Table 1.

Summary of characteristics and findings of included studies

Author	Year	Study design	Total sample size	Sample	Setting	Summary of main findings
Adamson16	2001	Qualitative	30	n=12 (40%) South Asian carers of people with dementia	Healthcare services (carer support, day centres, psychiatric services)	Lack of knowledge of dementia found in South Asian group. South Asian participants talked about symptoms being a result of past actions in life and apportioning blame. They also believed that other physical conditions and their associated medications could cause dementia, such as antidepressants for depression.
Adamson and Donovan17	2005	Qualitative	36	n=15 (42%) South Asian carers of people with dementia	Community	South Asian participants talked about caring for family as a cultural norm and wider families were more likely to live together to facilitate this.
Bhatnagar and Frank18	1997	Cross-sectional study	100	Aged 65-89 years, from Indian subcontinent and living in Bradford	Community	Prevalence of dementia 4% as diagnosed by psychiatrist and 7% using Hindi translation of diagnostic measure (GMS-A).
Bowes and Wilkinson19	2003	Qualitative	11	11 interviews with carers 4 case studies of South Asian patients	Community	Carer interviews: demand for services, a need to develop awareness and knowledge in the community and to promote a culturally sensitive response from services. Case studies: negative experiences of dementia, poor quality of life, need for support, lack of access to appropriate services, little knowledge about dementia, isolation from both community and family life.
Giebel et al 20	2016	Mixed method pilot	33	Three groups—South Asian, over 60 years: without memory problems; memory problems not consulted GP; memory problems had consulted GP	Community	Those who had not consulted a GP often considered memory problems to be given by God and did not identify medical support as appropriate for them. Those who had attended a consultation with GP identified forgetfulness and loss of social meaning as symptoms of dementia.
Giebel et al 42	2016	Questionnaire validation	25	n=25 South Asian	Community	123 new perceptions around South Asian their understanding of dementia were identified. These were added to the BEMI-C to create a new checklist (BEMI-D).
Haider and Shah21	2004	Pilot study	62	n=31 South Asian, aged 65–96 years n=31 white British, aged 65–90 years	Day hospital	South Asian participants score lower on the BEHAVE-AD phobia and anxiety subscale. Alzheimer’s disease associated with vascular dementia with affective disturbance.
Hailstone et al 22	2016	Questionnaire validation	58	Mean age 60 years 59% female (n=34) First-generation and second-generation South Asians	Community	Strongest predictor of willingness to seek help for dementia was perceived social pressures from significant others. Attitudes in the questionnaire predicted 77% of variance in willingness to seek help, but no relationship was found with dementia knowledge.
Jutlla23	2015	Qualitative	12	South Asian Sikhs caring for someone with dementia and living in Wolverhampton, UK	Community	Understandings participant’s migration experiences and identities is important for understanding family carers experience of services when caring for someone with dementia.
Kaur et al 24	2010	Service evaluation	NA	An Asian link nurse working in Wolverhampton, UK	Community mental health team	Having an Asian link nurse was vital in providing education about dementia for South Asian people.
La Fontaine et al 25	2007	Qualitative	49	South Asians aged 17–60 years who were English, Hindi or Punjabi speaking	Community	Interviews highlighted that cognitive impairment was rarely mentioned when talking about ageing. Ageing was seen as a time of withdrawal and isolation. There was a sense of stigma and a lack of knowledge about mental health services, which leads to exclusion from these services.
Lawrence et al 26	2008	Qualitative	32	n=10 (31%) South Asian carers of people with dementia	Community	South Asian carers possessed a traditional caregiver ideology, conceptualising caregiving as natural, expected and virtuous. This informed their attitudes towards formal healthcare services.
Lawrence et al 27	2011	Qualitative	30	n=9 (30%) South Asian Aged 67–87 years	Mental health services	Interviews highlighted that participants engaged in a process of appraisal where they assessed how much their condition affected valued elements of their life.
Lindesay et al 28	1997	Questionnaire validation	1297	n=149 (11%) South Asian, Gujarati	General practice	Mean MMSE scores were lower in the Gujarati group due to the effects of age, education and visial impairment. The MMSE performed comparably in both groups as a screen for moderate-to-severe dementia but was less effective for Gujaratis with mild dementia.
Mackenzie29	2006	Qualitative	21	n=16 (76%) South Asian carers of people with dementia	Community	In the South Asian group stigma was linked to religious and magical explanations for the onset of dementia, which affected the ability of carers to access support.
McCracken et al 41	1997	Cross-sectional study	579	n=12 (2%) Asian aged over 65 years	Community	Prevalence of dementia 9% among English-speaking Asian participants.
Mukadam et al 30	2015	Qualitative	53	South Asians aged 18–83 years	Community	Stigma around dementia was linked to ideas of ‘madness’ a lack of physical explanations and a lack of treatment. Barriers to help-seeking were that memory problems were an inevitable part of ageing. Denial of symptoms was evident in order to maintain position in the family and community, and due to fear of institutionalisation.
Odutoye and Shah31	1999	Cross-sectional study	242	n=29 (12%) South Asians newly referred to psychogeriatric unit between 1995 and 1997 aged 58–96 years	Psychogeriatric unit	South Asians were less likely to have dementia than white British elders (X2=5.05, 1 df, P<0.03).
Purandare et al 32	2007	Cross-sectional study	246	n=191 (78%) South Asian, mean age 72.4 years (SD 10.6)	Community—day centre	Knowledge of dementia was poor in both South Asian and white British people. South Asians had less knowledge about basic aspects of dementia (P<0.001) and the epidemiology of dementia (P<0.001) as compared with white British people.
Rait et al 33	2000	Validation of screening instrument	120	Community resident South Asians aged over 60 years. n=65 Gujarati speaking, mean age 70 years (SD 6.8) n=39 Pakistani group, mean age 68 years (SD 6.0)	Community	Both modified screening tests (MMSE and AMT) had high sensitivity scores but ethnic background was found to influence the cut-off scores for these measures. The MMSE cut-off score was found to be significantly higher in the Pakistani group (≥27, sensitivity 100%, specificity 95%) compared with the Gujarati group (≥24, sensitivity 100%, specificity 77%).
Regan40	2016	Case study	NA	Case study of a male Muslim patient with young onset frontotemporal dementia	Dementia services	Mostly negative experiences of accessing services and an inability to access support from either family or the religious community. Services not equipped to support people with young onset dementia from an ethnic minority.
Seabrooke and Milne34	2009	Service pilot	4	South Asian patients aged 65–93 years with memory problems	Primary care	Inviting older Asian patients with memory problems to see a specially trained Asian nurse using a culturally appropriate information leaflet encouraged a small number of people to access the service.
Shah et al 35	1998	Longitudinal	11	Gujarati people over 65 years living in Leicester, UK	Community	Seven of the 11 followed up (64%). Diagnosis of dementia was reconfirmed in 6 out of 7 cases (86%) and there was evidence of further cognitive decline.
Shah36	1999	Case study—descriptive methodology	12	Gujarati patients (aged 65–90 years) seen by Gujarati psychogeriatrician	Psychogeriatric unit	n=4 (33%) with diagnosis of dementia. Difficulties interviewing Gujarati patients reported. Identifying cognitive signs and symptoms reported as most difficult. Few patients could speak English and majority could not read or write.
Uppal et al 37	2014	Qualitative	28	Sikh participants aged over 18 years Able to speak either Punjabi and/or English	Community	Three key themes: awareness and interpretation of the characteristics of dementia; multiple perspectives of the same symptoms and causes of dementia.
Turner et al 38	2005	Qualitative	192	n=96 (50%) South Asian, aged 58–85 years	Community	South Asian people had less specific knowledge of dementia and believed that dementia was a normal part of ageing. Also less likely to think that medical treatment was available. Care was seen as provided by the family in the first instance.
Redelinghuys and Shah39	1997	Cross-sectional study	235	n=39 (17%) South Asians, aged 65–95 years using a geriatric psychiatry service in South London	Geriatric psychiatry	n=6 (15%) of the South Asian group had dementia compared with n=43 (22%) of the white British elders. There were no differences found between the two groups in terms of use of health and social services.

AMT, Abbreviated Mental Test; BEHAVE-AD, Behavioural Pathology in Alzheimer’s Disease Rating Scale; BEMI-C, Barts Explanatory Model Inventory Checklist; BEMI-D, BEMI-Dementia; GMS-A, Geriatric Mental State; GP, general practitioner; MMSE, Mini-Mental State Examination; NA, not available.