Dementia Stigma in UK Minority Communities

Introduction

Dementia is referred to a chronic or progressive syndrome in which individual’s experiences deterioration in cognitive function of the brain. It results to negatively affect the memory, behaviour, thinking, learning capacity, language and individual’s ability to execute everyday activities. The presence of the disease is overwhelming for the people affected by it as well as the family. In the UK, it is regarded as that 1 in 14 people of the age over 65 years are affected by dementia and in 2015 the total number of dementia patients in the country was estimated to be 850,000 people (alzheimers.org.uk, 2014; dementiastatistics.org, 2015). In the minority communities present in the country it is found that many of them are prone to get affected by dementia more than the white individuals. They are also found to have less access to healthcare activities to resolve the disease due to lack of proper awareness regarding the disorder and their negative cultural as well as social stigma regarding the disease. In this context, the study has been developed to identify the cultural and social stigma regarding dementia among the minority communicates in the UK and their access to healthcare activities. The identification of the information is made in this study to understand the way they are creating healthcare challenges and the strategies to be developed to resolve them to ensure effective healthcare to the dementia patients in the minority communities in the UK.

Background of the study

Dementia impacts each person in a different way and is regarded as broader category of brain disease which creates a long-term effect in decreasing the thinking ability of the individual disrupting their efficiency to execute daily routine activities (Livingston et al. 2017). In the early stage of dementia, the onset of the symptoms is gradual such as forgetfulness, becoming lost in known places and losing time track. In the middle stage, the symptoms include forgetful of recent events and familiar names, getting lost at home, difficulty in making communication, requiring personal care and experiencing chances in behaviour. In the last stage of dementia, the symptoms include difficulty with making mobility, unable to recognise familiar people, requiring self-care and others (Satizabal et al. 2016). The progress of dementia is similar among both the minority and white individuals in the UK. However, the key issue faced is the barriers in healthcare due to cultural and negative stigma of the disease among the minority communities within the UK.

The minority communities in the UK include South Asia, African, Black British, Black Asians and others (minorityrights.org, 2019). The individuals in these communities are seen to have various cultural and social stigmas regarding dementia compared to white individuals that result them to face hindrance in accessing proper healthcare. This is evident as one of their common cultural thinking is that dementia is a coming of age disease and not a mental disorder that cannot be cured or managed in anyway (scie.org.uk, 2018). This perception leads the minority communities to avoid accessing proper healthcare regarding dementia making the individual suffering from the disorder face deteriorated health condition. In the study of Regan (2016), it is reported that Muslims in the minority communities in the UK perceives dementia as a supernatural effect created by god on humans as a nature of punishment for their wrong deeds in life. Thus, accessing healthcare in this aspect is useless as it would mean defying the rules created by the god.

In another study Kapadia et al. (2015), it is reported that South Asians in minority communities of the UK feels that exposing the individuals of the family having dementia in the society would hinder their image in the social surroundings. This is because having individuals in the family with dementia is regarded as a shameful act and often they are isolated from society. Thus, this condition has often seen to lead the minority communities in the UK discuss or trying to access healthcare for dementia making the individuals suffer and experienced deteriorated health condition. As mentioned by Pham et al. (2018), individuals suffering from dementia in minority communities are often regarded as vulnerable individuals in society. This is because the individuals show unnecessary anger and frustration at times and this makes others in the society to fear them, in turn, making them isolate the person from the community. It results the individual suffering from dementia in these communities face hindrance to access proper care at the right time.

The reports published by Bristol, UK informs that percentage of people of minority communities in the UK accessing healthcare for dementia include 38% Pakistani, 33% Chinese, 53% Caribbean, 39% Indians and others. The average percentage of individuals in the minority communities of the UK who are accessing healthcare for dementia is 47% (bristolhealthpartners.org.uk, 2017). This indicates that wide number of individuals in these communities are not accessing proper healthcare for dementia due to their cultural and social stigma. In relation to this, exploring the topic is important to my field of practice as identifying which key cultural and social stigma of the minority communities in the UK is hindering their healthcare access for dementia would help in identifying strategies to be developed to overcome them. Moreover, it would also help to inform about the way awareness in these minority communities in the UK regarding dementia are to be established so that they are successful to resolve the negative stigma and improve health of the individuals.

Rationale of the study

Dementia is referred as disease of the elderly and is seen to be present mostly among people above the age of 65 years but it is not to be regarded as normal part of ageing (who.int, 2019). In the UK, by 2051 it is reported that total number of elderly population among minority communities in the UK is expected to rise by 3.8 million (ageuk.org.uk, 2019). This indicates huge increase in the aged population is seen to be among these communities informing increased prevalence of dementia is expected to be seen among them which makes it a prime health issue to be considered. The report developed by the Alzheimer Society in the UK informs that 3% of the total people suffering from dementia which amount to 25,000 individuals belong from minority communities (South Asian, African, and others) in the UK (theguardian.com, 2015). In the study of Pham et al. (2018), it is informed that out of 66,083 individuals surveyed in the UK for dementia, 480 were identified to be South Asian, 315 were identified as African and 177 were found to belong from other minority groups in the UK who were suffering from dementia. These statistics reveal that major number of individuals suffering from dementia in the UK belong from minority communities.

The identification of dementia for the minority communities in the UK has become an issue because the number of affected people is reported to grow exponentially. This is evident as the report by the Alzheimer Society informs that the present figure of dementia affected individuals among the minority communities in the UK is expected to rise by 50,000 people in 2026 and more than 172,000 people in 2051 (publichealthmatters.blog.gov.uk, 2016). This indicates that dementia is going to become one of the major health issues among the minority communities in the UK in the coming years. The reports also inform that compared to white women the diagnosis of dementia is 18% lower in Asian women and 25% higher among black women. In comparison to white men, diagnosis of dementia is 12% lower among Asian men and 28% higher among black men (independent.co.uk, 2018). The statics indicates that black men and women compared to other minority individuals in the UK are more prone to get affected by dementia making it to be considered as key health issue as it is going to deteriorate the health condition of the community.

The problem of dementia among the UK minority communities has presently become an issue because their cultural and social stigmas are seen to be creating barriers for them to access healthcare. This has result the communities to suffer from increased incidence of the disease and have lower diagnosis rate compared to the white individuals. It is evident from the report by the Health Improvement Network where it is mentioned that 42% of black men are reported to be diagnosed with dementia compared to 53% of white men in 2015 out of all the people having dementia in the UK (Pham et al. 2018). Thus, the facts indicate that effective awareness regarding dementia is required to be brought among the minority groups in the UK so that their negative cultural and social stigma regarding the disease can be controlled. Therefore, this study is important as it is going to focus on to identify the cultural and social stigmas of minority communities in the UK that is hindering their access to proper healthcare, in turn, assisting individuals to arrange better strategies to resolve those stigma to improve their health.

Aim

The aim of the study is to determine the cultural and social stigmas of minority communities in the UK regarding dementia and its impact on their healthcare access.

Objectives

To identify the concept regarding dementia among the minority communities within the UK

To analyse the impact of cultural and social stigma regarding dementia on the health of minority communities in the UK

To critically evaluate the challenges faced due to social and cultural stigma in accessing healthcare by the minority communities in the UK

To recommend strategies for resolving issues due to social and cultural stigma regarding accessing healthcare for dementia by the minority communities in the UK

Methodology

Methodological Approach

The primary research approach is the methodology that is used by the researchers for collecting data directly compared to depending on gathering information from previous researches (Yardley et al. 2015). This means that in primary research the data is collected is raw in nature. However, secondary research approach is referred to the methodology in which the researcher uses existing information and data that are to be summarised and collated for increasing the overall effectiveness of the study (Lam et al. 2016). This indicates that the information collected in this nature of approach is retrieved from previous studies. In this study, the secondary research approach is to be used.

The secondary research approach helps to collect relevant and readily available data from various existing valid researches compared to primary research approach in which the data has to be collected from scratch and where relevance cannot be ensured (Spiranovic et al. 2016). In addition, secondary research is less time time-consuming and least expensive in nature as the data are found to be easily available (Barwise et al. 2019). In contrast, primary research approach is often time-consuming and single nature of primary research method may not be always useful to collect proper data, in turn, increases the total time required to conduct the data (Yardley et al. 2015). Thus, the secondary research strategy will be used over primary research method in this study. The limitation of secondary research strategy is that it hinders the credibility and authenticity of the study as stigma of the researcher may influence the interpreted results (Tierney et al. 2016). The limitation of the study will be avoided by the researcher by including another researcher to analyse the data collected to ensure they are presented authentically without any influence from the researcher.

Literature Search

The electronic search database helps the researcher to explore and retrieve current evidence that is intricately related to the raised questions in the study. It is also effective for the researcher to develop comparison between wide number of data found in different books and journals to present the information in a critical manner (Wang et al. 2017). Thus, the literature search for this study will be conducted by using variety of relevant electronic databases such as MEDLINE (medical literature), CINAHL (Cumulative Index of Nursing and Allied Health Literature), Cochrane Library (Cochrane Database of Systematic Reviews and Database of Abstracts of Reviews of Effects (DARE), Google Scholar and others. The appropriate search terms will be used for identifying relevant articles, journals, books and others related to be studied in the electronic databases. The search terms that will be used are: “social and cultural stigma”, “minority community in the UK”, “dementia in minority community”, “access of dementia healthcare” and others.

Inclusion and Exclusion criteria

The inclusion criteria focus on the characteristics or factors that are to be included in the study whereas exclusion criteria focus on the factors that are disqualified in the study (Demaerschalk et al. 2016). The criteria are required to be considered in secondary research approach so that improved searches for the information can be made to present updated information in a critical way in the study. In this study, the inclusion criteria will include characteristics such as papers and journals written in English with dates of publication not before than 2013, fully-accessible articles, the cultural and social stigma of minority communities regarding dementia in the UK, the government published articles and journals which are academic in nature. The exclusion criteria will involve articles that are written in languages other than English, non-academic and non-governmental data and papers published before 2013. The information is mentioned to be collected from journals that are published within the last five years because it will help the researcher to gather most updated information regarding the cultural and social stigma presently existing in the minority communities regarding dementia in the UK. The information gathered is confined be in language written in English because it can data are written and presented in English can be easily understood and is the particular language known by the researcher.

Data Extraction

The data to be extracted from the existing articles and journals will be done through independent extraction method. This means all the data mentioned in the journals and articles may they be qualitative or quantitative in nature is to be explored and presented. In addition, the information will also be collected by identifying the topic of the study, year of publication, data analysis, discussion as well as key findings.

Ethical Consideration

The ethical considerations in the study are to be maintained by following the guidance mentioned in the Data Protection Act 1998. The Act informs that no data is to be shared without prior permission of the owner (legislation.gov.uk, 1998). According to it, informed consent from the researchers will be taken by contacting them directly and informing them as per the way information mentioned in their articles will be used in the study. In case where the researcher cannot be contacted, the information taken will be referenced properly with their names. The beneficence in the study will be managed by ensuring that no personal data of the researchers or any participants mentioned in the studies are used. The privacy and confidentiality in the study will be maintained by not disclosing any personal information of the researchers or participants mentioned in the paper while executing the study.

Reflection

The critical analysis of the experience faced during designing of this study informs that I have proper ability to examine and explore a certain topic to understand which target population are to be focussed on the research question. I also have effective knowledge regarding the way to present a topic and has ability to identify key reasons due to which the topic to be discussed is important in my field of practice. I also understood I have proper knowledge regarding the way to maintain ethical issues and avoid biases in the study.

In the study, I have identified that I lack proper knowledge regarding the way a better-focused background of the study is to be developed. Moreover, I understood that I failed to focus on the social and cultural aspects present within white individual in the UK that may be also affecting their access to healthcare for dementia. I also failed to create comparison between white and minority communities in the UK regarding healthcare access for dementia to understand to what extent each of them is affected and suffering from lack of healthcare access. In addition, I failed to identify what other aspects apart from social and cultural stigma is bothering care services for the disease in the minority communities in the UK.

In future, I am going to develop better research ability to draw in vital information for developing a better background of the study. I have also planned to improve my focus in executing future studies so that I can analyse the way a health problem is bother all nature of individuals and communities within the country. Moreover, in my next studies, I am going to focus on other factors such as economic, political and technological apart from social and cultural factors to understand the way they are contributing in deteriorated healthcare access regarding dementia for all communities in the UK.

References

Demaerschalk, B.M., Kleindorfer, D.O., Adeoye, O.M., Demchuk, A.M., Fugate, J.E., Grotta, J.C., Khalessi, A.A., Levy, E.I., Palesch, Y.Y., Prabhakaran, S. and Saposnik, G., 2016. Scientific rationale for the inclusion and exclusion criteria for intravenous alteplase in acute ischemic stroke: a statement for healthcare professionals from the American Heart Association/American Stroke Association. Stroke, 47(2), pp.581-641.

Hastings, C. and Fisher, C.A., 2014. Searching for proof: Creating and using an actionable PICO question. Nursing management, 45(8), pp.9-12.

Kapadia, D., Brooks, H.L., Nazroo, J. and Tranmer, M., 2015. Pakistani women's use of mental health services and the role of social networks: a systematic review of quantitative and qualitative research. Health & social care in the community. 30(4), pp.345-356.

Korstjens, I. and Moser, A., 2017. Series: Practical guidance to qualitative research. Part 2: Context, research questions and designs. European Journal of General Practice, 23(1), pp.274-279.

Lam, C.A., Sherbourne, C., Tang, L., Belin, T.R., Williams, P., Young-Brinn, A., Miranda, J. and Wells, K.B., 2016. The impact of community engagement on health, social, and utilization outcomes in depressed, impoverished populations: secondary findings from a randomized trial. The Journal of the American Board of Family Medicine, 29(3), pp.325-338.

Livingston, G., Sommerlad, A., Orgeta, V., Costafreda, S.G., Huntley, J., Ames, D., Ballard, C., Banerjee, S., Burns, A., Cohen-Mansfield, J. and Cooper, C., 2017. Dementia prevention, intervention, and care. The Lancet, 390(10113), pp.2673-2734.

Regan, J.L., 2016. Ethnic minority, young onset, rare dementia type, depression: A case study of a Muslim male accessing UK dementia health and social care services. Dementia, 15(4), pp.702-720.

Satizabal, C.L., Beiser, A.S., Chouraki, V., Chêne, G., Dufouil, C. and Seshadri, S., 2016. Incidence of dementia over three decades in the Framingham Heart Study. New England Journal of Medicine, 374(6), pp.523-532.

Spiranovic, C., Matthews, A., Scanlan, J. and Kirkby, K.C., 2016. Increasing knowledge of mental illness through secondary research of electronic health records: opportunities and challenges. Advances in Mental Health, 14(1), pp.14-25.

Tierney, E., McEvoy, R., O'Reilly‐de Brún, M., de Brún, T., Okonkwo, E., Rooney, M., Dowrick, C., Rogers, A. and MacFarlane, A., 2016. A critical analysis of the implementation of service user involvement in primary care research and health service development using normalization process theory. Health Expectations, 19(3), pp.501-515.

Wang, M., Cyhaniuk, A., Cooper, D.L. and Iyer, N.N., 2017. Identification of patients with congenital hemophilia in a large electronic health record database. Journal of blood medicine, 8, p.131.

Yardley, L., Morrison, L., Bradbury, K. and Muller, I., 2015. The person-based approach to intervention development: application to digital health-related behavior change interventions. Journal of medical Internet research, 17(1), p.e30.