Course:SOWK551/2021/Dementia Care among Immigrant Older Adults and Their Caregivers
Short Summary
Literature review informing social workers on how they can better support the immigrant older adults living with dementia and their caregivers.
Author: Vanessa Tai
Date: April 6th 2023
Introduction
As Canada's diverse aging population continues to grow, there is an increasing need to address the challenges faced by immigrant older adults living with dementia and their caregivers. According to Statistics Canada (2019), a quarter of adults self-identify as immigrants, with 15 % of them over the age of 65. By 2033, it is estimated that 986,954 Canadian older adults will be living with dementia (Chambers et al., 2016). This literature review aims to explore the dementia care for immigrant older adults and their caregivers, by analyzing relevant literature from Canada and across the globe, including the U.S. and European countries. Through a thematic analysis of the literature, three themes were identified: (1) Barriers to Healthcare, (2) Current Supports and Service Gaps, and (3) Recommendations for Social Work Practice. The purpose of this review is to inform social workers on how they can better support immigrant older adults living with dementia and their caregivers.
Keywords: immigrants, older adults, dementia, caregiving, culture, healthcare, social work
Barriers to Healthcare
Cultural Barriers
Different cultural understandings and perceptions of dementia among immigrants can significantly impact the dementia diagnosis, help-seeking behaviors, service utilization, and caregiving experience. Stigma and shame surrounding dementia can often delay diagnosis and affect caregivers' willingness to seek external support (Liu et al., 2008). For example, some Chinese and Vietnamese families perceive dementia-related behaviors as a threat to Confucian harmony, and some immigrants may prefer to keep their dementia condition private to avoid bringing shame to their families and being stigmatized and discriminated (Biswas et al., 2022; Liu et al., 2008). Additionally, some Asian cultures view dementia symptoms as a part of normal aging, leading to delayed external support seeking (Biswas et al., 2022; Liu et al., 2008).
Furthermore, cultural values of familial obligation and filial piety play a crucial role in dementia caregiving among immigrants. Some Korean immigrants in the U.S. and Canada may view nursing home placement as abandonment and unfilial to their loved ones living with dementia, leading to a preference for home care and not disclosing the nursing home placement to others (Kong et al., 2010; Lee, 2022). While filial piety can increase caregiver stress and burden, leading to a higher risk of abuse (Yan & Kwok, 2011), it can also serve as a protective factor to reduce negative caregiving effects (Lai, 2010). Acculturation also plays a significant role in dementia care among immigrant communities. Higher rates of acculturation can lead to a higher likelihood of receiving timely and accurate information about dementia (Lee et al., 2010).
Despite the cultural factors affecting dementia caregiving, a study by Koehn et al. (2012) challenges the essentialized portraits of the impacts of traditional cultural norms on Chinese-Canadian dementia caregivers. The study found that structural factors, such as system and resource availability, play a more critical role than cultural factors in dementia care-seeking and the lived experiences of Chinese immigrants in Canada.
Language Barriers
Language proficiency is a significant obstacle for immigrants with dementia and their caregivers to access and use healthcare services. According to Biswas et al. (2022), immigrants with dementia often experience a decline in their ability to speak their second languages, which limits their active participation in dementia programs conducted in English. In addition, Lee (2022) discussed how French proficiency impacted the help-seeking behaviors of immigrant caregivers and their access to caregiver resources in Montreal.
A study exploring the role of Limited English Proficiency (LEP) on dementia in immigrants in the U.S. found that LEP plays a crucial role in immigrants' higher risk for both dementia and undiagnosed dementia (Franco & Choi, 2020). This is likely due to the fact that immigrants with LEP have a higher level of stress and depression, leading to higher risks of cognitive impairment. Moreover, their scores on cognitive tests may be affected by their language comprehension skills rather than actual cognitive impairment. Additionally, they may encounter communication difficulties with physicians, leading to undiagnosed dementia (Franco & Choi, 2020).
Language barriers also negatively affect the dementia care for immigrants staying in Long-Term Care (LTC) facilities. Kong et al. (2010) found that non-English speaking Korean immigrants with dementia staying in LTC in the U.S. experienced loneliness due to language impairment and barriers. Moreover, non-English speaking caregivers also expressed difficulties in expressing their concerns and complaints to LTC staff.
Gender and Caregiving Barriers
Studies examining the experience of dementia caregiving among immigrant caregivers indicate that the majority of interviewees are female (Lee, 2022 ; Wezel et al., 2016). This reflects the prevalence of immigrant women as unpaid caregivers.
Furthermore, Wezel et al. (2016) discussed how family care for dementia family members is considered a duty and primary responsibility for women in Turkish and Moroccan immigrant communities in the Netherlands, the caregiving duties are typically assigned to the eldest daughter or the wife of the eldest son, which is similar to the findings of Lee (2022) regarding Korean immigrants in Canada, where the eldest son is expected to contribute to family care to dementia parents, and if they could not do so, the care duties would fall to their wives.
The gendered roles and expectations of female caregivers to provide family caregiving to dementia loved ones also expose them to a higher risk of social isolation. Koehn et al. (2012) found that some female immigrant caregivers were unaware of available dementia support services due to being fully engaged in their caregiving duties at home without an opportunity to connect with friends or relatives with similar care experience. Additionally, Koehn et al.'s (2012) study revealed a potential gender-based power imbalance between male physicians and female caregivers, with male physicians attributing female caregivers' concerns to oversensitivity or lack of knowledge, leading to delays in the dementia diagnosis of their loved ones.
Despite the heavy burden, family care can also be fulfilling for female caregivers. According to Wezel et al. (2016), family care could provide satisfaction for immigrant caregivers as they fulfill their cultural and religious obligations to care for family members and strengthen their bonding with dementia family members. Similarly, Lai (2010) found that the stronger Chinese caregivers identified themselves with filial piety, the more positive and beneficial their perception of caregiving.
Financial Barriers
The financial burden is a significant factor that leaves immigrant older adults with dementia and their caregivers vulnerable. In Canada, family-sponsored immigrant older adults are financially dependent on their sponsors for 20 years, and they are not entitled to full access to healthcare services and basic income security programs like Old Age Security (OAS) and Guaranteed Income Supplement (GIS) (Hulko et al., 2019). Moreover, immigrants may encounter more difficulties in accessing healthcare services due to their socioeconomic status, which includes transportation costs, translation expenses, and the possibility of missing work while accompanying their dementia family members to medical appointments (Ahmed et al., 2016). These factors could explain why Biswas et al. (2022) found that financial constraint was the leading factor that contributed to reduced program participation and loss of follow-up among immigrant and refugee families living with dementia in Canada.
Current Supports
In the following, some current support services in Canada for immigrant older adults living with dementia and their caregivers will be briefly discussed using both academic and grey literature.
For community-based support, dementia service agencies, including those under health authorities and local chapters of the Alzheimer Society, offer support programs for persons with dementia and their caregivers, such as those offered by the Alzheimer Society of British Columbia (B.C.) are available in different languages including Chinese (Alzheimer Society of British Columbia, n.d.). Additionally, some immigrant-serving agencies, such as MOSAIC and S.U.C.C.E.S.S., offer culturally-appropriate dementia education programs for immigrant communities in various languages, including Mandarin, Cantonese, Korean, and Farsi (MOSAIC, n.d.; S.U.C.C.E.S.S., n.d.-a). Local churches also offer spiritual, emotional, and instrumental support, including home and LTC home visits, emotional support, and instrumental support like cooking and transportation, for immigrant communities with dementia family members (Lee, 2022).
For institutional-based support, S.U.C.C.E.S.S. in B.C. offers assisted living and LTC facilities for Chinese older adults (S.U.C.C.E.S.S., n.d.-b; S.U.C.C.E.S.S., n.d.-c). There are also ethnocultural and religious LTC homes in Canada, though their numbers are limited (Bowden, 2021). According to Kohen et al. (2018), some immigrant residents in these homes enjoy culturally-tailored activities such as playing Mahjong and visiting Chinese restaurants, which enhance their quality of life in LTC.
Services Gaps
Despite the current available services for immigrant older adults with dementia, some service gaps are identified from various academic literature.
First, there are lack of culturally and linguistically sensitive components in the dementia care services. From a study by Napoles et al. (2010) reviewing 47 interventions for dementia caregivers across the U.S., only 11 of them were reported to be cultural tailoring for caregivers from different ethnicities. Similarly, another study by Ma & Saw (2020) revealed that although some dementia caregiving interventions for Chinese families in Canada, the U.S. and Australia used diverse tailoring strategies, most of the interventions are surface-level adaptions rather than deep-level adaptations. For example, these interventions typically offered language-oriented services such as bilingual and interpretation services. However, they seldom included culturally specific activities or family-centered interventions that address the roles and structures of Chinese families. Additionally, the study by Biswas et al. (2022) indicated that the program components in dementia care programs in Toronto lacked cultural sensitivity and were inclusive of dietary preferences for ethnic minority participants.
These gaps also manifest in LTC facilities, where there is a lack of culturally familiar food for immigrant older adults with dementia, which cause them to stop eating (Bowden, 2021). Furthermore, despite the large proportion of Cantonese residents in a LTC facility in B.C., language barriers also existed between residents and families and LTC staff, as reported by Koehn et al. (2018), with family members describing the misunderstanding as "chickens talking to ducks" (p.169).
Another major service gap is the limited availability and accessibility of culturally and linguistically appropriate dementia care services for immigrant populations. Apart from the structural barriers, such as financial barriers, identified in part III of this paper that limited access to dementia services for immigrants, Bowden (2021) and Biswas et al. (2022) also found that there is a lack of linguistically and culturally tailored dementia programs and LTC facilities in rural areas, with most of them concentrated in metropolitan regions in Canada. The wait times for admission to culturally specific LTC homes can also be relatively long. Furthermore, Koehn et al. (2018) found that Family Council participation rates among Chinese immigrants in LTC homes in B.C. are relatively low, which may lead to a lack of representation and advocacy for their specific needs and concerns.
Recommendations for Healthcare Social Work Practice
In addressing the above barriers and service gaps, some practice recommendations for healthcare social workers would be addressed at micro, meso and macro level.
At the micro level, it is crucial for social workers to adopt a culturally safe approach to dementia care when working with older adult immigrants and their families. Cultural safety goes beyond cultural sensitivity and involves acknowledging power dynamics in service-user interactions, and transferring power to them to ensure that the intervention outcome is culturally safe (Hulko et al., 2019). To provide culturally safe care, social workers could conduct a biopsychosocial-spiritual assessment (BPSS) (Dean & Poorvu, 2008) to understand the cultural values and beliefs of older adult immigrants with dementia and their families, which may affect their help-seeking behaviors and care preferences. Additionally, social workers should assess caregiver burden and emotional distress in a culturally sensitive manner, particularly for cultures with a strong emphasis on filial piety and familism, such as Chinese and Korean cultures (Park et al., 2020).
Adopting a strength-based and personhood approach when working with culturally and linguistically diverse older adults and their families is also recommended (Hulko et al., 2019). However, social workers must be aware of their own cultural assumptions and avoid reified assumptions, such as assuming that immigrant caregivers must take care of their dementia loved ones within the families rather than using formal services, as this assumption might ignore the structural realities of caregivers' need to engage in the labor market and the older newcomers' restrictions to access affordable healthcare services (Lai, 2010; Ferrer, 2015).
At the meso level, social workers can promote cultural humility within their practice and interdisciplinary team by consulting with colleagues from diverse backgrounds and learning from them (Gottlieb, 2021). In addition, they can encourage the team to understand the cultural aspects of memory loss and care needs by engaging family or community members, thereby shifting the power differences from healthcare providers to ethnically diverse groups (Hulko et al., 2010). Social workers can also act as advocates within the interdisciplinary team by advocating for routine family meetings with healthcare teams to discuss dementia progression, caregiving difficulties, and culturally relevant resources (Park et al., 2020). Furthermore, social workers can act as a challenger in the healthcare setting (Craig & Muskat, 2013) to advocate for families whose cultural beliefs and care practices of dementia may conflict with the Western biomedical approaches.
At the macro level, social workers can collaborate with community-based organizations, such as dementia and immigration service agencies, and faith-based groups, such as churches, to offer culturally appropriate support services to older adult immigrants with dementia and their families. And advocating for caregiving as a human rights issue, particularly for women's unpaid care work, is essential in promoting social justice (Barylak & Guberman, 2015). Moreover, social workers should advocate for more culturally tailored LTC homes and dementia care programs in rural areas to ensure equal access to dementia services for older adult immigrants.
Conclusion
In summary, the above literature review provides insight into the barriers that immigrant older adults living with dementia are facing, it is important for social workers to be aware of the unique challenges that they are facing and advocate for their needs at different levels. Future research could focus more on the challenges faced by specific ethnocultural groups of dementia older adults, the impacts of the power imbalance between healthcare providers and immigrant dementia caregivers, and the roles of informal supportive networks, such as churches or immigrant social groups, in supporting the immigrant dementia populations.
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