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Exploring Barriers and Facilitators of Dementia Care in the BAME Community

Introduction: In the UK, dementia is the leading mental health issue faced by the elderly. The BAME communities in the UK are found to be at increased risk of facing dementia. This is because of their genetic pattern, physical health patterns, everyday lifestyle and others. In this context, the key aim of the study is to determine the barriers and facilitators of dementia care in the BAME community to understand the way disease management is executed within the community.

Methodology: The narrative literature review research design is to be followed in the study. The electronic search strategy is to be used and the PEO framework is to be implemented in formulating the research question. The thematic analysis approach is to be used for data analysis.

Results: The results inform that cultural stigma such as consideration of dementia as coming of age disease, lack of consideration of dementia as a mental disorder, fear of discrimination and isolation in the society and others creates barriers in reaching dementia care to the UK's BAME community. The religious and social barriers such as dementia considered as act of god, not defying act of god, poor status and others are responsible barriers in delivering dementia care to the UK's BAME community. The facilitators include health education, presence of health programs and others for dementia care among the UK's BAME community.

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Conclusion: The barriers are mainly stigma that is hindering dementia care delivery to the UK’s BAME community. However, effective management of the facilitators could resolve the barriers and ensure effective dementia care delivery to the UK’s BAME community.

Introduction

Dementia is one the leading neurodegenerative disorder faced by individuals after the age of 65 years and above in which they lose effective cognitive and thinking ability to act on their own in executing everyday activities (Livingston et al., 2017). In the UK, dementia is seen to be one the risk health issue for the BAME community as they are considered to be more affected by the disease. The BAME community includes people from the Black, Asian and Minority Ethnic groups. In this study, the facilitators and barriers of dementia care present among the people in the BAME communities with the UK is to be discussed. This is because it would lead to understand the further actions of care to be taken for the better well-being of the community regarding dementia management.

Rationale of the Study

In the UK, there are nearly 850,000 people suffering from dementia which is projected to rise to 1.6 million by the end of 2040 (dementiastatistics.org, 2019). This indicates that it is vital health issue which is required to be discussed to determine the way it can be tackled or develop information regarding the progression of the disease at an immense rate. As per reports, it is mentioned that 3% of the dementia are present in people who belong from BAME community in the UK. This indicates that around 25,000 people out of the total dementia patients in the UK belong from the BAME community (alzheimers.org.uk, 2016). It is also predicted that this number is going to get doubled by 2026 with steepest rise seen in the South Asian people in the BAME community (alzheimers.org.uk, 2016). The figures indicate that BAME community is minorities in the UK and the progressing dementia among the people in the community is one of the health issues that are required to be focused. This is required so that its steep rising rate can be tackled to provide the community experience better health and well-being.

The presence of progressing dementia in BAME communities has become an issue because it is often seen that adequate health intervention and services are available to them due to their minority status in the society. It leads the individuals to suffer grave consequences of the disease and even face lack of treatment which deteriorates their well-being (Zhao et al., 2016). As argued by Livingston et al. (2020), presence of dementia among the people in the minority communities leads them to be discriminated in the society. This is because the dementia people are seen as abnormal or burden of care in the society due to which their family members and the society avoids providing them adequate care. It eventually leads them to face hindered health condition and well-being.

The presence dementia among the BAME community has currently become an issue in the UK because it is seen that the minority individuals such as Black and Asian are at higher risk of experiencing dementia compared to the white individual. It is evident from the study of Pham et al. (2018) where it is mentioned that on analysis 66,083 individuals in the UK nearly 18% women in the white community were found to be suffering from dementia compared to 25% women in the Black community within the UK. In respective to community, it is seen that dementia rate is 28% higher in Black communities and 12% high in Asian communities compared to the white individuals. Therefore, focus regarding the facilitators and barriers of dementia care for BAME communities in the UK is to be discussed to understand the actions to be taken later in lowering the risk and progress of the disease in the community.

Aim

The aim of the study is to present a literature review highlighting the facilitators and barriers of dementia care among the BAME communities in the UK.

Objectives

To identify the cultural barriers of dementia care among the BAME community in the UK

To analyse the social and religious barriers of dementia care among the BAME community in the UK

To evaluate the facilitators of dementia care are to be eliminated from the BAME community in the UK

Background of research literature

Dementia is not a single disease but refers to wider range of disease of the brain that creates prolonged impact on reducing the thinking capability, cognitive ability, feelings and others among individuals. It leads the people to experience hindrance in managing their everyday tasks and functional ability on their own (Schoeni et al., 2018). The key system of dementia is memory loss accompanied by hindrance in concentrating, findings difficulty in executing familiar tasks, struggling to form speech, inappropriate mood changes and others (Moyle et al., 2017). The symptoms are found to worsen with time without effective treatment. This is because progressive damage of the brain cells increases with time which leads the individuals face increased complications (Singh-Manoux et al., 2017). As mentioned by James and Bennett (2019), dementia mainly occurs among the elderly and is rare at the early age. This is because with ageing the efficiency of the body to replace damaged cells is reduced due to which the progression is disease is prevalent in the old age. However, it does not indicate that all the elderly people are going to develop dementia with age as there are additional factors which are responsible for the disease (James and Bennett, 2019).

The presence of traumatic injury among individuals due to major accidents is another potential reason for progression of dementia. This is because the damaged parts of the brain may not allow proper cellular growth and functioning with age leading the individual to experience symptoms of memory loss related with dementia (van der Linde et al., 2016). As argued by Solfrizzi et al. (2017), lack of enhanced amount of blood flow in the brain leads to cause dementia. This is because hindered blood flow leads the brain unable to function properly in powering their cells to show enhanced memory and thinking ability. The people involved in long-term use of alcohol and drugs are prone to develop dementia. This is because the chemicals in the substances cause disruption of the nervous connection with the brain cells and parts that are responsible in supporting thinking and memory of the individuals (Solfrizzi et al., 2017).

The BAME community in the UK are the individuals of all the minority communities in the country with the exception of white ethnic groups. In the UK, many people in the BAME community are found to be unaware of the meaning and symptoms of Dementia along with the risk of the disease. This has led many families and individuals in the BAME community to suffer from the health issue without their active knowledge to access care intervention for managing the disease (bristolageingbetter, 2020). For instance, in the Chinese community within the BAME group, it is found that they have negative perception regarding dementia out of the poorly-translated terms such as “loss of intelligence disease” being used to indicate the health issue. This poor identification of dementia among the community has led to create immense cultural barriers in making assessment and diagnosis of the disease among them. It has lead them to remain suffer from the disease out of the limited care received by them (Chen et al., 2017). In the BAME communities, it is seen that social and healthcare services are often rejected by them out of fear of discrimination in the society. Moreover, it is seen that the people from BAME communities try to remain isolated from white individuals to avoid harm and abuse towards them due to their minority status (bristolageingbetter, 2020).

The Alzheimer's Society in England and Wales reported in 2014 that more enhanced epidemiological research is needed for clarifying and identifying the dementia risk in the UK's BAME community who are currently been neglected. This is required as the incidence of dementia in the UK's BAME community is seen to differ widely from the incidence of the other population in the country (alzheimers.org.uk, 2014). It is evident as socially as well as culturally different diet pattern and exercise in the BAME community makes them prone to develop dementia in certain instances. Moreover, the prevalence of various genetic variants in the BAME communities such as Apo-ε4 genotype and others are seen to cause varied prevalence of the disease (alzheimers.org.uk, 2014). In addition, various health-related issues such as cardiovascular disease, diabetes and others are prone to cause increased prevalence of dementia among the BAME community (alzheimers.org.uk, 2014). Therefore, discussion of dementia care for BAME communities is important to help them cope with the disease and reduce its prevalence in the community. In relation to this, it is found that various barriers and facilitators are presence which influences dementia care among the people in the UK’s BAME community. Thus, they are to be discussed in this study to develop idea about the actions to be taken to appropriately deliver effective dementia care to the people in the community.

Methodology

Research Design

The narrative literature review is considered as a critical, objective and comprehensive analysis of existing knowledge regarding the study topic. This process assists to develop an effective theoretical framework which focuses on presenting information that is valuable and within the context of the study topic (Hennings and Froggatt, 2019). The benefit of using narrative literature review is that it provides flexibility to the researcher in presenting information. This is evident as the researchers in this nature of review have wider prospect of developing effective individual insight regarding the topic (Phillipson et al., 2016). Therefore, the narrative literature review approach is to be used in formulating the study. The systematic review approach requires increased amount of time and effort from the researchers (Lang et al., 2017). In the current situation, only limited time is available for executing the study and therefore the process is not to be used in the study. Moreover, systematic reviews are found to be heterogeneous due to which unified information valid for the study is not always available (Lang et al., 2017). Thus, it is not to be used in the study.

Research Question

The presentation of an effective research question in the study serves the purpose of highlighting the key issue in the topic along with the population to be considered in the study. It acts to inform the researcher regarding the nature of search to be made to gather information in the study (Dillane and Doody, 2019). The PEO framework is to be used in the study in formulating the research question. The PEO stands for population, exposure and outcome. The population is referred to the sample participants who are to be considered in the study for formulating the research (Dillane and Doody, 2019). In this study, the population is the BAME community in the UK who are suffering from dementia. The exposure is the pre-existing condition that is focussed in the study influencing the population (Dillane and Doody, 2019). In this study, the exposure is dementia care. The outcome is the results expected through formulation of the study (Dillane and Doody, 2019). The outcome in this study is identifying facilitators and barriers of dementia care. Thus, the research question of the study is: What are the facilitators and barriers of dementia care among the BAME community in the UK?

Search Strategy

The search strategy is referred to the approach taken by the researchers in finding out information regarding the study (Amra et al., 2017). In this study, the electronic search strategy is to be used. This is because electronic search strategy provides wider scope to the researcher in gathering information from various sources without facing any geographical barriers. Moreover, it leads to gather wide amount of information within limited amount of time by use of relevant keywords related to the study (Amra et al., 2017). The platforms to be used for executing the electronic search include CINHAL, MEDLINE, Cochrane Library, Google Scholar and others. These platforms are to be used as they have authenticated healthcare articles from worldwide researchers regarding various topics. The keywords to be used for formulating the study includes “BAME community”, “dementia care in UK”, “Black and Asian dementia care in UK”, “facilitator of dementia care in BAME community”, “barriers of dementia care in BAME community” and others. The Boolean operators such as AND and OR are to be used in connecting the keywords to develop a structured and relevant search in the study.

Inclusion and Exclusion criteria

The inclusion criteria are the characteristics features that are essential to be included in the study and without them the research cannot be accomplished and leads to incorporation of invalid data. However, exclusion criteria are the characteristics which are to be avoided from the study as it results to create error and diver the orientation of the study (Cui et al., 2019). The inclusion criteria for this study are articles including information about facilitators and barriers of dementia care among BAME community, published on and after 2015, written in English, academic in nature and fully accessible. The exclusion criteria to be followed in the study are articles regarding dementia care about white individuals and others, not written in English, published before 2015, non-academic articles and partially accessible.

The articles that contain information regarding dementia care among the BAME community are to be included and others excluded as the specific articles would provide potential information relevant for resolving the raised question in the study. The articles written in English are to be used and others excluded as the research is focussed on UK where only English is been widely spoken and the researcher only have knowledge regarding the specific language. Therefore, articles written in other languages could not be understood by the researchers leading them to be incapable in presenting valuable information. The academic articles are to be used instead of non-academic articles as they have evidential proof and logical scientific explanation regarding the facts presented in turn creating opportunity for the researcher in presenting critical information. The articles published on and after 2015 is to be included as they contain most relevant and current information. The backdated articles are avoided to be used as including them in the study would lead to create error in presentation of results. The fully accessible articles are to be used as they provided detailed information which can be analysed for effective presentation and narration of facts in the study.

Data Analysis

The data analysis in the study is to be executed by following thematic analysis. The purpose of thematic analysis is to present information under themes for addressing the issues raised in the study (Baker et al., 2018). The benefit of using thematic analysis is that it provides opportunity to the researcher in presenting similar information in a systematic format under common themes. It also provides flexibility to the researchers in making data analysis without requirement of intensive coding or statistical methods (Brooke and Semlyen, 2019).

Ethical Consideration

The ethical consideration in the study is to be maintained by avoiding sharing any personal information of any study population. Moreover, the facts to be presented are to be referenced in an effective manner by crediting the original authors so as to avoid plagiarism. In presenting the narrative review, the personal beliefs and thoughts of the researchers are to be avoided to be influenced in gathering information.

Findings and Discussion

Theme 1: Cultural barriers faced in delivering dementia care to the UK’s BAME community

The cultural norms within the community are referred to social tendencies or actions which guides the thinking as well as behaviour of the individuals. In the UK's BAME communities, presence of cultural stigma regarding dementia care acts as a barrier towards its management and care services. This is because cultural stigma acts as negative labels in the community which hinders their effective understanding regarding the disease, in turn, making them fail to manage and avoid prevalence of the health disorder (scie.org.uk 2019, 2019). As mentioned by Kenning et al. (2017), in the UK's BAME community one of the barrier regarding dementia care is their lack of consideration of dementia as a health disorder or disease. It is evident as the people in the BAME community consider dementia to be a coming of age disease that occurs among the elderly due to ageing. They do not consider dementia to be a neurological dysfunctioning of the brain which requires effective care and support (Chambers et al., 2020). This is because they consider it is normal for people with age to forget similar to the deterioration of the physical health of the elderly. The hindered attitude regarding the disease leads the people in the BAME community to avoid accessing care regarding the health issue in turn creating barrier towards effective care support regarding dementia to be reached to the elderly.

In UK's BAME community, another cultural barrier faced regarding dementia care is lack of belief and support towards accessing western medication and therapeutic intervention for health issue. This is because they considered western medication creates negative side-effects on the body. It leads them to choose and use homemade remedies to resolve dementia which are not effective and scientifically valid to care for dementia (alzheimers.org.uk, 2013). Thus, the cultural belief of acting to avoid accepting advanced western form of care acts as barrier for dementia support among the people of the UK's BAME community. The other cultural issue which acts as barrier to hinder delivery of dementia care to the BAME community is the consideration of the disease as shameful in the society. It is evident as dementia being a mental disorder, the presence of individuals with the disease in the family leads them to feel ashamed in the society as mental health issues are not widely acceptable form of health complication considered in the society (scie.org.uk 2019, 2019). Thus, lack of openness regarding dementia as per cultural norms in the UK's BAME community has created barrier for in detecting the dementia patents in turn hindering delivery of effective care regarding the disease.

In the study by Koffman (2018), it is mentioned that presence of people with dementia in the families of the BAME communities sometimes makes them to get isolated from the society. This is because people in the society consider dementia to be a disgraceful disease and it makes them refrain to interact with families or patients with the disorder. Thus, out of guilt and shame the people with dementia in BAME communities avoid revealing themselves in turn creating barrier in delivery of appropriate care. In the study by Herat-Gunaratne (2020), it is mentioned that in Asian people among the UK's BAME community considers that dementia occur as a result of exacerbation of shock received during migration or immigration. It leads the people consider presence of dementia as a result of change of place which affected the emotional-self of the individual and it can be alerted with time with requirement of no special treatment. Therefore, this nature of thinking leads to create barrier in delivering dementia care to the UK's BAME community.

In another study, it is mentioned that one of the barrier of dementia care among the UK's BAME community is their cultural prescriptions that elderly individuals try to be forgetful in seeking attention from the younger people in the family. It leads the family members consider effective emotional support is enough for the elderly with dementia to help the individual cope with the health issue (Jeraj and Butt, 2018). Thus, the hindered culture thinking among the community regarding dementia leads in creating barrier towards delivering appropriate care (Jeraj and Butt, 2018). In UK's BAME community, the spoken language acts as a key barrier towards successful dementia care in the community. This is because in this community English that is widely spoken and understood in the UK is not the common language being spoken and understood. They are found to be proficient in different languages other than English and it leads the health workers trying to work in regard to provide dementia care experiences barrier in communicating and providing support to the community (alzheimers.org.uk, 2013).

Theme 2: Religious and social barriers faced in delivery of dementia care to the UK’s BAME community

The religious views regarding health issue in the communities create barriers towards delivery as well as access to effective care. This is because people consider the health issue as an act of god and develop complicated interventions or thoughts that are unable to be overcome by the carers or healthcare professionals in complying them to develop thoughts of accessing care for the health issue (alzheimers.org.uk, 2013). In the UK’s BAME community, the religious view is that dementia is incurable and no health interventions in the physical world are present to manage the disease as it is punishment by the God (scie.org.uk, 2019). Thus, the religious belief leads the individuals to consider any treatment for dementia to be useless as no such intervention can resolve the punishment given by God in the form of dementia. It creates barriers in delivery of dementia care among the community as their unwilling to receive care leads the carers remain ineffective in taking any potential steps.

The religious belief in the UK’s BAME community is that dementia is related to witchcraft and scientifically approved care cannot be able to resolve the health issue (Dlamini, 2018). It creates barriers for the carers to deliver support regarding dementia in the community because the people avoid accessing any care out of their inappropriate religious thinking the health issue. There are certain people in the UK’s BAME community who informs that acting to access support for managing dementia is defying the punishment from God which according to their religious norm is unethical (Jutlla and Kaur, 2019). Therefore, in this condition, people even being aware of the care available for dementia in the community avoid to access them. This religious thought in turn creates barriers towards delivery of dementia care to the population as they reject accepting the care out of fear of defying’s god’s punishment. One of the religious views regarding dementia among the UK’s BAME community is that it is imbalance in the body energy which can be resolved through spiritual actions (Williamson, 2019). This spiritual thinking creates barriers for the carers to allow reach of dementia care to the community. This is because the people show unwillingness to receive the care and prefer spiritual intervention to be effective in assisting them to overcome the health issue.

The UK’s BAME community are seen to live mostly under poverty where they do not have adequate amount of money to avail different existing care for their health condition (Truswell, 2019). This condition creates barrier in delivering successful dementia care to the community as their lack of money makes them fail to continue the prolonged care and support dementia. The lack of presence of enhanced health education regarding dementia leads to create barrier for the people in accessing enhanced support regarding the health issue. This is because without effective education the individuals in the UK’s BAME community lack concept about dementia being a health disorder. It leads them to access delayed care or no care at all in turn barring them to develop enhanced health (Regan, 2016). As mentioned by Osman and Carare (2015), people with dementia in the UK’s BAME community experience discrimination in the society. This is because they are minority individuals who are not accepted in the society. It leads to create social barrier for the community in reaching to access dementia care. This is because out of discrimination the BAME community in the UK are unable to have opportunity to get easy access to dementia care which in turn makes them to suffer from deteriorated health consequences regarding the disease (scie.org.uk, 2019).

In the UK’s BAME community, it is seen that out of fear of being abused and discriminated due to present of mental health issue as dementia many individuals avoid to reveal themselves in accessing care. This n turn creates barrier towards delivery of dementia care as they are neglected to be available out of revelation of personal identity of the patients making them prone get abused or discriminated in the society (scie.org.uk, 2019). In the UK’s BAME community, it is seen that due to their minority status no definitive diagnostics tests are done by many individuals who are suffering from dementia (scie.org.uk, 2019). It creates barrier of delivering adequate dementia care to the people in the community as people suffering from dementia remained undetected as a result of lack of tests.

Theme 3: Facilitators of dementia care among the UK’s BAME community

The facilitators in care are referred to the factors or approaches which have the potential to positively impact the health of the individuals (Kenning et al., 2017). In the UK’s BAME community, one the facilitator for dementia care is providing them adequate health education regarding the health issue. This is because health education leads the people to develop clarified and evidential information about the cause of health issue long with avoid the myths related with the disease that bars them in accepting care (Kenning et al., 2017). As argued by Camic et al. (2019), lack of health education leads the people unable to understand the way their cultural and religious stigma are baseless and avoiding them to access care. This is because without effective health education the individuals are unable to have evidential facts that prove the stigma is inappropriate. Therefore, effective health education would led the people in the UK's BAME community to overcome their religious and stereotypical beliefs regarding dementia in turn making them show openness in receiving care. The other facilitator of dementia care present for the UK’s BAME community is mapping of people suffering from dementia so that they can be identified to be provided appropriate care. The presence of effective communication between the mapping staffs and health professionals creates ease in allowing the reach of dementia care services to each and every individual in the community (Surr et al., 2018).

In the UK, the NHS provides social service support under the local council for supporting elderly suffering from dementia (NHS, 2013). These services would act as facilitator in providing dementia care to the UK’s BAME community by increasing their reach to the community. This is because such services are going to support the lack of care towards the community out of discrimination in the society. As mentioned by Dutta et al. (2018), individuals from similar communities when are involved in communicating healthcare information and adversities data are found to be effectively heard and understood by the individuals of the community. This is because the people in the community feel the individual understands their emotions and are providing proper logical information to be considered. As criticized by Wright (2016), people in minority communities refrain to perceive negative information about their social norms from other individuals who do not belong to their culture. This is because they think the individual from the superior communities are trying to oppress them and follow actions that are not effective for them. However, in the UK, it is seen that minority and black individuals are involved in delivering care to the dementia patients. Thus, using them to reach health education regarding dementia to resolve cultural stigma regarding the disease would act as an effective facilitator in delivering appropriate care regarding dementia to the people of BAME community in the UK.

The use of diverse languages in promoting dementia care is an effective facilitator in resolving barriers regarding dementia support in the UK’s BAME community. This is because the diverse language use would led the information to be shared that are well-understood by the people in the minority community who generally do not speak or understand English (Dodd et al., 2019). The other facilitator for dementia care among the BAME community in the UK is presence of various programs that identify dementia navigators and befriends from minority community to provide support to minority dementia elderly (Johnson et al., 2019). This acts as facilitators as minority people due to similarity of their social and emotional thoughts would receive care for them and listen to the care actions been asked to be performed for their enhanced health. Thus, these natures of program are able to create valuable care for dementia among the BAME communities. The other facilitator of dementia care for the UK's BAME community is involvement of the family members of the dementia individuals in accessing health education regarding the health issue. This is because involvement of family members in dementia health education would make them understand the approaches to be taken to overcome stigma within the family and ensure proper care is reached to the dementia people in the family to help them lead a better life (Johnson et al., 2019).

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Conclusion

The above discussion mentions that dementia is a brain disorder which mainly affects the cognitive ability and memory of the individuals. The BAME community involves all minority groups in the UK such as Black, Asian, Chinese and other expect the white minority groups. The cultural barrier in delivering dementia care to the BAME community in the UK includes their consideration of dementia to be coming of age disease, a shame for the family, avoidance to avail western medication and therapy for diseases and others. The religious barriers faced in delivering dementia care to the BAME community is consideration of dementia as act of god, incurable and others which makes the individuals avoid availing care for the health issue. The social barriers in the BAME community to receive dementia care are lack of money, education and others. The facilitators for dementia care to the UK’s BAME community include presence of supportive minority healthcare programs in the UK for dementia, delivery of health education and others.

Recommendations

The recommendation to deliver effective dementia care to the UK’s BAME community is providing effective cultural and linguistic training to the social workers so that they are capable to determine the actions to be implemented to deliver effective care to the people in the community. Moreover, the training is important for the social workers to determine the way they are to provide culturally competent dementia care to people in the BAME community so that they comply to accept the care out of feeling of value.

The other recommendation is that active dementia awareness programs are to be launched in area where the UK's BAME communities are living. This is because it would help to deliver focused health education regarding dementia to help them overcome the stigma regarding the disease. It would lead the people of show acceptance of the disease in the society, in turn, allowing people suffering from dementia to reveal themselves in accessing care which they have ignored due to fear of discrimination and isolation in the society.

The recommendation for dementia care in the UK’s BAME community is that social workers and health professionals involved in providing care to the community are required to have enhanced knowledge of diverse languages to be spoken. This is because it would lead to create effective interaction between carers and patients without language barriers in turn allowing to delivery person-centred care for dementia to the people.

Another recommendation for dementia care among the UK's BAME community is that increased diagnosis for the disease is to be made so that the people who are suffering from dementia can be effectively identified in enhanced numbers. It would also lead the physicians and carers identify all the individuals in the community who require support for them, in turn, would develop enhanced health condition for the community.

Limitation of the Study

The limitation of the study is that the results cannot be generalised as it is specific to one country. Moreover, the lack of time and money lead to compromise the enriched execution of the study to some extent. The primary data regarding the study topic is lacking in the study due to which real scenario of the dementia care in the UK’s BAME community at the current stat could not be identified.

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