The Lived Palliative Care Experiences of Community-Dwelling Older Adults with Dementia in South Western Ontario

Palliative care is often suggested for individuals with dementia, yet there remains great uncertainty surrounding best delivery of care to individuals wishing to die at home. The aim of this phenomenological study was to understand the experiences of both individuals with dementia who receive palliative care in the community, and their informal family caregivers. Hermeneutic thematic analysis of semi-structured interviews from ten participant dyads revealed key themes. The themes for older adults with dementia were: belonging at home and acceptance of terminal illness; the themes for informal caregivers were: impact of dementia, double strain and home as a source of control over care; and the themes across dyads were: honouring wishes, fear of hospitalization and uncertainty. This study provides a better understanding of how older adults and their informal care providers experience palliative care while also managing dementia. Implications for community-based palliative care practice in South-Western Ontario are discussed