dementia, signposting to relevant agencies and providing on-going support and care of people with dementia and their carers, so it is important that staff have relevant knowledge and training.
“Our report includes detailed findings and makes 18 recommendations, including raising awareness of risk factors and prevention in BME communities, creating culturally appropriate tools for diagnosis of dementia, and more training for VCSO staff. Greater collaboration between Bristol Dementia Well-being service, the council and BME-led VCSOs will enable a more complete, joined-up service. This report comes at an important time when Bristol has recently been identified as the city with the highest levels of racial inequality in the UK after London.”
Marvin Rees, Mayor of Bristol, says, “We funded this research to better understand how Bristol can be a good place for everyone to grow old, especially as people are living longer with increasingly complex needs. Dementia is not an inevitable part of ageing and this research highlights the need to raise awareness about the associated risks as well as the support that is available.
“What particularly shone through is how partners from across the city must continue working together to improve the experiences of BME people living with dementia. It is possible for people with the condition to lead fulfilling lives and play an active role in society, which is essential if Bristol is to be an age-friendly city. I am confident that together we can rise to meet this challenge and there are already some excellent projects being explored, including how we can use technology to improve people’s lives.”
In his Foreword to the report, the Rt. Hon Lord Hunt of King’s Heath comments:
The report lays out the problems of late diagnosis, inappropriate or inadequate service provision and a lack of interpretation. Progress is not going to be made unless the City Council, NHS, voluntary sector and civic society commit themselves to full hearted implementation.”
The study was overseen by the ‘Bristol BME people and Dementia’ research group, made up of representatives from Bristol and Avon Chinese Women’s Group, Alzheimer’s Society, UWE, Bristol City Council, Bristol Black Carers and Bristol Dementia Wellbeing Service.
Collaborative partnerships were developed with VCSOs led by people of BME origins, such as Siri Guru Singh Sabha Gurdwara, Golden Agers, Dhek Bhal, Bristol and Avon Chinese Women’s Group and Bristol Black Carers.