Dementia in UK South Asians: a scoping review of the literature

Blakemore, Amy; Kenning, Cassandra; Mirza, Nadine; Daker‐White, Gavin; Panagioti, Maria; Waheed, Waquas

doi:10.1136/bmjopen-2017-020290

Cited by 31 publications

(34 citation statements)

References 45 publications

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“…There was an overwhelming belief from the caregivers that Pakistani people in general had little or no awareness of dementia. These findings are in line with South Asians living in the UK who have shown to have less basic knowledge about dementia than their White-British counterparts (Blakemore et al, 2018). Also, this supports previous findings from the study of caregivers of people with dementia in Rawalpindi/Islamabad, Pakistan, who showed very little or no knowledge of dementia (Qadir et al, 2013).…”

Section: Discussionsupporting

confidence: 88%

Dementia awareness, beliefs and barriers among family caregivers in Pakistan

et al. 2020

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OBJECTIVES: Dementia research and services in Pakistan are limited. The following was explored in experiences of family caregivers of people with dementia in Pakistan: a) to determine whether culture and religion play a role in caregiving; b) to draw insights on how family caregivers cope, what barriers they face, and what help they would be willing to accept; and c) to determine how these findings could be used to raise awareness and influence public policies in improving the lives of families living with dementia. METHODS: The experiences of family caregivers of people with dementia in Pakistan were explored via semi-structured interviews (10 in Lahore; 10 in Karachi). This was part of a larger qualitative study conducted about dementia in Pakistan. Caregivers interviewed were aged 35-80 (14 female). Most caregivers in the study were educated and affluent. Interviews were conducted in Urdu, translated into English and thematically analysed. RESULTS: Five themes emerged: Knowledge & Awareness; Stigma; Importance of Religion and Duty to Care; Use of Day Care Centres and Home-help; and Barriers. A lack of dementia awareness exists in Pakistan. The religious duty to care for family influenced caregiving decisions. Day care centres and home-help were accessed and viewed positively. The caregivers also wanted extracurricular activities for people with dementia, support groups for caregivers, and better training for healthcare staff. Novel findings included that caregivers felt that dementia should not be stigmatized, and awareness should be raised in Pakistan via TV, radio and social media, but not inside mosques. DISCUSSION: Additional research is necessary to determine if positive views of day care centres and home-help exist more widely. Attitudes and experiences regarding stigma may be different for caregivers of people with more advanced dementia. We recommend raising dementia awareness, allocating more funds to dementia services, and an emphasis on home-based care.

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Section: Discussionsupporting

confidence: 88%

Dementia awareness, beliefs and barriers among family caregivers in Pakistan

et al. 2020

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“…However, it is also possible that there was under-reporting of dementia symptoms10 18 in people from BAME communities due to stigma or cultural reasons. This could also be due to delay in accessing healthcare services by members of BAME communities unless they felt it was severe,19 or clinicians not recognising symptoms of dementia in BAME groups due to language barriers, or due to more family and community support which lead to delay in diagnosis of dementia 20. Hence, actual rates might be higher for those belonging to Black or South Asian ethnic groups than our findings.…”

Section: Discussionmentioning

confidence: 59%

Ethnicity and risk of diagnosed dementia after stroke: a cohort study using the Clinical Practice Research Datalink

Shiekh

Forbes

Mathur

et al. 2019

J Epidemiol Community Health

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IntroductionThe UK has over 1.2 million stroke survivors. Stroke is a major risk factor for dementia, and along with other risk factors such as hypertension and diabetes, is more common among Black, Asian and other ethnic minorities (BAME). We aimed to explore whether diagnosed dementia differed by ethnicity among adult stroke survivors.MethodologyUsing the UK Clinical Practice Research Datalink and linked hospital data, we conducted a cohort study among patients aged ≥40 years who had an incident stroke between 2005 and 2016. We fitted multivariable Cox proportional hazard models to estimate ethnic differences in the risk of poststroke dementia, adjusting for major clinical and social confounders.ResultsOur cohort comprised 45 474 stroke survivors (mean age 72.6 years, 49% female), of whom 95.7% were White, 2.0% South Asian, 1.2% Black and 1.1% of Mixed/Other ethnicity. Of these, 4624 (10.2%) were diagnosed with poststroke dementia over a median follow-up of 3.26 years. Compared with the White ethnic group, those of Black ethnicity were 42% more likely to be diagnosed with dementia (adjusted HR 1.42, 95% CI 1.05 to 1.93). There was no association between any other ethnic group and poststroke dementia diagnosis.DiscussionThere was good evidence that those of Black ethnicity had higher risk of diagnosed dementia poststroke. Further understanding of the mechanisms of this relationship could help target interventions at communities most at risk of dementia poststroke.

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“…Previous qualitative studies have interviewed UK family carers for people with dementia from South Asian ethnic groups. Attitudes towards caring as natural, a continuation of family relationships, virtuous, and expected predominate in their accounts and of those of people living with dementia (Blakemore et al, 2018;Lawrence, Murray, Samsi, & Banerjee, 2008;Lawrence, Samsi, Banerjee, Morgan, & Murray, 2011;Mukadam, Cooper, Basit, & Livingston, 2011).…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“…Stigma, fear and mistrust of formal services have been cited as possible explanations for the low rate of help-seeking from formal services reported in South Asian, and other minority ethnic communities (Blakemore et al, 2018). Fear of a move to long-term care may also prevent minority ethnic families or individuals with dementia from seeking help from formal services (Blakemore et al, 2018). South Asian family carers may be more likely to conceptualise dementia as a natural aging process, possibly as an attitudinal response to the stigma associated with dementia (Lawrence et al, 2008).…”

Section: Introductionmentioning

confidence: 99%

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“In the Bengali Vocabulary, There Is No Such Word as Care Home”:Caring Experiences of UK Bangladeshi and Indian Family Carers of People Living With Dementia at Home

et al. 2019

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Background and Objectives We aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers’ understanding of, and attitudes to dementia, we explored how carers’ cultural identities and values influenced their experiences, negotiation of the caring role and relationship with services. Research Design and Methods We conducted semi-structured interviews with 10 Bangladeshi and Indian family carers of people living with dementia at home. We recruited participants from community settings in London and Bradford, UK. Interviews were audio recorded, transcribed and thematically analyzed. Results We identified 4 themes: an expectation and duty to care, expectation and duty as a barrier to accessing formal care (family carer reluctance, care recipient reluctance, and service organization), culturally (in)sensitive care, and the importance of support from informal care networks. Discussion and Implications Interviewees described tensions between generations with different understandings of familial care obligations. Expectations to manage led to burden and guilt, and the cost of caring, in terms of lost employment and relationships was striking. Unlike in previous studies, interviewees wanted to engage and be supported by services, but were frequently offered care models they could not accept. There was a tension between a state-provided care system obliged to provide care when there are no alternatives, and family carers who feel a duty to always provide alternatives. Informal social networks often provided valued support.

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Dementia in UK South Asians: a scoping review of the literature

Cited by 31 publications

References 45 publications

Dementia awareness, beliefs and barriers among family caregivers in Pakistan

Dementia awareness, beliefs and barriers among family caregivers in Pakistan

Ethnicity and risk of diagnosed dementia after stroke: a cohort study using the Clinical Practice Research Datalink

“In the Bengali Vocabulary, There Is No Such Word as Care Home”:Caring Experiences of UK Bangladeshi and Indian Family Carers of People Living With Dementia at Home

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