|Tags:||Asia, BPSD, Dementia, India, Pakistan|
|Date published:||05 Sep 2018|
This part intends to comprehend the South Asian Indian and Pakistani people group understanding of dementia. This report will be comprehended as far as how socio social variables, for example, power, notoriety, and family structure, demeanour and the distinctions in diverse in the indications of dementia, social character, ethnic personality, and ethnic qualities may impact the experience of the individual with dementia. In a wide range, the section looks to see how institutional societies and practices, wellbeing strategies and ethnic-social qualities affect usage of analysis and bolster administrations of dementia inside an ethnically assorted group particularly those that hail from South Asia.
Due to constrains involved in researching about dementia, the study on experiences of South Asians will be used world wide in understanding the condition. On that note, the study will investigate the ethnic minority that is knowledgeable about living with dementia. It will help in determining the experience of minority gathering that is influenced with dementia being a minority in a minority aggregate. Latly, the report will analyse the writing on the South Asian, Indian, Pakistan and United Kingdom people that experience dementia.
Global Perspective of the Universal Experience of Living with Dementia
An extensive number and a growing one of the specialists has begun to account the experience of individuals influenced by dementia over the previous decade. Wang et al., (2009) research intend to inspect the impacts of dementia on influenced people’s feeling of personality. The outline on thorough subjective meetings with individuals living with dementia, inconspicuous pressure has been accounted for in regards to how people feel about themselves being a similar individual. Wang et al., (2009) reported how individuals with dementia through self-stories depict a feeling of individual character.
Amir, et al., (2009) contends that individuals with dementia effectively participate in self-conservation, utilizing diverse methodologies, for example, composing update notes, staying away from intense circumstances, depending on others for help, and keeping up an uplifting mentality. Notwithstanding, the viability of these methodologies is yet to be ordinary, yet research is starting to rise that is examining how these discernments and adapting styles mindfulness change after some time.
Wang et al., (2009) insinuated that individuals with dementia build self during each time’s conduct, outlining the hub of domains subjective commonality and intelligent setting. This research by Wang highlights the basic significance of the part of a questioner in dementia research and practice. Apart from Wang’s et al, (2009) study, other studies from researchers such as Amir et al., (2009) have started to take singular individual connections into setting while investigating how specific encounters of the sickness are moulded (Amir, et al., 2009). Additionally look into proposed that individuals who live with gentle to direct dementia experienced the feeling of significant misfortune that is related with the vibe their capacities are coming up short them. Kachru, (2015) recommended that individuals with dementia report that they are backing off, that words and thought appear to be ease back to come, and they regularly need to stop and consider how to convey best what needs be. Their bodies move with dithering, exercises that had once been simple and smooth streaming now require cautious consideration and unequivocal exertion, with the outcome that everyday living appears to be full of troubles. The world does not sound good to them and, therefore, it is troublesome for individuals influenced with dementia to have a say and be liberal.
Kyle, (2011) found out that as dementia advances those with the ailment report that their body has turned out to be quiet without action, which results in vacancy as the individual turns out to be less required on the planet bodily. Be that as it may, this idea of a man with dementia as having vanished and vacancy might be therefore of relatives’ vulnerability in staying aware of the changing identity of the patient. The conditions related to the strains of dealing with the individual patient with dementia result in families who have room schedule-wise to watch identity changes that may jump out at a relative or the enthusiastic vitality.
The contribution in the realm of pragmatic action is constantly coordinated toward some important objective, which advances the body. According to Takai et al., (2011) the body can lose this feeling of a bearing even as it keeps on being dynamic and included. In mellow to direct phases of dementia, as movement turns out to be messy, the concentration movements and it appears that the body is losing its course and can’t without much of a stretch discover its way through the action. In spite of the fact that these literary works provide incredible understanding into what it involves to live with dementia, notwithstanding, thought should be made when depending on these written works which are over ten years old. Similarly as with new worldwide approaches and systems rising for dementia, which anticipates propelling the personal satisfaction for dementia individuals by planning administrations from the acumen of individuals with dementia and not their guardian or relative keeping in mind the end goal to direct early finding, which will be examined in more detail later in this section.
The study by Erol et al, (2016) investigates wheteher the family parent figures understand the experience of individuals suffering from late phases of dementia through involvement of the patients. The examination does not make the regular presumption that the individual giving consideration is frail and the individual accepting consideration hold all the power. Erol et al., (2016) contend that the approach concentrate this power adjusts insufficient as they attempt to comprehend this from the point of view of ‘force for’ one individual over another, as opposed to coordinating force (Erol et al., 2016)
Power in relation to dementia
Sampson, (2016) argues that the people with dementia should be awarded their status of the citizen which is a much powerful status than a status of the patient. In general, the person with dementia should not be viewed in terms of their illness rather, they should be perceived as an individual who can express their wishes. Boyle, (2011) suggest that the key element of discrimination against people with dementia is that they are perceived to be incapable of expressing themselves and grow from this, due to their neurological disorder. They further argue that this discrimination exists in public health issues (Boyle, 2011). Therefore, dementia services and research should adopt a personhood approach. However, personhood approach does not take into consideration the political agencies that may be interested in adopting this model which is why this approach has had no influence in the field of law (Sampson, 2016).
Walsh and Carney, (2016) argue that the political protest by people with dementia in suggest that they can express themselves as responses to the powerlessness. Therefore, it is important to including the subjective experience of people with dementia in dementia research and practice, and not to rely on caregivers aspects of the relationship, which narrows the understanding of dementia (Walsh, & Carney, 2016). Previous research into dementia has focused primarily on the caregivers or family perspective on the experience of dementia. This has resulted in the assumption that the person with dementia personality and identity steadily wear away until none of the people remained (Walsh, & Carney, 2016). These researches have been used by service developers and policy makers to develop evidence-based practice for individuals with dementia from the standpoint of family members or caregiver which affects the experience of people with dementia.
Towards A More Globally Inclusive Dementia Services and Research
The research has mainly focused on pathology, behavior management and diagnosis of people living with dementia these days (Piguet et al., 2011). Results from few studies have shown that only a few people have recorded personal experiences with dementia (Piguet et al., 2011). Although, research for over a decade have reported that people living with dementia can in a meaningful respond actively to open-ended questions as well as participate in qualitative studies (Sampson, 2016). Furthermore, Piguet et al., (2011) reported that only the person living with cognitive disorders show declined symptoms that could describe its quality of life, which also applies to those living with dementia. They argued that only people with mild to moderate dementia can define their eminence of life and tell stories; concerns over misunderstanding, confabulation, and memory fluctuations should not be an issue when a person’s experience and interpretations of reality are honoured and acknowledged. Due to the perception of people with dementia as ‘empty shells’ many researchers have failed to include their perspective.
However, emergegence of global policies, and stragies on how to deal with demential in healthcare, it is hoped new research will include subjective experience of dementia patients from onset to late steges of the condition. Currently, people with dementia are getting involved in all aspects of research and service development. Besides, patients are involved in promoting and developing improved diagnostic appreacohes to help in promotion of lasting solutions current and future patients, (McKeown et al., 2010).
Few substantial studies have scrutinized the experience of people suffering from the condition despite the increase in recognition of the importance of people’s voice (Brayne, & Davis, 2012). As the research indicates, the focus is only directed to the experiences of people who are in early in the early stages of dementia and when those in the later stage of dementia included it is in quantitative studies. Thus, there is limited in empathetic of the experiences of people with more progressive stages of dementia from a qualitative perspective; this has limited the opportunities to observe how the experience individuals with dementia changes over time McKeown et al., 2010). This limitation shows the importance of an intricate understanding of subjectivity in dementia and provides an opportunity to have a clear understanding of the familiarity with malady in line with illness.
Furthermore, heterogeneity has been used to undersand dementia from the illness trajectory dimension. Hence, there is a need to examine the methods in which distinctiveness, crisscrosses race, gender, and culture in fabricating particular experience, especially from an ethnic standpoint as this has a greater impact (Ellison et al., 2014). Researchers have argued that there is a need for research that seeks to understand the composite interpretation of subjectivity and intersects socio-cultural sphere of inquiry (Ellison et al., 2014). It will be imperative because, it will help in avoiding the access of poor services to older people from minority ethnic groups. Therefore, the experience of an ethnic minority living with dementia and to what extended or how social and cultural factors discussed above, which may influence their experience.
Understanding the Experience of Dementia from an Ethnic Standpoint
Despite older people from minority ethnic groups having more consultation and general practice registration, they, however, get low contact rates with dementia services (Cooper et al., 2013). The health policy has been blamed for the less number of people in dementia services from the minority groups (Cooper et al., 2013). This inequality in access to dementia service by an ethnic minority group is still a significant concern for policy makers since the implications for shoddier consequences in dementia treatment amongst ethnic lesser groups (Cooper et al., 2013). There is a global and national appeal to promote equal dementia services regarding the minority groups so as to ensure the access of services to same potential health benefits for everyone (Cooper et al., 2013). In response, the UK government has recommended a special memory service for indigenous groups and ensuring that the services offered are ethnically targeted and appropriate (Cooper et al., 2013).
Socio-Cultural Factors Influencing Personal Decisions To Access Dementia Services
Dementia-related behaviour and psychological symptoms of dementia (BPSD) are reported to happen in most of the people with the condition (Cerejeira, et al., 2012). However, the level of dementia-related BPSD is higher in older adults from ethnic minority (EM) group as they are like to seek initial evaluation for dementia at the much-advanced stage of the illness in contrast to the white population (Knight and Sayegh, 2013). However, only a few studies such as Cerejeira, et al., (2012) have discovered evidence of multi-ethnic dissimilarities in the overall stages of this illness-related to BPSD. In contrast, Knight and Sayegh, (2013) study failed to find a significant difference between ethnic groups and dementia-related BPSD. However, they did report that at the time of diagnosis, individuals with EM had higher callous levels of the illness-related problems such as wandering, problems with daily activities, depression, and physical aggression.
Furthermore, analysis of covariance by Knight and Sayegh, (2013) never found a significant effect of education and socio-economic status (SES) on dementia-related problems amongst ethnic groups when compared to the white population. Knight and Sayegh, (2013) argued that SES is a related factor that is known to have an effect on greater stages of BPSD at the time of early evaluation and that over-representation of this group could be attributed to unanticipated results. However, further analysis suggests revealed that power and socioculturalism are statistically sufficiently enough to show cause and effect of demential existed (Knight and Sayegh, 2013). It was also discovered to be unsuccessful in finding a noteworthy association between ethnic group variances and the total amount of BPSD during their evaluation of people with dementia (Knight and Sayegh, 2013). Clearly, evidence of cultural variances in dementia-related illness as a whole is questionable.
However, cross-ethnic modifications in related BPSD and explored specific forms of BPSD have suggested strong evidence that specific patterns such as anger, peripatetic, hallucinations, and calling attention from their caregiver are common amongst ethnic groups unlike in the white population (Cerejeira, et al., 2012). Individuals from ME groups seeking dementia assessment at an advanced stage of the disease process may experience more impairment in specific patterns regarding dementia-related
BPSD and cognitive ability than the white population.
This has been supported by (Knight and Sayegh, 2013) reported that the nurses of people who have Alzheimer’s Disease (AD) reported a delay of seven years from the time they first noticed the symptoms of AD to the point at which they sought an evaluation by a physician. Similar finding echoes from Knight and Sayegh, (2013) study, however, the generalizability of the study is questionable as the group involved in their research was very small. Knight and Sayegh, (2013) reported that no significant difference between the ethnic minority (EM) and white population when access to dementia diagnosis service. Knight and Sayegh, (2013) argued that this is due to high level of acculturation amongst the sample of participants. Contributors with an elevated level of acculturation are disposed to participate in research studies.
Knight and Sayegh, (2013) informed that the level of acculturation might be associated with a delayed dementia diagnosis. Acculturation shapes individual experiences regarding diagnosis, treatment, and care for dementia, which may influence inequalities in diagnoses. Knight and Sayegh, (2013) reported that amongst their sample of caregivers, a lower score on the acculturation survey was linked with a less positive attitude toward dementia treatment. Knight and Sayegh, (2013) argued that the lower level of acculturation may affect EM groups’ perception and awareness regarding dementia. Knight and Sayegh, (2013) found a significant correlation between the perception of barriers involved in the diagnostic assessment of dementia and the duration of time waited before attaining an evaluation. Therefore, the role of acculturation should be acknowledged in research as an important adaptable with regards to dementia awareness and care-seeking behaviour (Knight and Sayegh, 2013)
However, Wang, (2012) argues that the lower level of acculturation shapes the perception and knowledge of dementia based on the culturally associated beliefs and values assigned to dementia by ethnic minorities. This may influence the level and type of help the EM group will seek to address the problem. Sayegh supports this, and Knight (2013) who stated that even after regulating for education level, dementia caregivers from Asian, African, and Hispanic families’ still conceptualized dementia in a way that is different from the biomedical model. Therefore, it is important to understand the cultural meanings, beliefs, and values associated with dementia which is the aim of the research to be explored as they can delay diagnosis and result in further suffering for people with dementia from EM groups (Knight and Sayegh, 2013).
However, Burgener et al., (2015) stated that the stigma and shame associated with dementia are the most document factor which is reported to be a barrier to accessing to service by EM group, which need to be evaluated. Knight and Sayegh, (2013) argued that Asian caregivers perceive that it is shameful to have a family member with dementia as they flop to maintain social associations in a socially expected behavior. Although this may be outdated literature, similar finding echoes Kahn et al., (2016) study that dementia creates stigma in Chinese families. It suggests that a person is unbalanced and undisciplined, which is supported by Luchsinger et al., (2015) study investigating Hispanic American caregivers.
Luchsinger et al., (2015) argued that stigma and shame may serve as a significant barrier in the context of collective family-centred cultural values when trying to understand delayed dementia diagnosis in EM groups. They suggested that this is due to family members choosing to keep dementia-related problems and symptoms private and within the family unit due to the embarrassment and shame they will bring. Therefore, families seek guidance from informal sources, making formal evaluation a last resort. The study concluded that feelings of shame are utmost related with delayed diagnosis. Knight and Sayegh, (2013) study found that people from EM groups tend to gain the disease’s diagnosis as a result of an emergency rather than in a scheduled way.
In contrast, Luchsinger et al., (2015) argued that shame and stigma can be due to a lack of knowledge about dementia as patients try to figure it out the aspects of their health problems based solely on what they know which later affect the decision of seeking help from professions. However, culture does affect the individuals’ knowledge regarding medical problems. Knight and Sayegh, (2013) suggested that postponement of help-seeking by certain EM groups is due to lack of information about dementia. Hence, these groups are inclined to rely on their ethnically-based ideas and views about dementia (Knight and Sayegh, 2013).
Burgener et al., (2015) found that a major barrier to dementia diagnosis amongst EM groups is the interpretation that memory lapse is usually a normal part of aging. Numerous studies have found that, compared to their white counterparts, EM caregivers are more disposed to believe that declining memory is a common part of aging. Luchsinger et al., (2015) asserts that in a qualitative study of African-American family caregivers discovered that almost half of the sample initially considered cognitive change a normal part of aging in their relatives, including gradual changes in personality and behaviour and a decline in mental abilities. Knight and Sayegh, (2013) argued that the common barriers to dementia evaluation are due to the widespread belief that memory loss is due to normal aging. Similarly, a recent study involving an Asian Indian sample found that this group also attributes the symptoms of dementia to normal aging (Knight and Sayegh, 2013). These verdicts suggest that personal beliefs about some slighter cognitive changes may be viewed as a common part of aging amongst many EM groups. This may delay help-seeking by family members, which results in further suffering for the person with dementia (Knight and Sayegh, 2013).
Furthermore, in the initial levels of dementia, when the cognitive and behaviour indicators are mild, ME groups perceive this as a normal part of aging. However, when symptoms progress they may view the person with dementia as insane/cursed (Knight and Sayegh, 2013). Delayed diagnosis or help-seeking amongst minority groups is due to culturally affiliated beliefs that emphasize perception of dementia as insanity rather than a neurodegenerative disorder. More recent studies have found that Chinese, African, and Asian caregivers attribute dementia to “craziness” and observe this as insanity or a disaster to stay mentally active (Knight and Sayegh, 2013). These findings could be meaningful for the aims of the present research because if a person with dementia or their family members does not have an understanding of dementia, this could result in delayed diagnosis. Furthermore, as the disease progresses, the person with dementia will suffer further due to cultural associations of dementia symptoms with insanity, which could be occurring in Blackburn with Darwen.
Burgener et al., (2015) argued that this negative belief and perception of dementia and its symptoms is due to being misinformed about dementia which acts as an obstacle to delayed diagnosis. Knight and Sayegh, (2013) revealed that caregivers of Hispanic descent have limited information and knowledge about diagnosis, treatment, and services for AD. Furthermore, African-American cultures believe that the cause of AD is aluminum and that medications to reduce exposure to this will reduce the risk of developing the disease (Knight and Sayegh, 2013). A large-scale study by Knight and Sayegh, (2013) found that caregivers from EM groups, e.g., Chinese and Hispanic, were considerably less knowledgeable about the cause and epidemiology of dementia than the white population.
In general, individuals from EM and lower social-economic backgrounds have insufficient knowledge on dementia. Knight and Sayegh, (2013) argued that lack of information can delay help-seeking and diagnosis for dementia as it shapes an alternative interpretation, explanation, and meaning of the illness. However, unlike culturally associated beliefs—shame and stigma—cross-ethnic differences in the knowledge of dementia are associated with differences in language proficiency and education (Knight and Sayegh, 2013). This study could be relevant to the present research because the research aim is to discover the needs and experiences of people with this illness from South Asian groups and, as dementia affects a majority of older adults, there will be many first-generation migrants for whom English may not be their first language. The research will address this statement by asking participants to divulge detailed information to explore whether education level and lower SES have an effect on access to and utilization of dementia services.
It is evident that there is a wide array of barriers faced by individual EM groups, with some extra challenges to modify through appropriate intercessions than others (Knight and Sayegh, 2013). Therefore, in an expansive, systematic review, Sayegh and Knight (2013) suggested that to alter or reduce the barriers faced by individuals from EM groups, there is a need for more research between and within ethnic minority groups. They emphasized the need for more research into the issue of accessibility and utilization of dementia services by Asian-Pacific Islanders (API), which were defined as Asians originating from the India and the Far East, Southeast Asia, Hawaii, Samoa, Guam, and other Pacific islands. However, they argue that this subgroup (API) within wider ethnic groups needs to be surveyed independently in research rather than compiling them into larger ethnic groupings as they are heterogeneous groups with different languages, clothing, and other major cultural influences.
Burgener et al., (2015) suggested that South Asian minority groups are more at jeopardy of stroke and, while other maladies related to hypertension are known to affect individuals from South Asian and Caribbean populations, South Asian populations have higher rates of diabetes than other populations. This accounts for two of the chief causes of vascular dementia, which is the most known type of the disease in South Asia (Knight and Sayegh, 2013). They argued that vascular dementia is among the rare types of dementia for which therapy features exist.
Furthermore, Mittal et al., (2014) argued that dementia can be treated only if the illness is detected early. Therefore, it is imperative to know dementia’s signs within families for early identification; thus, communicate with health services is pivotal for understanding the nature of the illness and maintaining a good, healthy, and caring environment for the person affected Mittal et al., (2014). However, there has a lack of interest in understanding dementia in members of South Asian populations or their family members and caregivers; subsequently, decisions to access and utilize dementia services are affected. Therefore, the research will explore this further as this could be on-going in Blackburn with Darwen.
South Asian Population Experience of Dementia
Census 2011 reported that the British South Asian inhabitants this includes people of Pakistani, India and Bangladeshi origin living in the UK, has increased from 3.9% of the total population in 2001 to 5.3% in 2011, which will continue to grow (Mittal et al, 2014). Therefore, as the numbers of people from South Asian population increases so will the occurrence of dementia in this group, as they show an elevated number of diabetes patients than the general population of UK (Mittal et al., 2014).
Despite this, South Asian population continue to underutilize dementia services compared to other EM groups (Mittal et al., 2014). Given that South Asian populations could be in need of dementia services, the prevailing literature in the UK shows that the South Asian communities have little access to the dementia services and other related psychological illness. Therefore, this report seeks to understand the cultural understanding of dementia by South Asian communities and the experiences of suffering from dementia and their views concerning the dementia services.
Cultural knowledge of dementia in communities from South Asia
The upsurge in the number of people suffering from the psychological illness in South Asian communities in the UK means there is a threat in existence of senior citizens and their loved ones in this marginal population will be greatly affected; however, it is unclear of how they understand dementia (Doody et al. 2015). It is worth noticing that South Asian culture comprehends no equivalent word for the word dementia and uses a translation of dementia symptoms instead (Doody et al. 2015). Mittal et al., (2014) revealed South Asian is less inclined to be aware of the terms dementia and AD than African-Caribbean groups and white British even though the recruited contestants had been detected with dementia (Mittal et al., 2014). They concluded that the suffering of dementia depended tremendously on the individual’s knowledge and attitude of the malady. This suggests that the South Asian community does not have an awareness of or has not even heard of dementia before a family member’s diagnosis of the condition (Doody et al., 2015). Following these findings, the research will examine whether people with dementia had prior knowledge of dementia at the time of diagnosis and if the delay in access to dementia services was as a result of not being informed of what possibly causes dementia and the symptoms associated with the illness.
Mittal et al, (2014) described that South Asian scored less on questionnaires when study was being done on different participants. The questions asked were about the knowledge of dementia such as which part of the body is affected, the age most affected by dementia, epidemiology (type, prevalence). The overall dementia knowledge had only 21% identified dementia as an illness involving the brain. A similar finding is echoed in both qualitative and quantitative studies suggesting that low scoring in the understanding epidemiology of dementia was associated with South Asians and high score was attained by Caucasian groups (Doody et al., 2015). Participants from South Asian commonly associated memory impairment with dementia while the Caucasian group understood the symptoms of dementia more thoroughly such that they showed knowledge of personality impairment, cognitive decline, disorientation and the disconnect from. Several themes were recognized from South Asian opinions on the cause of dementia, including that it is a normal part of aging, it increases emotional worry, and it results in reduced social support and physical health deterioration (Mittal et al., 2014). It was noted by the author of the present study that South Asians often mistook physical health distress with diabetes and are unable to differentiate the symptoms (Doody et al., 2015).
Mittal et al., (2014) asserted that people from South Asian associate dementia symptoms as a normal process of aging and decaying. They also think that the decline in social provision and isolation of the elders results to the aging and decaying (Mittal et al., 2014). Doody et al. (2015) discussed the implications arising normal aging vignette and found that South Asian participants believed this to be due to lack of family attention and social support. Mittal et al., (2014) reported that lack of care was often linked with neglect by South Asian family members, especially children not showing enough concern, and conflict arising from ‘modern daughters-in-law’ who were perceived to play a key role in the decline of family support. In South Asian culture, it is custom requires that a daughter-in-law should move into her husband’s family’s home, and one of her roles is to take care of the elderly in the house. This could be meaningful in the present research because this is potentially occurring in Blackburn with Darwen, which may result in limited access to dementia services by the South Asian population. The statement will be explored further during data collection.
Furthermore, the South Asian population is unaware of the treatments accessible for dementia, and there is a common believe in the community that dementia is curable (Doody et al., 2015). The researchers further concluded that South Asian participants in their study were less predisposed to dementia and hence reluctant to seek treatment and thought that taking care of one-self and the help from family members was more important. This study demonstrates an inconsistency in the way South Asian populations view the treatment of dementia (Dewing & Dijk, 2016). Moreover, compared to Caucasians, South Asians have a traditional belief due to cultural reasons that it is a family’s responsibility to care for a person with dementia (Mittal et al., 2014). There is a need for better information about this mental disease in the South Asian community (Dewing & Dijk, 2016).
Experience of living with dementia in South Asian communities
Mittal et al., (2014) argued that the lack of understanding, knowledge, appreciation, and awareness of dementia can result in difficulties in managing the condition, thus having an impact on the lives and suffering of the relatives of those affected by dementia due to late diagnosis. Therefore, in this section review of the literature on the experience of people with dementia from South Asian communities will be explored. Dementia just like any other mental illness is regarded shameful, and there was sense of stigma among the South Asians which affects the perception of seeking help from professions
Mittal et al., (2014) reported that part of the stigma around care for a person with dementia is rooted in a common belief in South Asian communities that the condition is due to on-going pressure between good and wicked. They reported that in a support group, caregivers were blamed by neighbours and relatives for not having enough faith to ward off evil spirits, which impacted negatively on the caregivers’ emotional well-being and thus the well-being of the people who have dementia for which they looked after. South Asian participants in her study also showed concern that having a family member with dementia could be detrimental to marriages. There is a tendency in South Asian communities to hide people with dementia as the disease progresses, resulting in keeping the affected person away from the public. The act of hiding patients is also linked to caregivers’ concerns about being embarrassed by their relatives. These results in delayed diagnosis and further suffering of people with dementia due to family honour and respect (Mittal et al., 2014). The research is supported by Mittal et al., (2014), who found that due to fear and shame, it may result in hiding people suffering from dementia and help may not be sought out. Moreover, it could be meaningful in the present research because this could be happening in Blackburn with Darwen, which may result in limited access to dementia services by the South Asian population. The statement will be explored further during data collection.
Recent research by Dewing & Dijk, (2016) on South Asian caregivers about stigma related to dementia found that it can induce fear to the family such that the individual suffering from dementia may be hidden to protect the family’s reputation as well as that of an individual. La Fontaine et al. found that religious and mystic explanations influenced the way in which caregivers from South Asian communities managed and learned dementia. Mittal et al., (2014) thus suggested that it is not surprising that when exploring participants who have been diagnosed with dementia, the communities in question are less inclined to distinguish the terms of this psychological illness and AD than African-Caribbean groups. Mittal et al., (2014) stated that an individual’s understanding and attitudes regarding dementia influence their experience of dementia. This research will also determine whether shame, stigma, and fear can impact how the South Asians access and utilize the dementia services.
South Asian community experience of engaging with dementia-related services
A lack of knowledge can inhibit the realization of that something is wrong is happening and can defer the implementation of care (Mittal et al., 2014). Furthermore, barriers in health systems such as prejudice and the lack of linguistic or culturally appropriate services can result in further delays or underuse of dementia services (Knight and Sayegh, 2013). Mittal et al., (2014) revealed that when a South Asian population in their sample had consulted healthcare services about their concerns and dementia-related symptoms, health professionals dismissed their concerns and focused on other chronic conditions. These results substantiate Dewing & Dijk, (2016) findings that a Pakistani participant did not receive a dementia diagnosis earlier, with the GP used in the study explaining that they had come across other examples of signs of dementia being housed by families. She suggested that the common misunderstanding amongst this population that dementia is part of aging may be due to lack of understanding which could alternatively reflect racism amongst service providers (Mittal et al., 2014). However, Knight and Sayegh, (2013) found that even when families have the knowledge of dementia, the symptoms are still hard to recognize even though caregivers know something is wrong, a situation that is well researched and stored in the literature on dementia (Dewing & Dijk, 2016).
In general, the communities from South Asian conceptualize this disease three different ways: (i) the result of normal aging, (ii) an act of God, or (iii) a mental disease viewed as shameful (Patel et al., 1998). Knight and Sayegh, (2013) reported on South Asians’ dogmas about the cause of the mental illness as “God’s will,” stating that they were the only contributors across all of the readings in their appraisal to mention this. There are several possible implications of relying on such old literature as the dementia diagnosis pathway has been amended and much newer campaigns have been introduced to improve awareness and understanding of dementia, for example, Friendly Community and Dementia Friends. However, recent studies have revealed that new campaigns to improve sensitization and understanding of dementia in South Asian communities have been introduced, but there are stigma and ignorance, which are common aspects that shape community perceptions about dementia (Knight and Sayegh, 2013).
Dewing & Dijk, (2016) suggested that the family members of people ailing from dementia are inclined to hide their relatives and not seek help for dementia due to the shame and fear associated with the disease in their community, resulting in the negative experience of people who have dementia from communities in South Asia. However, there are barriers in healthcare that present challenges to patients who seek services in the premises. Therefore, there is a need for adequate linguistic and culturally appropriate services for South Asian communities, which will be further explored in this research (Knight and Sayegh, 2013).
However, some subgroups such as Pakistani, Bangladesh, and Sri Lankan have been amalgamated as South Asians, but these subgroups in the UK present different dialects, traditions, and culture (Dewing & Dijk, 2016). Nonetheless, in many types of research works South Asian communities are portrayed as a homogenous group very frequently. Knight and Sayegh, (2013) stated that it is inappropriate how South Asian category has been perceived and considered by research as one group which again it is misleading information. Dewing & Dijk, (2016) argued that research that studies that do not account for heterogeneity within Asian community ought to be disregarded and considered as meaningless information. Knight and Sayegh, (2013) argued that there is very little knowledge concerning the individual’s South Asian groups. South Asians from the different region have diverse cultures, and thus their experiences and situations vary. Dewing & Dijk, (2016), in a qualitative study, found a difference in caregivers’ attitudes toward caring between three different South Asian subgroups which include British Indians, British Bangladeshis, and British Pakistanis. These groups ought to be attended differently when giving care to those suffering from dementia because they all display different cultural practices and beliefs when it comes to ethnicity.
Common understanding of the experience of Indian and Pakistani groups accessing dementia services
Lack of knowledge of dementia
According to recent studies, Indian and Pakistan communities have shown less understanding of dementia. Thus it affects their concern and willingness to seek help from health practitioners. Knight and Sayegh, (2013) found that Pakistani and Indians have shown low levels of awareness concerning dementia and other chronic deteriorating brain syndrome.
For most people, the characteristics of dementia are considered to be part of or a non-pathological deviation from common aging. Dewing & Dijk, (2016) stated that in the Indian community, dementia is constructed as a regular part of aging and is not perceived as requiring medical care. This group perceived that forgetfulness in the elderly is often recognized as a normal variation of aging and most recognized it at a much later stage of dementia (Cerejeira, et al., 2012). Indeed, there is no term in the local language in the Indian community for dementia.
Similarly, Knight and Sayegh, (2013) found that there are no words according to biomedical concept that define dementia or directly translate the illness. Asians have associated dementia and cognitive decline as a common disorder that happens when one attains old age. As a result of the changes in old age whether it is dementia symptoms, the family members see as normal changes only attainable during old age. The conclusion was that the perception of Pakistan community about dementia confirms the reason why most of them are relatively absent in diagnostic clinics. This perception of dementia shows set apart how dementia is dealt with from other ailments despite having an accessible health system. The lack of knowledge is recognized as a barrier to accessing supportive services within Indian and Pakistani communities (Cerejeira, et al., 2012). It could be meaningful in the present research as this is potentially occurring in Blackburn with Darwen and may result in limited access to dementia services by the South Asian population.
Stigma related to dementia Knight and Sayegh, (2013) stated that there are theories of causation and objectivity whenever someone has dementia thus the sick are subjected to stigma by just having dementia. On the perceptions is that someone has dementia because they have weak faith or the disease is as a result of hardships present in the environment. Therefore, patients with dementia end up concealing themselves and not seeking medical attention due to the stigma associated with dementia. Cerejeira, et al., (2012 found that there are people who have dementia are subjected to stigma besides shame amongst the Indian community. Knight and Sayegh, (2013) reported that in the Indian community, there is a stigma associated with the psychological and behavioural problems associated dementia. Knight and Sayegh, (2013) found that there was the presence of stigma related to dementia and pursuing help from services offered among British Indians.
Cerejeira, et al., (2012) found that the Pakistani community worried about breaking with tradition beliefs and showed concern of what others may think and this would result to loss of family. According to Pakistani families, taking care of the old folks involves a great investment in emotions and morals something dementia plays out (Knight and Sayegh, 2013). Therefore, it is families who can be first to identify the signs and symptoms of dementia. However, due to stigma and misunderstanding, it has become a hidden illness not visible to the wider community. Thus, the condition exacerbarate social isolation for those affected in Pakistani families and resulting in delayed diagnosis (Cerejeira, et al., 2012). This isolation may result in limited access to dementia services by the Indian and Pakistani communities in Blackburn with Darwen.
Cultural stereotyping and myths
Health professions in the Indian and Pakistani community have highlighted that South Asians do not need extra care since they are well-taken care by family members (Knight and Sayegh, 2013). Therefore it is hard to find patients from these communities accepting the hospital services such as bed riding and stay hospital wards until someone recuperates. However, it is unclear whether the kinship ties and social supports have a positive impact to on the well-being of the dementia patients some. It is, therefore, hard to know if the services offered by caregivers are of help according to some community members (Knight and Sayegh, 2013).
Cerejeira, et al., (2012) suggested that it is important that the South Asian communities reconsider their kinship ties and family beliefs when living in the UK because these believes are likely to be contested since the modern world changes economically socially and therefore family kinship ties may break as one migrates from one area to another (Knight and Sayegh, 2013). For instance, a South Asian may marry someone from another ethnicity with different customs and beliefs, this may, therefore; require the couple to compromise when executing traditional practices and custom beliefs to accommodate one another. These changes may have a negative impact on the Indian and Pakistani community when coping with caregiving found in another new environment. Knight and Sayegh, (2013) found that Gujarati Hindu and Pakistani caregivers were less likely to give support to the people outside their families in the UK and if there was any help it was of low quantity and quantity.
The insufficient service delivery to ME families is believed to be as a result of cultural labeling of Pakistani and Indian communities to be having kinships networks. Consequently, the prejudices and discrimination of the South Asian communities by health professions may make it hard for referrals to secondary services or recommendation to another specialist (Walsh, & Carney, 2016). The findings might give a reason why there are fewer representatives of South Asian communities in dementia services. Others have suggested that mitigation of responsibilities are realized easily due to cultural myths about caregivers and service providers regarding the views of people who have dementia from Indian and Pakistani, which will be further explored in this research (Knight & Sayegh, 2013).