Focused Attention on Positive Aspects of Dementia Care in Culturally and Linguistically Diverse Communities: Qualitative Insights from Australia

ABSTRACT

Objectives

Dementia care scholarship focuses on care challenges and less on positive aspects of care, especially among culturally and linguistically diverse (CALD) carers outside the United States. This article investigates positive aspects of dementia care across eight CALD groups in Australia.

Methods

We analyzed interviews of 112 family carers using a four-domain framework covering: a sense of personal growth, feelings of mutuality, increases in family cohesion, and a sense of personal accomplishment.

Results

Positive associations with care are derived from past relationships, feelings of mutual obligation, valuing changed relationships and enjoying spending time with the person with dementia. Positive aspects of care were not associated with increased family cohesion except in Vietnamese and Arab families; neither was use of ethno-specific residential aged care, except for Greek and Italian families. Religion and spirituality as a coping and comforting mechanism was inconsistently expressed.

Conclusions

The study reveals the multi-dimensional nature of care, what resonates, and diverges across CALD populations. Knowing which parts of the framework apply and which do not is useful for interventions seeking to enhance positive aspects of care.

Clinical implications

Migrant populations are varied and dynamic, and practitioners should be mindful of differences within and between ethnic minority groups.

KEYWORDS:

• Australia
• dementia
• culture
• care
• ethnicity
• positive aspects

Acknowledgments

The authors thank the study participants, expert advisory group, and communities for their time and input into the study. We also acknowledge the bilingual workers Dr Nick Lee, Mariam Yousif, Anu Krishnan, Carlo Guaia, Nehya Ahmed, Silvia Teani, and Julieta Sabates, and the administrative assistance of Fathima Lafeer, Lindell Claff and Jayanthi Denham. We also acknowledge the two anonymous reviewers of this manuscript for their thoughtful and constructive comments. The authors declare no conflict of interest, financial or otherwise.

Disclosure statement

All authors have no other relationships/activities/interests to disclose related to this manuscript.

Data availability statement

The data that support the findings of this study are available on request from the corresponding author, JA. The data are not publicly available due to their containing information that could compromise the privacy of research participants.

Clinical implications

• Examining positive aspects of care is important in balancing against negative assumptions about dementia care

• Migrant populations are varied and dynamic, and practitioners should be mindful of differences within and between ethnic minority groups.

• Across all groups, carers’ sense of personal growth and gratification from caring is associated with self-skilling, becoming calmer and more patient, and finding moral purpose in activities of daily living. Similarly, a strong sense of mutual obligation and reciprocity is positively associated with care. Where groups (e.g., Greek and Italian) had ethno-specific residential care, they could focus on the positive rather than challenging aspects of care but this opportunity was not available to all groups.

• Where groups had limited family support to begin with (all except Vietnamese and Arab families), care did not increase family cohesion. Similarly, religiosity as a way to positively reframe care did not present in our findings.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/07317115.2022.2158768

Additional information

Funding

Bianca Brijnath is the Principal Investigator and Mike Kent an Associate investigator. Josefine Antoniades is the Project Manager. Samantha Croy and Andrew Simon Gilbert are research fellows. Tania Thodis, Carolina Navarro Medel, Thu Ha Dang and Phuong Lan Do are bilingual Research Assistants. This study was funded through the Australian Federal Government Department of Health’s Dementia and Aged Care Services Research and Innovation grants. All authors disclose grant funding received separately from the MRFF, NHMRC, and other government and philanthropic funding bodies.