Dementia: Rising Global Health Burden

CHAPTER 1

1.0 Introduction

According to the World Health Organization (WHO, 2015), dementia is currently a global health challenge. It is estimated that at least 47 million people have dementia around the world, the number expected to increase to 140 million by the year 2050. Due to the projected rise in dementia prevalence, the costs associated with dementia care are likely to rise, thereby causing more challenges with regards to access to dementia care. Notably, evidence of the expected rise in dementia prevalence has triggered the development of various programs and initiatives targeted at reducing the menace. For instance, according to Ablitt et al. (2009), national initiatives have been launched to address the future needs of people with dementia, some of them including the creation of dementia-friendly communities, development, and improvement of dementia care facilities, and improving research on dementia.

1.1 What is dementia?

The World Health Organization (WHO, 2019) defines dementia as a chronic syndrome in which sufferers experience a deterioration of their cognitive function. Usually, according to Regan (2012), dementia patients have a more severe inability to process their thought, and this inability is generally beyond the expected level of healthy aging. Dementia affects the victim's ability to think, memorize, comprehend, and orient (Regan et al., 2013). Similarly, Regan (2014a) writes that dementia sufferers often have poor judgment, and are usually not good in language. Nonetheless, the poor cognitive abilities experienced by dementia patients commonly accompany poor emotional, control lack of motivation and poor social behavior (Regan, 2014b). Furthermore, dementia has a close link to declined mental capacity and interference with the patient's activities of daily living (Moriarty et al. 2011). James (2011) cited memory loss as among the earliest symptoms of dementia. The memory loss often occurs when parts of the brain responsible for memorizing is damaged, reducing the brain's efficiency and functionality.

1.2 Types of Dementia

Mainly, dementia presents itself in various forms, namely Alzheimer's disease, vascular dementia, Parkinson's disease, Lewy bodies, Frontotemporal dementia, Cruetzfeldt-Jakob disease, Wernicke-Korsakoff syndrome, and mixed dementia (Brijnath, 2014). With regards to Alzheimer's disease, the Alzheimer's Association (2019) notes that it is the most common form of dementia because 60% to 80% of dementia cases are caused by it. People with Alzheimer's disease show earlier signs of being forgetful of recent events and names; as well as depression and depressive moods. Whereas vascular dementia can occur due to aging, it also happens when one experiences a stroke (Adams, 2008). However, according to Mace et al. (2005), vascular dementia's symptoms may either suddenly or gradually occur depending on its root cause. These symptoms may occur in the form of disorientation and confusion, which later on escalates into shorter durations of concentration as well as an inability to complete tasks (Downs & Bowers, 2014). But according to Waite (2009), other symptoms of vascular dementia may include hallucination and vision problems. However, vascular dementia is speculated to be more prevalent among the Black Caribbean (Richards et al., 2000; Adamson 1999) as well as the Asian communities Seabrooke & Milne (2004) – a phenomenon that Gorelick (2004), Oveisgharan & Hachinski (2010), Spence (2004) and Ott et al (1999) attribute to the fact that they are more prone to diabetes, hypertension, and cardiovascular disease.

With this regard, Stevens et al. (2002) estimated that 22% of people with dementia have cardiovascular dementia, despite the inadequate evidence on the exact number of people from the BAME with vascular dementia. BAME groups have also displayed a higher prevalence of early onset of dementia, which is a rare form of dementia affecting people before they reach the age of 65 (Knapp et al., 2007). Evidence by Knapp et al. (2007) also indicates that whereas only early onset dementia is experienced by only 2% of people with dementia in the UK the BAME groups experience an equivalent form of 6% of early-onset dementia. Existing evidence also reveals that whereas women are more prone to dementia because they tend to have a longer life expectancy than men (Knapp et al., 2007), Seabrooke & Milne (2009) found that among the UK's BAME population, there are more men with dementia than women. Ideally, this unique statistic is attributable to a higher number of BME men who migrated to the UK early in the 1950s and 1970s to search for employment opportunities- but no epidemiological study has proven this assumption.

1.3 Prevalence of Dementia

Reports by WHO (2019) indicate that about 50 million people worldwide have been diagnosed with dementia, while 10 million others are diagnosed with dementia yearly. Furthermore, WHO (2019) provided statistics indicating that Alzheimer's disease, the most common type of dementia, has a prevalence of 60 to 70% of all dementia cases globally. In the UK, dementia had previously been considered one of the most prominent public health challenges, especially considering the rapidly aging UK population (All-Party Parliamentary Group on Dementia, 2013). Furthermore, in the previous population census of 2011, it was found that 16% of the UK population was 65 years or above, 14% of them being 85 years. (All-Party Parliamentary Group on Dementia, 2013). However, considering the BAME populations, their 1950s and 1960s migration patterns imply that the UK is home to an aging BAME population (Ahmed, 2015), confirming Lievesley's (2010) estimation that at least 25,000 people from the UK BAME population have been diagnosed with dementia in England and Wales and this number is expected to rise by a half in 2026.

1.4 Access to dementia services among BME

According to Scharlach et al. (2006), the reasons for low access to and uptake of care are difficult to understand as they are likely to be complex and multi-factorial. At present minority ethnic group living with dementia are under-represented in dementia services (Giebel, 2015; Mukadam et al., 2011) in addition it is thought that care is provided by members of the family at home setting (Carers UK, 2011). It is reported about 10% of care are from minority ethnic background, the largest proportion held by south Asian followed by Caribbean. Moreover, the report also indicated these carers are more likely to give 24hrs support to their relatives (Carers, 2011). One of the reason relatives of people with dementia are under such pressure is due to cultural belief as some see it as they should accept it or they are obligated to provide care for the elderlies. In south Asian communities the member of family feels obligated to provide care in comparison to the white British carers (Parveen, 2014). In some community due to lack of knowledge dementia is seen as ‘loss of intelligence disease’ (Moriarty et al., 2011). This perception or cultural bias has led to limit the value of the assessment test for older people. Furthermore, it places boundary on the engagement with health services and social participation fearing discrimination or isolation. These means delay in seeking support which may mean until the disease is in the advanced stage. Thus, suggesting that the minority ethnic carer is more likely to be isolated from the main support services. According to Rauf (2011), some communities view utilising such services as a source of sham. For example, in Islam and Hinduism care is as regarded as ‘test’ from God or in some community dementia is seen as a punishment for past transgressions. There are several sources of evidence that shows BAME individuals are uncertain about how or from where to obtain information about dementia and the support or services. This can be made worse if language barrier is present or loss of cognitive skills occurs, or when information isn’t available in the particular language.

Despite the increasing prevalence of dementia among the UK BAME population, Daker-White & Means (2002) observe that this population faces a shortage of dementia services as well as other important health and social care services creating a significant policy concern within the Kingdom's public health sector. Worryingly, according to Brownfoot Associates (2000) & Means et al. (2003) organizations responsible for planning and delivering dementia healthcare to the UK population have reported a lack of accurate knowledge on the number of people from the BAME with dementia in their respective jurisdiction. Moreover, according to Manthorpe et al. (2008), little progress has been observed in the programs aimed at enhancing the accessibility of dementia care services to the UK's BAME populations within their respective local areas. However, according to Moriarty et al. (2011), Midlands, London, and Northwest have a majority of the BAME population, and a majority of this population with dementia is of Asian Indian and Black Caribbean backgrounds because it has the highest number of an aging population. In fact, according to earlier reports by the Office of National Statistics (2002), only 9% of the Black Caribbean and 6% of the Asian Indian population are age 65 years or above; in contrast with 16% of the white British people. However, it is important to note that a majority of research evidence informing this knowledge is old, a phenomenon attributable to a paucity of the latest research on dementia care among the BAME in the UK. Consequently, some researchers have observed the increasing diversity of the UK population, and the subsequent increase in diverse aspects such as socioeconomic status, cultural beliefs, and activities, and country of origin. According to Moriarty et al. (2011), a possible implication of these changes is that the likely demand for dementia services in the future will change. Because researchers have not found a substantial number of people in the UK to involve in studies and compare the proportion of BAME people affected by dementia with that of white British people, an overall assumption is that the percentage of BAME population affected by dementia is similar to that of the white British population (Shah et al. 2009).

1.5 The Policy Context

Various health policy documents in the UK have suggested different development points to enhance the health sector's responsiveness to dementia care needs for the BAME population. For example, the National Institute of Health and Clinical Care (NICE) guidelines, the National Dementia Care strategy, and the Social Care Institute for Excellence (SCIE) advocates for the early identification of care needs for all dementia patients by health and social care staff, especially those needs that emanate from various aspects of diversity such as disability, gender, ethnicity, religion (National Collaboration Centre for Mental Health 2006, Department of Health 2009).

1.6 Policy Framework

The dementia policy framework provides guidance on approval and implementation aiming at the provision of consistent, relevant and up to date documentation. The framework poses a scope that applied to all staff in helping in policy development. A national call has been raised to curb the significant negative effects resulting from dementia. Dementia has significant health, social and economic significance to users of acute hospitals, community health care and people who have stayed long in the nursing residential quarters. A policy framework may be developed to curb the spread of dementia since it is not a disease of one person (Jones et al., 2016 p.282). This framework involves key aspects such as raising awareness to the people with dementia thus reducing the vast spread of the disease. Another key aspect in this framework is the early diagnosis of the condition which may help in treatment before getting to the worst condition. Another key point in the framework is the introduction of care homes and the provision of support to the carer supporters (Daley et al., 2019 p.82). The final key aspects are the development of both hospital and community care areas where people with this condition may be placed. This policy framework will fit well for the aging population and people with mental disabilities. The framework of the policy is shown below;

1.7 Chronology of Policy Development

The United Kingdom had different policies that were implemented to eliminate dementia among its people. The first policy was “The National Strategy of 2009” which was called living well with Dementia. This policy was developed with different aims which were to benefit the people of the United Kingdom at large. The reasons for the formation of this policy included raising awareness of dementia to many people within the country and also eliminating the stigma that has surrounded the condition. The policy also aims at improving the diagnosis rates for people with dementia within the country. Lastly, the policy was developed to increase the range of services to the people affected with dementia and also those people who care for them (Tolson et al., 2016 p.562). This policy was driven by many public interests but much resisted by the absence of consistency data. The key actors of this policy were the government and the stakeholders being the people who were affected by dementia and those who take care of them. The second policy which was projected was “The 2012 Dementia Challenge” which was published in 2012. This policy was developed to improve dementia care and research. The policy delivered changes by creating dementia-friendly communities to improve public awareness, driving improvement in the health sector which was to improve the standards and give more information to the patients (Goodman et al., 2015 p.42). The policy also aimed at increasing funds for research about the dementia condition. The policy was driven by UK Prime Minister David Cameron with resistance more caused by the much challenges which were experienced when contacting various group of people. The key actors in this policy were the challenge groups and the Alzheimer’s Society. The key policy change was the reduction of the use of antipsychotic medication on people with dementia (Collins, Silarova and Clare, 2018 p.12). This policy made some significant progress which included the creation of more than one million dementia friends within the 82 community areas created. Also, the diagnosis rate increased by 17% from the previous policy and the more funding was allocated for the research (Pickett et al, 2018 p.904). This policy was set down by the current policy called “The Challenge on Dementia 2020.”

1.8 The Challenge on Dementia 2020 Policy

This is the recent policy on Dementia in the UK and focuses on fostering research, enhancing care and raising the awareness of the public concerning the condition of dementia in the UK (Parkin and Baker, 2016 p.11). The main objectives of the policy include the following. Firstly, UK aims at being the best globally in the provision of dementia care to its people, their caregivers as well as their families. Secondly, it aims at researching dementia and neurodegenerative illnesses (Mountford and Dening, 2019 p.58). The tasks involved in the challenge aimed at supporting those who presently impacted by the disease and search for how the government can enhance the health of the blacks, the Asian and the Minority Ethnic and minimize the number of people who develop the disease. By accomplishing the policy, the factors which increase the risk of suffering dementia are understood upon implementation of this policy (Parkin and Baker, 2016 p.12).

1.9 The Implementation Stage of the Policy

The implementation plan of the 2020 challenge policy structures well how to achieve the risk reduction, health care, social action, awareness and research. The implementation plan was formed in partnership with different stakeholders incorporating the people suffering from dementia and carers (Connell and Page, 2019 p.1471). In February 2019, the UK government has published out phase 1 of the implementation plan of the policy. In overall, the government of the UK is on the right track as the progress of the policy is concerned. An example of the progress which has been done in the delivery of partners consisting two-thirds of individuals living with dementia receiving treatment, 2.8 million individuals becoming friends of dementia and over 365 areas in the UK committing to be friends to the dementia communities (Parkin and Baker, 2016 p.12). About the progress which has been made, the policy is successful and its full implementation will aid a lot in solving the barriers involved in access of dementia care and the support services by the United Kingdom’s Black, Asian and the Minority Ethnic.

1.10 Role of leadership in the implementation of person-centered care for BAME service users

In fact, in the most recent strategic guidance for carers, it is proposed that carers from the BME communities should have full access to services and that these cares are in access to all information and care advice services (HM Government, 2010a). More importantly, a report by the Healthy lives healthy people (HM Government 2010b) requires the government to play a central role in ensuring that dementia patients from the BME community are considered during the development of strategies targeted at reducing health inequalities. In the implementation of the dementia policies in the UK, nutritional abnormalities arise as a management issue in both health and social fields. Most of the people who live with dementia were diagnosed with nutritional disabilities especially those living in nursing homes. This was noticed while implementing the policies in the field. Although there are several interventions identified to aid drink and food intake, there are no factors identified to improve the nutritional care of the patients by those taking care of the patients in nursing homes (Prince et al., 2016 p.9). Apart from the problems associated with dementia, the patients may be faced with comorbidities related to age and therefore if they are combined with the problems, they exacerbate reductions undernutrition and reduced food intake (Crosbie et al., 2019 p.54). The majority of the people who live with dementia in the UK stay in their communities and therefore their care is provided formally or informally by caregivers and this contributes to caregiver burden and stress. The inaccessibility of dementia care to BAME individuals and their carers has partly been blamed on poor leadership and management of mental healthcare services in a manner that addresses inequalities and the needs of dementia sufferers from the BAME communities. The important role of leadership in nursing practice cannot be underestimated. Moreover, recent research has gained traction on the role of leadership in enhancing the delivery of patient-centered care in nursing practice. Fundamentally, person-centered care in dementia care traces its history back to earlier studies such as Kitwood (1997), which recommended a new culture of nursing practice that would preserve the patient’s self during the process of dementia disease progression. Later on, Brooker (2007) suggested a four-component model for enhancing person-centered care namely treating dementia patients with value, recognizing the patient’s uniqueness, understanding the world through the patient’s perspective, and enhancing the patient’s social environment. Based on such frameworks, according to McCormack et al. (2010), practitioners have suggested various strategies for enhancing person-centered in dementia care including considering the patient’s history, conducting reminiscence sessions, personalizing the patient’s environment, validating the patient, and engaging in activities that enhance the patient’s good health. But existing research (Jeon et al., 2010, Laschinger et al., 2007) indicate that good leadership is an essential element in the development of effective person-centered care for dementia patients. By enhancing the leadership skills of dementia carers, it may be easier to improve the delivery of essential services that improve the patient’s quality of life.

The role of leadership in improving person-centered dementia care can be demonstrated in various ways. For instance, Rabin et al. (2008) assert that leadership can be essential in the implementation of PCC. First, implementation entails the execution of various action plans and processes required for the intervention (Rabin et al., 2008). The intervention implementation process requires a constant modification to fit the context within which the intervention is required and this requires a dedicated and well-coordinated team to execute. However, Pronovost et al. (2008) argue that the task of coordinating the team is often overlooked, and that leadership skills are required to effectively coordinate the teams. Leadership is defined as the activity of influencing other people to achieve a common goal (Rokstad et al., 2013). Therefore, according to Cummings (2011) leadership in the nursing context entails influencing people to take action towards improving the patient's quality of life, guiding to solve problems in complex situations, and developing structures a system that enable effective implementation of interventional processes and actions plans (Smith et al., 2006). In the study by Tomey (2009), the role of transformational leadership was highlighted, with a specific focus on the need for a clear vision in developing professionalism and a person-centered approach in dementia care. Because person-centered care is value-based (Brooker et al., 2007), there is a need for the nurse practitioners need to develop goals that reflect those values for practical application. For instance, Rokstad et al. (2013), observed that a highly professional nursing practice tends to incorporate person-centered care values in their written vision and the implementation of those visions. Moreover Rokstad et al. (2013), found that market-oriented nursing vision was more inclined to practice standardization and service delivery rather than person-centered care. This explains why some studies have found that in-hospital organizations where the goals of the practice are incompatible with person cantered care values, leaders and practitioners feel more frustrated. For instance, in the study by Rokstad et al. (2013), it was found that while the nursing leader could mention the verbal vision, the nursing staff did not have a clear understanding of her goals. These findings indicate the need for coherent and clearly stated goals to enhance quality person-centered care for dementia patients. A large body of research has also recommended situational leadership as an enabler of effective person-centered care. According to Lynch et al. (2011), situational leadership requires the presence of leaders in the wards, proper understanding of skills held by nurses, and the development of appropriate leadership behavior for addressing specific problems within the care setting. Furthermore, according to Rokstad et al. (2013), situational leadership has to choose the appropriate leadership strategies (i.e. coaching, directing, controlling and delegating) that resonate with the nurses' level of competence. In the study by Rokstad et al. (2013), the professional nursing care setting was characterized by nursing leaders who were always present in the wards, and nurses reported a feeling of engagement and support from the leaders. Thus, leadership plays a vital role in influencing person-centered care by developing a clear focus on the professional nursing vision and incorporating person-centered care as part of that vision.

1.11Study Aim

To explore the evidence on factors hindering or promoting the accessibility of dementia support and services by the BAME individuals and their carers in the UK

1.12 Research Objectives

To identify the factors that promote or hinder access to dementia services among BME communities in the UK.

To identify the services needed to meet the needs of BAME individuals with dementia and their carers in the future.

To explore the role of leadership and management in addressing the issue of dementia care accessibility among the UK's BAME dementia patients.

To identify how government policies and legislation address the issue of dementia in ethnic minority communities in the UK.

1.13 Research Question

What are the factors hindering or promoting the accessibility of dementia support and services to the UK's BAME patients with dementia and their carers?

1.14 Justification of the Study

Everyone in the UK society experiences the effects of dementia in different ways regardless of their ethnicity, socioeconomic background, or gender (Department of Health, 2009). However, according to existing research evidence (Mukadam et al., 2010) dementia patients from the UK's BAME individuals present later for dementia care services and treatment than dementia patients from the UK patient community. This study will highlight the consequences of this later access to dementia care Therefore, the findings of this review will make a significant contribution towards this course by collecting and evaluating existing evidence on BAME dementia patients in the UK and their caregivers. Moreover, this study will assist in developing a body of knowledge on care interventions delivered in a social context and aimed at addressing the health and social care needs of people BAME patients with dementia.

CHAPTER 2

2.0 Research Methodology

2.1 Narrative Literature Review

The current study primarily focuses on identifying, reviewing, evaluating and synthesizing the most appropriate research evidence on the factors hindering or promoting the accessibility of dementia care service among the BAME community. Hence, it is important to examine any evidence-based argument on the factors hindering or promoting the accessibility of dementia care for the BAME community. The literature search was conducted on various online databases that will be discussed in this section. Moreover, the researcher relied on predetermined inclusion/exclusion criteria to complete the search. The researcher used the narrative literature review (NLR) style to achieve the research objectives. In brief, the narrative literature review style is a study methodology that involves the exploration of data from existing data sources to achieve the current research objective. Several theoretical underpinnings informed the selection of narrative literature review as the study methodology. First, this methodology could assist in identifying the existing research gap in the phenomenon under investigation (Bell, 2014). Secondly, according to Fink (2014), the narrative literature review (NLR) methodology could assist in conducting a summary of existing research evidence and befitting them to the current problem under investigation; and last but not least, this methodology could assist in developing the appropriate theoretical framework for answering the current research question (Funk et al., 2010). The selection of NLR as the methodology for this study was based on several advantages associated with it. For instance, according to Neale (2009), provides an opportunity for the researcher to completely and exhaustively summarize the currently existing evidence-base to make valid conclusions. Secondly, NLR provides a better opportunity for exploration of evidence when the researcher is seeking to develop effective economic, health and social solutions (Guest & Namey 2015). Additionally, according to Guest & Namey (2015), researchers are at the comfort of using already available data, thus being cost-effective and time-efficient in their research endeavor. Lastly, Bryman (2016) observes that the use of both qualitative and quantitative data sources in NLR enables a more reliable, transparent and comprehensive interpretation of research findings to solve the underlying research problems.

2.2 Inclusion/Exclusion Criteria

The study relied on predetermined inclusion/exclusion criteria for purposes of establishing the scope and relevance of the data sources. In doing so, the researcher was determined to derive data only from UK-based sources, and only the sources that were based on dementia were of specific interest to the researcher, as well as studies published between the year 2003 to 2019. This time frame was particularly selected due to the observed paucity of research papers on dementia care access among the BAME population. Conversely, the researcher excluded all sources that did not meet the inclusion criteria. The following table illustrates the inclusion/exclusion criteria applied by the researcher in determining the specific studies to be included for review:

2.3 Keywords

The researcher used several search terms to allow for easier retrieval of sources. Specifically, the following sources were useful:

Alzheimer's Disease, Dementia, Barriers; Facilitators; family caregivers' access to care; health and social care services; quality care, experience, African Black, Pakistani, Indian, British Caribbean, minority, and ethnic groups.

During the search process, the researcher customised the keywords using the Medical Subject Headings (MeSH) to derive specific subheadings so that more predetermined research topics could be retrieved from the databases.

2.4 Boolean Operators

The researcher found it easier to organize the keywords using Boolean operators such as AND OR. Furthermore, these Boolean operators were useful in ensuring that the search process was specific and precise so that only the quality sources were included for further review. In doing so, ‘OR' was used to expand the search process by linking up related words, while ‘AND' was used in narrowing the search process by combining related words.

2.5 The PEO framework

For a practical application of the research methodology, the researcher relied on a PEO (population, exposure, and outcome) framework to conceptualize various elements of the study. The population here referred to the black and minority population in the UK with dementia, exposure denoting the factors that hinder or enhance this population to accessing dementia care services, while outcome meant access to dementia support and services outcomes. The following table illustrates how the PEO framework was utilized in the study:

2.6 Search Strategy

Having adopted the narrative literature research methodology, the researcher conducted a systematic search of relevant sources of data from online databases, including PubMed, EMBASE, CINAHL, and PsycINFO using a predetermined inclusion/exclusion criterion. The researcher used terms such as dementia, accessibility of services, minority groups, health policies, and management issues to search and retrieve relevant sources of data. Appendix 1 illustrates the search results.

2.7 Study Selection

To ensure that only the relevant data sources were selected for review, the researcher's first read the abstracts of all the retrieved material while examining them to establish whether they were conceivable and of interest to the study. This was done bearing in mind that only the studies written in the English language, peer-reviewed sources, full-text sources, and those that were specific to the study topic were to be included for review. However, the researcher found some sources that were not fitting those criteria but were highly suitable for achieving the research objective. Thus, because the focus of the study was to find more evidence that could be implemented in practice, such sources were also included in the study.

2.8 Data Analysis

The researcher drew data from sources with different study methodologies. Therefore, thematic analysis was deemed as the best technique to use in data analysis because it could allow for identification and evaluation of similar themes emanating across the selected studies (Fink, 2014). Ideally, data analysis began with the identification of specific themes related to each research question, then comparing how these themes were discussed across all the selected studies; before being adopted as part of the answer for each research question.

2.9 Search Outcome

The first search iteration was conducted on PubMed, which yielded 1124 sources. However, when the researcher subjected these sources to the inclusion and exclusion criteria, only 564 references could be included for review. Ultimately, the researcher selected six sources from this database. The second search iteration was conducted on EMBASE, which yielded 2234 sources but later revealed 234 sources after being subjected to the inclusion/exclusion criteria. Three sources were then selected for review. The same iteration of the search was conducted on CINAHL and PsycINFO, which yielded three sources and three sources, respectively. Ultimately, in total, the researcher selected 15 sources for review. Appendix 1 illustrates the details of the selected articles.

2.10 Ethical Considerations

Being secondary research, the study did not seek any ethical approval beforehand. However, throughout the study, the researcher endeavors to make certain ethical considerations. Ethics concerning professional competence and integrity was observed by being trustworthy, not fabricating data, being considerate of others' works, and also representing their studies/findings accurately. The issue of plagiarism was also avoided. The researcher conducted in-text citation and compiles a list of references to acknowledge the authors whose work has been referred to (Onwuegbuzie and Frels, 2016). The researcher assessed whether the studies were collected/conducted ethically by using the critical appraisal tool. This tool assists in assessing whether ethical issues have been taken into consideration i.e. issues around informed consent or if approval has been sought from the ethics committee (Fink, 2014).

2.11 Critical Appraisal

Neale (2009) defines critical appraisal as the process of determining the quality of literary material, and by extension, the quality of research evidence collected. Quality and reliability of data source are key aspects determining the quality outcome of a research study. Therefore, the researcher was determined to ensure that all the sources were of a quality standard by critiquing each of them. Particularly, the critical appraisal was conducted by the Critical Appraisal Skills Framework (CASP), a research critique framework that gauges the quality of research papers based on specific items. Only the studies that seemed to be of quality grade, at least according to the inclusion/exclusion criteria were included for review. The assessment was done by evaluating three major aspects of each material namely: The results found by each study, whether these results were valid, and whether the results have specific practice implications within the researcher's locality.

CHAPTER 3

3.0 Results

This chapter discusses the study findings. The characteristics reviewed studies are tabled in the appendix (1) and the themes are identified based on the aims and objectives of the study. Furthermore, the themes are narratively discussed because the reviewed studies have different study methodologies. More importantly, the themes are discussed based on the substantive evidence of reviewed studies, and some of them may be addressed as either cultural or religious categories. Furthermore, it is vital to take note that while some themes may be classified under religion, others will be classified as cultural factors, and both categories have policy implications and are worth consideration. However, the researcher found difficulty in distinguishing cultural factors from religious factors enabling or hindering access to dementia care. But, for easier conceptualization, ‘religious' factors were categorised based on the use of religious-specific languages such as pray, faith, God, religion, religious beliefs, or religious practices. On the other hand, cultural factors were denoted using culture-related words such as society, ethnicity, cultural beliefs, of society. In situations where the words used did not explicitly identify either religious or cultural factors, the researcher found it challenging to separate the factors; hence, some factors may be classified as both cultural and religious. For example, stigma is one of the factors that may have been discussed as either religious or cultural factors. Moreover, the researcher may have theoretically appeared reductionist by separating the factors by language, yet the factor may not occur beyond such aspects of culture or religion. Nonetheless, the researcher has tried to discuss the factors as distinctively as possible.

3.1 Quality Assessments

The researcher ensured that every journal article met the inclusion criteria. Whereas it was essential to consider the quality of the selected studies (especially experimental studies) the application of quality assessment criteria on selected qualitative studies was quite a challenge because whereas the researcher was determined in evaluating their methodological strengths, the quality assessment criteria tended to explore the quality of reporting. However, each selected paper was assessed for quality and was found to have generally good quality. It is also important to note that the researcher did not contact the authors of studies that did not avail the necessary data for quality assessment. This was because the inclusion/exclusion criteria did not require details for quality assessment.

3.2 Barriers to access to dementia care

3.2.1 Inadequacies

The first pool of barriers to dementia care access by UK's BAME were various inadequacies that include all the themes covering lack of education and awareness about dementia as a disease, and lack of knowledge of service availability. Most of the studies (Seabrooke & Milne 2003, Mukadam et al. 2010, Bowes & Wilkinson 2004) revealed that most of the members of the UK's BAME did not have adequate information about dementia - let alone the necessary details on the cause of dementia, prognosis, and symptoms. In fact, in one study Azam (2007), it was found that the word ‘dementia' does not appear in the vocabulary of South Asian languages. It also emerges from the review that there is a lower level of dementia awareness among Irish and Black Caribbean communities in the UK (Azam 2007). Consequently, many dementia patients from UK's BAME groups together with their families may see dementia as a normal stage of getting older Mukadam et al. (2010), leading to an assumption that no intervention can be taken to assist them. The normalization may also contribute to people seeking medical services only when the symptoms begin to be severe. By the time medical attention is sought, the patient may have lost the ability to choose their preferred medical care. Furthermore, according to Mukadam et al. (2010), late attention to medical care may be characterized by a disagreement between families and practitioners about how to understand and talk about their dementia experiences.

Other reviewed studies (Lawrence et al., 2008; Azam 2007,) also reported a lack of awareness and knowledge about the available dementia care services. Whereas dementia quality standards in the (UK National Institute for Health and Clinical Excellence, 2010) states that dementia patients and their families should have access to both verbal and written information about the available care options within their locality, reviewed studies (Azam 2007, Mackenzie et al 2003, La Fontaine et al 2007) showed that there is a high level of uncertainty among UK's BAME community about the availability of dementia care services and how these services may be accessed. For example, Lawrence et al. (2008), revealed how carers complained that accessing dementia care services is akin to a ‘battle' that involves a consistent seeking of advice and information about dementia care. The lack of awareness about dementia care is compounded by a language barrier which makes it difficult for the patients and their families to navigate through the systems of care and access dementia care information (Azam 2007, Mackenzie et al. 2006). The lack of knowledge is not only limited to the community or carers but also within the healthcare system. Various reviewed studies (Beattie et al. 2005, Azam 2007) found a lack of dementia care knowledge among dementia specialists (e.g., GPs). Notably, there has been a debate on the role of culturally-specific specialist services for UK's BAME population. BAME patients who find themselves as the only patients in dementia care facilities in which the other service users and the staff are White British may discontinue seeking treatment because in most cases, the staffs make little efforts to deliver culturally sensitive services (Beattie et al., 2005). Consequently, according to Seabrooke & Milne (2003), dementia patients from UK's BAME community may decide to use generic services tailored for their ethnic groups even if the responsible staff lack the resources and skills to deliver dementia care. Dementia care services that lack attention to ethnic diversity cause a feeling of isolation among BAME dementia patients, and have been the reason for the call of specialist culturally-sensitive care homes (Cox, 1998). Research evidence suggests that different ethnic groups have different preferences for culturally-specific or mixed dementia care. For instance, a study conducted in Haringey showed that Irish and Black Caribbean dementia patients prefer mixed services, despite the participants showing a preference for culturally-specific care with regards to social activities, food, and the general atmosphere for well-being (Azam, 2007). However, according to (Azam, 2007), the Gujarati Asians participating in the same study reported their preference for services offered by Asian staff. Participants indicated their preference for receiving care in their first language, choosing their food, and attention to their religious needs as important to them. Failure to offer socialist services tailored to these cultural preferences may, therefore, lead to reluctance in seeking care. Furthermore, according to Azam (2007), the lack of knowledge about dementia care, compounded by attitudes held by GPs contributed to the normalization of dementia and its memory loss symptom as a normal stage of aging, leading to a poor determination to patient diagnosis.

Several inadequacies in the healthcare system were also identified by some reviewed policy reports (Ethnic Minority Dementia Advocacy Project 2010, Westminister Advocacy Service for Senior Residents/Dementia Advocacy Network, 2009). For instance, the studies reported that patients lacked the opportunity to choose their carers while some services were not culturally sensitive (Westminister Advocacy Service for Senior Residents/Dementia Advocacy Network 2009, Ethnic Minority Dementia Advocacy Project, 2010). Moreover, the services that addressed the patients' cultural needs were geographically dispersed and characterized by long waiting lists which affected their accessibility. Ultimately, non-ethnic specific services and lack of ethnical diversity in staff recruitment cause a barrier to service uptake among dementia patients from the ethnic minority communities. Moreover, the lack of specialist advocacy services makes it challenging to link dementia patients from UK's BAME community to the services they need.

3.2.2 Cultural Barriers

The role of culture as a barrier to access to dementia care among the UK's minority ethnic population has previously been evaluated through the concept of cultural habitus, which refers to various social norms or practices that influence thinking and behavior. The concept describes the various habits, skills, and beliefs practiced by people in their normal daily lives. These cultural issues have had a significant influence on the ability of families and carers to seek help for their dementia patients. Against this backdrop, most barriers for accessing dementia care highlighted in reviewed papers are associated with the impact of cultural beliefs, norms, and practices held by the minority ethnic groups. Notably, cultural norms were seen to have a significant impact on the perceptions and decisions of minority ethnic groups on service access and western medicine.

3.2.3 Stigma

The existence of stigma as a barrier to dementia care access among ethnic minorities in the UK was reasonably consistent in various studies (Seabrooke & Milne 2003, Mackenzie 2006, Mackenzie et al. 2003, and La Fontaine et al. 2007). While stigma is an essential element of nearly all if not all cultures, its levels of expression vary (Mackenzie 2006). However, despite a general improvement in dementia knowledge among the UK's public in recent years, it would be wrong to argue out the non-existence of dementia stigma. Nonetheless, according to (Seabrooke & Milne 2003, Mackenzie et al. 2006 and La Fontaine et al. 2007) the minority ethnic communities in the UK (i.e., Black Caribbean, Irish, Eastern European, and Asians) have the highest levels of stigma. As discussed earlier, a challenge was encountered in distinguishing culture and religious related stigma. For instance, according to Mackenzie et al. (2006), communities that believe in reincarnation tend to perceive dementia as a punishment for people's poor behaviours in their past lives. Moreover, research (Azam, 2007) conducted among the UK's Irish and Black Caribbean communities indicate that the two communities tend to perceive dementia to be caused by mental illness rather than psychological changes in the brain. Furthermore, Mackenzie et al. (2006) found that dementia stigma among Eastern Europeans in the UK is associated with experiences of persecution. Stigma was also related to feelings of fear, guilt, shame, and embarrassment, leading to concealment and denial of dementia condition and failure to seek medical attention (Mackenzie 2006). Another important concept that was revealed across the reviewed studies is that of ‘outsiders,' racism, and trust issues. Seabrooke & Milne (2003) and La Fontaine et al. (2007) reported that minority ethnic communities, especially Arabs, were reluctant and anxious about letting other carers come to their homes to provide support and care. Besides, the lack of choice of religion, gender and language further disincentives the ethnic communities from seeking home-based care due to fear of stigmatization based on race and culture (La Fontaine et al. 2007). Consequently, care options are generally considered unacceptable for such communities.

One reviewed paper (Travers et al., 2007) also reported community expectations as significant cultural barriers to accessing to dementia care among the UK's ethnic minority communities. According to Travers and colleagues, the community expectations (especially among the Sikh community) put pressure on the family members to practice their clearly defined roles and responsibilities. In the Sikh culture, family members have no choice but to take the carer role because they are expected to cope with the challenges that accompany their family members' state of old age. These cultural expectations were further compounded by the perception of institutionalized racism, which further complicates the community's trust in the healthcare delivery system as well as negative attitudes held against healthcare providers during diagnosis.

3.2.4 Religious Barriers

Reviewed literature (Regan 2012, Regan et al.,2013, Regan et al., 2014a, and Regan 2014b) has identified various impacts of religious beliefs and practices on access to dementia care among members of ethnic minorities in the UK. For instance, religious barriers to residential and day-care are evident in the religious perception of food and the opinion that the patient may not obey certain religious rituals associated with food among British people of Punjabi origin (Regan 2012). Moreover, within the British Punjabi community, mental illnesses such as dementia are considered a taboo, and therefore, families cannot seek help from an outsider. According to Reagan (2012), the stigma associated with mental illness affected various religious practices such as marriage among the Punjabi community in the UK.

3.2.4.1 God's Will

This is amid findings by Reagan (2012) that in the Punjabi religious practices, negative or positive nuances of life were considered God's plan and therefore seeking cure or help may be perceived as interfering with God's will. There is an extensive exploration of religious beliefs as barriers to dementia care access among ethnic minorities in the UK, especially with regards to ‘God's Will. Particularly Reagan et al. (2013), explored the theme of God's will by evaluating the misconceptions regarding the etiology of dementia as a health problem. Traditionally, various minority ethnic communities in the UK, such as the Punjabi community believes that the occurrence of dementia cannot be evaluated through a biomedical perspective, but rather as God's will and plan. This belief has a negative implication on access to dementia care because the health condition is never considered as an illness; thus, no medical help is sought. In a study by Bowes & Wilkinson (2004) involving Asian and Pakistani dementia patients, caregivers and healthcare professionals, it emerged that dementia symptoms were attributed to other factors such as visitors (i.e., among the Pakistani) or spiritual factors such as ‘an evil eye.' Consequently, they only seek care when they were overwhelmed by the behavioral manifestations such as wandering.

3.2.4.2 Religious Duties

In some minority communities, family members assume the religious role of providing holistic care to their kins with dementia, and this acts as a barrier to seeking external care. (La Fontaine 2007, Lawrence et al. 2008). The two studies revealed that a majority of British South Asian and Black Caribbean communities perceive the duty of care as a religious obligation that only ends when crisis sets in, and therefore access to care was not sought until the patient's condition worsened. While the two themes of God's will and religious duties have emerged as some of the barriers that could also be classified as ‘cultural,' it is challenging to distinguish them as either cultural or religious specific themes clearly. It is therefore considered a normal occurrence that sometimes-religious themes may overlap cultural themes. However, Reagan et al. (2013), in an attempt to evaluate the impact of ethnicity on dementia care among the UK's minority ethnic groups, identified various themes that could accurately be classified as religious from two studies they reviewed. But, the two reviewed studies (Sun et al 2008; Levkoff et al. 1999) were focused on the US population, and therefore, their findings may not apply to the UK context. Besides, the studies focused on Christian minorities and consequently did not capture the settings of other non-Christian ethnic communities. However, despite the dearth of research in this area, Reagan et al. (2013) successfully identified the possible religious barriers to access to dementia care among Christian ethnic minorities with regards to the use of dementia care facilities and the decision to seek dementia care among BME individuals with dementia. For instance, Reagan et al. successfully identified the impact of religious activities such as prayer as a coping strategy to segregation by religious institutions.

Reviewed literature also highlighted religion as a barrier to access to dementia care among ethnic minorities in the UK through its influence on the care pathway. According to Reagan et al. (2013), religion plays a vital role in the decision to seek and use care facilities because, for example, patients and caregivers may fear to be culturally insensitive to their religious beliefs and therefore avoid seeking or using care services. Furthermore, evidence by Reagan et al. (2013) indicates that family members consult religious institutions to seek information about the religious relevance of external care services.

3.3. Factors Facilitating Access to Dementia Care

Generally, there was a lack of research evidence on the factors facilitating access to dementia care among ethnic minorities in the UK. The search papers only yielded two articles (Langa et al., 2017, and Travers et al., 2007 and Bowes & Wilkinson 2003) that discussed the facilitators of dementia care access among UK's ethnic minorities.

3.3.1 Effective health communication

Suggestions emerged from across the reviewed studies (Travers et al., 2007, Langa et al 2017., Bowes & Wilkinson 2003) that reduced barriers to dementia care access for minority ethnic groups in the UK would lead to improved access to care. This implies that addressing the knowledge, cultural and religious-based barriers to care access would facilitate access to care (Langa et al, 2017). Furthermore, according to Travers et al (2007), addressing the healthcare system-related barriers would enhance the patient's ability to access care. The UK government has spent millions of pounds on creating awareness about dementia care through campaigns and healthcare promotion programs that target poor health habits such as smoking and drug abuse. A review of literature about some of these programs shows that the spread of information about dementia care can enhance access to care through behavior change, although this strategy may not be effective by mere dissemination of information (Robertson, 2008). Rather, according to Robertson (2008), the information should be delivered with the right content, from the right source and delivered in the right way. This implies that whereas it may be easier to communicate simpler messages, it does not mean that these messages may be effective in creating behavior change in the target population. Some research evidence indicates that minority ethnic communities may view government messages with some level of mistrust (Mukadam et al, 2013). Hence, health messages are more likely to be viewed positively and create an impact on the target population if they originate from independent sources. Health messages about access to dementia care can cause an improvement in access and uptake of the services when they are positively framed to highlight the benefits of adopting positive attitude and behavior and to inform the minority ethnic communities about the dangers of high-risk behaviors (Office of National Statistics, 2007). The reviewed studies also revealed that the effectiveness of health messages is also influenced by the recipient's mindset, and therefore people who are already worried about health are more likely to respond positively to the health information compared to those that are not. Therefore, according to Mukadam et al, (2013), health campaigns about dementia care should specifically address the barriers and concerns of the BAME carers and the target patients. For instance, there is an erroneous belief among minority ethnic groups in the UK that dementia originates from non-biological causes thus nothing can be done about it. It is, therefore, possible that community and religious organizations can deliver information against this belief more effectively compared to the Department of Health depending on whom the targeted population may view as trustworthy (Myers et al, 2007). The method of delivering information is also important because generic communication tends to be less effective than personalising communication. For instance, in a study evaluating the uptake of cancer screening, the uptake was found to be 50% in the group that had received personalize communication compared to those who received generic communication (Myers et al, 2007).

There is existing evidence of health campaigns aimed at creating dementia awareness both at international and national levels. For instance, in 2012, the UK's National Dementia Awareness launched a dementia awareness campaign targeting both minority ethnic groups and the general population (Makadam et al 2013). The campaign intervention was run through TV adverts, information leaflets and online platforms both locally and nationally (e.g.in Nottingham). Moreover, there is evidence if health campaigns specifically targeted at dementia patients among the minority ethnic groups such as the one targeting the South Asian community in Bradford since 2009 (Mukadam et al 2013). Particularly, the latter campaign targeted to raise awareness about access to dementia care among the Asian minority ethnic groups that were found to be underusing the services. In the international arena, various campaigns have been launched in different countries to create awareness about dementia care an reduce stigma through various techniques such as the supply of dementia information, involving dementia patients from minority ethnic groups in social events and organizing arts programs for people with dementia (Batssch et al, 2012). An overview of these initiatives revealed that they take a rational approach towards improving dementia knowledge, although no data is proving their effectiveness in improving the target population's access to dementia care or help-seeking behaviour. However, one study by Hurt et al (2012) compared the outcomes of people who sought help for memory health issues versus those who did not seek help. The study found that those who sought help were more likely to believe that the symptoms could have more serious symptoms, and they were more likely to believe that the problems were caused by biological reasons which could be addressed through medical treatment. Thus, it is easier to extrapolate that changing the beliefs about dementia can enhance help-seeking behaviors among minority ethnic communities in the UK. During the review, one study was encountered that evaluated the effective intervention and found positive results (Seabrooke & Milne, 2009). The project targeted the South Asian community in Kent and involved the use of bilingual leaflets written in Punjabi and English languages. "The leaflets were entitled Ageing and Memory Problems: the help available," and contained information about some of the most common types of dementia, their causes and the locally available services. The leaflets were distributed to 167 South Asian patients from a local community health group of age 65 years or above (not diagnosed with dementia) and advised them to book appointments with an Asian nurse practitioner in case of any concern about their memory. The leaflets were made easily available and after six weeks, a total of 5 South Asians had made appointments following memory concerns compared to no appointments made three months before the project. The project outcome indicates that help-seeking rates may be improved through the dissemination of targeted written dementia information. However, according to Seabrooke & Milne (2009), there was a relatively modest increase in help-seeking related to the South Asian population. Furthermore, Seabrooke & Milne (2009) highlight the case of an Asian man who sought help following memory concerns. While he had normal memory, further examination indicated that he cared for his mother who had dementia. As state by the author, the woman was considered by her son as normal and was assumed by her son to have been suffering from normal old age, rather than having dementia and in need of external help. This case highlights the importance of providing dementia information and raising adequate dementia awareness among the minority ethnic groups, and that when information about dementia is culturally targeted, it may be effective in promoting help-seeking. In another study by Demyan & Anderson (2012), results showed that disseminating about mental health through the media was effective in developing a positive attitude towards help-seeking among the targeted population. However, results by Demyan & Anderson (2012) did not indicate any evidence on the actual translation of the positive attitude into actual help-seeking. On the other hand, Bhugra & Hicks (2004) found that individuals who received written information about depression where more likely to seek help for depression and opined that antidepressants could be of help. Whereas Bhugra & Hicks (2004) did not measure actual help-seeking, the results showed that only 40% of the participants approached for treatment received treatment. This finding raises the question of how people who are not interested in receiving help-seeking messages can be reached.

In another study by Gulliver et al (2012a) evaluating various interventions meant to increase awareness of mental health problems and encourage help-seeking, it was found that mental health literacy programs improved help-seeking attitudes but did not change the help-seeking behavior of the target population. Besides, there was less evidence of the impact of the program on the help-seeking attitude. Gulliver et al (2012b) also conducted an exploratory randomized control trial and found that literacy programs on mental health problems contributed to an increased positive attitude but did not have any effect on actual help-seeking. However, Gulliver et al (2012b) acknowledged that their study was underpowered to identify the effects. Nonetheless, an overview of these pieces of research indicates that health literacy programs on help-seeking behavior may have a positive impact on help-seeking attitudes but may not have any impact on actual help-seeking. A body of reviewed literature also highlighted better healthcare systems as facilitators of dementia care access among minority ethnic groups. Whereas increasing help-seeking attitudes may contribute to more individuals seeking help from practitioners, barriers to early diagnosis, especially at the first point of contact i.e. the GP may prevent the patient from receiving quality care. Hence, improved healthcare systems come out as a significant factor in facilitating access to dementia care. Practitioners may be reluctant to provide care based on the assumption that the patient would not want to receive treatment due to stigma or because of the feeling that diagnosis may not help (Koch & Iliffe 2011; Moore & Cahill 2013). In the study by Moore & Cahill (2013), practitioners acknowledged the importance of early dementia diagnosis but did not proactive in referring the patients to receive an early diagnosis. In another study evaluating the effects of educational interventions to improve primary dementia care, the participants reported that a relatively passive provision of information to a group of people had an insignificant impact on dementia diagnosis rates, but the use of smart decisions support software could help in improving dementia diagnosis at the primary care level.

3.3.2 Cultural adaptation care accessibility

There was a consensus across the reviewed literature regarding the vital role of culturally adopted dementia care as an enabler for dementia among minority ethnic groups. For instance, the problem of language barrier occurs as a significant barrier to help-seeking (Shah et al 2008, Bhattacharyya 2012) and even though some dementia assessment procedures have been administered in minority languages such as Bengali, Gujarati, Urdu, Hindi, an Bengali, the services of a skilled interpreter or a bilingual clinician is needed (The British Psychological Society 2019). In fact, according to The British Psychological Society (2019), language adaptation can be a great enabler for the uptake of psychological interventions. Older people from BAME groups may present different forms of dementia-related problems to their nurse practitioner. For example, the Indian patients may present challenging behaviors that differ with those presented by indigenous White British patients – as revealed in one study Haier & Shah (2004) whereby the Indian patients were less likely to exhibit phobia or anxiety. Khan (2015) also found that dementia patients from communities that previously experienced racism and hostility were less likely to seek help. According to The British Psychological Society (2019), dementia patients are more likely to access care when these cultural and religious differences are considered within the care pathway including the delivery of palliative care. Flexibly delivered care, whereby patients from the BAME groups receive care within their localities and spiritual centers (e.g. churches, mosques, and Gurdwaras) as well as in the local recreational areas such as restaurants, barbershops, and community centers can increase access to dementia care. While culturally adopted has been proven to be an enabler for dementia care accessibility for BAME groups, reviewed literature has identified various challenges encountered in the process of adaptation. In the UK, the Equality Act 2010 requires all healthcare providers in Scotland, England, and Wales to adopt a nondiscriminatory healthcare provision. Yet, the little research on this matter indicates that the availability of ethnocentrism in the UK Mukadam et al. (2011), which is the provision of non-culturally tailored essential services (e.g. healthcare or security) to people who need them. Research evidence by La Fontaine et al. (2007) shows that dementia patients from the BAME groups are more likely to seek dementia care in the late stage of the illness and that most of those services do not give a person-centered approach to their needs. A good practice would, therefore, be the delivery of dementia care services that consider the minority community's local needs and meeting those needs or when they arise. Also, when nurses and other practitioners make a personal commitment to provide equal access to care among patients of different ethnicities, patients from the BAME groups are likely to have increased access and uptake of dementia care All-Party Parliamentary Group on Dementia (APPG, 2013). A good example of a culturally tailored dementia care program in the UK is Slough's Punjabi Cognitive Stimulation Therapy (PCST) which was established to meet service user's care needs through evidence-based interventions within that particular locality (The British Psychological Society 2019). According to The British Psychological Society (2019), the intervention is targeted at individuals with moderate dementia and seeks to engage dementia patients in a suitable social environment that enhances learning. The project targets to deliver learning skills organized within specific themes such as word association, food, and sound; and it has so far been successful in improving the accessibility of dementia care within that particular locality (The British Psychological Society 2019).

CHAPTER 4

Discussion

The study identified fifteen literary materials on barriers and facilitators of dementia care access among ethnic minority groups. Afterward, the researcher synthesized the results and thematically discussed them to have a better understanding of the association between the facilitators and barriers of dementia care access in the minority ethnic groups and to evaluate the practice implications of these barriers and facilitators further. Observably, most of the reviewed papers reported similar themes regarding the experienced barriers and facilitators of dementia care access. Nonetheless, the reviewed studies bring about a new understanding of existing evidence. Furthermore, whereas the review touched on different minority groups that should not be considered homogeneously, there were specific common characteristics within these groups that contributed to inadequate knowledge about dementia care and the importance of early diagnosis. Broadly, the study evaluated the barriers within three major domains, namely: inadequacies cultural and religious beliefs, thereby suggesting that the three concepts contribute to barriers of access to dementia care among minority ethnic groups whereas the study experienced a dearth of research focusing on facilitators of access to dementia care, most of the reviewed literature focused on health communication, cultural adaptation of dementia care, and positive help-seeking attitude. Inadequacies appeared to be associated with barriers at the service levels, thereby indicating the need for an inclusive education targeting the minority populations. This calls for the development of culturally adapted patient education by, for example, using pictures from the target community (Ander et al., 2003). Furthermore, according to Lamb et al. (2015), there is a further need for dissemination of information that penetrates the minority ethnic groups by exploring other alternatives of information dissemination channels such as community organizations or media.

Reviewed evidence also shows that minority ethnic groups remain under-diagnosed partly due to a lack of specialist skills and partly due to cultural beliefs. Therefore, because primary care is the first point of contact with patients seeking dementia care, there is a need for further research and development on how to deliver quality primary care for dementia patients from minority ethnic communities. When a proper diagnosis is taken care of, it creates an opportunity for the patients to access care and for the caregivers to identify who the patients are and what their care needs are. It is broadly assumed that minority ethnic communities prefer to care for their family members. While reviewed literature supports this assumption to some level, it should not be perceived as an alternative to formal intervention and support for dementia care (House of Commons All-Party Parliamentary Group on Dementia, 2013). This is because while the burden of care placed on family members may be useful, there reaches a point when the patient requires formal care from professional practitioners. A variety of reviewed literature indicated the need for tailored services for specific ethnic groups. A possible reason for this proposition is that it may be easier to culturally integrate the care than trying to introduce changes at cultural levels among the target population. By availing adequate resources and adapting the processes such as information dissemination, professional development, and cultural adaptation of health services, it could be easier to eliminate some of these barriers. However, these changes may require significant financial investments to accomplish (Mier et al., 2010).

The review also highlighted the need for interaction and cultural engagement with the minority ethnic groups to influence some significant changes in their cultural and religious beliefs. With this regard, it is essential to note that people may not be aware of the impacts of cultural and religious beliefs on them, and therefore an additional investment in service delivery may not create any significant change, or it may be part of a long process which entails a long duration of intervention to achieve small changes. There is an apparent link between the identified inadequacies and cultural barriers; therefore, separately addressing them would not yield any significant results. Other researchers have explored various ways in which access to psycho-social care for mental health can be improved. Notably, Gask et al. (2012) argued that it might be challenging to enhance the minority communities' knowledge of dementia, enhancing practitioner's acknowledgment of the problem and conducting service adaptation to give participants more choices without considering the patient's cultural expectations and beliefs. The findings of the current study reveal that delivering interventions at community levels could be of great benefit. The findings of this review reiterate the results of other studies (LoGiudice et al. 2001, Westbrook & Legge 1992, Petrov 1997) and add knowledge to already existing insights on issues of dementia care access among ethnic minorities. A significant issue that emerged across the reviewed studies is that whereas there is a common cultural habitus among most minority ethnic groups, there are also distinctions in the i.e., beliefs, behaviours, and attitudes. Apart from each community's cultural habitus, individuals are influenced by their socio-economic status, backgrounds, family, and education (Iliffe & Manthorpe 2004, Rao et al. 2006). Moreover, family carers have different backgrounds, attitudes, and experiences that contribute to this heterogeneity. A possible implication of this heterogeneity is that service providers should not make assumptions about the patient's behaviours and beliefs based on their cultural and language orientation.

Another issue that emerges from the review is that not all the BAME groups have the same needs and care access issues. While this study did not intend to compare the behaviours and beliefs of UK's minority ethnic groups hence, it cannot report such differences; we observed both significant differences and similarities among the minority ethnic groups. With this regard, we assume that the differences might have been due to each community's core religious and cultural beliefs as well as the duration each community has spent in the UK, the level of similarity between their cultures and the British culture, and the type or amount of ethno-specific resources available at respective community levels. While there is a significant need for both ethnic-specific and mainstream dementia care programs aimed at improving dementia care access to ethnic minorities as well as the general population, little progress can be achieved by providing each of the services alone. There is a likelihood that each geographical spread and the number of people from the BAME groups in need of dementia care services will increase. Besides, from a logistical and resources point of view, it may be challenging to provide specific dementia care services for small groups of the ethnic minority communities. Therefore, in addition to promoting culturally adopted dementia care services, it is also crucial for the mainstream services to provide culturally accommodative care that takes account of both religion and language (Shanley et al., 2012). Consequently, it is vital to develop a partnership approach to dementia care, which integrates both culturally adopted care and mainstream care within an effective model of good practice (Radermacher et al., 2009). For instance, an involvement of GPs in such partnerships can enhance a holistic approach to BAME dementia care provision. The findings of this review corroborate with the results of other studies (LoGiudice et al 2001) with regards to the different understanding of dementia among various BAME groups, the lack of knowledge about dementia care services among carers, cultural beliefs about family care responsibilities that discourages people from seeking external care until in critical conditions, inability of carers to accept residential care, the vital role played by bilingual carers, and preference for ethno-specific care services.

Apart from reviewing and unveiling previous evidence, the current study has made new contributions to the existing literature about the BAME community's experience of dementia care access and uptake. It is apparent that BAME groups family carers experience a lot of challenges in caregiving and despite their preference to keep dementia patients at home, and therefore they may be willing to uptake care services that enable them to do so. Besides, family carers may use residential care as a last resort, although they might have difficulties of taking it up due to reluctance, a feeling of guilt and dealing with emotional, financial and personal issues. This implies that education on residential care services, especially with regards to the reasons for residential care and what it involves, may be of great benefit to the BAME groups. Furthermore, individual counseling would be vital because they may seem to be making decisions that go against the wishes of their families and cultural norms. The findings of this review corroborate with earlier studies. Some conducted in the US and Australia, which found that minority ethnic communities have lower access and use of dementia care compared to the general population. Notably, researchers have become concerned with this inequality of service access an uptake because it contributes to poorer health outcomes and well-being among the ethnic minorities. Consequently, according to National Audit Office (2007), the UK government has made several efforts to improve accessibility, including the establishment of culturally targeted special memory services that aim at providing appropriate care for ethnic minorities. It is also apparent from the review that providing equal access to dementia care among all the minority ethnic groups would ensure that there is equality in the provision of health benefits. The results are reflective of already existing research evidence regarding the impact of religion and culture on the accessibility and uptake of dementia care within minority ethnic groups. While it is not within the scope of this study to discuss the reason why there is a disparity in healthcare uptake and experiences of religion between ethnic minorities and White majority communities, previous studies hint that BAME cultures have certain tenets such as familial duty of care that acts as barriers to access of dementia care (La Fontaine et al., 2007). From a religious perspective, the current review found that some most minority communities perceive illness as karmic retributions or God's will. These findings corroborate with the results by Jett (2006) that made similar conclusions but asserted further that such perceptions are associated with stigma and shame regarding mental illness. Therefore, it is within this scope that the present study argues that individuals from minority ethnic groups with dementia do not have frequent access to dementia care compared to their White majority counterparts and that they are less likely to be satisfied with the care when they receive it.

The present review encountered a lack of research papers focusing on accessibility to dementia care services among the UK's ethnic minority communities. Moreover, the few that were identified did not meet the inclusion criteria. However, a hand search for further literature revealed useful insight into religion and dementia care access among the UK's ethnic minority populations, results that corroborated with the findings of the included and reviewed studies. For instance, Moreland (2001) conducted an interviewed a group of religious leaders from the Asian and African-Caribbean communities, whereby the Asian communities were represented by Muslim and Sikh while representatives of the African-Caribbean were Christian organizations from Pentecostal and Methodist denominations. The study's main aim was to evaluate the participant's knowledge of dementia, their knowledge about dementia care services, and how their respective religions influenced their perception about dementia care. Data from the results showed a lack of awareness among the participants about dementia, its effects, and available services within the locality. Similar to the findings of the current review, one of the respondents in the study by Moreland (2001) indicated that the word dementia did not exist in the African-Caribbean vocabulary. Also, many Asian languages do not have direct translations of the word ‘dementia' while the knowledge of dementia was also found to be low among all the interviewed Asian communities. Furthermore, according to Moreland (2001), the interviewed religious leaders had little knowledge about dementia compared to individuals working outside religious organizations. While Moreland (2001) found an awareness of the needs of Asian patients with dementia, these needs were not adequately addressed. Nevertheless, Moreland (2001) observed general perception among the Asian communities as a taboo and a socially unacceptable condition associated with stigma. Consequently, individuals with dementia required a high level of privacy, which later led to a series of spiritual problems (Moreland, 2001). Moreland (2001) also observed that in some cases, failure to use services was attributable to a perception that the services did not meet cultural regimes or prescription of culturally unaccepted food. Having established the role of religion as a barrier to access to dementia care minority ethnic groups (e.g., Sikh, Muslim, and Hindu), this understating implicates the general and specific understanding of mental healthcare and dementia respectively. The review has demonstrated that religious beliefs influence the knowledge and understanding of dementia among most minority ethnic groups. Reviewed literature has indicated instances where dementia is not recognized by Hindu and Sikh communities as a mental illness but rather perceive as normal stages of aging. Furthermore, behavioral manifestations of dementia (e.g., aggression wandering, confusion, and incontinence), as well as memory loss, are often perceived by the minority ethnic groups as typical characteristics of aging. The current review has also shown that cognitive decline emanating from dementia is religiously attributed to ‘God's Plan' or as a punishment for ill deeds. Conversely, the review has also shown that recognition of mental illness by some of the minority ethnic groups leads to stigmatization both with regards to accessing care and acceptance of the disease. As a result, the dementia patients and their families get exposed to negative consequences such as isolation and rejection.

The reviewed evidence also shows that religious beliefs could positively influence the delivery of care and coping with dementia, although these influences were fundamentally due to lack of knowledge about the etiology and prognosis of dementia, as well as lack of knowledge about the available dementia care services. However, knowledge about dementia appeared to be primarily influenced by religious belief, and these beliefs hindered access to dementia care. Ideally, these religious beliefs inhibit access to dementia care by affecting the decisions about from whom, and where the care will be sought. Furthermore, the lack of knowledge about dementia care, as well as the religious beliefs and stigma about mental illness is as clear evidence as to why the minority ethnic communities might be underrepresented in the mental healthcare services. This corroborate the findings by Shanley et al (2012) and Rao et al (2006) indicating that certain minority ethnic communities in the UK (e.g., South Asians) are underrepresented in the dementia diagnosis, unable to receive external dementia care services, and are neither acknowledged in the immediate family nor the wider community.

CHAPTER 5

5.0 Conclusion and recommendations

The identified barriers to dementia care among minority ethnic communities warrant elaborate and comprehensive interventions. The interventions are especially necessary, considering the implicating nature of dementia to the quality of life of the patients and their families. We recommend a wide range of interventions addressing cultural, religious, and health systems issues. Moreover, we recommend various measures to address stigma and the inadequacies associated with poor access to dementia care among the minority ethnic groups. Furthermore, these interventions can be applied in addressing other forms of health inequalities targeting other underrepresented communities, thereby encouraging access to care services.

5.1 Education

The review has established that inadequate knowledge about dementia, its aetiology, and epidemiology as bio-medical issues exists as one of the barriers to dementia care access among the minority ethnic communities. Therefore, there is a need for adequate information about dementia as a neurological the benefits of early diagnosis and the available care services, so that individuals can make informed decisions on the most appropriate care pathways for them. Religious communities should also be educated by carers, emphasizing the need for integration between family care and formal mental healthcare interventions. This recommendation corroborates with the assertions of Shah (2010) that minority ethnic groups require adequate education to enhance awareness about available dementia care and to eliminate cultural barriers for BME people's access to dementia care. Furthermore, according to Shah (2010), awareness campaigns would also help reduce stigma. An essential element of the education intervention is direct involvement with the BME religious communities and provision of culturally adapted teachings, or to encourage the use of spiritual teachings in providing dementia care education. The review also identified a lack of direct translation of the word ‘dementia' among most minority ethnic languages. Ideally, this creates a communication challenge between mental health service providers and dementia patients from those minority communities. This implies the need for dementia awareness programs delivered in native languages by collaborative teams consisting of both mental healthcare service providers and cultural or religious representatives. However, the awareness programs should be offered in an interactive format where the communities can ask questions about dementia, its causes, and availability of care services; and find appropriate and informative answers to such questions.

Some of the practical action plans that can be adapted to deliver effective dementia awareness programs that include the use of leaflets and other print media delivered in neutral language (e.g. ‘looking after' instead of ‘carer') so that people can easily understand the meaning of such terms (Office of National Statistics, 2002). It would also be useful to hold campaign roadshows at community or religious centers or delivering DVD videos with dementia information especially in communities where people are mot well aware of English or mother tongue (St John, 2004). Nonetheless, the study holds that education will help create better awareness about dementia and enhance access to dementia care services by addressing the following issues:

· Desensitizing the communities about dementia-related stigma or mental health-related stigma.

· Enabling the members of the minority ethnic communities to make informed decisions about their preferred dementia care options.

· Enabling the members of the minority ethnic communities to make early care decisions after diagnosis

· Providing the communities with the right care and support

· Providing an opportunity for early planning after having a comprehensive understanding of the disease prognosis

· Relieve family members of care burden

· Acknowledge the role of culture and religion in encouraging and giving hope to dementia patients as well as in initiating community care

A partnership between religious leaders and social care workers will enhance the acknowledgment that both religious care and formal healthcare can be combined to deliver comprehensive care to the patient. Hence, an educational intervention can be achieved in two domains. The first domain would be to create awareness about the biomedical nature of dementia and secondly, to train religious leaders on the need to accept dementia as well as how to provide care to family members with dementia. Furthermore, there is a need for a trusted social worker who acts as a ‘link' between the community and the healthcare facilities, and whose primary function is to ensure that healthcare message is delivered within communities and places of worship. For effective results to be achieved, the education and awareness campaigns should be delivered at the grassroots levels, to the right people and in the proper format (Regan, 2013). Besides, according to Regan (2013), educational campaigns are more useful when they are delivered through the right channels e.g., places of worship, or through respected individuals in the community. Ideally, the educators should bear in mind that the campaigns are meant to educate people who have little prior knowledge about dementia, and not to dictate to them. Furthermore, it is imperative to communicate in a way that the target population can understand. As hinted above, this can be achieved by using DVDs delivered in native languages. On the same note, translators can be of great importance in facilitating communication between care practitioners and patients. However, because hiring translators may have serious financial implications, it may be wiser to have bilingual practitioners who can speak the same language as the patients. This study also recommends that awareness campaigns should shift away from a paper written media or delivery of mental healthcare information through printed media, and instead focus on more personalized ways of information dissemination because printed media limits some groups (e.g.. the illiterate or those with aphasia). Care should also be taken to ensure that the role models involved in the campaigns are not only from the White British but also consist of role models from the minority groups to demystify some of the stigma associated with access to dementia care. When addressing religious issues or barriers, the role models should be creative enough to develop programs such as incorporating dementia care information in religious sermons and integrating into the sermon information that enhances support for people with dementia. Besides, the religious scope of the intervention could include the family role of care and how religious leaders can collaborate with family members to facilitate the effective delivery of care.

Outright invitation of dementia patients from minority ethnic groups for mental healthcare can also be explored. However, Regan (2013) found that the Muslim and Sikh communities are especially welcoming to visitors attending their religious activities, and this can be an opportunity to provide education and awareness for family carers. Education delivered within the religious settings can likely be viewed as ‘trustworthy' by the recipients compared to messages delivered outside the religious context (Shanley et al., 2012). Thus, mental health practitioners can have consultation stands in such religious events to spread awareness and educate people in access to dementia care. An important question in regards to these recommendations is ‘when' the education provision is appropriate. Evidence by Jeon et al (2010) suggests that mental health awareness campaigns are more effective when they are conducted because people are less likely to comprehend the information about the mental illness nature of dementia with fewer sessions. According to Lawrence et al. (2008), conducting regular events with the same mental healthcare teams can be more effective in building up trust and confidentiality within the target population. A strategy can be developed whereby after the group sessions of education, attendees can be allowed to make private inquiries about dementia with a health professional or to develop an elaborate follow-up plan with the attendees. Ideally, follow-up sessions and private consultation provides an opportunity for the patient too deliberate on the information and evaluate their care options before deciding to seek further external medical assistance. The need for community-based awareness campaigns creates an elaborate job role for mental health practitioners to participate in creating awareness. It is the responsibility of the respective health workers to liaise with the community and religious leaders and coordinate the activities within the awareness programs. For example, according to (Shah et al., 2008), the NHS creates a team of Mental Health First Aiders to help create awareness of mental health care among minority ethnic communities in the West Midlands. This model can be adapted for minority ethnic communities in other boroughs or train religious and community leaders on dementia symptom recognition and how to deliver first-line care, thereby providing a first-line engagement and signposting of available care services. Nonetheless, there is a need for elaborate dementia support training and the establishment of cultural and spiritual teams working with mental healthcare services to enhance the accessibility of care.

Much still has to be done in enhancing service access. Ideally, once the target populations have received adequate education about dementia, they should receive support to access care (Muukadam et al., 2011). The featured barriers of access in this review warrant the assumption that a few people would seek dementia care unprompted. Hence, three strategies can be used to improve accessibility. The first strategy is providing transport means to mental healthcare centers and facilities, and encouraging family carers ton accompany the patients during visits. The second strategy would be to bring the care to the doorstep of the community through mobile clinics set up in the community or cultural centers where people can confidentially receive screening services. However, the effectiveness of these strategies may be limited by time and resource constraints. Nonetheless, the third strategy would be to provide home visits by the mobile clinic teams, especially for people who may be willing to attend the clinics but lack the transport or family support. These strategies would improve access to early clinical diagnosis of dementia, and consequently enable access to quality care while reducing the burden of care through the use of limited resources. Ideally, a patient who receives early diagnosis prevents the need for services in later stages as a result of physical morbidity or when the patient is injured through physical accidents, for example.

5.2 Service provision

Based on the review findings, it is apparent that the reason why the service needs for dementia patients from minority ethnic groups are not adequately met is that this group is so underrepresented in the mental healthcare service provider that there is no demand for resources. Ideally, the lack of demand for resources creates no business case for the allocation of funding to provide these services (Brooker & Surr, 2005). However, it is imperative to note that the low demand for dementia care services among these communities does not mean that there are no people with dementia in minority ethnic groups. Increasing the volume of mental health practitioners specifically meant to target the minority ethnic communities (i.e., a similar group to Mental Health First Aiders in the West Midlands campaigns) would enhance the link between communities and mental healthcare services. The existence of Mental Health First Aiders and its link with the NHS and the government is perfect evidence that there exist dementia patients among the BAME communities and that there are strategies that can be implemented to capture persons in need of care and that they can be encouraged to get early care. Nonetheless, it is crucial for NHS and other relevant healthcare bodies in the UK to harness the necessary human and financial resources that would enable them to meet the existing demand for care. While some Hindu and Muslim respondents in the study by Regan (2013) argued that dementia should be non-medicalised because only a few cases of dementia are medically treated, we argue that much focus should be given to the psycho-social component of treatment because the cultural and religious activities of such communities provide the best platform for support. It is crucial to take advantage of these platforms by developing future care plans (Alzheimer's Society, 2012).

5.3 Leadership and governance

The current study found that inadequacies within the healthcare systems as one of the barriers to dementia care access among BAME ethnic minorities. While several recommendations have been made on how the health system failures can be fixed to enhance accessibility, the role of leadership and governance cannot be overemphasized. The study has also acknowledged the care gaps among specialist careers and the role played by specialists to deliver culturally-adapted dementia care to BAME, and the likeliness that specialists are only White British who may find it challenging to provide culturally adapted dementia care to the BAME communities. However, certain efforts can be made by the hospital leadership and management to eliminate the feeling of isolation by BAME dementia patients when they seek care in hospitals that lack ethnic diversity. For instance, leadership can play an essential role in developing the vision and purpose among the available specialists aimed at providing person-centered care to dementia patients from BAME communities. This can practically be achieved by identifying specific goals for delivering care to BAME dementia patients so that it is part of the hospital's vision to provide culturally adapted dementia care and to enhance inclusivity within the care practice (Brady et al., 2010). Leaders also have a role in enhancing professional development for dementia specialists tasked with caring for BAME dementia patients. It is the role of hospital leadership and management to ensure that there is adequate professional development in various aspects of culturally-adapted dementia care including the provision of opportunities for staffs to learn specific BAME languages or cultures that would promote culturally adopted care (Brady et al., 2010). We have also recommended community-based programs aimed at delivering care at the ‘doorstep' of BAME dementia patients, especially those who are not able to secure transport or family care to seek care at centralized facilities. However, we have also acknowledged that implementing community-based programs would encounter financial challenges. Hence, leaders within the mental health care system have the responsibility of mobilizing resources and ensuring there is adequate activity-based funding for outreach programs that deliver dementia care to BAME communities at the community levels. Besides, the leaders have the responsibility of ensuring that each action plans within the programs are adequately funded.

5.4 Government policies and legislation

Policy-makers must involve dementia patients from BAME and their carers in the process of developing and designing dementia care services Daker-White et al. (2002), as well as the development of successful programs for creating awareness and addressing knowledge inadequacy as a barrier to dementia care access. Furthermore, effective policies should be developed to ensure that the communities are assisted in accessing and uptake dementia care (Jolley, 2009). It is also crucial for policy developments to address the time scales for success evaluation of community awareness programs and to address the funding challenges that may hinder sustainable dementia care programs for patients from BAME communities. Similarly, policy developments should address the various care pathways that dementia patient from BAME communities have taken and how this information can be used to address their care needs (Mukadam et al., 2010). This implies gathering data on ongoing dementia formal treatment for patients from BAME communities and using this information to estimate their care needs. Ultimately, policy developments should address the issue of health inequalities and ensuring that dementia patients from BAME communities are not underrepresented in formal dementia care services. Apart from policy developments government agencies, including the NHS and the Department of Health should be aware of the increasing number of dementia patients from BAME communities who are in need of dementia care services (National Collaborating Center for Mental Health, 2006), the community's dispersed nature and its implication on the need for care within the localities. The government, through the Department of Health, should also initiate research and consultation at the community local levels as part of the efforts to develop care services.

The findings of this review reveal several implications for practice for healthcare professionals. But first, it is essential to acknowledge that there have been a lot of efforts from healthcare professionals in the UK to provide inclusive dementia care and to ensure that minority ethnic groups have not been left out in terms of accessing quality dementia care (Regan, 2012). However, there is a fundamental need for mental healthcare practitioners to acknowledge the cultural and spiritual needs of service users and make efforts to address these needs using the available resources. Besides, mental healthcare practitioners should acknowledge the need to improve the psycho-social component of care. On the other hand, the findings of this review imply that managers in the healthcare sector should develop strategic approaches that facilitate the link between local ethnic minority communities and their religious needs while fulfilling their psycho-social care needs.

References

Adams, T. (January 01, 2008). Clinical settings, competencies and skills in dementia care nursing. 205-226.

Adamson, J. (1999) Carers and dementia among African/Caribbean and South Asian families', Generations Review, vol 9, no 3, pp 12−14.

Adamson J. (2001) Awareness and understanding of dementia in African/Caribbean and south Asian families. Health and Social Care in the Community; 9(6):391–6.

Anderson LM, Scrimshaw SC, Fullilove MT, Fielding JE, Normand J. (2003) Culturally competent healthcare systems: a systematic review. Am J Prev Med;24(3S):68–79.

Azam, N. (2007) Evaluation report of the Meri Yaadain dementia project, Bradford: Bradford District Health and Social Care Communications Team.

Brijnath, B. (2014). Unforgotten: Love and the culture of dementia care in India. New York : Berghahn, 2014.

Bowes A, Wilkinson H. (2003)we didn’t know it would get that bad’: south Asian experiences of dementia and the service response. Health Soc Care Community;11(5):387–96.

Brooker, D., & Ebrary, Inc. (2007). Person-centred dementia care: Making services better. London: Jessica Kingsley Publishers.

Bowes, A. and Wilkinson, H. (2004) We didn't know it would get that bad": South Asian experiences of dementia and the service response', Health and Social Care in the Community, vol 11, no 5, 387−396.

Botsford and Harrison Dening (eds) Dementia, Culture and Ethnicity: Issues for All. London: Jessica Kingsley Publishing.

Bowes, D., & Wilkinson G. (2003) The influence of culture and religion on first-generation Hindu Asian American perspectives on psychotherapy. Dissertations Abstracts International: Section B: The sciences and Engineering, 71, 2676-2680.

way we organise our services: results from a UK field study of marginalised groups and dementia care', Disability and Society, vol 20, no 1, pp 67−80.

Brooker D. & Surr C. ( 2005) Dementia Care Mapping: Principles and Practice. University of Bradford, Bradford.

Cummings G. ( 2011) The call for leadership to influence patient outcomes. Nursing Leadership 24 ( 2), 22– 25.

Downs, M., & Bowers, B. (2014). Excellence In Dementia Care: Research Into Practice. Maidenhead: McGraw-Hill Education.

Fink, A. (2014). Conducting research literature reviews: from the internet to paper. London : SAGE

Funk, L., Stajduhar, K. I., Toye, C., Aoun, S., Grande, G. E., & Todd, C. J. (2010). Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998-2008). Palliative medicine, 24, 594-607.

Gulliver A., Griffiths M., Christensen H., Brewer L. (2012a) A systematic review of help-seeking interventions for depression, anxiety and general psychological distress. BMC Psychiatry; 12:1–12.

Haider, I. & Shah, A. (2004). A pilot study of behavioural and psychological signs of dementia in patients of Indian subcontinent origin admitted to a dementia day hospital in the United Kingdom. International Journal of Geriatric Psychiatry 19, 1195–1204.

Jett, W (2006) Mind-loss in the African American community; Dementia as a normal part of aging, Journal of aging studies. 20, 11-25.

Jolley, D. (2009) 'The "Twice a Child" projects: learning about dementia and related disorders within the black and minority ethnic population of an English city and improving relevant services', Ethnicity and Inequalities in Health and Social Care, vol 2, no 4, pp 5−9.

Khan, O. (2015). Dementia and ethnic diversity: Numbers and trend. In J. Botsford & K. Harrison Dening (Eds.) Dementia, culture and ethnicity: Issues for all. London: Jessica Kingsley Press.

Langa, M., Larson, B., Crimmins, M., Faul, D., Levine, A., Kabeto, U., et al. (2017) A comparison of the prevalence of dementia in the United States in 2000 and 2012. JAMA Intern Med;177(1):51–8.

LaFontaine et al (2007) Understanding dementia amongst people in minority ethnic and cultural groups , Journal of advanced nursing, 60, 605-614.

Matrix evidence,, & Health Foundation (Great Britain),. (2011). Spotlight on dementia care: A Health Foundation improvement report.

Moriarty, J., Sharif, N., & Robinson, J. (2011). SCIE Research briefing 35: Black and minority ethnic people with dementia and their access to support and services. (Research Briefings). Social Care Instutute for Excellence.

Moore V, Cahill S. (2013) Diagnosis and disclosure of dementia – a comparative study of Irish and Swedish General Practitioners. Aging Mental Health; 17:77–84

Mukadam, N., Cooper, C., & Livingston, G. (2013). Improving access to dementia services for people from minority ethnic groups. Current opinion in psychiatry, 26(4), 409–414. doi:10.1097/YCO.0b013e32835ee668

Mukadam, N., Cooper, C. & Livingston, G. (2011). A systematic review of ethnicity and pathways to care in dementia. International Journal of Geriatric Psychiatry, 26(1), 12–20. doi: 10.1002/gps.2484.

Moreland ,N. Cooper, C., and Livingston G. (2001) A systematic review of ethnicity and pathways to care in dementia, International Journal of Geriatric Psychiatry, 26, 12-20.

Pronovost J., Berenholtz M. & Needham M. ( 2008) Translating evidence into practice: a model for large scale knowledge translation. BMJ 337, a1714.

Regan, L. (2014b). Ethnic minority, young onset, rare dementia type, depression: A case study of a Muslim male accessing UK dementia health and social care services. Dementia: The International Journal of Social Research and Practice. (in press).

Rao, V., Warburton, J., Bartlett H. (2006) Health and social needs of older Australians from culturally and linguistically diverse backgrounds: issues and implications. Australasian Journal on Ageing, 25(4):174–179.

Radermacher, H., Feldman, S., Browning C. (2009) Mainstream versus ethno-specific aged care services: It’s not an ’either or’.Australasian Journal on Ageing

Richards, M., Brayne, C., Dening, T., Abas, M., Carter, J., Price, M., Jones, C. and Levy, R. (2000) Cognitive function in UK community-dwelling African Caribbean and white elders: a pilot study', International Journal of Geriatric Psychiatry, vol 15, no 7,

Sun, F., Roff, L., Klemmack, D., & Burgio L (2008)The influences of gender and religiousness on Alzheimer disease caregivers’ use of informal support and formal services. Journal of aging and Health, 20, 937-953.

Shanley J. et al. (2012). A qualitative study into the use of formal services for dementia by carers from culturally and linguistically diverse (CALD) communities. BMC health services research. 12. 354. 10.1186/1472-6963-12-354.

Seabrooke, V. and Milne, A. (2009) 'Early intervention in dementia care in an Asian community: lessons from a dementia collaborative project', Quality in Ageing, vol 10, no 4, pp 29−36.

Travers T. & Tunstall R. (2007) Whitehead C. Population Mobility and Service Provision: A report for London Councils. London: LSE; 2007.

Wayman, L. (2017). A Loving Approach to Dementia Care: Making Meaningful Connections with the Person Who Has Alzheimer's Disease or Other Dementia or Memory Loss. Johns Hopkins University Press.