This assignment aims to critically evaluate nurses’ attitudes related to language barriers in the context of communication with people with dementia. Furthermore, a need is felt to reflect on how such attitudes hinder positive practice when communicating with people possessing limited English proficiency and to identify the extent to which nurses take into consideration peoples’ cultures, norms and values. To understand the implications that may arise when professionals display certain attitudes towards people with dementia and limited English language, this assignment will take the form of a reflection which is an important part of nursing practice.
Dementia appears to be a major worldwide concern as figures suggest a rapid increase in the number of people diagnosed with this illness. According to Atkins et al (2012), in 2012 almost 25 million people around the globe were diagnosed with dementia and it is expected that by 2040 this number will almost triple. Moreover, World Health Organization (WHO) in 2017 estimated that almost 47 million people were considered to have dementia and this number will continue to grow (WHO, 2017). These figures imply huge costs for society. In fact, Knapp et al. (2014) suggests that in the UK the cost of dementia rose to £26 billion per year.
Reflective writing. Language Barriers in the Context of Dementia
This assignment aims to critically evaluate nurses’ attitudes related to language barriers in the context of communication with people with dementia. Furthermore, a need is felt to reflect on how such attitudes hinder positive practice when communicating with people possessing limited English proficiency and to identify the extent to which nurses take into consideration peoples’ cultures, norms and values. To understand the implications that may arise when professionals display certain attitudes towards people with dementia and limited English language, this assignment will take the form of a reflection which is an important part of nursing practice.
Mark Wilding (2008) stresses that through reflection students (identifying their lack of skills) have the potential to lead to insecurity in practice. In contrast, the Gibbs model of reflection gives students the opportunity to identify the already acquired skills which can boost confidence and professional autonomy (Hillard, 2006). Additionally, reflection in practice helps the individual not only to comprehend a situation but also to recognise professional development needs and opportunities (NMC, 2015). Therefore, the structure of this essay will be informed by using Gibbs model of reflection as well as using the existing literature in order to attain an in-depth understanding through critical debate.
Dementia appears to be a major worldwide concern as figures suggest a rapid increase in the number of people diagnosed with this illness. According to Atkins et al (2012), in 2012 almost 25 million people around the globe were diagnosed with dementia and it is expected that by 2040 this number will almost triple. Moreover, World Health Organisation (WHO) in 2017 estimated that almost 47 million people were considered to have dementia and this number will continue to grow (WHO, 2017). These figures imply huge costs for society. In fact, Knapp et al. (2014) suggests that in the UK the cost of dementia rose to £26 billion per year.
As ageing is considered a risk factor in developing dementia (Alzheimer’s Society, 2016), it could be that we see an increase of people with dementia from different ethnic communities. This is partly because many people from Black and Minority Ethnic (BME) communities who migrated to the UK in the 1950s–1970s are now reaching the age of 65 and over (NHS Health Scotland, 2015). Substantial evidence reveals that about 25,000 people from different minorities were diagnosed with dementia and is expected that by 2026 this number will double (Social care Institute for Excellence, 2015); (Ahmed, Yates-Bolton and Collier, 2014). Despite the UK spending an enormous amount of money, some people with dementia from different ethnic groups do not receive the care they are entitled to (House of Commons All-Party Parliamentary Group on Dementia, 2013). In fact, in many situations fear of discrimination, stigma associated with different cultures as well as language barriers, hinder access to care (Social Care Institute for Excellence, 2015).
While on placement with the Community Mental Health Team, I was given the opportunity to visit Mrs. Marina (pseudonym), a lady that comes originally from Turkey. Mrs Marina had been diagnosed with Alzheimer’s Disease (Picks disease) and was referred by her GP due to concerns related to changes in her behaviour and personality, accompanied with language difficulties and isolating herself from others. During the visit it became clear that Mrs Marina was not able to express herself, presenting difficulties in communicating in English. Although communication was clearly a barrier in assessing Marina, the health professional attempted to continue with the assessment. The reason to continue conducting the assessment was that Marina was earlier known to be able to speak English fluently.
Although Jacobs et al. (2011) stresses that language barrier can prevent individuals from accessing health care, Gill et al. (2011) highlights some of the issues as to why nurses are not using professional interpreters i.e. high cost, time pressure or interpreter’s availability. However, evidence suggests that this may lead to adverse situations such as medical errors, as well as poor health results (Diamond et al., 2009). In fact, NHS trusts across the country reported high spending costs in translation services. In 2011 the cost for such services was estimated to almost £24 million (Ali and Watson, 2017). Additionally, having experience working with older people, I felt there was need to maintain dignity by ensuring that Mrs Marina understood what was discussed.
However, following the visit, I experienced a mixture of feelings; feelings exacerbated by the fact that I work as an interpreter and I am aware of the importance of using interpreters when language is a barrier. Furthermore, I was aware that working with patients in a non-discriminatory way is essential. It was therefore felt that the use of a professional interpreter might have contributed greatly to the outcome of the assessment. This means avoiding miscommunication between professionals and patients, better quality care and consequently the use of interpreters reduces health inequalities (Karliner et al., 2007). Although discrimination denotes that people are treated differently based on their ethnic group, ‘dignity’ has been identified to have a great impact on an individual with dementias’ well-being and affect their quality of life (United Nations Economic Commission for Europe, 2015).
Evaluating the situation, I felt a sense of disappointment as I did not have the courage to challenge the situation. This courage to challenge poor practice has been emphasized by the Department of Health by introducing a set of values in nursing practice ‘6Cs: ‘care, compassion, competence, communication, courage, commitment’ (DH, 2012). In fact, ‘courage’ is a concept that has been discussed since Aristotle’s times (Pears, 1976). In nursing practice, Nursing and Midwifery Council (NMC, 2015) talks about having the courage to challenge and raise awareness as a professional requirement in order to safeguard vulnerable people. Furthermore, disappointment and failure were intensified because having experience as an interpreter, I was aware of the responsibility to report and challenge poor practice, duties that have been set out by the NHS England (2018).
Mrs Marina had been diagnosed with Pick’s disease which is a type of dementia. Although memory loss is identified as a major factor of dementia (Emery, 2000), one of the most challenging aspects of the Pick’s disease is the shortfall of language skills (Martin, Woods and Williams, 2018). Previously Mrs Marina was an active lady, she used to attend social groups and she was confident to engage in English language with others. However, as the illness progressed it appears that she had lost the ability to make use of her English language skills. In fact, evidence suggests that almost 10 percent of people with dementia, from the early stages have difficulties in finding words, reduced fluency and comprehension (Emery, 2000). Furthermore, Hyltenstam & Obler, (1989) highlights that these difficulties are far more complex for bilingual individuals with dementia (as in Marina’s case) as there is a need to maintain fluency in both languages as well as facing the issue of cross-language interference. However, the extent to which one language is affected more than the other is unknown (Stilwell et al. 2015) though circumstantial evidence suggests people with dementia often return to their first language. It is therefore important to acknowledge and recognise the issues that may arise when aiding people with dementia from different backgrounds and take into consideration cultural and ethnic differences (NHS Education for Scotland, 2008).
Since moving to this country, I came to understand that the UK is a multicultural and multilinguistic society. Throughout this experience I learnt that an important aspect when providing care to people with limited English proficiency is ‘clear communication’ between health professionals and the patient (Hadziabdic and Hjelm, 2013). Taking into consideration Mrs Marina’s communication needs, would have improved the outcome of the assessment and in building her trust with the service. In fact, ‘clear communication’ between health care and the patient has been identified an essential part in providing holistic and person-centred care. This means individualised care approaches that takes into consideration each person’s needs (WHO, 2008) with an emphasis on cultural beliefs, and the right to be treated irrespective of their background, race, gender, illness or social status (World Medical Association, 2009).
Furthermore, the inability to accurately convey health information can have an impact on patient safety (Mueler et al., 2015) particularly when delivering information related to treatment, diagnosis and the linked risk factors (Gillotti, 2002), and may lead to patient non-concordance with treatment. However, the challenge in working with older people with cognitive issues is far greater when they come from different cultures and linguistic groups (Lowenstein et al., 1994). It is therefore essential to take into account the communication needs of people with cognitive impairment and use a wide range of skills so as to establish a therapeutic relationship (Jootun and McGhee, 2011). Hence interpreters have an important role in the contact between the patient and the heath care provider (Hadziabdic and Hjelm, 2013). The role of the professional interpreter is far more complex than a translation of what is being said. For example, an inexperienced interpreter might provide inaccurate or an incomplete translation exacerbated by the complex relationship with both the health professional and the patient (Flores, 2005).
Schyve (2007) highlights some of the issues that may arise when language is a barrier. Although through the experience I have as a language interpreter, I was aware of some of these issues (for example, professionals may have difficulties in making a health decisions and patients may face the inability to understand what was communicated), I did not understand the implications of these issues. In a study conducted by Daker-White et al. (2002) it identified delays in dementia diagnosis for people who do not speak the language of their host country and found that some of the assessment tools used to evaluate their cognitive functioning were culturally biased. This represents a real concern as the number of people from different backgrounds is predicted to increase (DH, 2009). To overcome this issue, Hadziabdic (2011) proposes ‘transcultural care’ which means tailoring care according to peoples’ beliefs and values. This assumes a ‘culturally congruent’ care in which health professional and the patient develop or adapt a suitable care plan. Therefore, when assessing patients’ ability to communicate, it is essential to acknowledge that everyone is culturally unique (Department of Health, 2009).
Cultural perception around dementia plays an important role in perceiving the illness as a health problem. In fact, previous records highlight that Mrs Marina did not see her illness as a problem. Despite the National Dementia Strategy Commitment for early diagnosis and implementation of required care plan (DH, 2009), people from ethnic minority groups often do not contact relevant services in the early stages of the illness (Mukadam et al., 2011). As Mrs Marina comes from Turkey originally, I have considered useful to understand how people from this country observe this illness. Evidence suggests that the illness is perceived as a normal ageing process and medical advice and support is sought only in the middle stage when symptoms such as cognitive impairment, hallucinations or agitation are obvious (Lok et al., 2017). Also, Braun et al. (1996) found that some people are more concerned with the social implications such as language barrier, housing, low income and social inclusion as opposed to the illness itself. In many ethnic communities therefore, symptoms of dementia are perceived as a normal ageing process and as such not considered a problem (Naheed et al., 2013). However, perceiving the illness in such manner might be related due to peoples’ lack of knowledge and understanding of the support which is available. This is congruent with the findings of Lindesay et al. (1997) concluding that almost 80 percent of Guajarati native speakers in a Leicester study, were not able to read/write in English and were not aware of the existing health services. Therefore, promoting access to information in the language of the person will ensure public awareness and equality in accessing services (WHO, 2008).
In the same manner, cultural differences are also present within the caregiving role. Although looking after a person with dementia can be emotional, psychological and a physical strain (Lawrence et al., 2008), evidence reveals different experiences between ethnicities (Janevic and M Connell, 2001). For example, in some cultures the role of caregiver is seen as less stressful. ‘ ‘I’m sorry that he has Alzheimers but I’m not sorry for myself that I have to take care of him . . . no, no, no . . . it’s what marriage is for. When you take the oath, you must live by it . . . you have to love, and you have to cherish, and you have to care just the same.’ (Lawrence et al., 2008 pp.241, traditional caregiver ideology, wife)’’. While, in some cultures, the caregiver role is seen as ‘’a source of burden and distress (Zarit, Reever, & Bach-Peterson, 1980)’’ (Knight et al., 2002) in most counties within England, the support carers receive is limited (Jeraj and Butt, 2018).
Despite the fact that NHS England has made good progress in facilitating professional interpreters for limited English speakers (Royal College of Physicians, 2018), Ali (2017) identified low availability of professional interpreters, hence clinicians often depend on relatives to communicate medical information (Mueler et al., 2015). Although in my experience as a healthcare worker I have considered that relatives could be used to interpret for their loved ones, evidence suggests that professionals should be cautious when using relatives in the role of interpreters. This is due to their lack of appropriate training (Farooq, Kingston and Regan, 2015) and because of the relationship between them (Tribe, 2009). Moreover, studies in this area revealed situations where relatives did not ask the patient but instead, they themselves answer interviewer questions (Flores, 2007). It is therefore of obvious importance the use of professional interpreters who are able to understand medical jargon and where possible having knowledge of patients’ culture (DH, 2009). However, even professional interpreters may face difficulties in the process of translation. For example, in many languages, translating ‘dementia’ as a word is almost impossible as there is no such word in their vocabulary (Ahmed, Yates-Bolton and Collier, 2014). Furthermore, interpreting in the mental health context is found to be particularly demanding with the potential of emotional implications due to dealing with patients in distress, maybe aggressive or being affected by their stories (National Institute for Health and Care Excellence, 2011).
One reason as to why Mrs Marina was isolating herself from others could be related to stigma around her illness. Regardless of any diseases, ethnicity or cultural beliefs ‘stigma’ is a well-known concept of debate. In fact, in all cultures, stigma is attached to dementia though the extent and nature are unknown (Ayalon and Arean, 2004). However, one of the causes as to why people are underdiagnosed could be related to ‘stigma’. Literature surrounding stigma gave me an important awareness of how this illness is perceived in the wider population. Reports in the US and in the UK reveal that dementia is considered one of the most feared illnesses. The fear of developing dementia overtakes the fear of other life-threatening illnesses such as cancer or heart disease (Batsch and Mittleman, 2012). Indeed, in the UK, the extent of fear in the population in developing this illness was evidenced in a survey of 2,300 adults. About 55 percent stated that their lives would be over if ever such diagnosed. Additionally, the fear of being a burden was highlighted as a concern for about 67 percent of the surveyed population (Alzheimer’s Society, 2018). These feelings and emotions were also noted in the early stages of people affected by dementia. Depression, anger and frustration, shame or to rather be dead were reported upon after being diagnosed (Riley et al., 2015). Furthermore, as the illness progresses, individuals acknowledge that the illness affects their daily tasks which require adaptation to changes (Harman and Clare, 2006) These consequences could indicate stigma of dementia and can affect self and identity.
Although in the wealthier countries stigma of dementia can lead to isolation, rejection or neglect, I came to identify that in other societies such as Nigeria, dementia can have an extreme impact on individuals leading to violent death or being kept locked away (Alzheimer’s Society, 2016). Moreover, being diagnosed with dementia, ethnic minorities identified the fear of negative attitudes from health professionals (Ahmed, Yates-Bolton and Collier, 2014). Raising dementia awareness and support therefore, is paramount. Internationally governments, agencies and local organisations are working together to reduce stigma by introducing regulations, education programs for health professionals and family carers around dementia, with the aim to eliminate discriminatory practice (Batsch and Mittleman, 2012).
An aspect of great importance is to examine nurses’ attitudes and knowledge towards dementia and how these factors affect quality of care. Early detection and diagnosis of cognitive impairment is essential because this will empower a suitable treatment, enable families to better manage dementia in their home environment, slow the decrement in physical and/or cognitive functioning and improve quality of life (Huang et al., 2013). However, studies have demonstrated that well-being and quality of life in individuals with dementia depends on the nursing staff involved in their care (Kada et al., 2009). Quality of care is therefore influenced by the professional’s knowledge, skills and attitudes related to dementia (Norberg et al., 2006). Richardson et al. (2002) argues that knowledgeable health professionals will also display a positive attitude towards dementia. In contrast, Karlsson et al. (1998) identified that poor knowledge is linked with negative attitudes related to the illness. Moreover, working with this group of people can be quite challenging for inexperienced nursing staff (Fruhauf, Jarrott and Lambert-Shute, 2004). Therefore, in the given case study, it should not be ignored that the health professional may have had poor knowledge around language barrier in dementia as she was in the early years of nursing practice. It is therefore of obvious importance for organisations to provide a care that meet the needs of the diverse population within the UK. To achieve this, there is an emphasis on health professionals to adopt a cultural competence (Murcia and Lopez, 2016). Cultural competence assumes the ability to provide care to people from different cultures and languages including to have knowledge, skills and positive attitudes towards other cultures (Kathryn, 2011).
Much of the health literature talks about diagnosis and treatment of dementia. However, it is paramount that discussions should also take into consideration the social determinants of health disparities. Throughout their lifespan, social and environmental factors as well as access to health have been identified to impact peoples’ cognitive functioning and could increase the risk of dementia (Dekhtyar et al., 2015). Some studies found a correlation between language barrier and health inequalities (Jacobs et al., 2006); (Karliner et al., 2012). Even though evidence highlights an association concerning linguistic barriers and health disparities, more research is needed in this area (Schwei et al., 2016). However, due to language barrier ethnic communities tend to use health services less than their counterparts. (Rechel et al., 2011). Furthermore, when language is a barrier the quality of care and the level of satisfaction for both patient and professional is affected (Ponce et al., 2006).
From this experience, I am now more mindful of the importance of working with people with limited English language. Although within my role as a language interpreter I was aware of the significance to overcome language barriers, through this reflective writing, I came to see the issue from a nursing perspective. Now I understand that simply providing care to patients is not enough. But it is essential to take into consideration all of the aspects within peoples’ lives including their culture, norms and values. This experience helped me to acknowledge that besides the language issues ethnic communities face, they are also exposed to a culturally biased system. In fact, this reflective writing highlighted some of these issues such as culturally biased assessment tools and at times nursing staff providing care based on the culture within the country rather than the culture of each individual. The insight I have gained from this experience and the literature surrounding poor practice has also helped me understand the potential danger patients are exposed to when communication is a barrier. Following this event, I feel much more confident, and ready to challenge poor practice if situations like this arise again. Taking this experience into my future practice, will enable me to work differently. I am now aware that supporting people from different backgrounds requires a person-centred and culturally competent approach.
For future, my goal is to be more proactive when dealing with similar situations, regardless of my role. This includes dealing with patients form ethnic communities, dealing with patients presenting limited English language or bilingual patients who due to their illness might have lost their ability to communicate in English. To enable me to work better with these groups of people, I will make use of the knowledge accumulated from this experience and the literature surrounding this topic. Moreover, I will strive to meet the needs of people from different ethnic communities by ensuring ‘clear communication’ including the use of professional interpreters whenever required. As the literature emphasised the importance of knowledge and positive attitudes towards this client group, another aim is to continue developing my knowledge and skills through independent research on their specific needs. Therefore, to enable me to better deal with similar situations, I will develop an action plan which will comprise of SMART goals (specific, measurable, achievable, realistic and time-based).
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- Zoltan Mursa (Author), 2019, Language Barriers and Dementia. Reflection, Munich, GRIN Verlag, https://www.grin.com/document/958548
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