|dc.description.abstract||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 society||en