Members of the Dementia Health Integration Team (HIT) worked together with local Black, Asian and Minority Ethnic (BAME) partners to produce a study that looks at the factors that create a reluctance for people living with dementia from certain BAME communities from accessing support services.
The study - Dementia experiences of people from Caribbean, Chinese and South Asian communities in Bristol - was the basis for the article: ‘A grounded theory analysis of the experience of carers for people living with dementia from three BAME communities: Balancing the need for support against fears of being diminished’ This is now available online via the academic journal, Dementia. The full study report is available on the Dementia HIT research webpage.
The experiences of a range of contributors from Caribbean, Chinese and South Asian communities in Bristol were collected through interviews and focus groups.
The interviews and focus groups revealed that a ‘fear of diminishment’ was present across all communities which means that people needed and wanted support but felt they could not accept it if it meant they were diminished as a person. The diminishment could come from people’s cultural needs being ignored, social stigma around dementia and mental health within their own community and culture, and fear of being isolated and vulnerable within a ‘largely all-white service’.
Subitha Baghirathan is one of the authors of the study and a member of the Dementia HIT and contributor to the HIT’s BAME working group.
She said: “This study highlights the absolute need for cultural diversity and understanding in the provision of dementia care in Bristol and across the UK. Our study showed that although people with dementia and their carers receive authentic support from BAME-led community organisations, the services these organisations provide are often not funded in an equitable and sustainable way, and not always included in fair, consistent partnerships.”