A review of end of life care for people with dementia in UK care homes: staff and family carer perceptions

Abstract

Dementia is the leading cause of death in England and Wales. Since the Dementia Strategy there has been an increasing emphasis on advance care planning, empowering people with dementia to express their wishes before mental capacity is lost, in order to promote a ‘good death’ enabling them to ‘die well’. This literature review of end of life care for people with dementia in English care homes shows that dementia is still not widely regarded as a ‘terminal condition’ and residents of care homes sometimes face unnecessary admissions to hospital in the dying phase. People with dementia at the end of their lives are still not accessing appropriate and timely palliative care routinely and advance care planning is still not part of routine dementia care despite the evidence and recommendations. This denies them the known benefits of reduced patient and carer distress, reduced hospital admissions, inappropriate treatments, upholding the principles of person centred care, decision making and ensuring that people with dementia can expect a ‘good death’.