Approaching the end of life and dying with dementia in care homes: the accounts of family carers

Abstract

SummaryResearch into end of life and dying with dementia in care homes from the family carer's perspective is limited. From the available evidence, it appears that family carers find themselves in an unfamiliar situation about which they lack knowledge and experience. Whilst dementia tends not to be acknowledged as a terminal illness by many family carers, they are expected to make end of life decisions on behalf of their relatives. Family carer decision-making is underpinned by values of quality of life, previously expressed wishes, comfort provision and dignity preservation. This is often approached when family carers are grieving for the anticipated loss of their relative and have their own personal needs that require to be addressed. Within a care home setting, a curative care–palliative care split is unhelpful in resolving these tensions and a model of comprehensive care appears a more appropriate approach. This requires ongoing communication between the person with dementia, family members and professionals from the early stages of the condition.