Primary Palliative Care Research Group

Caring with Integrity

Developing the conceptual underpinning of relationship-centred palliative dementia care in care homes.

People with advanced dementia struggle to maintain relationships and can ultimately experience social death before their physical death. Understandings of, and assumptions about, the effect of dementia on personhood directly affect the way people with dementia are perceived by others, the quality of their relationships, the quality of their care and the quality of their life.

This ethnographic study examined care-giving/care-receiving relationships in a specialist dementia care home.

Findings show that people with advanced dementia continue to experience and respond to the world, and those around them, until they die, particularly in embodied ways.

These findings are used to develop thinking on relationship-centred palliative dementia care. Ethic of Care theory is used to argue why a broad understanding of personhood is vital, not only at the frontline, but also in dementia and palliative care policy, if care is to have integrity.

Funder

ESRC PhD studentship

PhD candidate

Julie Watson

Supervisors

Heather Wilkinson, Marilyn Kendall