Dementia Types and Causes

1.0 Introduction

1.1 Statement of the Problem

Generally, dementia is a health condition that affects individuals and interferes with their daily lives. According to Alzheimer’s Society (2018), it is more of a condition than a disease that is causes a decrease in the victim’s mental ability. The condition is understood as a composite of various symptoms that ultimately renders the victim unable to live their normal lives (Giebel et al, 2010). Alzheimer’s Society (2018) indicate that dementia may occur in two major ways i.e. vascular dementia that normally occurs after stroke, and Alzheimer’s disease that usually accounts for sixty to eighty percent of dementia cases. According to Alzheimer’s Society (2018), dementia often develops in stages, and each stage is accompanied by its own unique symptoms and complications. Accessibility to care services at early stages of the condition helps in early development of care plan that may be useful in preparing the patient for the later stages of the condition. This study is therefore of particular importance because it helps in the identification of barriers that could hinder early access to care services for dementia patients among the black and minority population in the UK.

While the black and minority ethnicities in the UK, as well as the British population experience same service accessibility challenges for dementia such as poor support and community stigmatization (Harrison & Bostford, 2015), some factors unique to the black and minority ethnic communities in the UK make them more susceptible to the challenges.

This research proposal preempts a complete dissertation that will seek to identify the factors that promote or hinder the accessibility of care services among the Black Minority Ethnic groups in the UK. The proposal will cover areas such as background and rationale of the study, research aims and objectives, research methodology, ethical considerations and indicative research time table.

2.0 Background and Rationale of the Study

The current statistics regarding dementia prevalence among the BAME community in the UK is worrying. A recent study by Pham et al (2017) which compared the occurrences of dementia among the BAME community with the occurrences among the white community in the UK found that dementia occurrences were 18% lower and 25% higher among Asian and Black women respectively compared to occurrence of the same among white women. On the same note, the study found that dementia occurrence was 28% higher and 12% lower among black and Asian men respectively compared to white men in the UK. This daunting statistics reveal that there is a general increase in dementia occurrence, thereby translating to an increasing number of dementia patients needing care, as well as that of the caregivers. The number has been growing fast among the minority communities as the life expectancy among these communities also continue to increase.

The decrease in mortality rate as older people live longer has resulted to the increased number of care givers. According to Lievesley`s (2010), the number of caregivers in the developed countries is particularly on the rise because more aged people now live longer. The change in demography is also associated with caregivers support needs. However, research evidences show that the uptake of formal social care and support provided by caregivers is still low (Moriarty et al, 2011). Although significant difference can be made such as improving quality of life for patients with dementia, there is a great importance in understanding the cause of the low uptake of social support (Gaugler et al, 2005). This is especially so because delays in taking the formal support required imply that the patient’s health condition continues to deteriorate.

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. A majority of existing research have majorly focused on specific items such as the disease itself, or the caregivers. As a result, there is a paucity of research differentiating and focusing on access to support from health and social care services.

However Brodaty et al, (2005) focused their study on caregivers for people with dementia and found that there are four main reasons for poor access and uptake of support service. The reasons were: disinclination to use the services, the services are viewed as not required, the characteristic of the services and absence of information about the services. According to their conclusion, the care givers felt that they did not need the support because they had enough. They viewed the caring as their duty to their loved ones. Some felt they could use the services but they were either expensive or scarcely available. Another research done by Funk et al, (2010) based on barriers to support for caregivers taking care of someone that is at the end of life highlighted similar reasons for low uptake of social care service support. Past negative experience with the services and belief of poor quality of service were other added reasons based on their findings. Other than sense of duty and responsibility to the person, beliefs about family care as well as culture were also cited as major factors determining access or uptake of care services.

The reasons for not accessing health and social care service may generally be pertinent to caregivers in general; regardless of the health condition they are dealing with, however, for the caregivers from the minority ethnic group, the situation is likely to be compounded (Williams, 2010). The minority ethnic groups have the possibility of suffering poverty as well as ill-health. Their cultural correctness of the service, language differences, and cultural concept of duty can also influence uptake of service (William & Johnson, 2010). Their added disadvantages include racism and inequality.

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The minority ethnic group caregivers may have more need of the social care services than the white caregivers (Guinta et al, 2004). However, many available evidences suggest that chances of taking formal services by the caregivers from the minority ethnic groups are very minimal compared to their fellow whites (Dilworth-Anderson et al, 2002).

Based on the evidence by Carers UK (2011), minority ethnic groups suffer more ill-health as compared to the majority group and thus need more care. The minority ethnic caregivers in the UK based on the findings by Yeandle et al, (2007), are more likely attest to lack of knowledge of the services, or agree that the services were insensitive to their needs. They could also say that the uses of the services were restricted due to lack of information, flexibility and cost. After studying 116 articles, Pinquart and Sörensen (2005) concluded that the minority ethnic caregivers compared with the white caregivers were of lower socioeconomic status, younger and were barely likely to be spouse. Nonetheless, Pinquart and colleague found that minority ethnic group had stronger familial obligation beliefs and gave more care than the white care givers.

Beliefs as well as cultural values are probable in influencing the perspective of care-giving. They can have bearing on access of service and the ability of family members to adopt the role of caring (Giunta et al, 2004). The notion of duty has also been highlighted in research due to its importance to accessing and up-taking care services, as derived from religious beliefs in certain Asian groups (Ahmed & Rees-Jones 2008).

Existing literature has highlighted several factors that may contribute to poor access and uptake of care services among dementia patients from the Black and minority ethnic groups. Broadly, these factors are related to cultural norms, stigma, and other factors that generally affect the health and social care system (Janevic & Connell, 2011).

A majority of existing literature has discussed Stigma surrounds as a mental health issues for the black and minority ethnic community which offer a stronger barrier for underrepresentation in the services for dementia (Mukadam et al, 2010). However, Mukadam et al (2010) were not able to pinpoint exactly the origin of stigma – whether it originates from specific religious beliefs, cultural perception or from both. Nonetheless, a common view was that stigma originates from the fear of being perceived negatively in the community.

According a study conducted by Jones et al (2006) in the United States that involved different ethnic communities, it emerged that that many people do not seek the help of the mental health services during a cognitive decline because of fear of being isolated in the community – as a result of the stigma and shame. Furthermore, discrimination within the community has proven to be a force preventing many individuals from seeking dementia health services (Ortiz & Fitten, 2000).

In a recent review carried out in 2013 a new approach to ethnicity on dementia care was established. Ideally, the approach focused on religion –specific perspective. Notably, there were only two past literatures that had approached the topic in similar way (i.e. Lekoff et al., 1999, and sun et al 2008). According to Regan`s findings, religion can impact upon the dementia care pathway for the Christian ethnic minorities, on decision to seek dementia care and use of its facilities (Regan et al, 2013). Some of the identified impacts of religion in dealing with dementia involved praying to the “Good Lord” to cope with the condition (Levkoff et al, 1999). Besides, having strong faith was pointed out to be a negative association with the uptake of in-home services. Women who frequently prayed and attended services were less likely to use the in-home services as compared to those that attended less church services (Sun et al, 2008).

Misconception of etiology of dementia condition was also identified in Mukadam et al (2010) review. The disease was not seen as a neurological decline but as God`s will or part of Gods forming plan (Bowes & Wilkinson, 2003). This notion had negative impact as the necessary treatment was not acquired or the patient accepted the illness but did not go for treatment as they view it as a way of interfering with the plan of God. In these situations, the medical attention was sought only when the dementia reached crisis stage and the family members were unable to cope with some of the behavioral manifestation (Jett, 2006).

There is limited research evaluating satisfactory with social care. There is significant difference between hospitals and social care services in ways such as service provision location as well as intervention aims. The locations are hospitals and community-based or home services respectively. Intervention aims are in terms of clinical treatment or care and support. The main focus and concerns here are of social care as they are associated with overall concept of access to and satisfaction with services. In the early research on service evaluation, many concerns arose about notion of service satisfaction and its measurements. Some of the issues raised included the notion vagueness, trouble with its definition, the user and customer model (Qureshi & Rowlands, 2004), measures of global satisfaction and consistency in high rating of satisfaction (Williams et al, 1990). According to researchers, the method used in investigating the satisfaction highlights its difference.

Qualitative evaluation provides an in-depth insight with lower satisfaction that a quantitate research. Some researchers have suggested the use of composite measurement method while others have suggested that the use of impersonal methods for instance, mailed questionnaires results to lower satisfaction as well as criticism of services (Crow et al, 2002). Through a systematic literature review approach, the proposed study will identify, highlight and differentiate various research evidences from both qualitative and quantitative research that have examined the notion of satisfaction, and how it relates access or uptake of care services by dementia patients and their caregivers.

3.0 Research Aim

Ultimately, the main aim of the proposed study is to systematically review existing literary material that help in identifying factors that promote or hinder black and minority ethnic communities in accessing dementia services. The study will seek to achieve and answer the following objectives and questions respectively:

3.1 Research Objectives

To examine the Prevalence of dementia and black and minority ethnic communities in the UK

To explore the factors promoting or hindering access to dementia services in the UK

To explore the impact of living with dementia for the individual and their family/carer in the UK

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

3.2 Research Questions

What is the prevalence of dementia among black and minority ethnic groups in the UK?

What factors promote or hinder access to dementia services in the UK?

What are the impacts of dementia on the lives of UK dementia patients and their family or caregivers?

How do government policies and legislation address the issue of dementia in ethnic minority communities in the UK?

This research topic is also of particular interest for me due to my experience as a case manager in the NHS. During my daily practice, I encounter both caregivers and dementia patients who are not able to access quality care as a result of one or more factors related their ethnicity. I have also noted a trend in our data revealing a higher percentage of dementia white patients coming for regular medical check-ups compared to patients from the BAME community. My interest to conduct this study is therefore intrigued partly by my experience as an employee of NHS and as a student who would like to bring solutions to problems of practice.

3.3 Justification of the Study

Dementia may present itself in varied symptoms, but Olenrewaju et al (2015) noted that victims may experience poor visual capacity, poor memory, poor reasoning and judgment, or poor communication ability. When the victim develops poor memory, they are rendered unable to remember appointments, prepare meals or even pay bills (Yeandle et al, 2007). Accessibility to dementia care services is therefore important in assisting the victim to live a normal life, or at least manage to keep up with their daily routines. This study is therefore of particular importance because it examines the factors that may hinder or promote the accessibility of care services among BAME dementia patients. Upon identifying these factors, the study will propose various solutions to the hindering factors, while proposing various ideas towards improving the factors enhance care accessibility for the target group.

4.0 Study Methodology

Research Methodological Approach

There are two main research methodologies that a researcher is likely to adopt when conducting research i.e. secondary and primary research. According to Neale (2009), a primary research methodology entails the carrying out of an original study which uses first-hand data from respondents or target population to answer the research question. On the other hand, a secondary research approach entails the use of already existing data (i.e. documents that analyse, interpret, discuss or report primary research) to answer the research question (Fink, 2014). According to Namey (2015), a major advantage of primary research is that it depends on current information and therefore it may produce reliable information. On the flipside, secondary research approach s disadvantageous in the sense that it relies on information that might be out-dated, thus producing inaccurate results (Bryman, 2016).

Nonetheless, the proposed study aims to achieve its objectives through the secondary research approach – a narrative literature review. Secondary research approach has been identified as the most appropriate methodological approach for this study because it enables the gathering of data on a much larger scale than primary research could allow, especially considering that the area of study (i.e. access to health dementia health services among the BAME) has been widely researched (Harrison & Bostford, 2015). Moreover, given the short timeline available for the proposed study, secondary research would be the most appropriate because it relies on already gathered data, which is quicker to collect.

Bell (2014) defines narrative literature review (NLR) method as a secondary research method that involves the collection and analysis of data from a range of existing literature materials that address the same issue. It is a methodology that synthesises already published literature on a particular research topic to provide an up-to-date evidence for practice. Hence, narrative reviews are useful in developing guidelines for practice because it entails an evaluation and a review of existing literary materials, through the use of explicit methods, to clearly identify, select and appraise the literary material – before analysing and interpreting the evidence presented therein to develop a conclusion over the phenomenon under investigation (Fink, 2014). Literature by Denscombe (2012) reveals that narrative reviews are conducted for three major reasons namely: to identify the existing research gap in the currently existing research, to conduct a summary of currently existing evidence, and to develop an appropriate framework for aligning emerging research evidence on a particular topic of study.

According to Neale (2009), a major advantage of the narrative literature review is that it helps in providing a complete and exhaustive summary of currently existing research evidence in cases where evidence-based conclusions are necessary. Besides, Guest & Namey (2015) contend that NLR is a good study methodology to apply when identifying or developing effective and well-informed economic, social or health interventions. More importantly, according to Guest & Namey (2015), NLR entails the use of already available data and therefore, like any other forms of secondary research, NLR enables a cost-effective collection of data. To this end, NLR is a reliable method of achieving research objectives through both qualitative and quantitative data that leads to a transparent and comprehensive interpretation of the research questions to solve the research problem at hand (Bryman, 2016). Against this backdrop, the study will adopt a narrative literature review approach to identify the factors that promote or hinder the black and minority communities from accessing dementia care services.

Contrariwise, there are several disadvantages of narrative literature review methodology that the proposed study will have to come into terms with. For instance, Goertz & Mahoney (2012) say that the researcher is only limited to the already available data, and therefore the conclusions made from this data may be unreliable. Besides, Bell (2014) comments that while conducting a narrative literature review, the researcher might use literary materials with publication bias as a result of the decisions made by peer-reviewers or journal editors. However, as will be explained later in the proposed study, the researcher intends to take various measures to ensure that these disadvantages do not affect the quality of the study outcomes.

4.1 Literature Search Strategy

The study will use a systematic method of gathering literary evidence that is relevant to the topic under investigation. According to Bell (2014), a systematic gathering of research evidence enables a transparent and easy to duplicate results. The literature search will be conducted through a detailed process which begins with identification of the literary material, then to screening, identification of the materials’ eligibility, and finally an inclusion of eligible studies for review based on an established inclusion/exclusion criteria. Besides, the study will use various electronic databases and search engines such as CINAHL, MEDLINE, Proquest, and Embase. A major advantage of electronic databases is that they enable an easier retrieval of journal articles through the use of keywords, as compared to a physical search of literature from a library (Denscombe, 2012). Importantly though, these online databases were selected as the most appropriate for the proposed study due to their relevance to medicine and nursing research, and the fact that they contain a wide range of literary material useful in gathering scientific evidence in nursing and medicine research topics (Fink, 2014).

4.2 Keywords

The keywords to be used in the research will be selected by making a reference to existing research on the topic. It is expected that the following terms will be identified:

i. Home care services, social work, voluntary workers, social support, community care, voluntary sector, voluntary service, social service

ii. Culture, minority groups, ethnic groups, African descent, European descent, Asian minority, ethnic community, ethnic population, black African, Black, Pakistani, Asian, Indian, British, Caribbean

iii. Caregiver, family caregiver

iv. Consumer satisfaction, service satisfaction, access, quality care, experience

In order to conduct a comprehensive literature search, the keywords will be customised and combined using the MeSH (Medical Subject Headings) to develop various subheadings that can help in retrieving relevant literature materials. Besides, Bell (2014) points out that MeSH enables the researcher to link keywords with already predetermined subheadings it easier to retrieve journal articles.

4.3 Boolean Operators

Boolean operators (i.e. AND and OR) will be used to ease the literature search process by organising the keywords. The main reason for the use of Boolean operators is to incorporate precision, sensitivity, and specificity into the search process so that quality and relevant research articles can be obtained. For example, OR will be used to broaden the search by including connected or similar keywords e.g. social work OR Community care. On the other hand, AND will be used to narrow the search process by combining unrelated words such as caregiver AND Quality Care. The following table illustrates how the Boolean operators will be combined with key-words to facilitate the search:

4.4 Inclusion/Exclusion Criteria

Neale (2009) argues that inclusion/exclusion criteria are useful in determining the relevance and scope of the literature search. The following table illustrates the inclusion criteria for the proposed study and the justification for each criterion:

4.5 Data Extraction

There will be an independent extraction of data from each material. In doing so, the following information will be of keen interest:

• Author name • Setting/location of the investigation • Year of investigation • Sample size • Main findings • Study conclusions

4.6 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. Critical appraisal is especially important for literature review because there is a need to ensure that the only quality evidence is gathered from the wide range of literary articles that may have been retrieved and that the collected data is relevant to the existing research question (Fink, 2014). During the process of critical appraisal, the researcher intends to measure the strengths and weaknesses of each selected journal article.

To critically appraise the literary material, the researcher intends to use the Critical Appraisal Skills Program (CASP) tool, which identifies the credibility and relevance of the collected research evidence (Bell, 2014). Ideally, the CASP comprises of a checklist with 10 questions that are broken down in three major sections identifying:

i. What are the results? ii. Are the results valid? iii. Will the results be of benefit locally?

By answering the above-mentioned questions, the researcher will be able to examine the relevance, credibility, and rigour of the selected journal articles to enhance and promote the usefulness of the data to inform evidence-based practice. The critical appraisal process will adopt a yes or no policy for all the selected literary materials. All the studies that do not score a yes in any of the tool’s main questions will not be included in the study – to ensure that the included studies have a verifiable credibility and validity and applicability.

4.7 Ethical Considerations

Being a secondary research, the proposed study will not seek any ethical approval beforehand. However, throughout the study, the researcher will endeavour to make certain ethical considerations including:

Plagiarism will not be tolerated- this will be of top priority. To avoid plagiarism, the researcher will conduct in text citation and compile a list of reference to acknowledge the authors whose work has been referred to. Data will not be used in a manner that damages or cause distress

References

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