Black Asian and Minority Ethnic Communities

Introduction

According to Eckerström & Berg (2019), dementia is a medical classification that describes a range of neurological, degenerative syndromes that affects cognitive functioning. Alzheimer Dementia is the most prevalent variant. Different types of dementia demonstrate a subtle variation in neuropathology, thus influencing behavioral manifestation. Dementia is progressive as an average terminal prognosis span for a decade; however, physical comorbidities often lead to death. The BPSP (behavioural and psychological symptoms of dementia) are typically complicated, and care needs increase as the condition continues to develop.

Statistics and prevalence of dementia in the UK's BME communities

According to the Office for National Statistics (2013c), the UK population comprises 63,182,000 people, while 5,556,508 of this population constitute the Black Minority Ethnicity (BME) (Mukadam et al., 2019). The majority of BME group live in the Midlands, London and the North West of England.Majority of BME people suffering from dementia hail from Asian Indian backgrounds and the Black Caribbean.

The age of these cultural groups triggers the high number of BME people with dementia as they have the highest population of people aging over 65years. Estimately there are 11,860 BME people with dementia. Mukadam et al. (2019) argue that this is a reflection of an aging population in these cultural demographics caused by migration from Indian, Pakistan, and currently Bangladesh, the Carribean, and China to the UK between the 1950s and 1970s. Waheed et al. (2019) argue that dementia is more prevalent among the Black Caribbean and Asian people than the majority white population. Higher rates of cardio risk factors for cardiovascular diseases exposes these cultural group to dementia. In the UK, young-onset dementia is more prevalent in the BME group as opposed to the whites. Orrell et al. (2019) argue that from the total BME population suffering from dementia, 6.1% demonstrates a young-onset variant relative to the 2.2 % of the total non BME diagnoses. According to Braithwaite, Harrison & Shaffelburg (2019), there is a higher prevalence of dementia in males relative to females in the BME group, though researchers indicate that the imbalance may be as a result of higher immigration rates for males into the UK, who are now attaining old age.

The UK's BAME Community

Ciobanu (2019) argues that super-diversity portrays the increasing variation in the UK in terms of people's socioeconomic status, country origin, cultural and religion traditions, and legal status. According to Craig (2019), an early definition of the BME population exhibits that people with a cultural heritage that is distinct from the white, majority population. Rotenberg (2019) highlights that the Department of Health developed this early definition of BME in the Delivering Race Equality in Mental Health Care report referring to all minority ethnic groups status in England. The initial description of BME relates to both people of skin colour and all the groups experiencing disadvantage and discrimination. According to Orrell et al (2019) the Annex to the report recognized the difficulties of using BME term which implies heterogeneity and inadequately accounts for all the minority groups in UK. BME term failed to address the numerous groups that were not included in the program of activity, for instance, white minorities, mixed-race groups, or white communities with distinctive cultural lifestyles founded on ethnicity, religion, gender, language, and sexual identity (Bhopal, 2019). This necessitates provision of etymological BME definition that is clear and its universal and consistent implementation in clinical practice and research . According to Allik, Brown, Dundas, & Leyland (2019) in the 2011 UK census, white minority groups were recognized, for instance, Irish Traveller and Gypsy. Irish Traveller was a new ethnic category in the 2011 census, reflecting the BME definition complexity.

According to Allik, Brown, Dundas & Leyland (2019), a new definition for BME is necessary to capture the complex picture of various diverse groups accurately distinct from the whites the UKs majority, the differences between and within BME communities, therefore accounting for super-diversity definition. Based on the Ciobanu (2019) concept of super-diversity, there are several factors that contribute to the dynamics in religious and cultural identities. First, super-diversity is identifiable with an influx of immigrants from Eastern Europe to the UK. Secondly, the change in the perspectives of the second and third generations of immigrants from South Asia. Finally, super-diversity is traceable in the evolution of religious, cultural, legal adherence, and socioeconomic in the UK's indigenous population. According to Allik, Brown, Dundas, & Leyland (2019), the term minority suggests marginality and has been postulated as mathematically inaccurate and misleading.

According to Coleman (2019), ostensibly culture is the identification with behavior, practice, and thought of a region, organization, or group famously linked with a geographical locality, and its prevalence is across societal contexts and levels. Culture may be expressed at a family level, regional level, and organizational level. Therefore, culture is a structural process providing frameworks for our behavior. People adopt a modus operandi based on the principles and the rules within a cultural context they find themselves in to allow them to function within the cultural status quo. This aesthetic framework derives from birth into a family structure, descent into a geographical locality, or birth into a social-economic environment. Cultural identity is morphed and shaped through adherence to diverse parts of society. People are, by default, a member of the culture they operate within as per human functioning in the community. Cultural identity is complex and multilayered and increases and shifts through social contexts and throughout life. Sports teams, workplaces friendships groups provide a cultural framework with operational and functional rules. However, the most enduring and literal element of cultural identity is linked with ethnicity. In this sense, ethnicity comprises skin color or race, people's creed, place of birth, and is sustained at our core, as the cultural identity most transient parts morph and shifts through life journey. More appropriately, this is identified as an ethnic, cultural identity. This enduring element is subconscious and inherent, a product of our early upbringing, which forms the foundation for language, attitudes, values, and behaviors. Our decisions in life determine other parts of cultural identity, for instance, one social group above another and one job above another. Each of these decisions expresses a distinct cultural framework, though the enduring subconscious ethnic culture may drive these choices.

Defining Religion

According to de Vries et al. (2019), faith is the belief, behavior, practice, and thought that is directly influenced by dogmas, religious ideologies, and scriptures with arguably a more explicit and conscious adherence than ethnic, cultural identity. Prayer is the paradigm for a religious theme existing in cultural research. Prayer is a ritualistic trait that is explicitly grounded in religious practices and beliefs. Chatterjee & Downs (2018) assert that increased prayer rituals assisted caregivers from American, Irish, and African American communities to cope with dementia patients. Also, people encountered difficulties in performing prayer rituals as a result of behavioral functioning debilitation as a dementia consequence.

UK BAME and dementia

According to Shiekh et al. (2019), previous estimations indicate that 11,932 people from BAME groups have dementia. The Centre for Policy on Ageing and the Runnymede Trust applied a well-examined dementia prevalence rates to census data. It used projections founded on the census data to understand the expected growth. Therefore the current estimate based on the census data in England and Wales for people who have dementia from BAME communities is 25000. This number is projected to grow by 2026 to about 50,000, and by 2051 the growth will be over 172,000. This compares to over a two-fold increase in the whole of the UK's population living with dementia in the same duration. Baghirathan et al. (2019) assert that the rapid growth of the population of people living with dementia in the UK from BAME communities is projected to increase as the total population in the UK increases. Cook et al. ( 2019) argue that there were about 532000 BAME people aged 65 years and above living with dementia in 2001, and by 2051 the population from the BAME community living with dementia is projected to be over 3.8 million. According to Bhopal (2019), BAME groups are under-represented in dementia services as they are less likely to receive a dementia diagnosis. If diagnosed, it happens at a more advanced stage of illness as opposed to the White majority group. Such challenges affect dementia patients ' well- being, strain the dementia patient's families, and increase the risk for avoidable crises as well as necessitating high cost and intensive interventions. The projected growth of the BAME community's dementia patient’s population requires urgent actions to address low rates of dementia services uptakes and diagnosis. As established by the national dementia strategies in the UK, carefully planned procedures that support systems help in averting crises, and enable services to cope with the escalating demand. It is fundamental to understand the needs of dementia patients from BAME communities as an approach to put the ideal support in place in the future.

Increased risk of dementia among the BAME

According to Ford et al. (2019), no data is currently available on dementia incidences among diverse ethnic groups in the UK; there is a likelihood that dementia will be more prevalent to the Black Caribbean and Asian elders. The high rates of dementia among these BAME communities will be triggered by diabetes, high blood pressure, heart disease, a stroke, which is more prevalent in these groups, and it is a risk factor for dementia. Professor Rob Stewart, in an overall evidence session, highlighted that African Caribbean populations are prone to a double risk of stroke relative to similarly aged European origin population as well as high diabetes and hypertension levels. South Asians also have a higher chance of being diabetic, raising the risk of a stroke though lower compared with African Caribbean populations. According to Baghirathan et al. (2019), BAME populations in the UK are attaining ages where dementia is becoming a common phenomenon, and the increased risk factors will create an impact. The resulting increase of dementia patients from ethnic minority communities necessitates an urgent need to address the failure to provide ideal services and underdiagnosis among these minority groups.

Moreover, there is a need for integration of services to assess and treat dementia as well as comorbidities linked with dementia. Wiedemann et al. (2018) argue that Alzheimer’s society work points out that, stroke professionals are good at giving preventable secondary advice for dementia and treating physical symptoms. However, though there is an improvement in monitoring cognitive problems, the professionals offering secondary dementia preventable advice and managing the physical symptoms of dementia is a more robust issue. Several people suffering from stroke receive excellent services that align with physical symptoms, while on the other hand, they receive too little support and information regarding cognitive impairment. Individuals who develop dementia after developing stroke are likely to have failed to receive a diagnosis or the necessary support to prevent them from succumbing to dementia.

Equally, the mental health practitioners examining individuals with dementia linked with minor or significant strokes may lack skills and knowledge to offer the ideal rehabilitative support or treat underlying physical disorders to improve the well-being and independence (Wiedemann et al.,2018).

According to Tariq & Barber (2018), the treatment of vascular risk factors that are likely to contribute to dementia progression is not optimized at the secondary care level. The common risk factors for dementia and stroke among BAME communities are sometimes preventable or treatable, for instance reduction of high blood pressure and diabetes and obesity reduction. Hence services aiming at the reduction of these risk factors are essential and have the capability of reducing the dementia burden significantly among BAME communities.

Impact of culture on dementia care experience

According to Neely-Fairbanks et al. (2018), the Black Caribbean assumed that mental illness or dementia was a result of the possession of evil spirits to an individual. In the Pakistan community, mental illness was linked with Jinns' possession to an individual (Shah, Khalily, Ahmad & Hallahan, 2019). Alzheimer's society living with dementia experienced Dr. Shafi Patoli, who was a Pakistan origin coroner.Dr. Shafi Patoli's wife had developed an early onset of dementia. Some extended family members enquired why his wife was seeing professors and doctors as opposed to getting spiritual treatment, arguing that Dr. Shafi Patoli should get his wife exorcised.

Some Asian and Black Caribbean respondents perceived dementia as a white person disease as they were not familiar with such kind of conditions in their origin countries (Campbell& Mowbray, 2016). These groups associated the illness with their migration into the UK. The service providers interviewed by the ethnos suggested that the perception is mainly prevalent to elderly groups of Black Caribbean communities and in Pakistan. The Chinese service providers strongly believe in evil behaviour retribution (Sagbakken, Spilker & Ingebretsen, 2019). This implies that if someone does a bad thing, something bad happens to them, their children, or the grandchildren. Hence severe health issues are attributable to past bad deeds retribution. Chinese have various myths about health, and for instance, they believe that if someone succumbs to mental illness, cancer or brain tumor, these diseases must be passed on to children or grandchildren

Most people link dementia with old age where the elderly act oddly. Others assume that older adults go mad, therefore, could not identify the dementia condition. Pakistan people took dementia for madness as the disease never existed in the community and sometimes linked the symptoms of dementia with side effects of other illness medication (Shah, Khalily, Ahmad & Hallahan, 2019. Others believed that the elderly behaved madly to capture the attention of caregivers.

In South Asian languages, there is no term for dementia and is often identified as the inability to remember things, losing memory, or being forgetful. The Chinese description for dementia is nutty or crazy, and the term was used in an insulting approach. According to Mukadam et al. (2019), the South Asian communities struggled with the carers' concept.

According to Campbell & Mowbray (2016), various myths are circulating among BAME communities about dementia. The condition is primarily associated with mental illness. Some Black Carribean communities associated with mental illness with evil spirit possession.Pakistans associated mental illness with Jinns' possession (Hossain & Khan, 2019).On the other hand, some Asia and the Black Caribbean perceived dementia as a white person disease as it never existed in their country of origin. Chinese had a strong belief in retribution as a result of bad behavior.

The different BAME communities' myths create a stigma around dementia. According to Tomalin, Sadgrove & Summers (2019) people find it challenging for the public to know that in their family lineage there is someone who has dementia because it is normally not considered as a disease for instance in Asian or Hindus countries it was identified as bonkers therefore the stigma was high.

The stigma and low levels of awareness surrounding dementia make it more complex for people to access the necessary support (Tomalin, Sadgrove & Summers, 2019). Diagnosis and access to dementia services are significant risks as families and individuals are unlikely to establish early symptoms of dementia because several carers report persistent behaviours or increases severity out of confusion. People take action when dementia symptoms deteriorate as they are afraid to expose their ailing family member’s condition to the public due to high rates of stigmatization.

According to (Tomalin, Sadgrove & Summers (2019), stigma and myths linked with dementia result in several people affected by dementia condition isolation from the public or their communities. Indeed, this is the case for Pakistan and Chinese people where community pressure on dementia condition is high and misunderstood. Only very few close family members get to know about the dementia condition, because the family is likely to be isolated when one of them has dementia, thus opting to hide it from extended family members and friends. Brenman (2019) argues that the taboos and stigma surrounding BAME families’ dementia conditions that prompt the families to look for their increases social isolation likelihood. Also, these taboos and stigma among BAME communities' dementia conditions compound the lack of awareness in dementia among this community.

Access to dementia services

According to Brenman (2019), people from BAME communities suffering from dementia are generally under-represented in support services in the UK. Families and individuals fail to seek dementia services while still, the services are not availed to the BAME community in the UK. Lack of dementia support in the BAME community impacts a considerable burden to carers due to high pressure, thus having detrimental effects on dementia patients while carers struggle to cope.

Families and individuals of BAME communities fail to seek support in the UK due to the desire to taking care of the dementia patient within the family circle and community pressure regarding residential care (Allik, Brown, Dundas & Leyland,2019).BAME communities also lack awareness of dementia services availability on how to access the services. In essence, the stigma surrounding dementia among BAME communities scares families from using and seeking dementia condition services.

The racism and hostility coupling the immigrants in the UK deters BAME communities from seeking state support. According to Waheed et al. (2019), the sense of insularity developed among Irish people following the sophisticated immigration experience to the UK contributes to reluctance in seeking dementia services help.

Gender roles play a significant role in how BAME communities interact with statutory services. Craig (2019) argues that household women are the carers within BAME families similar to white families; however, they lack equal authority with men to influence men's decisions. To this end, the women carers struggle to cope with caring while the lacking capability to convince the need for support services; however, the female carers perceive it is discrete to carry out her role as a wife, in-law, or daughter.

Lack of culturally sensitive services

According to Karasz et al. (2019), lack of culturally sensitive dementia services deters the BAME community from seeking help. Often BAME community feels that the support available for dementia patients is not ideal for addressing needs related to culture and faith. Therefore BAME families are reluctant to use the dementia services provided in the UK and opt to carry on alone.

BAME communities are reluctant to attend UKs dementia support groups where people gain support and share experiences. Taking therapies is not part of many communities’ cultures that constitute BAME (Karasz et al., 2019). Additionally, a taboo linked with dementia contributes to BAME communities’ reluctance to admit publically that a family member has dementia.

The language barrier between care staff and dementia patients creates challenges when accessing help services (Karasz et al., 2019). English is a second language to BAME community, therefore making it hard to build a right level of trust and relationship

Impact of religion on dementia care experience

de Vries et al. (2019) argue that religious obligation is a factor as opposed to accessing external care services. The author highlights that the fear of culturally insensitive practices towards religious traits prevents access to dementia care provision. A consultation with religious institutions was mandatory when decisions to seek external care are made to assist with decision making and dissemination of information across some BAME communities. Coping the notion of alienation, religion, and prayer was necessary for making decisions. However, a disparity between religious institutions and its members isolates the dementia patient and the carer. Also, the notion that an internal faith manifested in personal ritual provides reflection, comfort, and acceptance.

de Vries et al. (2019) argues that the Asian (Sikh and Muslim faiths) and the African Caribbean (various Christian traditions such as Methodist, Pentecostal, and Baptist organizations) religious groups have lower awareness on dementia condition. Across Asian religious groups, there was the knowledge that dementia patients need specific care; however, these care requirements are unmet. Among the Asian religious groups, the notion that dementia is a taboo, dementia generates spiritual issues, and dementia is a stigma led to isolation and subsequent desire for privacy.

Cultural clashes in the provision of dementia services and care expectations made some BME communities reluctant to use services because they believed that the provision lacked adherence to cultural regimes or the choices were inappropriate; for instance, food brought a lot of cultural clashes (Cook et al., 2019). Also, culture was a barrier to residential and daycare services where inappropriate diet or lack of particular religious rituals observation linked with meal times.

Religion with Dementia

According to Tomalin, Sadgrove & Summers (2019), religious belief is a source of stigma among Asian ethnicity people who have dementia. The Asian community believed that recantation or punishment from a past life causes dementia. Also, negative religious perceptions of dementia as punishment or karmic retribution present a barrier for some BME communities to seek help. The religious duty notion influencing care solely to the family is also a barrier to help access on dementia conditions. Shame and stigma within religious communities about mental illness prevented BME communities from seeking help. Some BME communities, for instance, Muslim religion, perceived symptoms of dementia as dirty and also claimed that they could influence the performance of religious rituals. To this end, religious practices and beliefs among BME communities influenced dementia care pathways for South Asian people.

Educational institutions publish the UK's policies, reports, and guidelines that address mental health provision, dementia issues, BME, and older adults' concerns, government departments, and charities (Knifton et al., 2019).

Reports, Policies, and Guidelines (1999-2009)

The National Service Framework for Mental Health was an initial government policy that recognized inequalities in the provision of health care for working adults aged between 18 and 65 (Knifton et al.,2019).In 2001 this department developed the National Service framework for the elderly above 65 years. The policy was objected towards the promotion of adequate mental health services to BME community's.In 2001 the clinical assessments available were deemed as culturally biased. Older adults mental health services analysis in England and Wales indicated that they require to adopt the existing services for language, food, and religious practices as opposed to the request of specific services.

A survey of all mental health and intellectual disability identified as Count Me In Census in England and Wales indicated that about 22% of these groups are BME backgrounds patients (Morgan, 2019). The Delivering Race Equality in Mental Health Care strategy recognized the mental health needs for communities in BME backgrounds, making it mandatory for them to be accommodated in the UK care provision. Additionally, cultural and religious practices and beliefs were recognized as essential factors in ensuring that BME communities adequately receive UK medical services.

Conclusion

In the policy review, there has been progressing on the historical approach of handling dementia issues in the BME communities. Recent reports recognize inequalities in non-majority cultures, mental health care, and specific dementia impacts traceable in BME communities. On the contrary, considerations of BME dementia patients within National dementia reports in the UK are still minimal. BAME dementia individuals require adaptation of existing services as opposed to new services. Yet, the full discussion is not published into existing reports and also lacks a complete focus on how to meet these needs within the National Dementia Services.

Historically, much focus has been on cultural issues as the BME group's barriers to health services. On the other hand, the consideration of religion role in accessing mental health and dementia services was recently factored with UKs government policies start to recognize religion influence is likely to exert practical decisions on dementia care as a distinctive factor to culture. In future policy, further research into religion and dementia care is recommendable.

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