Finding positives in caregiving: The unique experiences of Chinese spousal caregivers of persons with young-onset dementia.

Abstract

The experience of taking care of spouses with young-onset dementia has been identified as unique and merits considerations. However, current knowledge about this area in Chinese spousal caregivers is scarce. A qualitative descriptive study was therefore conducted to explore the experience of spousal caregivers of persons with young-onset dementia in Hong Kong. A total of six spousal caregivers of persons diagnosed with dementia before the age of 65 participated in this study. Three major categories were identified: coming to terms with an unexpected diagnosis; multiple unanticipated and ‘early’ losses and finding positives and meaning. This study has highlighted the influence of sociocultural values on the spousal caregiving experience in young-onset dementia caregiving. The findings also have significant implications for the development of interventions to facilitate the spousal caregivers to accept and sustain their caregiving role.