END-OF-LIFE CARE FOR PEOPLE WITH DEMENTIA

Abstract

Marie Curie Cancer Care is delighted to have led this assessment of end of life care for people with dementia in the London Borough of Haringey. To do this work we have relied on a strong partnership with the local NHS Trust and Mental Health Trust, the local authority and the charities of the National Council for Palliative Care and For Dementia. Dementia is a chronic progressive neurodegenerative illness which has a terminal outcome over an average range of 3 to 8 years (Xie et al 2008). Nationally, end of life care for patients with advanced dementia has been poorly researched, and service provision in the UK is generally poor. This report is based upon: discussions at meetings with health service professionals who have cared for a wide range of people with dementia; conversations with carers of people with dementia; and an analysis of the histories of care received by a small sample of people with dementia who died in Haringey between May 2008 and March 2009. The findings enrich our collective understanding of the experience of care for a vulnerable and growing number of people as well as those who care for them and should help to inform future planning of joint service delivery. It is striking that caring for people with advanced dementia is often punctuated by significant crises. During these times of crisis there is an urgent need for support and carers frequently turn to emergency and acute hospital services for help. This help often triggers an emergency admission that can lead to expensive and inappropriate interventions that take the individual away from their familiar surroundings and those who usually care for them. To improve care at the end of life, we must learn how to ensure care needs are anticipated before a crisis occurs and services are coordinated so that they respond appropriately.