3.1.1 Stigma associated with dementia

and any relevant article was included in the literature review regardless of its publication date. Articles that were published in English were only included in the search. The keywords used for the literature search were "migrants," "cultural barrier," and "dementia support program," and these search terms were used to explore the cultural barriers faced by migrants in order to access dementia support programs. "Immigrants," "refugees," and "new comers" were also used within the keyword set as migrated population contains immigrants, newcomers, and refugee subgroups. Both "dementia" and "Alzheimer" research related to support programs and care designed for dementia and Alzheimer's disease are often comparable in nature and content, and frequently these two words were used interchangeably. Research regarding both support programs and care services are included in the literature review to encompass all types of barriers faced in regard to access to dementia care and support programs. Research conducted on populations including persons living with dementia, informal and formal caregivers (such as nurses, personal support workers, and other service providers), and dementia program facilitators and coordinators were included in the literature review. Research about barriers to equitable access among certain subgroups such as indigenous people was excluded from this review. Despite the diverse cultural background of indigenous

Redirecting Alzheimer Strategy - Tracing Memory Loss to Self Pathology

An extensive search of the literature was performed using the University of Ontario Institute of Technology (UOIT) library databases, including the PubMed databases and Wiley Library. The search strategy was consistent for every database and was based on the predetermined set of inclusion and exclusion criteria. Only full-text papers published in peer-reviewed journals and proceedings were selected for further review. Editorials, letters, and conceptual papers were excluded. All papers that addressed the keywords and search terms that were relevant to the research topic of interest were retrieved, regardless of their study design.

A total of 4451 research publications resulted from the keyword search from both databases which included peer-reviewed journal articles, eBooks/books, dissertations/thesis, and book chapters. Abstracts that were identified to be relevant to the research question were kept, and full-text papers were retrieved for further review. In the absence of an abstract, full-text papers were retrieved and reviewed for prospective inclusion. Reference lists of selected papers were examined to identify other relevant articles. There were a total of 15 articles included in the final data analysis using a thematic analysis method based on its relevance and the scope of research for data extraction purposes. The data extraction details about these 15 articles are presented in Appendix A. The findings were analyzed and synthesized to identify common themes, methodologies, and research gaps. In addition to the scholarly literature, gray literature found in credible websites were used to obtain information and findings such as statistical data, current approaches, and recommendations from the Alzheimer Society of Canada, Alzheimer's Society of the

Analysis of the existing literature that explored the underlying factors associated

with the access to dementia support programs among migrant and refugee

population, this subgroup is not considered migrants.

2.2 Search strategy and data analysis

United Kingdom, and Statistics Canada.

3.1 Key findings from literature review

3. Results and discussion

108

The most common and impactful factor associated with the access to dementia support programs among migrants was stigma. The Alzheimer's Society of Ireland (2008) reported on two types of stigma, one as external, indicating stigma toward the person by community members, and the other as internal, indicating perceived feelings of shame about themselves that they are "less of a person" because of the symptoms of dementia [16]. Stigma affects the individual with dementia, which includes but is not limited to willingness to seek diagnosis and to seek support once diagnosed and a lack of willingness to participate in research [16]. In some cases, stigma about mental health impairments such as dementia was so deeply rooted that individuals and family members would deny to "recognize the illness" [17]. Data obtained from persons with dementia and family members reported that stigma often prevented them from seeking necessary information or support as "people would gossip about you if something went wrong" and "people don't want to get branded as odd or weird" [17].

In South Asian culture, mental health impairments including dementia are associated with perceived stigma toward the individual and their family members. A great deal of stigma appears to be associated with mental illness in such cultures where open discussion of a relative's mental health issues could cause the family to be stigmatized, with a reduced social standing that could affect later generations, such as interfering with marriage arrangements [15]. South Asian migrants thus appeared to be engaged in "concealment" as a mechanism to protect the reputation of the person with dementia and reputation of their family [15, 18]. The most common explanation for not using any support services among informal caregivers was that seeking support from outside agencies "put an already precarious balance between shame and inner pride in jeopardy" [18]. In Eastern European cultures, stigma associated with dementia also reinforces the tendency to "keep it in the family" instead of seeking support [18] as "going public" about having a family member with dementia is linked with a perceived fear of inviting condemnation from others in the community [18]. This reinforces the behavior of informal caregivers around providing support alone instead of seeking help from social and community support networks.

Persons with dementia were also identified to be vulnerable to experience stigma associated with chronic and severe mental illness, such as schizophrenia, because they shared a set of similar behavioral symptoms including depression, delusions, hallucinations, and agitation. For instance, researchers from Hong Kong outlined the social consequences of stigma associated with mental illness among Asian culture [19]. Lee and colleagues identified that concealment and anticipated stigmatization had a significant impact on non-compliance with care-seeking behavior. Persons with dementia and their family members attempted to hide their diagnosis from the community and forbid further interaction between the person with the illness and community members in the attempt to hide any shameful incidence [19]. Among Asian Americans such as Chinese and Vietnamese, shame and "loss of face" were identified to contribute to stigmatization associated with dementia [20] where shame was triggered by public display of abnormal behavior. Concealment was adopted to deflect such situations [21], resulting in delays and nonadherence to acquiring external care and support.

#### 3.1.2 Culturally preferred coping strategies

Culturally preferred coping strategies were most prominent in South Asian immigrants and refugees where this specific characteristic reflected the ascribed stigma as discussed above. In fact, religion and culturally preferred coping strategies were identified to be particularly important within South Asian communities, opposed to the value of understanding symptom management and access to available resources, which is observed more in other ethnic minority groups [15]. South Asian subgroups appear to place high value on family where providing care for a family member is associated with the perception of responsibility toward their loved ones. In some South Asian cultures, "caring" was identified to be a religious obligation regardless of the religion, where caring was perceived as "duty" or a way of "gaining blessings" or "repaying" the person with dementia for previous acts of kindness [18]. Thus, South Asians have been reported to prefer providing care for a family member with a mental illness rather than seeking medical care, social care, or community support and assistance [15], leading to reduced engagement in dementia support programs or other social/medical care supports. Some South Asian subgroups were observed to use "faith" as an alternative coping strategy where faith is perceived to be associated with enhancing mental resilience and alleviation of stress experienced by persons with mental illnesses such as dementia and their caregivers [15]. Meditation and prayers were identified as tools used in religiously preferred coping strategies. The ideology of "caring" was also observed among Asian American migrants in addition to South Asian migrants. A study conducted on Korean immigrants with dementia revealed a concept of "Korean way of thinking," where caring for ill elderly in the family is considered a responsibility and is associated with "saving face" [22].

deterioration in dementia [20], reinforcing the lack of understanding regarding the

An Examination of Factors Influencing Equitable Access to Dementia Care and Support…

Evidence from South Asian subgroups residing in England has identified that people from South Asian culture may recognize the symptoms associated with dementia but not conceptualize these as part of an illness even when they are severe [17], leading to the idea that individual and family efforts are sufficient to ameliorate dementia-related symptoms. Research conducted on South Asian families recognizes a generalized picture of aging that exists in South Asian culture where it is perceived that aging changes older people into an "intolerant and worrying" group and aging makes people "difficult and angry" [17]. Many dementiarelated symptoms such as confusion, becoming quiet and sad, feelings of isolation and loneliness, and other mental health impairments are often viewed as "negative" aspects of normal aging [17, 24] in South Asian families. This leads to the conceptualization of not viewing dementia as an illness and therefore creating a barrier to

accessing the external resources that support living well with dementia.

acts as an obstacle to accessing dementia support programs.

earlier in life or the first language [26, 28].

111

3.1.4 Language barrier

Another common misconception that exists in many different cultures is the lack of understanding on the causation of dementia. Dementia is often perceived as a mental illness by certain South Asian groups who are especially sensitive to traditional, religious, and spiritual explanations of the nature and causation of dementia [18]. Many South Asian cultures lack a defined vocabulary to interpret the word "dementia"; thus cases of dementia are often classified as a mental illness [15, 18]. Many individuals from South Asian cultures residing in the United Kingdom classify dementia as "madness" as the meaning of dementia is nonexistent in the vocabulary of South Asian languages [23]. In such cases, family members and the community at large frequently use concealment for avoiding rejection, which

Language barrier was a significant factor leading to the reduced access to dementia support programs and services. Current literature revealed that migrants and refugees who do not speak the language of the host country might be at a greater disadvantage in accessing the health-care system [23], making the individual with a lack of language proficiency more vulnerable to inequitable access to dementia support services. Language difficulties often appear in Alzheimer's disease and other neurodegenerative dementias with word-finding difficulties, decreased verbal fluency, or difficulties with naming and comprehension, which are particularly prominent among bilingual individuals [26]. Older bilinguals often revert to a single language despite a lifetime of dual language use, losing the ability to speak the second language [26]. This issue is particularly prominent among migrants and refugees with dementia who lose their ability to speak their second languages, which is often the language of their host country, leading to difficulty in communicating with the health-care professionals and service providers [27]. Bilingual individuals with dementia are frequently observed to be inclined to asymmetrical language impairment with preferential preservation and the use of the first acquired language [28], which can be inferred among individuals that have migrated to a foreign country that speaks a different language than one's country of emigration. Moreover, recently learned information is retained the least in the case of dementia, whereas information and memory that are more remote are often relatively preserved, leading to a regression toward the predominant use of the language learnt

Evidence obtained from the study of immigrants in Sweden suggested that immigrants with dementia noticeably preferred music and television programs that

necessity of accessing dementia support programs.

DOI: http://dx.doi.org/10.5772/intechopen.84858

The concept of "acculturation" also appears as an important concept in terms of implications for support services among migrants. Acculturation varied depending on the length of stay in a migrated country and historical time of migration [22, 23]. Adoption of a foreign culture appears to be a selective process where fundamental values and beliefs appear to stay unchanged after immigration [22]. A study conducted on Korean immigrants in America indicated that those who migrated recently are more "Americanized" than those that migrated a long time ago and tend to preserve their traditional beliefs [22]. Failure to adopt the foreign culture can lead to the preservation of conventional norms and methods of practice in one's culture when dealing with chronic diseases, such as dementia.

#### 3.1.3 Misconception regarding aging and Dementia

"Normalization" of functional and cognitive decline among older adult populations is observed to be a vastly shared belief in many cultures. Studies reveal that populations from ethnic minorities are less likely to recognize symptoms of dementia as an illness than Caucasian individuals, perceiving such symptoms as part of the aging process [24]. Normalization is observed among Asians, African-Caribbeans, and Hispanic Americans where dementia symptoms such as memory loss, disorientation, and loss of functional abilities were recognized but not conceptualized as an illness [25]. In Asian culture, dementia related to changes such as confusion is often normalized and expected as part of the aging process [20]. A majority of the common symptoms of dementia are interpreted as "age-related cognitive and functional change." Symptoms such as "memory failure" or "confusion" are considered normal among "very old" members of the family. Interviews conducted on subgroups originating from Chinese and Vietnamese cultures identified a culturally shaped metaphor that emphasized holism and the inevitability of

#### An Examination of Factors Influencing Equitable Access to Dementia Care and Support… DOI: http://dx.doi.org/10.5772/intechopen.84858

deterioration in dementia [20], reinforcing the lack of understanding regarding the necessity of accessing dementia support programs.

Evidence from South Asian subgroups residing in England has identified that people from South Asian culture may recognize the symptoms associated with dementia but not conceptualize these as part of an illness even when they are severe [17], leading to the idea that individual and family efforts are sufficient to ameliorate dementia-related symptoms. Research conducted on South Asian families recognizes a generalized picture of aging that exists in South Asian culture where it is perceived that aging changes older people into an "intolerant and worrying" group and aging makes people "difficult and angry" [17]. Many dementiarelated symptoms such as confusion, becoming quiet and sad, feelings of isolation and loneliness, and other mental health impairments are often viewed as "negative" aspects of normal aging [17, 24] in South Asian families. This leads to the conceptualization of not viewing dementia as an illness and therefore creating a barrier to accessing the external resources that support living well with dementia.

Another common misconception that exists in many different cultures is the lack of understanding on the causation of dementia. Dementia is often perceived as a mental illness by certain South Asian groups who are especially sensitive to traditional, religious, and spiritual explanations of the nature and causation of dementia [18]. Many South Asian cultures lack a defined vocabulary to interpret the word "dementia"; thus cases of dementia are often classified as a mental illness [15, 18]. Many individuals from South Asian cultures residing in the United Kingdom classify dementia as "madness" as the meaning of dementia is nonexistent in the vocabulary of South Asian languages [23]. In such cases, family members and the community at large frequently use concealment for avoiding rejection, which acts as an obstacle to accessing dementia support programs.

#### 3.1.4 Language barrier

3.1.2 Culturally preferred coping strategies

Redirecting Alzheimer Strategy - Tracing Memory Loss to Self Pathology

and is associated with "saving face" [22].

culture when dealing with chronic diseases, such as dementia.

"Normalization" of functional and cognitive decline among older adult populations is observed to be a vastly shared belief in many cultures. Studies reveal that populations from ethnic minorities are less likely to recognize symptoms of dementia as an illness than Caucasian individuals, perceiving such symptoms as part of the aging process [24]. Normalization is observed among Asians, African-Caribbeans, and Hispanic Americans where dementia symptoms such as memory loss, disorientation, and loss of functional abilities were recognized but not conceptualized as an illness [25]. In Asian culture, dementia related to changes such as confusion is often normalized and expected as part of the aging process [20]. A majority of the common symptoms of dementia are interpreted as "age-related cognitive and functional change." Symptoms such as "memory failure" or "confusion" are considered normal among "very old" members of the family. Interviews conducted on subgroups originating from Chinese and Vietnamese cultures identified a culturally shaped metaphor that emphasized holism and the inevitability of

3.1.3 Misconception regarding aging and Dementia

110

Culturally preferred coping strategies were most prominent in South Asian immigrants and refugees where this specific characteristic reflected the ascribed stigma as discussed above. In fact, religion and culturally preferred coping strategies were identified to be particularly important within South Asian communities, opposed to the value of understanding symptom management and access to available resources, which is observed more in other ethnic minority groups [15]. South Asian subgroups appear to place high value on family where providing care for a family member is associated with the perception of responsibility toward their loved ones. In some South Asian cultures, "caring" was identified to be a religious obligation regardless of the religion, where caring was perceived as "duty" or a way of "gaining blessings" or "repaying" the person with dementia for previous acts of kindness [18]. Thus, South Asians have been reported to prefer providing care for a family member with a mental illness rather than seeking medical care, social care, or community support and assistance [15], leading to reduced engagement in dementia support programs or other social/medical care supports. Some South Asian subgroups were observed to use "faith" as an alternative coping strategy where faith is perceived to be associated with enhancing mental resilience and alleviation of stress experienced by persons with mental illnesses such as dementia and their caregivers [15]. Meditation and prayers were identified as tools used in religiously preferred coping strategies. The ideology of "caring" was also observed among Asian American migrants in addition to South Asian migrants. A study conducted on Korean immigrants with dementia revealed a concept of "Korean way of thinking," where caring for ill elderly in the family is considered a responsibility

The concept of "acculturation" also appears as an important concept in terms of implications for support services among migrants. Acculturation varied depending on the length of stay in a migrated country and historical time of migration [22, 23]. Adoption of a foreign culture appears to be a selective process where fundamental values and beliefs appear to stay unchanged after immigration [22]. A study conducted on Korean immigrants in America indicated that those who migrated recently are more "Americanized" than those that migrated a long time ago and tend to preserve their traditional beliefs [22]. Failure to adopt the foreign culture can lead to the preservation of conventional norms and methods of practice in one's

Language barrier was a significant factor leading to the reduced access to dementia support programs and services. Current literature revealed that migrants and refugees who do not speak the language of the host country might be at a greater disadvantage in accessing the health-care system [23], making the individual with a lack of language proficiency more vulnerable to inequitable access to dementia support services. Language difficulties often appear in Alzheimer's disease and other neurodegenerative dementias with word-finding difficulties, decreased verbal fluency, or difficulties with naming and comprehension, which are particularly prominent among bilingual individuals [26]. Older bilinguals often revert to a single language despite a lifetime of dual language use, losing the ability to speak the second language [26]. This issue is particularly prominent among migrants and refugees with dementia who lose their ability to speak their second languages, which is often the language of their host country, leading to difficulty in communicating with the health-care professionals and service providers [27]. Bilingual individuals with dementia are frequently observed to be inclined to asymmetrical language impairment with preferential preservation and the use of the first acquired language [28], which can be inferred among individuals that have migrated to a foreign country that speaks a different language than one's country of emigration. Moreover, recently learned information is retained the least in the case of dementia, whereas information and memory that are more remote are often relatively preserved, leading to a regression toward the predominant use of the language learnt earlier in life or the first language [26, 28].

Evidence obtained from the study of immigrants in Sweden suggested that immigrants with dementia noticeably preferred music and television programs that had more familiarity, such as programs in their native language [27]. They were also more likely to participate and engage in dementia support programs and services where they could communicate in their native language [23, 26]. Research evidence from Korean Americans with dementia suggested that treatment and intervention programs designed to promote living well with dementia were observed to be more effective when using a familiar language or the native language of the individual [29]. Inability to communicate well in the language of the program due to losing the ability to speak one's second language has been identified as one of the leading issues among individuals with dementia, particularly among those who have migrated from a foreign country with a different language than the host country.

which indicates a change in the composition of the population with an increased cultural diversity [31]. As a result, it is imperative to increase our understanding of the influence of sociocultural factors in relation to equitable access of dementia care and support programs among the Canadian migrants. This knowledge is vital to the future transformation of the existing programs and services, shaping them to be more culturally inclusive for the marginalized, migrated, and refugee populations

An Examination of Factors Influencing Equitable Access to Dementia Care and Support…

All authors provided input into the development of the literature review and

The authors declare that there is no funding support for this project.

Appendix A. Summary of research studies included in the literature

Study purpose Study design Summary of key findings

Robust literature review

• Stigma affects several aspects when considering dementia, including the person's willingness to seek diagnosis, to seek support once diagnosed, and a lack of willingness to participate in research • Caregiver stigma has been explored often but very little on the stigma as experienced directly by people with dementia

The authors declare that they have no competing interests.

in Canada.

Funding

Competing interests

Author's contributions

Not applicable.

Author (date)

Swaffer K (2014)

113

have read and approved this manuscript.

DOI: http://dx.doi.org/10.5772/intechopen.84858

review

Exploring the language being used to represent people with dementia, and the presence of stigma to identify if presence of stigma toward people with dementia aggravates the stigma or prevents the timely translation of good research into better practice

Ethical approval and consent to participate
