Exploring the lived experience of people with dementia and family caregivers in China: an interpretative phenomenological analysis

Family supported care has dominated Chinese society for thousands of years. Filial piety is an important value of Chinese traditional culture. However, the capacity and availability of family-based care has changed dramatically because of cultural, social, economic and demographic changes. Therefore, in the context of these transitions, more needs to be understood about the meaning of living with and caring for people with dementia in their own homes. Previous studies involving Chinese people with dementia and their family caregivers which focus on their lived experiences are scarce. This study gives a voice to Chinese people with dementia and their family caregivers as active participants in dementia care research. The study aims to gain insight into the lived experiences of people with dementia and their family caregivers, and how they cope with their new roles in China. It specifically explores the meaning of family responsibilities, social relationships and cultural influences from the perspective of different family members and people with dementia. A qualitative approach has been adopted, using interpretative phenomenological analysis (IPA) in this study. The participants were recruited from in-patient and out-patient lists of one mental health centre in Shandong province, China. The inclusion criteria are people with dementia who have a recorded diagnosis of dementia with the severity of dementia ranging from mild to moderate and have communication capacity to take part in an interview. Family caregivers had to have over 6 months period caring experience to ensure they had sufficient experience to reflect on and comment on. Semi-structured interviews with people with dementia (n=10) and family caregivers (n=14) were conducted in both urban and rural areas of China. The interviews were transcribed and have been analysed using an adaptation of Smith’s (2009) 6 steps of interpretative phenomenological analysis (IPA). There are four superordinate themes or key themes that have been found from people with dementia and family caregivers’ accounts: (a) ‘negotiating the roles’; (b) ‘the meaning of living with dementia in the social context’; (c) ‘the meaning of responsibility in the cultural context’; (d) ‘the settled life’. These themes have been discussed in relation to family responsibilities and wider social relationships, which have reflected the challenges and dilemmas that the participants faced when caring for people with dementia or living with dementia within a specific social and cultural context. The study draws on the phenomenology of care-giving and care-receiving to show that both people with dementia and family caregivers struggle with their family responsibility and their roles; they face a series of challenges in coping with the ‘altered’ life of living with dementia at a time when the traditional family support care system is also changing. It highlights the participants’ stress and burden in carrying out family caring responsibility or living with dementia under the current social situation. It indicates that the traditional value of family responsibility has been influenced by sociocultural transitions, which indirectly affect the quality and quantity of care provided by families. It recommends that while there may be continuing support for reciprocal filial piety, a stronger government welfare system is needed in order to support older people and their families in contemporary Chinese societ