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Perceived Challenges in Dementia Care by Vietnamese Family Caregivers and Care Workers in South Australia

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Abstract

The majority of Vietnamese Australians migrated to Australia as refugees to escape a war and this unique migration background may affect their ability to access and utilize healthcare services in Australia. Inability to utilize dementia services is associated with higher levels of caregiver burden, higher rates of morbidities and mortality and hospitalization. The aim of the study was to explore the perceived challenges of dementia care from Vietnamese family caregivers and Vietnamese care workers. Gadamer’s philosophical hermeneutics was used to interpret and describe the experiences of the participants. Data were collected from in-depth interviews with six Vietnamese family caregivers and a focus group with Vietnamese care workers using purposive sampling. Participants were recruited from a Vietnamese community care organization in South Australia. Five themes were identified from the data analysis namely: (1) a need for culturally and linguistically appropriate dementia education programs; (2) a willingness and unwillingness to seek help; (3) poor knowledge of health care service availability related to dementia; (4) the effect of language barrier in accessing services; and (5) the main sources of services utilized. The study revealed that Vietnamese family caregivers and Vietnamese care workers held different views on the association of stigma with dementia. Findings also revealed factors that impacted accessing and utilizing dementia services. These findings facilitate a more comprehensive understanding of Vietnamese family caregivers’ needs and have implications for developing individualized support for family caregivers and for consumer-directed dementia services in Australia.

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Acknowledgments

The researchers would like to acknowledge their appreciation to the Vietnamese community in South Australia and the participants of this study. The research was funded by a 2011 Faculty of Health Sciences Seeding Grant from Flinders University.

Author information

Authors and Affiliations

  1. School of Nursing and Midwifery, Flinders University, GPO Box 2100, Adelaide, 5001, South Australia

    Lily Dongxia Xiao, Lesley Habel & Anita De Bellis

Authors
  1. Lily Dongxia Xiao
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  2. Lesley Habel
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  3. Anita De Bellis
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Corresponding author

Correspondence to Lily Dongxia Xiao.

Appendices

Appendix 1: Semi-Structured Questions for Family Caregivers

The following questions will serve as a guide in the focus group or interview discussions. Questions may be asked in a different order or some omitted or added, depending on the participants’ responses.

  1. 1.

    Can you tell me what you know about dementia?

  2. 2.

    Do you believe that dementia is a disease or a normal ageing process?

  3. 3.

    Can you tell me about the person with dementia you are caring for, for example, their history including their medical history?

  4. 4.

    Do you feel comfortable to tell other people that your parent or partner has dementia? Why?

  5. 5.

    When you suspected that your partner or parent had developed dementia, did you seek medical treatment immediately for him (or her)? Why?

  6. 6.

    As a carer for the person with dementia, have you received any support? If yes, could you please tell us what sort of support you usually receive? If not – why not?

  7. 7.

    Do you know any care services for a person with dementia and for you as a carer? If yes, please tell me about these services and whether you have accessed them or not and why?

  8. 8.

    What dementia care services do you use? Why do you believe you need to use these services? How often do you use these services? Are you satisfied with these services? Could you please suggest how to improve these services if you are not satisfied with?

  9. 9.

    What services do you not use and why?

  10. 10.

    Can you describe any problems with language and culture you have encountered when caring for the person with dementia?

  11. 11.

    How did you know how to care and support the person with dementia?

  12. 12.

    What sort of difficulties or challenges do you face when caring for a person with dementia at home?

  13. 13.

    What sort of difficulties do you encounter when you support the person with dementia to undergo medical treatment, procedures or services?

  14. 14.

    What is your plan for the person with dementia if you are unable to continue caring for the person?

Appendix 2: Semi-Structured Questions for Service Providers

The following questions will serve as a guide in the focus group or interview discussions. Questions may be asked in a different order or some omitted or added, depending on the participants’ responses.

  1. 1.

    Could you please tell us your qualification and experience in the community care area?

  2. 2.

    Does your organization receive resources and support from governments or other organizations when providing care services for the person with dementia and their family caregivers from a Vietnamese background? If yes, please describe the resources and support.

  3. 3.

    How does your own Vietnamese background enable or inhibit your work with the person with dementia and their family caregivers from a culturally and linguistically diverse background? Please give some examples.

  4. 4.

    Based on your experience in working with family caregivers, could please tell us whether Vietnamese caregivers feel comfortable to tell other people that their parent or partner has dementia? Why?

  5. 5.

    What kind of difficulties or challenges do you face when caring for a person with dementia and their family caregivers from a Vietnamese background?

  6. 6.

    What kind of care services does your organisation provide for the person with dementia and their family caregivers from a Vietnamese background? Could you please make your suggestions of how to improve care services?

  7. 7.

    What in your perspective are the educational and information needs of family caregivers?

  8. 8.

    What from your perspective are the educational needs of yourself, your staff and volunteers?

  9. 9.

    Are any education sessions for family, staff and volunteers provided by your organization and can you please give details of these?

  10. 10.

    Is there information on dementia and dementia care provided to family caregivers of the person with dementia from a Vietnamese background in your organization?

  11. 11.

    Could you please make suggestions on how to develop consumer-directed community care services in order to maintain the person with dementia at home for as long as possible?

  12. 12.

    Do you believe education sessions for caregivers, the person with dementia, staff and volunteers would be beneficial and what areas need to be focused on?

  13. 13.

    Would your organization and persons with dementia benefit from this education about dementia? What learning needs have you identified for yourselves, your staff and/or volunteers in order to meet care needs for the person with dementia and their family caregivers from a Vietnamese background?

  14. 14.

    Please identify what methods of delivery for education would suit the staff, volunteers and caregivers?

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Xiao, L.D., Habel, L. & De Bellis, A. Perceived Challenges in Dementia Care by Vietnamese Family Caregivers and Care Workers in South Australia. J Cross Cult Gerontol 30, 333–352 (2015). https://doi.org/10.1007/s10823-015-9264-y

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