How to adapt caring services to migration-driven diversity? A qualitative study exploring challenges and possible adjustments in the care of people living with dementia

Abstract

Background Research on how services can be adapted to meet the needs of people with dementia with an immigrant or minority ethnic background is scarce. Several approaches have been discussed: offering services adapted to language and culture, adding bilingual staff to mainstream services, and providing cultural awareness and sensitivity training to health personnel in mainstream services. This study seeks to develop more knowledge of challenges and possible adjustments related to receive and provide public care for people living with dementia with an immigrant or minority ethnic background. Methods and materials Through a qualitative design, including 19 single interviews, 3 dyad interviews and 16 focus groups with older immigrants, relatives of immigrants with dementia, and health personnel, we explored experiences and perceptions related to receive and provide care for people with immigrant backgrounds living with dementia in Norway. The analysis were conducted inspired by Kvale and Brinkmann’s three contexts of interpretations. Results Challenges related to language and communication were emphasized as the most fundamental barrier to provide adjusted care; exemplified through cases of isolation and agitation among patients not able to communicate. Care services framed by the majority culture creates feelings of alienation and exclusion. Not having access to specific types of food and the possibility to listen to songs, music, literature or TV programs representing a familiar and homely context may prevent use of public dementia care. Findings also point to differences in moral views regarding life-prolonging treatment in advanced stages of dementia. Conclusion This study argues that to be able to address challenges related to migration-driven diversity one needs holistic care services that addresses individual as well as socio-cultural needs. A linguistically and culturally diverse workforce may represent an important resource, potentially reducing some of the problems related to communication. On a structural level, it seems necessary to allocate more time and resources, including the use of interpreters, when assessing and getting to know persons with dementia with another linguistic and cultural background. However, shared language does not guarantee understanding. Rather, one needs to become familiar with each person’s way of being ill, on a cultural and individual level, including changes occurring living with progressive dementia. Getting to know a person and his/her family will also facilitate the possibility to ensure a more familiar and homely context. Thus, continuity in relation to language and culture is important, but continuity in relations may be equally important ensuring that people with dementia receive equitable care.

Dementia care for people from culturally and linguistically diverse backgrounds: Qualitative secondary analysis of the Aged Care Australian Royal Commission data

“…Care services addressing the individual and sociocultural needs of people with dementia are important for culturally safe care. 11 While there are facilities dedicated to specific cultural or language groups (e.g. ethnicspecific, multicultural and clustered services), 26 family carers of older Australians from culturally and linguistically diverse backgrounds prefer ethno-specific or multicultural RAC services over mainstream services.…”

“…Care services addressing the individual and socio‐cultural needs of people with dementia are important for culturally safe care 11 . While there are facilities dedicated to specific cultural or language groups (e.g.…”

“…bilingual staff, translators) for people living with dementia are key components of culturally safe care 10 . Culture‐specific dementia care has started to emerge in several countries including Sweden and Norway, 11 as well as in Australia 12 . This means that people living with dementia from culturally and linguistically diverse backgrounds have access to culturally familiar food, can maintain traditional practices, practice religious activities and communicate in their first language.…”

Equality of Opportunity for Timely Dementia Diagnosis (Equated): A Qualitative Study of How People From Minoritized Ethnic Groups Experience the Early Symptoms of Dementia and Seek Help

“…McCleary et al (8) described how South Asian family carers often modified environments to account for symptoms rather than seek medical help. Sagbakken describes the challenge to services "to become familiar with each person's way of being ill, on a cultural and individual level" (10).…”

Different senses of one’s place: Exploring social adjustment to home-based care services among family caregivers from minority ethnic backgrounds who have relatives living with dementia

“…However, given the variations in reasons for immigration, cultural, ethnic and socioeconomic status, education and length of stay, minority ethnic groups are diverse and heterogeneous (Debesay et al, 2019). Consequently, studies argue that overemphasising ethnicity and culture might simplify the understanding of care practices among families from minority ethnic backgrounds (Ahmad et al, 2022; Baghirathan et al, 2020; Sagbakken et al, 2020).…”