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Title: Dementia care access and experience for South Asians in the UK : the influence of Hindu, Sikh and Muslim religions
Author: Regan, Jemma
Awarding Body: Staffordshire University
Current Institution: Staffordshire University
Date of Award: 2013
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Background: In the UK, South Asian and Black Caribbean communities are more at risk of developing vascular dementia and experience a higher rate of young onset dementia (under age 65 years), compared with the majority ethnic population (Seabrooke & Milne, 2004). Despite this, Black and Minority Ethnic (BME) persons with dementia are underrepresented in health services, receive diagnoses later in disease progression and are less likely to access anti-dementia medication or partake in research trials (Cooper, Tandy, Balamurali et al., 2009). An emerging theme in culture and dementia research is the impact of religion on dementia in terms of perceiving the illness, accepting the illness, coping with the illness and accessing services (Milne & Chryssanthopoulou, 2005). Religious beliefs and practices offer one explanation for BME underrepresentation in mainstream health and social care services (MHSCS). MHSCS appear ill-equipped to respond to the religious needs of ethnic minority individuals (Bowes & Wilkinson, 2003). Aim: To conduct an investigation of the influence of religion on access to - and experiences of - dementia care services, for South Asians from the Sikh, Hindu and Muslim communities in the West Midlands. Method: An exploratory, qualitative study employing Critical Realist Grounded Theory methodology (Strauss & Corbin, 1990) utilising a multimethods approach of semi-structured interviews and observations informing a three-phase data collection and data analysis model with five service user and service provider cohorts. Results: A two-stage model: “Existing Service Provision” and “Service Improvements” demonstrates religious beliefs influence low knowledge of dementia, stigma of mental illness, isolation and family duty of care. This led to ill-informed care choices and carer burden. Persons with dementia were also under-identified within their religious communities. Regular outreach in to South Asian religious communities is vital to educate and identify underrepresented persons, allow informed dementia care choices and relieve carer burden. Scripture-influenced dementia training is required to dispel stigma and improve care options. Investment in face to- face communication with translators and a shift away from paper resources is required. Conclusion: The full potential of religious communities in dementia care provision is yet to be realised. Utilising this resource as a symbiotic channel – firstly, to identify persons with dementia and educate the congregation about dementia - and secondly, to utilise the existing congregation to meet the psycho-social needs of the person with dementia, offers a holistic care package, leading to informed care choices.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available
Keywords: A100 Pre-clinical Medicine ; A300 Clinical Medicine ; B700 Nursing ; L300 Sociology