Dementia HIT study looks at barriers preventing BAME communities accessing dementia services

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.”