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Understanding dementia among the Bangladeshi community in England

Student thesis: Doctoral Thesis

Background: Worldwide, an increasing ageing population means that more people may suffer from dementia. Despite the rapid growth of older Bangladeshi people living in the UK, there is little evidence on how community members understand and view the process of dementia. 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. In addition, while Bangladeshis are three times more likely to care for dependent family members than White British (Carers UK, 2011), little is known about the experiences of family carers of people with dementia. There is a paucity of research within the Bangladeshi community on experiences and concerns of Bangladeshi individuals providing care for their relatives with dementia. Therefore, the objectives of this study were to produce new knowledge and understanding of the attitudes, perceptions and beliefs of members of the Bangladeshi community in England about dementia and dementia caregiving, as well as to increase awareness and understanding of dementia.

Methods: The research for this study was gathered in three distinct phases: 1) qualitative meta-synthesis, 2) focus group discussions and 3) semi-structured qualitative interviews. Firstly, a systematic literature synthesis of primary qualitative research studies on South Asian people with dementia and their family carers was conducted. The qualitative meta-synthesis, using the Joanna Briggs Institute’s (JBI) technique of meta-aggregation, was completed to consolidate the data and draw together the current evidence base, which informed the development of the interview schedules for phases two and three. Then in phase two, two separate focus group discussions (one male, n=12; and one female, n=9) were held with Bangladeshi people in a large South coast city. Finally, in phase three, semi-structured, audiorecorded interviews were conducted with six Bangladeshi family carers living in London and Portsmouth. All data were analysed using thematic analysis. NVivo 10 software was utilised to simplify thematic analysis, including transcribing, coding, and documenting emergent themes.

Results: One research gap was identified in phase one using the population framework where, despite the increasing number of older people from the Bangladeshi community in England, little or no specific research was carried out on their understanding and management of dementia. Perceptions of the personal ageing process were mostly related to physical decline. Across phases two and three, a lack of knowledge and understanding of dementia awareness was evident, but stigma about dementia was non-existent. Family carers exhibited a strong sense of familism, religious beliefs, and values, which appear to increase interpersonal motive, or obligation, to provide care for their relatives with dementia at home. Family carers appeared to accept and take for granted the expectations of fulfilling often considerable caregiving roles.

Conclusion: This study provides novel and current research findings on the knowledge and attitudes towards dementia among a Bangladeshi community in England. The findings will help improve the advice, care and support for other Bangladeshi elderly living with dementia and their family carers (as well as healthcare professionals delivering services) outside of the specific context of the research setting. This will also help to better understand the challenges family carers face, the barriers to accessing health and social care services, coping strategies and avenues for future action. In this context, it is vital that future studies highlight the importance of raising dementia awareness and provide more information to Bangladeshi community members about dementia, dementia caregiving and religiously sensitive healthcare services.
Original languageEnglish
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Award dateAug 2017
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