chapter  5
Life stories of family caregiving in dementia
Pages 22

In Chapters 2 and 3 we explored how culture shapes life stories recounting the experiences of Chinese people with a mental illness and their family caregivers. The current chapter focuses on the experiences of Chinese people caring for a family member with dementia. As a degenerative disorder that afflicts the mind yet, unlike mental illnesses such as schizophrenia and clinical depression, is irreversible, the caregiving experience in dementia takes on particular importance as the family member progressively loses the ability to carry out fundamental human activities such as personal care, eating and drinking, and verbal communication. As a consequence, the life experience of the person with dementia becomes strongly bound to the life experience of their family caregiver. Loss of communicative abilities, in particular, means that any account of the experiences of the person with dementia is usually voiced by others. In Chinese societies, this is commonly the voice of the family caregiver, given that the vast majority of Chinese people with dementia are cared for by family members in the home setting (Au et al. 2010; Gallagher-Thompson et al. 2010; Kleinman 2010; Petrus and Wing-chung 2005).