4THE UNIQUE EXPERIENCES OF CHINESE SPOUSAL CAREGIVERS OF PERSONS WITH YOUNG-ONSET DEMENTIA

Abstract

Introduction: The experience of taking care of spouses with young-onset dementia (YOD) has been identified as unique and merits considerations. However, current knowledge about this area is scarce. Understanding more about the caregiving experience of spouses of persons with YOD can provide insights into the development of interventions that can address their specific needs. Methods: A qualitative descriptive study was therefore conducted to explore the experience of spousal caregivers of persons with YOD in Hong Kong. Data was collected through face-to-face, in-depth interviews with six spousal caregivers of persons diagnosed with dementia younger than the age of 65. Data was analysed using qualitative content analysis. Results: Three major categories emerged from the data: (a) coming to terms with an unexpected diagnosis; (b) multiple unanticipated and “early” losses; and (c) finding positives and meaning. Because of having insufficient knowledge about dementia, caregivers often normalized the care-recipients' symptoms of dementia at initial stages and believed that dementia would not affect young people. Thus, they were usually shocked at the time of diagnosis disclosure. The cognitive and behavioural changes of the care-recipients had also forced these spousal caregivers who were still young and in a more active life phase to take up the caregiving role without any preparation. These spousal caregivers frequently reported various unanticipated and “early” losses as a result of caregiving, such as loss of employment, social interactions, retirement plan and spousal relationship. It was evident that Chinese cultural values, such as “interdependence among couples”, “marital obligation” and “fatalism” had influenced how these spousal caregivers perceived their caregiving roles and coped with the demands arising from caregiving. Being influenced by these cultural values, caregivers were therefore able to sustain their caregiving role by finding positives and meaning in life. Conclusion: This study has revealed that the spousal caregiving experience of persons with YOD is unique and is shaped by the sociocultural values of the caregivers. It has significantly extended the current knowledge by providing important insights into the caregiving experience of Chinese spousal caregivers of persons with YOD. The findings also have significant implications for the development of interventions to assist these spousal caregivers to adapt and sustain their caregiving role.