Boundary Crossers: How Providers Facilitate Ethnic Minority Families’ Access to Dementia Services

Abstract

Background Providers who work closely with ethnic minority people with dementia and their families are pivotal in helping them access services. However, few studies have examined how these providers actually do this work. Using the concept of ‘boundary crossers,’ this article investigates the strategies applied by these providers to facilitate access to dementia services for ethnic minority people with dementia and their families. Methods Between 2017 and 2020, in-depth video-recorded interviews were conducted with 27 health, aged care, and community service providers working with ethnic minority people living with dementia across Australia. Interviews were conducted in language and in English, then translated and transcribed verbatim. The data were analyzed thematically. Results Family and community stigma associated with dementia and extra-familial care were significant barriers to families engaging with services. To overcome these barriers, participants worked at the boundaries of culture and dementia, community and systems, strategically using English and other vernaculars, clinical and cultural terminology, building trust and rapport, and assisting with service navigation to improve access. Concurrently, they were cognizant of familial boundaries and were careful to provide services that were culturally appropriate without supplanting the families’ role. Conclusions In negotiating cultural, social, and professional boundaries, providers undertake multidimensional and complex work that involves education, advocacy, negotiation, navigation, creativity, and emotional engagement. This work is largely under-valued but offers a model of care that facilitates social and community development as well as service integration across health, aged care, and social services.

The use of formal care for dementia from a professional perspective: a scoping review

“…Most of the studies did not refer to a theoretical framework [ 6 , 16 – 20 , 22 – 35 , 37 – 39 , 41 , 43 ]. Only four studies [ 21 , 36 , 40 , 42 ] reported to have used a theoretical framework.…”

“…Ethnic aspects were addressed in eight studies as possible barriers to using care services [ 28 , 30 , 31 , 33 , 34 , 36 , 37 , 41 , 42 ]. Those barriers included family obligations, language barriers, and the lack of culture- and religion-sensitive support services.…”

“…Those barriers included family obligations, language barriers, and the lack of culture- and religion-sensitive support services. Informal carers from ethnic minorities in Australia, Denmark and Norway undertake more family obligations to care for a relative with dementia without professional support than other informal carers [ 28 , 30 , 41 ]. Language barriers were described for informal carers from ethnic minorities in Australia, Norway, and the United Kingdom [ 28 , 34 , 36 , 41 , 42 ].…”

“…Informal carers from ethnic minorities in Australia, Denmark and Norway undertake more family obligations to care for a relative with dementia without professional support than other informal carers [ 28 , 30 , 41 ]. Language barriers were described for informal carers from ethnic minorities in Australia, Norway, and the United Kingdom [ 28 , 34 , 36 , 41 , 42 ]. Better translation services and culturally more appropriate assessment tools for non-English speakers (or non-native speakers) and their families were demanded in a Canadian study [ 33 ].…”

Experiences of older immigrants living with dementia and their carers: a systematic review and meta-synthesis

“…Improved dementia knowledge can lessen the cultural perceptions of dementia and create a sense of belongingness for carers and families. This will be one step towards ensuring quality care for older immigrants with dementia, as Brijnath et al 57 noted that communicating clearly and empathetically with PWD and their families is important in reducing dementia stigma.…”