Understandings of dementia and alternative help-seeking methods amongst Christian and Muslim BAME groups : implications for care pathways

Farooq, Jawaria (2022) Understandings of dementia and alternative help-seeking methods amongst Christian and Muslim BAME groups : implications for care pathways. (PhD thesis), Kingston University, .


The aim of this thesis is to investigate alternative help-seeking methods for dementia care among Black African and Black Caribbean Christians (BABCC) and South Asian Muslims (SAM) in the UK with a view to develop more effective care pathways. There has been limited research on Black, Asian and Minority Ethnic (BAME) groups and alternative pathways to dementia care. The findings of this thesis allow for a more integrated approach to understanding help-seeking decisions that are made within the BAME community in the UK than has been prevalent, and to give insight to alternative care pathways that can be utilised alongside professional care. Previous research has found that BAME groups face certain barriers to dementia care, which leads to delayed diagnosis of dementia, underutilisation of services, and people with dementia (PwD) being more likely to be dissatisfied with the services as compared to White counterparts. There are efforts being made to remove these barriers and provide culturally appropriate care. Ethnicity, culture, and religion were found to play an important role in BAME groups’ understandings and experiences of dementia. To understand the current research on dementia care pathways, a critical literature review was carried out, which suggested that there are barriers to professional health care and that individuals utilised alternative help-seeking methods which needed to be further researched. This thesis adopted a mixed method sequential design. Study 1 is quantitative research which examines BAME groups and their White counterparts understanding of dementia. It was found that BAME groups were more likely to believe that religious and spiritual factors were the causes of dementia, and that alternative treatments were beneficial for PwD. Study 2 was qualitative research which explored PwD’s understandings and experiences through their caregivers. Four overarching themes were identified: 1) facilitators to care pathways, 2) barriers and obstacles to seeking help, 3) alternative methods to help- seeking and coping and 4) negative perceptions and stigma. Study 3 was also qualitative research which iii explored the role of religion and religious leaders in help-seeking methods for dementia. Four overarching themes were also identified: 1) dementia beliefs, 2) influence of religion, 3) sources of help and 4) faith and science. These findings are further elaborated to construct a model which illustrates the current help-seeking process (including alternative methods) and its practical application in the UK namely how the knowledge generated can be used to develop better integrated care pathways enabling earlier engagement with services, diagnosis, support and outcomes for PwD and their carers and families.

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