The current review

There is a gap in the literature identifying and documenting disadvantages and health inequalities in dementia care experienced by ethnic minority groups, and we attempt to address this in the narrative review presented here. We scope the UK dementia services literature, exploring and describing the systemic disadvantages facing ethnic minority elders within the country’s dementia assessment and treatment services.

We use the term ethnic minority to refer to all ethnic groups except the White British group. We discuss their access to dementia service assessments, culturally appropriate cognitive tools and care, as well as treatment outcomes. Comparison is made with the indigenous White British group, but we appreciate that ethnic groups are not homogeneous and may differ in their composition across different UK regions. Further, use of the label of ‘ethnic minority group’ may differ across different studies.

We mostly discuss the South Asian and Black ethnic minority groups, which are the two largest ethnic minority groups in the UK. Disadvantages in ethnic minority groups is an under-researched area and is therefore not previously well articulated and described. Consequently, existing dementia service provision has not been responsive in meeting the cultural needs of ethnic elders.

Dementia prevalence in ethnic minorities

The rate of dementia in people with from ethnic minority backgrounds accessing healthcare services is relatively low (Mukadam 2013). However, in 2013 approximately 25 000 people from ethnic minority backgrounds in the UK were estimated to have dementia and the figure is expected to rise to over 172 000 by 2051 – an increase of almost 600% (Arblaster Reference Arblaster2021). This represents a significant increase from the current 3.5% to 13.5% of all UK people with dementia. Many people who migrated to Europe between the 1960s and 1980s are now reaching an age at which the likelihood of developing dementia is significantly higher. This will contribute to the predicted dramatic rise in the number of people with dementia from minority ethnic groups in Europe over the next few decades (Alzheimer Europe 2018). In some UK cities, such as Leicester, the ethnic minority population is in the majority compared with the White British group. The demographics of Leicester show that the increase in those aged over 65 will be much greater in South Asian than in other ethnic groups.

Access to care

Access to healthcare, including memory assessment services and dementia care, by ethnic groups is low. This has been attributed to prejudices (Milne Reference Milne2010), lack of cultural appropriateness of provided interventions (Blakemore Reference Blakemore, Kenning and Mirza2018) and care that is not suited to cultural norms and expectations (Nielsen Reference Nielsen, Segers and Vanderaspoilden2019). Lack of awareness and stigma deter people from accessing formal support for their memory and cognitive symptoms. Similarly, health-related cultural perceptions surrounding caregiving and dementia influence willingness to seek support by individuals and their family (Arblaster Reference Arblaster2021). Beliefs that dementia is caused by evil spirits, fate or lack of faith in or punishment by God are also common (Alzheimer Europe 2018). Taken together, this cumulative burden may systematically affect access to care among ethnic elders with dementia and influence their healthcare utilisation.

Studies on prevalence of dementia in ethnic elders are limited, and there is conflicting evidence on whether they are under-represented (Mukadam 2013) or over-represented (Banerjee Reference Banerjee, Willis and Matthews2007) within memory services. As these groups face barriers in accessing dementia care, it is not entirely clear whether they access services less frequently as a result. A London study looking at parity of access in 2015–2016 suggested a significant improvement in dementia awareness and help-seeking behaviour in ethnic populations (Cook Reference Cook, Mukherjee and McLachlan2019). A recent systematic review (Co Reference Co, Couch and Gao2021) found no clear difference in routine care use by ethnic elders with dementia, although most studies were underpowered. Memory clinics in Leicester (Subramaniam Reference Subramaniam, Mukaetova-Ladinska and Wilson2020) reported levels of access similar to those of the White populations, demonstrating that people from ethnic minority backgrounds had a lower threshold for accessing diagnostic services compared with other groups. However, this study was conducted within memory services in areas with high ethnic minority populations. Furthermore, clinicians involved in diagnosing dementia were likely to be from similar ethnic communities. Hence, they might have been well-versed in identifying, referring and diagnosing dementia in those groups. Similarly, general practitioners working in primary care were also familiar with the clinical presentations manifested by ethnic elders and were found not to be pursuing the approach of ‘watch and wait’ reported elsewhere (Livingston Reference Livingston, Baio and Sommerlad2017). This suggests that, at least in part, such clinical decisions are influenced by the density of the regional ethnic minority populations. It appears that access problems may remain in regions where ethnic minority populations are restricted to small pockets, but not in regions with significant ethnic minority populations.

The literature on service access by ethnic groups has methodological limitations. Access may be affected by several interrelated factors and may vary across different ethnic subgroups. Ethnic groups are often seen as one large entity, with no distinctions within them despite their varying cultures, languages and histories. Help-seeking awareness may differ within different ethnic groups and help-seeking may also be affected by the length of time that ethnic elders have been living in their adopted countries (Antonucci Reference Antonucci, Jackson and Biggs2007). Differences may exist between first-, second- and third-generation members of ethnic minority communities. This, in turn, may affect the extent to which they are comfortable with the local culture and generic health services (Alzheimer Europe 2018). Evolving changes may include increased geographical mobility and greater racial and ethnic diversities, which may contribute to newer patterns of immigration and reappraised identities. Further contributions may come from changing work patterns and recently gained family roles.

The lack of awareness of dementia as an illness may prevent help-seeking. In some languages and cultures, there is no equivalent term for ‘dementia’ and the condition is considered synonymous with ageing (La Fontaine Reference La Fontaine, Ahuja and Bradbury2007). Many Asian service users do not consider terms such as dementia or Alzheimer’s to apply to them (Lawrence Reference Lawrence, Murray and Samsi2008). Stigma and taboo may affect access to services (Seabrooke Reference Seabrooke and Milne2004), with some people from ethnic minorities seeing dementia to result in part from lack of family care (La Fontaine Reference La Fontaine, Ahuja and Bradbury2007). Some from Asian communities fear that dementia in the family would damage their prospects of an arranged marriage (Mackenzie Reference Mackenzie2006). Many people from Asian communities hide problems and come to attention of services when dementia symptoms are overt (Cooper Reference Cooper, Tandy and Balamurali2010), the community comments or carers can no longer cope, making it harder to employ preventive interventions (Milne Reference Milne and Seabrooke2009).

When people do present to services, dementia screening is affected by lack of appropriate cognitive assessment tools for low literacy levels, language barriers and a lack of appropriately translated and culturally adapted screening and diagnostic tools (Kenning Reference Kenning, Daker-White and Blakemore2017). Currently, there is a lack of both culturally appropriate services and accurately translated neuropsychological assessments for UK South Asian and Black groups.

All the above has an impact on the extent to which people from ethnic minority communities access a diagnosis and how general practitioners identify dementia in this population and decide whether patients are clinically appropriate for a referral to secondary care (Arblaster Reference Arblaster2021). Thus, in one cohort study in the UK, only 44% of South Asian patients (14/32) accessed dementia diagnostic services in a timely way, in contrast to 62% of White British patients (2272/3654) (Ogliari Reference Ogliari, Turner and Khalique2020). As mentioned above, general practitioners often seem to use a ‘watch and wait’ strategy for people from ethnic backgrounds with suspected dementia (Livingston Reference Livingston, Baio and Sommerlad2017). Affective illnesses such as depression are common in this group and are often given as the reason for emerging cognitive problems (Shah 2007). This all contributes to dementia diagnosis in ethnic groups being subject to high false-positive and false-negative diagnostic rates and unreliable prevalence estimates.

Lack of cultural adaptation of dementia cognitive tests not only results in poorer diagnostic accuracy and test performance (Czerwinski-Alley Reference Czerwinski-Alley, Chithiramohan and Subramaniam2024) but also prevents people from contacting clinical services. This may be due to feelings that their needs may not be recognised by services and their values relating to dementia may not be understood (Arblaster Reference Arblaster2021). Furthermore, not having a culturally fair cognitive screening tool may result in people’s language and cultural needs not being appropriately assessed (Chithiramohan Reference Chithiramohan, Santhosh and Threlfall2024), and their migration or life histories not acknowledged (Jutlla Reference Jutlla2015). The availability of good-quality interpretation services within memory clinics can be variable, which can also affect the quality of assessment (Arblaster Reference Arblaster2021).

A recent review of healthcare access for ethnic minority people with dementia and their informal caregivers (Duran-Kirac Reference Duran-Kirac, Bozkir and Uittenbroek2022) identified barriers to receiving care because of health literacy and beliefs, trust and expectations, social and personal values, and lack of understanding about available options for healthcare. Absence of person-centred care was an important factor in accessing professional healthcare. Conversely, barriers experienced by professionals included communication problems and gaps in their knowledge about the available resources for ethnic elders and their caregivers. Social and cultural factors influenced staff attitudes towards ethnic minorities and appropriate care provision. The study suggests that services lacked competencies needed to work with people with dementia from ethnic minority groups and their informal carers. It suggests a way to improve access to healthcare that involves addressing health literacy, including knowledge in the ethnic minority elders and their informal caregivers about the causes of dementia. The review also recommends that healthcare professionals need to strengthen their cultural competencies to facilitate access to healthcare for this group.

Assessment

People from ethnic minority groups presenting to memory clinics have higher prevalence of functional mental illness such as anxiety and depression (Shah 2007) and a higher incidence of younger age of onset dementias (Prince Reference Prince and Knapp2014), thus making mental health assessments complex. Levels of dementia in Black Caribbean and Asian communities (the two largest ethnic minority groups in the UK) are high, and this is attributed in part to raised blood pressure, diabetes, stroke and heart disease, as well as socioeconomic factors (Alzheimer Europe 2018). Besides physical illnesses, ethnic minority elders may have additional mental disorders with psychotic symptoms, and they usually present to services in crisis (Mukadam 2011; Tuerk Reference Tuerk and Sauer2018). In addition, they are less likely to be on antidepressant medication, despite depressive symptoms being more prevalent in South Asian patients, although, in contrast, those with dementia are at a higher risk of polypharmacy (Tsamakis Reference Tsamakis, Gadelrab and Wilson2021).

As mentioned above, ethnic elders tend to present to dementia services rather late in the course of the illness. Numerous potential barriers to timely and accurate diagnosis may play a part, including difficulties with communication and language, dementia- and health-related cultural perceptions, taboo and stigma, prejudice, structural discrimination (Alzheimer Europe 2018) and difficulties that general practitioners may experience in being able to refer patients from ethnic minority groups for culturally or linguistically appropriate specialist assessments. In addition, cultural factors affecting capacity and consent, deference to family in reporting symptoms, deference to doctors and doctor-related perceptions and attitudes (Mohammed Reference Mohammed2017), as well as language in communicating letters, influence access to care. Functional levels may also be poorly correlated with the ability to maintain activities of daily living, owing to the role of joint family systems in supporting elders and families’ low expectations of independence in elders, all of which can mask functional decline.

Culture-free/culture-fair tools

Commonly used cognitive assessment tools such as the Addenbrooke’s Cognitive Examination III (ACE-III), Mini Mental State Examination (MMSE) and Montreal Cognitive Assessment (MOCA) have been shown to be helpful in dementia diagnosis. These tools rely heavily on English as the primary language and the test content (e.g. naming tasks, semantic fluency and memory items in the neuropsychological assessment) may be of little relevance in ethnic minority populations. Caution, therefore, must be exercised when interpreting poor cognitive scores in these populations.

Most of these tools have not been adapted or validated for use in ethnic minority populations (Nielsen Reference Nielsen2022; Chithiramohan Reference Chithiramohan, Santhosh and Threlfall2024) and the few that have, such as a Gujarati version of the MMSE adapted and validated in UK immigrant populations (Lindesay Reference Lindesay, Jagger and Mlynik-Szmid1997), contain cultural and linguistic variations relating to issues associated with translation. So, there could be variations in their administration, which may introduce method bias and also mean that individual items may function in a different way than intended, which in turn may affect the interpretation of cognitive scores. Having said that, some of the translated and culturally modified versions have a higher degree of sensitivity (Rait Reference Rait, Burns, Baldwin and Morley2000; Czerwinski-Alley Reference Czerwinski-Alley, Chithiramohan and Subramaniam2024).

Among cognitive tools felt to be free from cultural influences (so-called culture-fair tools) are the Rowland Universal Dementia Assessment Scale (RUDAS) (Storey Reference Storey, Rowland and Conforti2004) and the Kimberley Indigenous Cognitive Assessment (KICA). The latter is now used by Australia’s dementia services because of its superior sensitivity and specificity (compared with the MMSE) in the diagnosis of cognitive impairment in indigenous communities where illiteracy, language and/or cultural barriers may impede assessment (Chithiramohan Reference Chithiramohan, Santhosh and Threlfall2024). In a Western European study, the European Cross-Cultural Neuropsychological Test Battery (CNTB) (which covers global cognitive function, memory, language, executive function and visuospatial functions) had a higher sensitivity in ethnic minority participants than in the ethnic majority (Nielsen Reference Nielsen, Segers and Vanderaspoilden2019) but it takes approximately 60 min to administer, making it impractical for use in busy clinical settings.

Culturally appropriate care

Poor knowledge about dementia among South Asian people, who see it largely as a part of normal ageing, seems to prevent help-seeking (Mohammed Reference Mohammed2017), thus delaying diagnosis. This group maybe more focused on physical illness rather than conditions such as dementia. As South Asians tend to prefer care to be provided by family members and within their community, they may not access formal dementia healthcare. Such families use far fewer services compared with majority ethnic groups (Mukadam 2013; Parveen Reference Parveen, Barker and Kaur2018a).

Caregiving may be coloured by key themes of religion and spiritual beliefs, the prominence of family care, filial responsibility, stigma, mental illness and the need to contain the person with dementia within the family, hidden from the wider community (La Fontaine Reference La Fontaine, Ahuja and Bradbury2007). These behaviours are affected by religious, spiritual and traditional explanations about the reasons for mental illness (Mackenzie Reference Mackenzie2006), such as ongoing battles between good and evil, and being possessed by evil spirits (Alzheimer Europe 2018).

Migration experiences are important in understanding ethnic minority communities’ experiences of caring for a family member with dementia and use of health services. Although the formal responsibility for care may reside with a male relative, the actual care is often delivered by female relatives, usually daughters or daughters-in-law. There is also a general resistance against using health and social care services as they are believed to be culturally inappropriate (Mohammed Reference Mohammed2017).

Language barriers are major challenges for ethnic elders with dementia (Arblaster Reference Arblaster2021), especially if they cannot speak English well enough to engage with health professionals. Therefore it is not surprising that a traditionally accepted norm is for the extended family to care for them, without any external support (Arblaster Reference Arblaster2021). It has been suggested that dementia care services move from an individualistic approach of person-centredness to an approach of relationship-centredness (Alzheimer Europe 2018), this being more appropriate for ethnic minority groups where in the focus is more often on the family unit as opposed to the individual (Nolan Reference Nolan, Davies and Brown2004).

A review by Kenning et al (Reference Kenning, Daker-White and Blakemore2017) exploring barriers and facilitators in accessing dementia care describes both carer-related barriers (such as knowledge and understanding) and community-level barriers (such as cultural expectations) which could be overcome by facilitators such as improved training for professionals.

South Asian carers can be identified as holding a ‘traditional’ or ‘non-traditional’ caregiver ideology (Lawrence Reference Lawrence, Murray and Samsi2008) (Table 1). Those with a traditional ideology think of caregiving as natural, expected and virtuous, whereas those with a non-traditional ideology see it as unnatural and a burden. The underlying ideology informs the feelings of fulfilment and the strain, fears and attitudes towards formal services predominantly seen in South Asians. The majority of South Asian carers possess a ‘traditional’ ideology (Lawrence Reference Lawrence, Murray and Samsi2008). South Asian spousal carers may have a strong sense of traditional ideology and religious values that affect caregiving (Tables 1 and 2), although this may not apply to other ethnic minority groups. However, while traditional views about caring are still common, they may be changing in these communities, with people being more accepting of outside help and seeking more from services (Parveen Reference Parveen and Oyebode2018).

TABLE 1 Types of caring ideology and their influence on family carers’ perceptions of ‘traditional’ and ‘non-traditional’ caring roles

Source: Lawrence et al (Reference Lawrence, Murray and Samsi2008).

TABLE 2 Typical feelings and coping styles of South Asian spousal carers

Source: Lawrence et al (Reference Lawrence, Murray and Samsi2008).

Care and treatment

Ethnic elders with dementia who do receive care and treatment from memory services often have poor outcomes. A small clinical study in Leicester (Chithiramohan Reference Chithiramohan, Threlfall and Abdelhaziz2022) reported a significantly reduced (by two-fold) survival among South Asian people with dementia compared with White peers. This outcome remained even after an adjustment for multiple confounding factors, such as age, gender, dementia severity, use of anti-dementia and antipsychotic drugs, comorbid physical disorders, and the use of support and voluntary services. Furthermore, the South Asian patients, although presenting with higher cognitive impairment at referral, were less likely to access support services compared with White counterparts.

In an earlier review (Cooper Reference Cooper, Tandy and Balamurali2010), poorer survival of South Asian compared with White British people with dementia was explained by the higher incidence of cardiovascular events such as stroke or heart attack. In the Leicester study (Chithiramohan Reference Chithiramohan, Threlfall and Abdelhaziz2022), there were no significant differences between South Asian, Black and White British patients in the incidence of stroke, transient ischaemic attacks, hypertension or chronic kidney disease. Despite there being a higher incidence of type 2 diabetes mellitus in the South Asian and Black patients compared with the White British, this was adjusted for in the survival analysis and is hence unlikely to explain the observed differences in survival rate. Furthermore, the difference in survival did not seem to be attributable to differences in access to medication, as the use of drugs were comparable across the groups.

The above findings were also confirmed in a large UK primary care study based on electronic health records (EHRs) that were linked with hospital episode statistics and mortality data. South Asian and Black people with dementia had a younger age at diagnosis, shorter survival time and younger age at death than their White counterparts (Mukadam Reference Mukadam, Marston and Lewis2023). In contrast, a study using EHR data from a London-based secondary mental healthcare provider and Office for National Statistics death certificate data to determine dementia survival (Co Reference Co, Mueller and Mayston2023) reported different results. Mortality was elevated at least two-fold across all ethnic groups with dementia compared with the general population in England and Wales. Risk of death was lower in Black Caribbean, Black African, White Irish and South Asian groups compared with the White British population even after adjusting for age, gender, neighbourhood-level deprivation, and mental and physical comorbidities. Reasons for this longer survival were unclear. Further studies are therefore needed to clarify these seemingly varying findings.

Support services

For ethnic minorities, the cultural ‘inadequacy’ of dementia services remains an obstacle to access (Parveen Reference Parveen and Oyebode2018). There is both a perceived lack of trust in the healthcare system (Arblaster Reference Arblaster2021) and an absence of culturally sensitive and appropriate dementia services, with faith and cultural needs not being addressed (Mohammed Reference Mohammed2017).

If services have ‘traditional’ views about the caring roles within ethnic minority communities, they can erroneously assume that people with possible dementia are well-supported at home. Consequently, services are not tailored to the needs of different communities (Kenning Reference Kenning, Daker-White and Blakemore2017). It is essential that services do not assume that ethnic minority communities do not need health services because of their cultural values (Arblaster Reference Arblaster2021). On the contrary, ethnic minority communities need increasing access to a process that enables the dementia diagnosis, as it may be difficult for a person with a poor grasp of English to access information about dementia if it is not available in their primary language (Arblaster Reference Arblaster2021).

Provision of care and support in the context of interculturalism necessitates being mindful of certain challenges and an awareness of how provision can be achieved in different ways. Debates exist about whether intercultural care and support for people with dementia from ethnic minority communities should be part of mainstream provision or kept separate. There is often an assumption that those from the same ethnic group prefer to use services in which they can have social contact with people of a similar age, class, background and ethnicity, embracing language, food, music and games. It is important to avoid making assumptions about interactions between people from the same minority ethnic group, since there may be subhierarchies and caste systems within these groups (Alzheimer Europe 2018). Unsurprisingly, there is a slight emphasis on adapting existing mainstream services to make them more appropriate for people from a wide range of ethnic groups rather than providing exclusive services for ethnic minority groups.

As mentioned above, cultural or caregiving beliefs may prevent families seeking outside support and the low take-up of diagnostic services may lead service providers to make inaccurate assumptions, such as believing that communities are well-supported at home. Challenges related to the provision of intercultural care and support include lack of relevant information about dementia and related services and its poor dissemination, stigma and shame (at both societal and community/subgroup level) and the outdated perception among professionals that ‘they look after their own and do not want support’. Such assumptions can obstruct efforts to make services more culturally appropriate. The care provided is then not tailored enough to meet the needs of ethnic elders.

The identities of people from ethnic minorities can be shaped by sociopolitical factors, including country of origin or birth and migratory experiences (Arblaster Reference Arblaster2021). To promote access, services must recognise this by developing cultural awareness, sensitivity and competence. Although the ability to maintain fluency in more than one language often decreases with advancing age in the general population, bilingual ethnic elders with dementia may lose fluency in their second language sooner, reverting to their primary language to communicate, which can affect their behaviour (Cooper Reference Cooper, Rapaport and Robertson2017). They may also find it difficult to switch between languages and may use the wrong language in the wrong setting. Therefore, language and communication in residential care can be seen as one of the foundation stones to help provide culturally sensitive care to elders. Having data on how many ethnic elders with dementia are in residential care might help remove barriers and open doors for more of them using such support within ethnic minority groups.

Ethnic elders in research

Ethnic minority people with dementia are under-represented in research (Shaw Reference Shaw, Perales-Puchalt and Johnson2022). Recruitment may be subject to multiple social jeopardies (e.g. linked to stigma of dementia, to actual or perceived racism, sexism, ageism and prejudice against migrants, and to poor health literacy and lower socioeconomic status), coloured by their prior experience or expectation of discrimination and prejudice, prior experience of poor-quality care and the lack of cultural competence of health and social care professionals (Mackenzie Reference Mackenzie2006). Research is often limited in terms of direct information and first-hand experiences of ethnic elders and ethnic carers.

There are gaps in research on the needs of ethnic minority elders in UK care homes and the most effective modes of care delivery in these facilities. This is compounded by an absence of statistics on the number of specialist dementia care homes in the UK catering for ethnic elders. The absence of research and statistical data may affect the implementation of any guidelines and care standards and the development of long-term care services. Based on current international and UK evidence, it is not possible to fully understand whether ‘segregated’ care (that is, distinct from support services for the indigenous group) is necessary or indeed beneficial, and how best to address the issue of tailored care so that ethnic minority older people feel that their needs are being met. Further research is needed to answer these questions to inform service development, such as education and training programmes (Braun Reference Braun and Browne1998).

Recommendations for culturally appropriate care

Person-centred care and support for people from ethnic minority groups requires a proactive intercultural approach. Proposals include enabling staff to develop cultural awareness, cultural sensitivity and cultural competence and adopting approaches to improve the uptake of services, such as developing different information resources and appointing workers with responsibility for outreach. Local integrated care systems (ICSs) are in a good position to bring together all health, social care and voluntary sector organisations providing direction to improve the dementia diagnosis uptake in different communities and to ensure standardisation of the quality of services provided, thus minimising health inequalities. Local health systems need to be mindful of the recommendations made by the Race Equality Foundation’s series of briefing papers for UK-wide implementation (https://raceequalityfoundation.org.uk/health-and-care-briefing). This report provides tips on inclusive working with multicultural communities by offering opportunities to build on the cultural diversity within care homes. Some of its suggestions are outlined in Box 1.

In summary, reduced access to dementia services by ethnic minority groups in the UK and elsewhere is well recognised. In areas and regions where particular ethnic groups are in a minority, reduced access is a consistent finding. However, in regions where ethnic groups are significant and growing, reduced access may no longer be the case. Ethnic elders are disadvantaged in their dementia cognitive assessments, diagnosis rates and treatment outcomes. Service provision and care pathways need to reflect their needs, and mechanisms are needed for ongoing scrutiny to monitor needs and variations over time and intergenerational effects. When commissioning memory assessment and support services, it is important to be mindful of the needs of ethnic minority communities and how they may be viewed culturally. Treatment and patient outcomes in ethnic groups may be subject to the influence of such disadvantages and factors not yet fully understood.