A lady sat in a wheel chair facing away on a private street.
A lady sat in a wheel chair facing away on a private street.

Dementia in South Asian communities in the UK: why it’s important not to assume that they ‘look after their own’ (part one)

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In this blog post, I will explore the misconception that South Asian communities in the UK prefer to look after people with dementia themselves, often without the need or desire for outside help. I will consider how this misconception is harmful in that it perpetuates the impression that cultural factors act as the main barrier to accessing help, shifting the responsibility onto individuals and families, rather than examining how current services might be inaccessible or culturally inappropriate, and simultaneously ignoring wider structural and societal issues. 

Please read the second part of this blog post called 'Dementia in South Asian communities in the UK: why it’s important not to assume that they ‘look after their own’ (part two)'.

Dementia in South Asian communities - background to the issue

Dementia is an umbrella term used to describe ‘a group of symptoms including memory loss, confusion, mood changes and communication difficulties’ (Alzheimer’s Research UK, 2022, para 1). Over 920,000 people in the United Kingdom (UK) have dementia (Wittenberg et al., 2019), with an estimated 25,000 from ethnic minority groups (All-Party Parliamentary Group [APPG], 2013). The proportion of people with dementia from ethnic minority groups is rapidly increasing, as those who migrated to the UK in the 1950s-70s are now approaching their seventies and eighties. The number of people living with dementia from ethnic minority groups is projected to rise 7-fold by 2051, compared to just 2-fold in their White British counterparts (Knapp & Prince, 2007; Tuerk & Sauer, 2015). South Asian people make up 9.3% of the UK population (Office for National Statistics, 2021), although the actual number living with dementia is unknown due to recognised issues with diagnosing dementia (Cooper et al., 2009). Although South Asian people comprise the largest ethnic minority group, they form a ‘seldom-heard group’ in health and social care (Healthwatch, 2021). It is therefore more vital than ever to understand and meet the needs of this growing group, to be able to deliver effective dementia services for South Asian people with dementia and carers.

We know that ethnic minority groups face greater health inequalities in dementia care, with lower rates of service access, later diagnosis (Hossain et al., 2020; Pham et al., 2018) and differences in dementia medication prescribing (Jones et al., 2020). Ethnic minority groups also have higher rates of young onset dementia (Knapp & Prince, 2007) and are at a higher risk of developing dementia due to increased genetic predispositions to heart disease and diabetes (Astin & Atkin, 2010; Ooldroyd et al., 2005). Amongst South Asian communities, the majority of dementia care is undertaken in home settings, with lower rates of admission to care homes and lower representation in dementia service usage (Blakemore et al., 2018; Herat-Gunaratne at al., 2010; Hossain et al., 2020; Moriarty et al., 2011), putting greater strain on family carers (Giebel et al., 2015). Reasons for this have commonly been attributed to ‘cultural factors’, propagating the myth that South Asian families prefer to ‘look after their own’ (Katbamna et al., 2004). Whilst ‘cultural factors’ indeed play a part, they are not the whole story, and often obfuscate the main underlying reasons for these apparent health inequalities, which I will explore in more detail below.

The pitfalls of focusing on ‘culture’

The Cambridge Dictionary defines culture as ‘the way of life, especially the general customs and beliefs, of a particular group of people at a particular time’ (n.d., para 1). There is no denying that culture is therefore incredibly important; it is a part of our identity and how we make sense of the world, consequently influencing our attitudes to illness and health, how we interact with services and our preferences for care. 

Research on dementia in South Asian groups has often focused on how ‘culture’ affects experiences of dementia and care and has highlighted a number of important issues and barriers to be aware of, such as reduced knowledge about dementia and alternative health beliefs (e.g. viewing dementia as a normal part of ageing), which contributes to later presentation to services and diagnosis (Alzheimer’s Society, 2021; Moriarty et al., 2011). Stigma has also been shown to be a significant factor in some communities, with dementia sometimes viewed as a moral failing, a punishment from God or akin to having a mental illness (Hossain at al., 2020), all of which can be a source of shame for individuals and families (Parveen et al., 2016) and may even negatively affect the marriage prospects of younger family members (Mackenzie, 2006). Stigma may therefore lead to reduced help-seeking, hiding dementia symptoms and later diagnosis (Jutlla, 2015). Cultural expectations to care for close family members with dementia at home have been highlighted in several studies as being a barrier to accepting outside help or considering care home placement (Alzheimer’s Society, 2021; Bowes & Wilkinson, 2003; Herat-Gunaratne, 2020), leading to greater carer burden, with a pattern of help-seeking at crisis point (Alzheimer’s Society, 2021; Atcha, 2018; Moriarty et al., 2011). Brijnath (2011) highlights the importance of ‘seva’ or duty of care towards older family members in India, and research has shown that this is translatable to UK settings (Alzheimer’s Society, 2021). Furthermore, caring has been noted to have a significant gendered aspect, with the majority of caring duties undertaken by female family members, even if the main listed carer is male (Adamson & Donovan, 2005, Hossain et al., 2019). Because of the complex ways in which ‘culture’ may affect experiences of dementia and care, it is reasonable to agree that taking into account an individual’s cultural background and beliefs are an important component of delivering person-centred dementia care (Kitwood, 1990).

However, as highlighted by the Cambridge Dictionary (n.d.) definition, culture is not static and changes over time. The danger of using ‘cultural factors’ as the main explanation for health inequalities in dementia for South Asian communities is that it ignores the changing and dynamic socio-cultural and economic landscape. Generational shifts in South Asian communities have meant that more women than ever are now in employment, which means that many have less capacity and willingness to take on caring responsibilities (Hossain et al., 2019). Furthermore, the past few decades have seen a rise in nuclear family structures and a subsequent reduction in extended families living together under one roof, due to occupational mobility, socioeconomic factors and housing issues (Modood et al., 1997; Stopes-Roe & Chochrane, 1990), which has had a considerable impact on the sharing of caring responsibilities and support structures across families. More recent research (Jutlla, 2021) has in fact shown that there is a growing desire for help and support rather than resistance, but that the current support on offer is not culturally appropriate or relevant to the South Asian communities’ needs. Furthermore, focusing on cultural factors, particularly the notion that ‘they look after their own’ (Katbamna et al., 2004), diminishes the focus on more significant casual factors that underly health inequalities, such as socio-economic and structural barriers (which I will elaborate on below, see Figure 2). South Asian families are often viewed as a self-sufficient unit – a stereotyped image utilised by health and social services, which has a significant impact on how services are assigned and delivered, particularly in the context of ongoing cuts to public services (Purewal & Jasani, 2017). 

The focus on ‘culture’ in research also lends itself to ‘blackbox epidemiology’ (Weed, 1998), which is an approach that reports on ethnic minority culture under one umbrella, creating unhelpful generalisations. Such an approach detracts from the heterogeneity and diversity of South Asian communities, which encompass different religions, languages and subcultures. Research utilising a ‘blackbox epidemiology’ approach thus ignores the nuances of ethnicity, language and culture, as well as other potential variables, therefore neglecting to take these into account when designing services (Botsford et al., 2012).

What about structural and societal factors?

Whilst taking into account an individual’s culture is essential in order to be able to provide person-centred care, the person-centred care model has itself been criticised for not taking into account wider structural and societal factors, which are especially relevant to the lived experiences of those from ethnic minority groups (Hulko, 2002). Structural barriers may include socioeconomic status, employment levels and access, income, educational attainment, housing status and area deprivation (which all act on the institutional, community and policy bands of the socio-ecological model in Figure 2 above), with inequalities accumulating across the life course and across generations (Mirza & Warwick, 2022; Nazroo, 2022). Little focus has been paid to links between ethnicity, socio-economic status and ill health, despite research demonstrating that health inequalities faced by ethnic minority groups are in large part explained by the greater number of structural barriers they face. There is evidence that Pakistani and Bangladeshi populations, who are amongst the most socio-economically deprived, face the greatest level of health inequalities in the UK today, which increases exponentially with age (Stopforth et al., 2022). Additional societal barriers that many South Asian people living with dementia and their families may face include language barriers, experiences of interpersonal racism, marginalisation and fears of discrimination.

Despite research consistently showing a link between structural and societal barriers and negative health outcomes across the general population, when it comes to examining dementia and care amongst ethnic minority groups and reasons for poor levels of access and treatment, most policy-makers have historically focused on ‘culture’ or difference, rather than addressing the most obvious root causes – perhaps because so doing would necessitate policy change on a more systemic level. However, research into dementia and ethnicity during the Covid-19 pandemic (West et al., 2021), as well as in more recent years (Jutlla, 2021), has begun to draw more attention to these links, begging the question: ‘how do we begin to address these?’

Further information

  • Author profile

    Pushpa Nair is a GP and first year PhD student, with an interest in dementia, ageing and health inequalities. Her PhD aims to explore experiences of dementia and care for people with dementia from South Asian backgrounds using ethnographic methods.

  • Target audience

    This blog may be of interest to researchers, educators, health and social care professionals and policy-makers.

  • References

    Adamson, J. & Donovan, J. (2005). ‘Normal Disruption’: South Asian and African/Caribbean Relatives Caring for an Older Family Member in the UK. Social Science and Medicine, 6(1), 37-48.

    Ahmed, S. (2012). On being included: Racism and diversity in institutional life. Duke University Press. https://doi.org/10.1515/9780822395324

    All-Party Parliamentary Group on Dementia [APGG]. (2013). Dementia does not discriminate. The experiences of Black, Asian and minority ethnic communities. Alzheimer’s Society. View the 'Dementia does not discriminate' pdf.

    Alzheimer’s Research UK. (n.d.). Alzheimer’s disease. Retrieved February 6, 2023, from the Alzheimer's Research UK website.

    Alzheimer’s Society. (2021). Ethnic minority communities: Increasing access to a dementia diagnosis. View the 'Ethnic Minority Communities' pdf.

    Armstrong, M., Aker, N., Nair, P., Walter,s K., Barrado-Martin, Y., Kupelo, N., Sampson, E. L., Manthorpe, J., Westye, E. & Davies, N. (2022). Trust and inclusion during the Covid-19 pandemic: perspectives from Black and South Asian people living with dementia and their carers in the UK. International Journal of Geriatric Psychiatry, 37( 3), 1- 13. https://doi-org.libproxy.ucl.ac.uk/10.1002/gps.5689

    Astin, F. & Atkin, K. (2010). Ethnicity and coronary heart disease: making sense of risk and improving care [Briefing paper]. Race Equality Foundation. View the Race Equality Foundation website.

    Atcha, M. (2018). Access to dementia diagnosis and support in a diverse South Asian community: A qualitative study [Doctoral thesis, Lancaster University]. Lancaster University. https://doi.org/10.17635/lancaster/thesis/378

    Baghirathan, S., Cheston, R., Hui, R., Chacon, A., Shears, P., & Currie, K. (2018). A grounded theory analysis of the dementia experiences of people from three BME communities: Balancing the need for support against fears of being diminished. Dementia, 19(5), 1672–1691.

    Blakemore, A., Kenning, C., Mirza, N., Daker-White, G., Panagioti, M., & Waheed, W. (2018). Dementia in UK South Asians: a scoping review of the literature. BMJ Open, 8, e020290. https://doi.org/10.1136/bmjopen-2017-020290 

    Botsford, J., Clarke, C. L. & Gibb, C. E. (2012). Dementia and relationships: experiences of partners in minority ethnic communities. Journal of Advanced Nursing, 68, 2207-2217. https://doi-org.libproxy.ucl.ac.uk/10.1111/j.1365-2648.2011.05905.x 

    Bowes, A. & Wilkinson, H. (2003). 'We didn't know it would get that bad': South Asian experiences of dementia and the service response. Health & social care in the community, 11(5), 387–396. https://doi.org/10.1046/j.1365-2524.2003.00440.x 

    Brijnath, B (2011). Alzheimer’s and the Indian Appetite. Medical Anthropology, 30(6), 610–628. https://doi.org/10.1080/01459740.2011.582473

    Cambridge Dictionary. n.d. Meaning of culture in English. Retrieved February 2, 2023, from the Cambridge Dictionary website.

    Cheston, R. Parveen, S. Dodd, E. Jutlla, K. Smith, P. Truswell, D. & Butt, J. (in-progress). The south Asian Dementia diAgnosis PaThway (ADAPT). An online toolkit of enhanced interventions. Funder: National Institute for Health Research, Research for Patient Benefit, REF: NIHR200736.

    Cooper, C., Tandy A. R., Balamurali, T. B. & Livingston, G. (2009). A systematic review and metaanalysis of ethnic differences in access to dementia treatment, services and research. American Journal of Geriatric Psychiatry, 18(3), 193-203. https://doi.org/10.1097/JGP.0b013e3181bf9caf

    de Vries, K., Banister, E., Dening, K. H. & Ochieng, B. (2019). Advance care planning for older people: The influence of ethnicity, religiosity, spirituality and health literacy. Nursing Ethics, 26(7-8),1946-1954. https://doi.org/10.1177/0969733019833130

    Giebel, C., Zubair, M., Jolley, D., Bhui, K.S., Purandare, N., Worden, A. & Challis, D. (2015). South Asian older adults with memory impairment: improving assessment and access to dementia care. International Journal of Geriatric Psychiatry,30(4), 345-56. https://doi.org/10.1002/gps.4242

    Gregory, A. (2022, June 26). UK health services failing south Asian people with dementia, says report. The Guardian. Visit The Guardian website.

    Herat Gunaratne, R., Mukadam, N., Rapaport, P., Leverton, M., Higgs, P., Samus, Q. & Burton, A. (2019). "In the Bengali vocabulary, there us no such word as care home": Caring experiences of UK Bangladeshi and Indian family carers of people living With dementia at home. The Gerontologist,60(2), 331-339. https://doi.org/10.1093/geront/gnz120

    Hossain, M. Z., Stores, R., Hakak, Y., & Dewey, A. (2019). Traditional gender roles and effects of dementia caregiving within a South Asian ethnic group in England. Dementia and Geriatric Cognitive Disorders, 48(5-6), 330–336. https://doi.org/10.1159/000506363 

    Hossain, M.,  Crossland, J., Stores, R., Dewey, A., Hakak, Y. (2020). Awareness and Understanding of Dementia in South Asians: A Synthesis of Qualitative Evidence. Dementia, 19(5), 1441–1473. https://doi.org/10.1177/147130121880064 

    Hulko, W. (2002). Making the links: Social theories, experiences of people with dementia, and intersectionality In A. Leibling & L. Scheinkman (Eds.), The diversity of Alzheimer’s Disease: Different Approaches and Contexts (pp. 231-264). CUCA-IPUB. 

    Jones, M. E., Petersen, I., Walters, K., Bhanu, C., Manthrope, J., Raine, R., Mukadam, M. & Cooper, C. (2020).  Differences in psychotropic drug prescribing between ethnic groups of people with dementia in the United Kingdom. Clinical Epidemiology, 12, 61–71. https://doi.org/10.2147/CLEP.S222126 

    Jutlla, K. (2014). The impact of migration experiences and migration identities on the experiences of services and caring for a family member with dementia for Sikhs living in Wolverhampton, UK. Ageing and Society, 35(5), 1032-54. https://doi.org/10.1017/S0144686X14000658 

    Jutlla, K. (2015). Dementia and caregiving in South Asian communities In J. Botsford & K. Harrison Denning (Eds.), Dementia, Culture and Ethnicity: Issues for All (pp. 107-126). Jessica Kingsley Press.

    Jutlla, K. (2021). Understanding the experiences of post-diagnostic dementia support for the South Asian community in England. Alzheimer’s Society.

    Jutlla, K. & Kaur, H. (2019). The experiences of dementia in South Asian communities in the UK. In D. Truswell (Ed), Dementia in ethnic minorities. Jessica Kingsley Press.

    Katbamna et.al. 2004. Do They Look After Their Own? Informal Support for South Asian Carers. Health and Social Care in the Community, 12(5), 398–406.https://doi.org/10.1111/j.1365-2524.2004.00509.x 

    Kitwood, T. (1990). The dialectics of dementia: With particular reference to Alzheimer‟s Disease. Ageing and Society, 10(2), 177-196. https://doi.org/10.1017/S0144686X00008060 

    Knapp, M. & Prince, M. (2007). Dementia UK: The Full Report. Alzheimer’s Society. Read the Dementia UK - Full Report pdf.

    Lee, K. & Bartlett, R. (2021). Material Citizenship: An ethnographic study exploring object–person relations in the context of people with dementia in care homes. Sociology of Health & Illness, 43, 1471-1485. https://doi-org.libproxy.ucl.ac.uk/10.1111/1467-9566.13321

    Mackenzie, J. (2006). Stigma and dementia: East European and South Asian family carers negotiating stigma in the UK. Dementia, 5(2), 233-247.  http://dx.doi.org/10.1177/1471301206062252

    MacPherson, W. (1999). The Stephen Lawrence Inquiry. The Stationary Office. Visit the National Archives website.

    McLeroy, K. R., Bibeau, D., Steckler, A., & Glanz, K. (1988). An ecological perspective on health promotion programs. Health Education Quarterly, 15(4), 351-377. https://doi.org/10.1177/109019818801500401

    Mirza, H. & Warwick, R. (2022). Race and ethnicity. IFS Deaton Review of Inequalities. Read the Race and Ethnicity pdf.

    Modood, T., Berthoud, R., Lakey, J., Nazroo, J., Smith, P., Virdee, S. & Beishon, S. (1997). Ethnic Minorities in Britain: Diversity and Disadvantage. Policy Studies Institute.

    Moriarty, J. Sharif, N. & Robinson, J. (2011). Black and minority ethnic people with dementia and their access to support and services [Research briefing 35]. Social Care Institute for Excellence. Read the Black and minority ethnic people with dementia and their access to support and services pdf.

    Nair, P., Barrado-Martín, Y., Anantapong, K., Moore, K., Smith, C., Sampson, E., Manthorpe, J., Walters, K. & Davies, N. (2022). Experiences of Carers and People with Dementia from Ethnic Minority Groups Managing Eating and Drinking at Home in the United Kingdom. Nutrients, 14(12), 2395. https://doi.org/10.3390/nu14122395 

    Nazroo, J. (2022). Race/ethnic inequalities in health: moving beyond confusion to focus on fundamental causes. IFS Deaton Review of Inequalities. Visit the IFS website.

    Office for National Statistics (2022). Ethnic group, England and Wales: Census 2021 [Bulletin]. Visit the ONS website.

    Oldroyd, J., Banerjee, M., Heald, A. & Cruikshank, K. (2005). Diabetes and ethnic minorities. Postgraduate Medical Journal, 81, 486-490. http://dx.doi.org/10.1136/pgmj.2004.029124 

    Parveen, S. Peltier, C. & Oyebode, J. (2016). Perceptions of dementia and use of services in minority ethnic communities: a scoping exercise. Health and Social Care in the Community, 25(2), 734–742. https://doi.org/10.1111/hsc.12363

    Pham, T. M., Petersen, I., Walters, K., Raine, R., Manthorpe, J., Mukadam, N. & Cooper, C. (2018). Trends in dementia diagnosis rates in UK ethnic groups: analysis of UK primary care data. Clinical epidemiology, 10, 949–960. https://doi.org/ 10.2147/CLEP.S152647

    Purewal N. & Jasani, R. (2017). South Asian women elders and everyday lives of ‘care in the community’ in Britain: the neoliberal turn in social care and the myth of the family, South Asian Diaspora, 9(2), 111-127. https://doi.org/10.1080/19438192.2017.1339381

    Race Equality Foundation. (2022). ADAPT South Asian dementia pathway.https://raceequalityfoundation.org.uk/adapt/ 

    Rowles, G. D., & Chaudhury, H. (Eds.) (2005). Home and identity in late life: International perspectives. Springer Publishing Company.

    Stopforth, S. & Gayle, V. (2022). Parental social class and GCSE attainment: Re-reading the role of ‘cultural capital’. British Journal of Sociology of Education, 43(5), 680-699. https://doi.org/10.1080/01425692.2022.2045185

    Solloway, P. (2022). UK health services failing south Asian people with dementia, says report. [Photograph]. The Guardian. Visit The Guardian website.

    Stillwell, P (2013). Care home and hospitals failing people with dementia [Photograph]. The Guardian. Visit The Guardian website.

    Stopes-Roe, M. E., & Cochrane, R. (1990). The child-rearing values of Asian and British parents and young people: An inter-ethnic and inter-generational comparison in the evaluation of Kohn's 13 qualities. British Journal of Social Psychology, 29(2), 149–160. https://doi.org/10.1111/j.2044-8309.1990.tb00895.x

    Tuerk, R., & Sauer, J. (2015). Dementia in a Black and minority ethnic population: Characteristics of presentation to an inner London memory service. British Journal of Psychiatry Bulletin, 39(4), 162–166. https://doi.org/10.1192/pb.bp.114.047753

    Weed D. L. (1998). Beyond black box epidemiology. American journal of public health, 88(1), 12–14. https://doi.org/10.2105/ajph.88.1.12

    West*, E., Nair*, P.m Barrado-Martin, Y., Walters, K., Kupeli, N., Sampson, E. L. & Davies, N. (2021). Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups. BMJ Open, 11, e050066. https://doi.org/10.1136/bmjopen-2021-050066

    Wilson, A., Bankart, J., Regen, E., Phelps, K., Agarwal, S., Johnson, M., Raghavan, R., Sitaram, B. & Subramaniam, H. (2020). Ethnic variations in referrals to the Leicester memory and dementia assessment service, 2010 to 2017. British Journal of Psychiatry Open, 6(83), 1–6. https://doi.org/10.1192/bjp.2020.69.

    Wittenberg, R., Hu, B., Barraza-Araiza, L & Rehill, A. (2019). Projections of older people with dementia and costs of dementia care in the United Kingdom, 2019-40 [Working paper 5]. Care Policy and Evaluation Centre (LSE). Read the Projections of older people living with dementia and costs of dementia care in the United Kingdom pdf.

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