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

Gary Cheung,Sarah Cullum,April Yuehan Su,Adrian Martinez Ruiz,Blake Yue,Rita Krishnamurthi,Susan Yates,Karen Wu

doi:10.3390/ijerph19031280

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.

Highlights

Dementia is recognised as a global public health priority by the World Health Organization (WHO) and Alzheimer’s Disease International (ADI) [1]
There were a total of 16 study participants, and Figure 1 shows the study participant flow: five dyads of a person with mild dementia and a family member, one person with mild dementia, and five family members of people with more severe dementia
Some of our participants considered dementia and memory decline as more prevalent in older age, none of our participants related dementia to mental health or a folk explanation [9]. This finding is consistent with the results of a study in Hong Kong where 13 out of 15 Chinese participants with dementia interpreted their illness as part of getting older, which might lead to delays in seeking help, diagnosis and treatment [13]

Summary

Introduction

Dementia is recognised as a global public health priority by the World Health Organization (WHO) and Alzheimer’s Disease International (ADI) [1]. 50 million people living with dementia worldwide, and this number is projected to increase to 82 million in 2030 and 152 million in 2050 [2]. A person with dementia often requires support from their family and friends to maximise their independence and wellbeing while living in the community. Well-informed services for both the person living with dementia (PLWD) and their carers are essential. New Zealand is a bicultural country with many other ethnic minority groups, including European 70.2%, Māori 16.5%, Asian 15.1% and Pacific peoples 8.1% [3]. There is evidence that populations of older Māori, Asian and Pacific people are increasing at a faster rate than their New Zealand European counterparts [4], and a significant rise in the

Objectives

Methods

Results

Discussion

Conclusion