Dementia among the UKs Black minority ethnic communities

Introduction

With an increasing number of elderly migrants in the UK increase, dementia among the black and minority ethnic (BAME) groups attract attention as a significant public health issue. Yet, there is a paucity of information on the elderly from the BAME communities, especially relating to their health, as most UK public health research and policy majorly focus on younger BAME demographics (Mette & Kumar, 2017). The main aim of this assignment is to provide a critical analysis and overview of available research on elderly people from the BAME communities with specific reference to dementia as a health issue. The objective is to use a case study in evaluating the cultural, ethnic, discrimination and socio-economic issues among UK’s BAME communities, assess the service provision specific to an individual case study in light of the above-mentioned issues, and debate on how the issues relate to policy, practice, care delivery services and structures.

Case Study

Rajesh is a 67-year-old male widower who retired from service seven years ago. Before retiring, Rajesh was a military officer who stayed dedicated to service and rose to the ranks of a senior army officer. Upon retiring, Rajesh moved from the army base into an apartment in Liverpool, where he lived with his wife till her death three years ago. He has one daughter and one son. Rajesh was born in the 1940s during the Windrush, which is during the first wave of large-scale migration in the UK from ethnic minority populations (Rechel et al, 2011a). Therefore, Rajesh is probably an overseas-born Asian whose ethnicity raises a set of distinctive issues for the current older BAME community population. Unfortunately, Rajesh's parents had also been diagnosed with dementia, revealing that his condition may have been genetically instigated.

Due to his dementia condition, Rajesh is facing a set of health and social challenges. Regarding health challenges, Rajesh is experiencing loss of cognitive thinking and memory, general confusion and disorientation, difficulty in swallowing or walking, loss of ability to hold a conversation or speak and sudden change in mood and behavior. These health challenges have affected Rajesh’s decision-making capacity leading to various social challenges such as trouble with embarrassing his family, poor hygiene and inability to participate in family affairs. For this reason, Rajesh’s daughter and son have refused to take care of him and instead put him on a home-based care. The embarrassment of having a father who frequently loses memory, and the pressure to take care of him have caused them to put him under home-based care. Furthermore, the children are not open to their extended family about his condition.

Regardless of the health and social care plans that are currently underway to improve Rajesh health and well-being, these interventions have not been generally effective in doing so. First, Rajesh’s dementia condition was not diagnosed early enough. Similarly, Rajesh is currently under a lesser prescription and medication, all of which are associated with his community’s beliefs on the end of life care.

Nguyen & Readon (2013) previously estimated that at least 10000 people with dementia in the UK come from the BAME community. Whereas no current data indicates the incidence of dementia among the UK’s BAME communities, it is plausible to claim that dementia is a common health condition among the BAME elders. According to Bowling (2009), this is because diabetes, high blood pressure, heart disease and stroke diseases are high-risk factors for dementia and are common among these communities.

Against this backdrop, many of the challenges faced by dementia patients from the BAME communities are like those experienced by the British population. According to International Organizational for Migration (2010), these include difficulty in accessing statutory services and stigmatization. However, according to Kumar & Viken (2010), some of the challenges faced by the BAME individuals require a specific response approach.

As the dementia symptoms develop and individuals begin to experience short-term loss of memory, their long-term memory may become at the fore. Consequently, this may be more distressing to those who migrated to the UK in the late 20th century and experienced racism and hostility (Lane et al, 2012). But Rajesh may also be experiencing dementia-related problems due to the Asian community perspective on the care of the elderly.

Research on the community perspectives on care for the elderly provides a better approach for understanding the BAME community’s perspectives on dementia. Previous research by Naess & Moen (2015) reveals the assumptions that families will look after their relatives with dementia, and this stereotyping has led to the risk of health services failing to reach out to BAME individuals to offer dementia support. That said, Nguyen & Readon (2013) observed that at an emotional and personal level, most people are willing to take care of their elderly family members. However, in some situations facing the BAME communities, this is always not possible.

There is a general acceptance that work and family commitments, together with financial shortages create a situation where the families are not able to look after the elderly people. While some continue to look after their family members at home, others only provide that care from a distance with regular calls and visits. Among the Asian communities, there is a strong cultural tradition that children must look after their elderly parents and grandparents, and most importantly, look after them in their homes. According to Viruell-Fuentes et al (2012), this puts a lot of pressure on many children, who end up not staying committed nor having the passion to care. This is the situation Rajesh finds himself in.

Part of the reason why Rajesh experiences problems with getting care from his family is due to the different understanding of dementia as a health condition. According to Whitefield & Baker (2014), Dementia among the Asian community is associated with mental illness or ‘getting old’. In some cases, according to Mukadam et al (2011), Asian family members seeing their parents or grandparents act oddly associate this with old age and that when it escalates, the person is seen as ‘going mad’. Sometimes, according to La Fontaine et al (2007), the symptoms of dementia are linked to other illnesses or viewed as side effects of medication – and not caused by dementia. Thus, it is plausible to claim that some BAME communities do not conceptualize dementia as cognitive impairment and this could lead to negative responses towards the condition. Some may view it that the elderly is putting it on them to seek attention.

The language barrier has also presented as a major issue of healthcare and help-seeking among the BAME, especially the Asian community. Studies by Seabrooke & Milne (2009) observed that South Asian languages do not have a term for dementia. Rather, it is just referred to as ‘not having a good memory’ or ‘being forgetful. Sometimes, dementia is described in derogatory terms, some even struggling with the concept of carers.

The myths about dementia cause stigma among the BAME community, which may be higher than those experienced by the British community (Truswell, 2013). According to Gray et al (2009), some parts of the Asian community (e.g. the Hindu), experience high levels of stigmatization that they do not even want people to know about their condition. Specifically, the stigmatization is associated with the Hindu culture and religion; whereby people think that dementia is not a disease but kind of a sign of bewitching. This explains why Rajesh’s children are not open to the extended family about his condition.

Service provision to Rajesh

A critical review of Rajesh’s case indicates that many factors act as barriers and facilitators for his access to care. Further consideration and critical analysis of these factors divide these factors into two overarching concepts, namely inadequacies and cultural experience or habitus. The inadequacies concept incorporates all the factors concerned with lack of education and service provision, whereby there is a general lack of knowledge about dementia, its symptoms, causes and diagnosis; leading to lack of help-seeking (Leakey et al, 2012). On the other hand, the cultural habitus concepts relate to the socialized tendencies and norms that guide thinking and behavior towards dementia. According to Lievesley (2010), it describes the dispositions, skills and habits people exhibit towards dementia as a result of their life experiences. Below is a critical discussion of these two concepts concerning Rajesh’s case.

Inadequacies

Many research studies have reported that both carers and general members of minority communities lack the necessary knowledge about dementia as a health condition, and how they can improve the patient’s quality of life (Lievesley, 2013). According to Moriarty et al (2011), these misunderstandings and misconceptions about dementia also act as a barrier to early diagnosis. On the same note, Mukadam et al (2011) acknowledged that the lack of knowledge of dementia, its symptoms and causes have led to the case of normalization of dementia as a part of ageing. Liked to this point is the preconceived idea about the treatability of dementia, with many studies (e.g. Office of National Statistics 2013; Oomen et al, 2009) reporting that many family members from the BAME communities do not view dementia as a treatable disease, and therefore they do not see any need of seeking medical intervention.

Instead, the families see dementia symptoms as natural for older people, denying them the chance to seek help from medical doctors or other social sources (Orr et al, 2013). According to Quince (2013), they do not see memory loss as a reason to visits the hospital because to them, going to the doctor is not helpful. Rather, it is a waste of time because according to them, the doctor cannot bring back the memory once it is lost.

Apart from lack of knowledge about dementia, many studies (Regan et al 2013, Royal College of Psychiatrists College, 2009) have also reported a lack of awareness, familiarity and knowledge of the available services for dementia patients. This issue is further compounded by the inability to navigate the healthcare system due to the language barrier – presenting as a major barrier to accessing important information about dementia (Rush, 2012). Consequently, both the patients and their family members get bewildered about the available services for dementia and how they can access them. Similarly, Sulway et al (2013) observed that the mainstream dementia services are not often delivered by bilingual medical and social service practitioners.

But other pieces of evidence also show that the lack of knowledge is not only among the carers but also within the healthcare system. For instance, Selman et al (2010) pointed out that the lack of specialist knowledge about dementia, especially among GP acts as a barrier to service delivery for dementia patients from BAME communities. Similarly, Smith & Islam (2011) pointed out that in many cases, the GPs develop an attitude that seems to normalize memory loss as part of old age, leading to a minimization of carer concerns and failure to achieve an effective diagnosis.

Other inadequacies in the healthcare system include a lack of choice faced by carers and patients when seeking medical services because the mainstream services lack cultural diversity and awareness for interacting with people from a different cultural group (Lane et al, 2012). On this note, Kumar & Viken (2010) wrote that the services that catered for the ethnic minorities are widely dispersed with a long waiting list (due to high demand), making it difficult to access the carers.

Cultural habitus

Most of the barriers described herein highlight the strong impact of cultural beliefs and orientation within the minority ethnic groups, which is seen to influence the care decisions and perceptions of minority ethnic groups, particularly towards healthcare service access and generally towards Western medicine (Mette & Kumar, 2017). As such, Naess & Moen (2015) remarked that some BAME communities have a general mistrust of the government and medical system’s ability to help. Similar observations were made by Bowling (2009), who noted that BAME families often reported that the rules and structures of professional caregiving systems have a significant impact on their decisions to seek dementia medical help.

The stigma around dementia and other mental health issues also emerges as a consistent theme across many pieces of literature. For instance, Naess & Moen (2015) noted that as a result of stigmatizing community responses, family members and carers of dementia patients display feelings of embarrassment, fear, shame, denial and guilt. Similar remarks were made by Nguyen & Readon (2013), who added that concealment and denial of dementia as a health condition is highly associated with stigma.

Of particular prominence is the concept of ‘outsiders’ that relates to issues of racism and mistrust. As such, many researchers (e.g. Nguyen & Readon 2013) acknowledge that BAME families express reluctance and anxiety about allowing other people to come to their homes to offer support and care. This is compounded by the fact that there are not many choices within the health and social care system because many professional carers do not match their gender, language, religion or culture. According to Nguyen & Readon (2013), this leads to care options that are considered unbearable to certain BAME communities.

Lastly, many studies have also highlighted community expectations as a factor that influences service delivery to dementia patients from BAME communities. For instance, Bowling (2009), Nguyen & Readon (2013) and Naess & Moen (2015) highlighted how community expectations put increased pressure on family members through clearly defined obligations, roles and responsibilities. These cultural issues are further compounded by perceptions of institutionalized racism and negative carer experiences that cause mistrust in the health and social care system.

Issues of dementia care among BAME and policy, practice and care delivery services and structures

Various challenges prevent individuals from the UK’s BAME community from accessing dementia healthcare services as well as other psychological services. This has various policy and practice implications, all of which are discussed in this section. Here, we critically debate the issues addressed in the previous sections based on how they relate to policy, practice and care delivery service structures using a proper evidence base.

The 2010 equality Act obliges all health and social care service in the UK to provide their service without any form of discrimination. Yet, despite a paucity of research regarding this issue, there is evidence of ethnocentrism, negative evaluation of healthcare services by service users, and lack of culturally tailored health and social care services for BAME members with dementia (Mukadam et al, 2011). For instance, studies by La Fontaine et al (2007) suggested that many people from the BAME communities are likely to get late dementia diagnosis, late admission into healthcare, and fail to get health and social care services that meet their needs.

Therefore, policy developments must be initiated to consider the existing local needs and ensure that they are met. Furthermore, both clinicians and commissioners have the responsibility of securing quality access to dementia health and social care services for the minority ethnic groups, especially from different ethnic groups (Lane et al, 2012).

The reviewed evidence reveals a set of knowledge inadequacies that hinder access to better dementia healthcare among the BAME communities. Moreover, evidence by Kumar & Viken (2010) indicates that the BAME communities have low knowledge and understanding of dementia as a clinical health condition. For instance, studies by Gray et al (2009) indicated that compared to the Caucasian community, the Asian community consider dementia as a part of ageing and are less likely to acknowledge the symptoms. Thus, there needs to be close work between the government health authorities and BAME communities to create dementia awareness.

Such close work would also address the issue of stigma. Bowling (2009) argued that whereas nearly all, if not all communities attach a stigma to dementia, the levels of stigma are likely to be higher among the BAME communities and this acts as a barrier to help-seeking (MacKenzie, 2006). Due to the higher number of modifiable risk factors such as heart disease, diabetes, and blood pressure are high among the BAME community (Seaboke & Milne, 2009), a bit more preventive work must be done to help reduce the risks of dementia. Because the prevalence of dementia is likely to increase at a much higher rate among the BAME communities, it is particularly important to create awareness among the BAME communities about dementia.

Working closely with cultural and religious centres as well as through primary care can help create dementia awareness, improve the accessibility of specialist treatment and challenge dementia-related stigma. Given the much-evidenced stigma surrounding dementia among the BAME community, it is possible that other health and social care services can significantly contribute to facilitating patient referrals or specialist services and advice about dementia. This implies the need for commissioning of rheumatology, diabetes and emergency services to collectively address the dementia needs of people from BAME communities.

The delivery of culturally modified health and social care services cannot be overemphasized. Health authorities and commissioners need to ensure that the BAME communities receive dementia services that support their psychological well-being. This implies that dementia assessments and diagnosis must consider language barriers as well as different cultural expectations through, for example, adequate translation services (Trustwell, 2013). this may even require DVDs and leaflets about dementia and the available health and social care services to be made, just like Scotland’s Alzheimer’s Society have done.

Peer support workers also have an important role to play in creating dementia awareness and helping BAME communities to understand dementia as a clinical health disease. Apart from educating and facilitating the understanding of dementia, they can also help challenge the assumptions and myths about dementia in BAME communities. According to Truswell (2013), this may, for example, take the role of minority ethnic navigators who interact with the communities at local levels to spread dementia awareness. From a more general perspective, there is a need for practitioners (e.g. psychologists) to beware of the reluctance of some members of the BAME community to seek help and engage them through talk therapy while considering other opportunities for empowering them.

Conclusions and Recommendations

Ageing is a complicated issue, as is the case of many individuals from BAME communities. Ageing is also the biggest risk factor for dementia and from the age of 65 years, the incidence increases as years progress. But apart from ageing, research has established that being a member of a minority ethnic group contributes to other issues that complicate the patient’s health and well-being. While ageing is globally considered a natural phenomenon, the experiences with and perceptions of dementia among minority ethnic communities and their families significantly vary.

Studies show that the cognitive impairment that comes with ageing (i.e. dementia) is attributed to a variety of factors from age-related changes to fate and the will of God. Understanding dementia patients, their help-seeking behavior and failure to seek help must consider many factors. Elderly individuals from the BAME communities are groups with heterogeneous health factors including their status of migrant life trajectories. Consequently, they experience constant change, yet their needs are often presumptuous and overlook their rapidly changing societies, family structures and lives; as well as their behaviors and attitudes.

Migrant populations generally show similar signs of dementia as the British or Caucasian population. However, there are differences between migrant populations and their host counterparts that research has largely documented. While it is debatable whether these differences are attributable to economic or social factors and differences in the use of or access to healthcare services; it is evident that the BAME community experience more challenges with access to dementia health and social care due to certain economic, social, political and ethnic inequalities. These inequalities present in the form of limited awareness and knowledge about dementia, language barriers, health system inadequacies, lack of culturally adapted health and social services and unawareness about service availability.

Against this backdrop, we recommend health and social services authorities to secure equal access to treatment for patients from minority ethnic groups through financial and human resource investment that seeks to avail enough specialised health and social care professionals. Similarly, we recommend health and social care authorities work closely with the BME communities in raising awareness about dementia, especially through their political and religious leaders. The awareness campaigns will go a long way in helping to overcome stigma because they will be specifically directed to the BAME communities. Even so, we recommend that health and social care authorities should ensure that the BAME community receive culturally appropriate services.

An overview of the literature reveals a lack of research on how to develop and adopt health and social care services to meet the needs of older people from the BAME community. Furthermore, in the UK, most f the studies targeting dementia patients from the minority ethnic community are small scale and mainly focus on urban areas where the populations are more concentrated. Therefore, there is a need for more research targeting several areas including understanding barriers to access of services among the BAME communities, validating dementia diagnostics and assessment tools, questionnaires and scales. Generally, research tends to ignore dementia patients from minority ethnic communities either because their communities are not discounted or because they fail to participate (Moriarty et al, 2011). Therefore, there is a need for more publicly funded research support knowledge and evidence-based practice.

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