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 two)

Intro

Institutional racism

To truly understand the lived experiences of South Asian people with dementia and carers,  it is important not to forget the role of institutional racism, which is defined as the ‘collective failure of an organisation to provide appropriate and professional service to people because of their colour, culture, or ethnic origin;’, evident in its ‘processes, attitudes and behaviours which amount to discrimination through unwitting prejudice, ignorance, thoughtlessness and racist stereotyping which disadvantage minority ethnic people’ (MacPherson,1999, p. 28).

Many South Asian older adults may have encountered experiences of racism when they first migrated to the UK (Rowles & Chaudhury, 2005), and some of these experiences may resurface during the dementia process due to a resurgence of older memories in place of newer ones (APPG, 2013). Such interpersonal experiences of racism, combined with other structural barriers, shape an individual’s encounters with health and social care institutions; it is, therefore, paramount to consider how policies and practices within such institutions can magnify unequal outcomes and reproduce inequalities (Ahmed, 2012; Nazroo, 2022). Indeed, previous research (Jutlla, 2014) has highlighted a lack of trust among ethnic minority older adults with dementia and carers towards health and social care agencies, which became particularly amplified apparent during the Covid-19 pandemic (Armstrong et al., 2022).

Equality, Diversity and Inclusion (EDI) approaches have been framed as one possible solution for tackling institutional racism; whilst these approaches are certainly useful, it is worth being aware of institutions using superficial EDI approaches to claim legitimacy and transparency, a form of ‘performative inclusion’ (Ahmed, 2012), rather than affecting real change and progress on the ground. Researchers, too, must also be wary of using discriminatory ‘blackbox epidemiology’ (Weed, 1998) approaches, as discussed above, which detract attention and funding away from addressing structural and societal barriers.

How are dementia services affected?

The Guardian wrote a recent article about how a ‘totally inadequate system set up decades ago for a predominantly white population’ (Gregory, 2022, para 1) is the main reason for experiences of inequality in dementia care for South Asian people in the UK, based on the results a recent report published by the Alzheimer’s Society (Jutlla, 2021).

There is strong evidence that current services are not meeting the needs of South Asian people with dementia and their families – right through from before diagnosis to the point of providing support. However, contrary to previous literature citing ‘cultural factors’, such as stigma or normalisation of symptoms as the main reasons for later presentation and diagnosis of dementia (Hossain et al., 2020; Parveen et al., 2016), recent research has suggested that it is also due to medical professionals not recognising symptoms or misdiagnosing (Wilson et al., 2020; Jutlla, 2021), and that South Asian people with dementia and carers seek help from their GPs in a timely manner, rather than delay help-seeking (Jutlla, 2021). It has also been suggested that commonly used diagnostic tools for dementia may not be appropriate for South Asian populations because they rely on the assumption of a shared Eurocentric culture (e.g. asking questions about significant events in UK history (Atcha, 2018)), or may be difficult to administer due to lack of translated options in South Asian languages (Alzheimer’s Society, 2021; Blakemore et al., 2018).

Recent research (Jutlla, 2021), in keeping with previous literature (Alzheimer’s Society, 2021; Atcha, 2018; Blakemore et al., 2018; Jutlla, 2015; Jutlla & Kaur, 2019; Parveen et al., 2016) has found that South Asian people with dementia and families are often disappointed by the lack of culturally inclusive or appropriate dementia care services available to them, due to language and cultural barriers. For example, services may not take into account an individual’s religion, dietary requirements or cultural norms (Nair et al., 2022), and this may often serve as an underlying factor for reduced engagement with existing services and reluctance to admit relatives with dementia into care homes. Health and social care professionals lacking a culturally-sensitive approach can also reinforce feelings of discrimination (Atcha, 2018). The lack of South Asian representation in the health and social care workforce has often been perceived as amplifying these difficulties, sometimes necessitating the need for families and individuals to look for private carers, who speak the same language as their relative with dementia (Alzheimer’s Society, 2021).

Poor care of South Asian older adults with dementia may also be the result an already overstretched NHS and social care system, resulting in lack of time and empathy during health and social interactions (APPG, 2013). Research has highlighted how dementia care pathways can often be fragmented and difficult to navigate, with reliance on a series of gatekeepers, which can be especially difficult for those with language barriers (Alzheimer’s Society, 2021). A recent study (Jutlla, 2021) has also shown a paucity of post-diagnostic support for South Asian people with dementia and carers, with reliance on opportunistic recommendations from healthcare professionals and a postcode lottery in terms of what is locally available. There is evidence to suggest that, in some areas, there is an over-reliance on voluntary and community sector organisations (VCSOs) and local religious institutions, such as mosques or gurdwaras, to ‘bridge the gap’ in dementia services (Baghirathan et al., 2018; Parveen et al., 2016). However, a recent study (Jutlla, 2021) has highlighted how this is extremely dependent upon local availability and, for the majority, community services are not that useful, with many instead having to draw on personal reserves. Research has also highlighted low rates of advance care planning in ethnic minority groups, with GPs citing ‘cultural factors’ as a potential obstacle (de Vries at al., 2019).

Because of the lack of culturally appropriate, accessible and inclusive services, and the lack of clarity regarding preparing for the future and end-of-life, there is evidence that some South Asian families are relocating their relatives with dementia back to their ‘home countries’, where they may be able to receive care that is more in line with their practical needs, financial capabilities and cultural backgrounds (Nair et al., 2022). Such an option may seem extreme, especially when someone has lived and worked in the UK for most of their adult life, and has close familial and social ties, but it really highlights the extent of the problem and the huge impact that not addressing dementia service failings is having on South Asian communities.

Approaches for a way forward

My aim in writing this blog has been to highlight the importance of adopting a non-reductive approach that considers how different factors (cultural, structural, societal, institutional etc.) interact to create nuanced individualised experiences for South Asian people with dementia and carers. It is essential for researchers, educators and policy-makers alike to recognise the variety of experiences within and across ethnic groups, by class, gender and age (to name a few), and how these contribute to experiences of inequalities and discrimination (i.e. utilise an ‘intersectionality approach’, Hulko, 2002). Assuming that South Asian communities ‘look after their own’ (Katbamna et.al. 2004.) because of their cultural values and beliefs, both undermine the varied experiences of these communities and detract from the structural and societal inequalities they face, essentially providing an excuse for not restructuring or innovating dementia services to better meet their needs. 

Several researchers, who have worked closely with South Asian people with dementia and carers, have suggested a few ways to address some of these issues. The ADAPT study, led by the University of Bradford (Cheston et al., in-progress), has developed an online toolkit aimed at improving dementia care and support for South Asian people, and includes access to culturally-appropriate dementia assessments (Race Equality Foundation, 2022). Dr Karan Jutlla, in her most recent report for the Alzheimer’s Society (Jutlla, 2021), has emphasised the importance of co-production of service improvement (i.e. working with South Asian communities to identify areas of dementia care in need of improvement and together producing a list of recommendations). Recommendations include the need for dementia link workers to help navigate services, better representation of specialist healthcare professionals from the South Asian community, development of dementia resources in South Asian languages, use of technology and media, peer support and a potential advisory role for family carers to support healthcare professionals providing culturally-appropriate care. A recent study (Nair et al., 2022) has also shown the importance of providing culturally tailored support for carers managing dementia-related eating and drinking difficulties at home, highlighting the current lack of provision in this area, as well as also underscoring the importance of culturally-sensitive care planning, care environments and dementia design. Material citizenship approaches (Lee & Bartlett, 2021) are providing further insights into the importance of personal possessions for cultural identity in care environments.

Generational shifts, socio-economic and cultural changes all mean that South Asian families now more than ever require dementia services to adapt to meet their needs, and quickly. There is evidence that fear of culturally-insensitivity in care homes (Nair et al., 2022) is a major barrier to considering this form of care; policy makers thus need to think about how best to adapt care homes to provide more culturally-acceptable services (e.g., taking into account cultural diets). Whilst it may be the historical ‘norm’ for many South Asian families to care for relatives with dementia at home, this should not be juxtaposed against care homes as the only plausible alternative, and services could potentially aim to work around combinations of family and extra-family practices (Purewal & Jasani, 2017).

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.

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