The Understanding and Experiences of Living with Dementia in Chinese New Zealanders

Abstract

Little is known about the lived experience of dementia in the New Zealand Chinese community. This study aims to explore the understanding and experiences of living with dementia in Chinese New Zealanders. Participants were recruited from a memory service and a community dementia day programme. In-depth interviews were conducted by bilingual and bicultural researchers. The recorded interviews were transcribed and thematically analysed. Sixteen people living with dementia and family carers participated in this study. The first theme revealed the lack of understanding of dementia prior to diagnosis, the commonly used term of “brain shrinkage” and that dementia is associated with getting older. The second theme covered the symptoms experienced by people with dementia and how family carers found anhedonia and apathy particularly concerning. The third theme highlighted the tension between cultural obligation and carer stress. The fourth theme is about the stigma attached to dementia. Our results provide some insight into ways to improve dementia care for Chinese New Zealanders, including targeted psychoeducation in the Chinese community to improve awareness and to reduce stigma, access to person-centred interventions, and learning about strategies for healthy ageing to live well with dementia, and emotional support and psychoeducation for family carers to reduce carer stress.

Dementia prevalence estimation among the main ethnic groups in New Zealand: a population-based descriptive study of routinely collected health data

“…Third, stigma around dementia is often an issue for non-European populations in New Zealand, which could lead to inequitable access of services and, therefore, proportionally greater underdiagnosis of dementia in some ethnic groups. 25 28 33 There is also evidence that Māori, Pacific Islanders and Asians have lower rates of accessing dementia community care and aged residential care. 2 Therefore, they are less likely to be registered in the administrative health data sets included in this study.…”

“…Māori, Pacific Islander and Asian families are generally inclusive, have a strong obligation to care for their elders at home and are reluctant to admit their loved ones to aged residential care. [24][25][26][27][28] Māori and Pacific Islanders present with dementia at a younger age than New Zealand Europeans 29 and may live at home cared for by their families for many years. 30 31 Given our findings of higher rates of dementia in Māori and Pacific Islanders, dedicated and culturally appropriate resources allocated to meet the formal and informal care needs of Māori and Pacific Islanders and families living with dementia are essential.…”

Do Māori and Pacific Peoples Living with Dementia in New Zealand Receive Equitable Long-Term Care Compared with New Zealand Europeans?

“…It is likely ARC utilisation in Asians is also lower than for Europeans as the DEIR 2020 (Ma'u E, 2021b) reports an even lower annual spend on ARC per person with dementia for Asians than for Māori and Pacific peoples. Furthermore, recent qualitative research in Chinese (Cheung et al, 2022) and Indian (Krishnamurthi et al, 2022) people with dementia and their families suggests similar cultural issues around attitudes towards ARC as for Māori and Pacific peoples. All assessments occurred in the memory service and followed a standardised assessment process.…”

“…When an individual's care needs exceed the support needed (both paid and unpaid) to be safely cared for at home, admission into an aged residential care (ARC) facility is often recommended. However, ARC admission may not be an acceptable option for many families, particularly for those from a non-European or non-English speaking background (Cheung et al, 2022;Krishnamurthi et al, 2022). Thus, even when individuals meet NASC criteria for ARC, they and/or their families may choose to remain living in the community.…”

Developing a Non-Pharmacological Intervention Programme for Wandering in People with Dementia: Recommendations for Healthcare Providers in Nursing Homes

“…In order to prevent these events, effective strategies should be taken to reduce wandering and ensure the safety of PwD. Despite universal recognition of the severe impact of dementia on people’s lives, Chinese people are generally unwilling to discuss dementia and mental health issues with others, and the stigma of dementia and the current one-child family structure in China might leave PwD without adequate support at home, increasing the demand for long-term care facilities [ 15 , 16 ]. However, previous studies have found several major barriers in the current practice of dementia care in care homes in China, including an unfriendly environment, inappropriate care culture in care homes, and poor skills and knowledge in managing the BPSD of dementia [ 16 , 17 ].…”