GPs and other staff from six Bristol surgeries had a real eye-opener on the varying ways in which patients from different ethnic minorities may talk about dementia, in a series of information sessions led by the University of the West of England. For some patients, there may be such stigma around dementia that someone’s diagnosis is never openly talked about, or they may have no specific word for dementia in their mother tongue. Medical staff might therefore have to find more creative ways to approach diagnosis for patients suspected of having dementia.
This was one of the messages for GP staff attending the sessions, held in Bristol between June and August 2018. The training was attended by 46 staff across five GP practices, including GPs, nurses, receptionists and interpreters from Healthlinks. All of the practices are in communities with high numbers of people from black and other minority ethnic (BME) backgrounds, including Wellspring Surgery, Lodgeside Surgery, Montpelier Health Centre and East Trees Health Centre.
The information programme was developed in response to research results published in 2017, which highlighted some of the challenges for people from Caribbean, Chinese and South Asian communities in Bristol with regard to accessing dementia healthcare services, and called for better training and education for health care staff. People from BME communities are at higher risk of dementia due to a higher incidence of type two diabetes and cardiovascular disease, which are risk factors for dementia. But patients from BME communities often go unnoticed, or are diagnosed at a later stage of the disease.
The report focused on the experiences and needs of people from three BME communities, in order to try to understand some of the reasons for the delayed or missed diagnoses, and to find out what was being done to address these. Social stigma about approaching health professionals for a condition affecting cognitive skills and behaviour, and difficulty in communication, including lack of trained interpreters, or lack of a shared vocabulary for talking about signs and symptoms, were among some of the barriers.
It led to 18 recommendations for action for improving awareness-raising about risk factors for dementia in BME communities, and improving communications between healthcare staff and patients from BME communities.
The Bristol training sessions led to highly positive feedback, with staff intending to change the way they worked, for example, by asking patients about changes in their behaviour rather than their memory, or choosing a variety of words to describe the changes in brain function that can occur with dementia. One respondent noted the importance of being more aware of higher risk factors for dementia for people of BME origins, while a receptionist intended in future to "pay attention to what patients are saying so I can notice concerns about memory.”
“The feedback was that there’s so much need for this type of training,” said researcher Subitha Baghirathan, who delivered the training on behalf of the Dementia Health Integration Team working group on dementia and people from BME communities, with support from an Alzheimer’s Society research dissemination grant.