Delayed Access to Dementia Services: The Experiences of the African Caribbean Community in the UK.

Abstract

African Caribbean people in the UK have a higher incidence of dementia compared to White people. Despite this, they are less likely to seek help from services. Previous research has investigated barriers to help-seeking for dementia in ethnic minorities, but this research has typically involved samples drawn from a range of ethnic groups. Given their increased risk, it would be useful to focus specifically on the African Caribbean community. Fourteen African Caribbean participants, with experience of supporting a family member with memory loss, participated in an interview exploring their perceptions of barriers to help-seeking. Reflexive Thematic Analysis was used to guide the collection and analysis of interview data. Historical experiences of the African Caribbean community have made them self-reliant and stoical in the face of adversity, and unwilling to seek help, particularly from a society that rejected them. Memory loss is likely to be attributed to old age or harmless individual traits, and the concept of dementia is not well rooted in the culture. Shame and stigma attached to mental difficulties in the culture also make people unwilling to seek help and motivated to mask their difficulties. There are cultural and familial expectations that care should be provided by daughters within the family, not by outsiders. Participants were reluctant to make use of services due to concerns that, because of racism, the family member will receive a poorer quality service, a culturally insensitive service, or be mistreated. There is a need to raise awareness and understanding of dementia in this community, and to tackle the stigma associated with it. Ongoing racism and cultural insensitivity within services also need to be addressed. Because of the community's mistrust of government and mainstream institutions, African Caribbean community organisations should be funded to lead efforts to deal with these issues.