Navigating end-stage dementia: Between the quality of life and life expectancy, A qualitative study

BACKGROUND: Caring for people with end-stage dementia living in the community and restricted to their homes is mainly done by home care units (HCU). Another uncommon program, in Israel, is implemented by the home hospice unit (HHU), specializing in palliative end-of-life care (EOLC). The aim of this study is to characterize ethical aspects, conflicts and dilemmas raised by staff and family caregivers, caring for people with end-stage dementia. METHODS: Qualitative research, using 65 semi-structured interviews (25 staff members and 40 family caregivers), was analyzed through a thematic content analysis approach. RESULTS: Dilemmas regarding palliative care were the main theme, including the definition of the disease as terminal, choosing ‘comfort’ over ‘life-prolonging’, clarifying patients’ wishes, and deciding whether to use artificial feeding. Substantial differences were found between those two settings of care, the main one being the difficulty to predict life expectancy which creates a gap in the caregivers’ expectations, approaches, and goals for EOLC, as well as for making choices and voicing preferences regarding ‘comfort’ and ‘life extension’. CONCLUSIONS: This study shows the importance of developing ethical, felicitous cultural codes for professional staff caring for people with end-stage dementia and their irreplaceable, significant family caregivers. The findings can enable us to develop ethical codes for conducting quality care and practicing equality and mutual help for people with end-stage dementia living at home. KEY MESSAGES: • This study emphasizes the need for ethical codes and cultural sensitivities to provide quality care and support to people with end-stage dementia and their families under home care. • Personalized approaches, training, and support are essential to handle the ethical dilemmas and conflicts that arise during palliative care for people with end-stage dementia living at home.