Living with dementia: Why I am thinking of ‘death’

Abstract

Background and aims: Dementia is recognized globally as a massive burden on public health and wider society. It is a major cause of disability and mortality amongst older people. China has the largest population of people with dementia worldwide, accounting for approximately 25% of the entire global population of people with dementia. The study investigated the perceived experiences of care giving and care receiving in China, with one area identified in the data concerning the extent to which the participants discussed death. The research also explored the meaning of living with dementia in modern China, where the economy, demography and culture are rapidly changing. Method: The qualitative approach of interpretative phenomenological analysis was used for this study. Semi-structured interviews were used for data collection. Finding: The paper reports on one specific finding concerning death as a way out of the situation that participants found themselves in. Conclusion: The study described and interpreted one of the specific issues, ‘death’, in the participants’ narratives. This finding reflects how psychological and social factors, such as stress, social support, healthcare cost, caring burden and medical practice have created the participants’ thoughts of ‘wishing to die’ and the reasons why they believe ‘death is a way to reduce burden’. It calls for an understanding, supportive social environment and a reconsideration of a culturally and economically appropriate family-based care system.