Dementia Knowledge and Attitudes of the General Public among the Bangladeshi Community in England: A Focus Group Study

Abstract

Background: Increasing life expectancy worldwide means more people will develop dementia. Despite the rapid growth in older Bangladeshi immigrants living in the UK, there is little evidence of how community members understand and view the process of ageing and dementia. However, Bangladeshis have a higher risk of developing type 2 diabetes and heart disease, both of which are important indicators of dementia development in old age. This study aimed to explore and analyse the perception and knowledge of, and attitudes towards, ageing and dementia among the Bangladeshi community. Methods: A qualitative research approach guided two separate focus group discussions held with Bangladeshi adults in Portsmouth, UK. A topic guide was used alongside two vignettes depicting either early-or latestage dementia to stimulate discussion. The data were recorded, transcribed, and analysed thematically using NVivo qualitative software. Results: Three main themes emerged: (1) knowledge and perceptions of dementia; (2) perceived causes of dementia; and (3) perceptions of stigma about dementia. Lack of knowledge and understanding of dementia was evident, but the stigma about dementia was non-existent. This study fills a research gap by providing qualitative research examining knowledge about and attitudes towards dementia among a Bangladeshi community in England. Conclusion: Future research must highlight the importance of raising dementia awareness among, and providing information about dementia caregiving to, Bangladeshi community members, as well as providing religiously sensitive healthcare services.of dementia among Bangladeshi community members, has been highlighted. The results will provide insight for service providers, policy makers, and researchers into how dementia is perceived in the Bangladeshi community and why it has remained unreported and labelled within the broader BAME communities. It is also hoped that this study has explored the concept of dementia in depth and examined the impact of stigma on individuals, caregivers, and communities.

Dementia and revivalist Islam: New perspectives to understanding dementia and tackling stigma

“…Unlike previous studies conducted among South Asian communities, a striking theme has emerged from research regarding stigma among the Bangladeshi community in the UK. 8,9,15,16,26 There was no evidence for stigma, which was consistent with a study on attitudes in an African American community in the USA, which found no stigma related with dementia 27 . Signs and symptoms of dementia such as memory loss, confusion, inappropriate behavior, problems with communication, faulty reasoning, hallucination, fainting, and agitation usually escalate stigma among other South Asian communities.…”

“…South Asian caregivers provide higher levels of care than any other group in England and Bangladeshi caregivers deliver levels of care three times higher than the overall UK population 13 . Bangladeshi family caregivers are a largely hidden and forgotten group who do not identify themselves as caregivers, but classify themselves as family members 14‐16 …”

“…A qualitative analysis revealed Bangladeshi participants' hearty desires to care for their relatives with dementia fall within the family and how the meaning of care, the impact of care, and the interpersonal and religious contexts of caregiving create negative perceptions of the residential home care 8,15,16 . The interpersonal motives of the current generation of family caregivers seem far from fading away; perhaps the caregiving attitude inherent within UK Bangladeshi families is strongly persuaded by religious factors.…”

“…These types of Islamic norms and values contrast with the comparatively composed forms of Islam that were traditionally found back in Bangladesh or among Bangladeshi Muslims in the USA 18,25 . Islamic values are strong permanent forces within the Bangladeshi community and shape various aspects of caregiving, such as family caregivers' interpersonal motives, traditional values, and culture 15,16 . If family caregivers want to perceive remaining good Muslims, they may fear displeasure from God for not providing care for their older family member with dementia.…”

“…It could be argued that providing care is more valuable for family caregivers than receiving external support for people with dementia, as it is one way to fulfill family caregivers' religious duties in aiming for felicity in the afterlife. In a similar vein, the thought of sending a family member with dementia to a care home is deemed not only as a last resort, but morally and culturally unacceptable 8,9,15,16 …”