Experiences of dementia in a UK Bangladeshi community:
an exploratory study

Hussain, N

Abstract

This thesis explores the experiences of people with dementia and their caregivers and gathers the views of service providers / stakeholders to make recommendations to improve provision for the dementia support needs of the UK Bangladeshi community. Previous research highlights that Bangladeshis have poor health outcomes in the UK and a higher risk of developing type 2 diabetes and heart disease; these are significant risk factors for vascular dementia development in old age. Although we have knowledge about risk factors, less is known about experiences of living with dementia and the associated support needs. Existing research has explored the knowledge and help-seeking behaviour of the Bangladeshi community towards dementia from the caregivers' perspective. However, no study has captured the direct experiences of people within the Bangladeshi community with the condition, despite previous studies emphasising the importance of including the views and experiences of people with dementia in research.

This qualitative research was accomplished in three distinct phases using semi-structured interviews with a total of 25 participants, who were recruited from community settings. The first and second phases explored the experiences of people with dementia and their family caregivers; The third phase of this study examined stakeholders' / service providers' views. Interviews were recorded digitally, transcribed verbatim, and thematically analysed.

The study revealed that participants with dementia and their caregivers have ‘alternative’ knowledge about dementia, and they do not necessarily understand dementia in a westernised scientific/bio-medical context. Misconceptions about dementia, and belief in various myths, can lead them to go to spiritual healers, or practice homemade remedies, rather than going to their GPs, which often delays their dementia diagnosis. The thesis highlights that there is stigma attached to dementia in the Bangladeshi community. Consequently, many participants with dementia have concealed their condition from the broader community because of a sense of shame and from a fear that others may consider them mad. This research also found that despite having high motivation to care for their relatives with dementia, many caregivers have difficulties providing adequate care due to their work and other commitments.

The findings of this thesis lead to the conclusion that there needs to be culturally appropriate health and social care provision for people living with dementia and those who provide care and support. Raising awareness of dementia, dispelling myths, and removing the stigma surrounding dementia from the Bangladeshi community is essential. This thesis concludes with policy and practice recommendations to improve the support available to people living with dementia and their carers in the Bangladeshi community that could be applicable to other minority communities.

Citation

an exploratory study. (Thesis). University of Salford

• Thesis Type: Thesis
• Deposit Date: Apr 24, 2023
• Publicly Available Date: Apr 24, 2023
• Award Date: Feb 24, 2022