Perspectives of Singaporean Chinese patients with mild dementia and their family caregivers towards end-of-life care: Results from a qualitative study

Abstract

Currently, there is little understanding of how patients with dementia and their caregivers view end-of-life (EOL) care. We thus aimed to study and understand the perception of EOL care by patients with mild dementia and their family caregivers. We conducted qualitative in-depth interviews with 25 patients with mild dementia and their family caregivers belonging to Chinese ethnicity in Singapore. Patients’ and family caregivers’ understanding of illness, patients’ preferences for EOL care and caregiver concerns for the patients were discussed. Thematic analysis was conducted on the transcribed results of the interviews. We identified three main themes of person-centred EOL care: planning for cognitive decline and death, supporting patients to die peacefully at home, and supporting family caregivers to cope with patient’s condition. Most patients wanted to die peacefully and be cared for at their home. However, they were reluctant to initiate discussions regarding their future health care and seemed to be in denial that they may decline cognitively in future. Caregiver burden was noticeable for all family caregivers interviewed. . Results highlight three important components that would enhance the delivery of patient-centred EOL care in patients with mild dementia. Strategies based on these components can enable family caregivers and health care providers to plan for and provide patient-centred EOL care concordant with patients’ wishes.